Written for the world, by Rev. Paul Bonanno, D.D., Ph.D.
On Nov, 13th I woke up in the morning with extreme pain in my mouth, I had to put ice in my mouth to relive the pain. The pain increased and I went to the med-quest office to get a referral- they told me to go to the ER.
I was admitted into the ER, and they worked on me for about 4 hours, Cats scans, blood work, IV’s, you name it, and could not find anything. My face, my mouth, and glands were all swollen, with severe pain. They prescribed me small amount of vicodin and penicillin, and Motrin 800, by Dr. Robin Edwards.
They referred me to Dr. William Hayakawa, to be seen on the 14th Friday.
On the 14th I went in to see the doctor, he took a full scan of my mouth and could not find anything, He prescribed me amoxicillin and some vicodin to hold me over. He then referred me to an oral surgeon Dr. John Stover.
On Nov. 17th I went in to see Dr. Stover, he took complete pictures, and could not find anything, he wanted me to return the next day with the CAT scan pictures from the Hilo Hospital.
On the 18th I went back in he examined me again and looked at the pictures I brought from the hospital. He was stumped, there was a large amount of swelling, and my glands were like rocks, and running a temperature. He said I had a touch of canidiasis, or some kind of yeast infection, He prescribed me some Nystatin, swish and swallow, and vicodin ES, and told me if I have real extreme pain to take 2 if needed. He told me he could not find any cancer, or any tumors anywhere.
On Nov. 24th I saw him again, He still was confused, it seems to me he could not figure it out; now he said he had to take a tumor out of my mouth, and send it to the lab. a.s.a.p. So he wanted me to return the next day for the surgery- biopsy. The strange thing about the whole matter is, I had a lump, in my upper gums, since I had my 2 front teeth pulled in 93’ and I had a space in between my two front teeth, which created a small lump of flesh and my denture was fitted around that lump. The lump of course was noticeable, because it was agitated because of gritting my teeth from the Nov. 12th, incident. It did not make any sense to me, and scared me, thinking it was going to be cancer. Now if there wasn’t any tumors found in a the X-rays and Cat scans, why was it so important to take a lump out of my mouth, when my whole mouth was in pain? He called it a
pyogenic granuloma, a supposed benign tumor. Why was there such an urgency of the Lab work, and a biopsy?
On Nov. 25th was the nightmare day. The surgery day was like being in a live movie, I was awake, but he put 5 holes in my arm, not just holes but he dug around looking for a vein, and then my arm was swelled up in 4 places. After the 4th hole, I looked at Him and said “what are you doing”? I left that office bewildered, and I didn’t know which hurt the worst my arm, or the hole in my mouth. Then I had to wait a week for the results, which wasn’t an easy week, even though I am a preacher, I should have had pure faith in our Lord. It still was very stressful, even though I am under a prescription of 5mg.Valium, 3 times a day by my PCP Dr. Richard Lee-Ching.
On Dec. 2nd When I went in the office Dr. Stover, he had a vindicating attitude, he changed, he was different, and he would not even look at me, or examine me. He flashed the report in my face and said it was benign. My girlfriend asked him to just feel my glands, he bent over and said I can’t do any more for you; most of my patients don’t have any problems. He told me I had to go to a neurologist, and he would set everything up for me. He never did, I set up an emergency appointment with the neurologist. I had to go back in the office, and retrieve from one of the nurses, and get the name of who they were going to call. I was not going to leave in this situation that fast, under these conditions and treatment. I have never experienced such a non-compassionate treatment like that, from any doctor in my life!
On Dec. 5th, I was able to make an appointment, though many phone calls, with Dr. K. Ravi Pillai.
The neurologist looked at me, read the reports, and said why didn’t the oral surgeon treat you? I to this day, cannot figure it all out. He told me my mouth was completely inflamed, and it would take about 3 weeks to heal. And to set up an appointment one month from today, an prescribed me Percocet 7.5/500 every 6 hours and gave me samples of celibrex to last, and he could not figure why the doctor would let me leave out of his office in the condition I was in, or we think, that maybe he took something out, that he shouldn’t have in the first place.
On Dec. 23rd, I had an early standard monthly appointment set up with my PCP Dr. Lee-Ching because of the holiday. He realized I was running a high fever and my mouth was still inflamed, and he also knew I was out of antibiotics; He prescribed me Cephalexin 500 every 6 hours, to knock out this infection.
On Dec. 29th, I tried to make an appointment with Dr Pillai, and the staff said he would not be back till the 13th. So I called my PCP back and told them the problem and that I was running out of pain medication, they gave me a prescription, to refill the Endocet generic 7.5/500 to get me through till I saw Dr. Pillai again.
On January 13th I called, to find out about, what time my appointment will be. The service said Dr. Pillai will not be back till the 15th.
On January 15th I went in about 9:00 to sit and wait to see the doctor, if I had to camp out there. They handed me a sheet and told me to go to my PCP and set up other arrangements, maybe to go to another neurologist. I went in to see my PCP Dr. Lee-Ching, he looked in my mouth and gave me some samples of a new antibiotic called Zithromax that should last for 10 days. I told him about the pain, and how bad it was, and the Dr. told me to start taking 2. The nurse tried to set up another appointment with Dr.
Hayakawa again, while I was there, a dentist, and I knew he would not take me, he didn’t know what to do the first time around, and he never called.
On the 16th we tried to get an appointment with Dr. Kamath- neurologist, we tried a repeated amount of phone calls, through the 20th, and they refused to let me see him.
On Jan. 20th I was told to call Dr. Pallai’s office to see if he would be back soon, they said he was very sick and it might be a long time.
On Jan. 23rd I called my community case worker, Vollie- Assess Health, in Honolulu, and she prayed with me and tried to comfort me, hoping Dr, Pallai would return.
On Jan 26th I called the office of Dr. Pallai again, they said they were closing the office down, and they didn’t tell me why. I called back my case manger Vollie at 1-866-486-8030 ext# 205, she told me to go to my PCP and ask to go to a specialist, Dr. Lee-Ching suggested going to an eye, ear, nose, and throat, prior to this conversation. I went in to the office, and got a referral to see Dr. Modzelewski at 10:00am on Jan. 29th.
On Jan. 27th I found out Dr Pillai died,later I found out he was in a coma. He was one of the nicest caring people I have ever met, compassionate and gentle, and smart, and it broke my heart when I heard about it. He was the only one that was treating me, and understood what I was going through.
I have not been able to where my teeth in 2-1/2 months
I have not been able to eat solid food or chew for 2-1/2 months.
I have been going through extreme pain for 2-1/2 months.
I haven’t slept right for 2-1/2 months.
I have had a fever and an infection for 2-1/2 months.
I have lost a lot of weight, “muscle weight” and muscle mass, being I have been pumping iron for 23 years, and have a lot of weakness, throughout my body for 2-1/2 months.
I can’t drink hot coffee, or any orange juice, any tomato products, because of the acidity.
On Jan 29th I went in to see Dr. Modzelewski, a brilliant man, he said all I had was a bad yeast infection, and that all the antibiotics I have been taking made it worst. And he gave me a prescription for Diflucan 100mg, to be taken daily for 7 days, and should knock out the yeast infection, and go back to my PCP and pick up another prescription for pain, and also to find a “caring dentist”, and proceed with another Neurologist, as he pointed to my upper jaw, in the face and sinus cavity. He also was wondering about atrophy being I have not used my jaw muscles for so long. I had to go to the Queens Health Care center at 670 Ponahawai St. # 122 and made an appointment with Alfred Bowles on March 4th and that was the earliest appointment I could get with a neurologist.
On February 5th, after awaiting if the Diflucan was taking any effect, so I stated searching the yellow pages, for a good caring dentist , I found one with the Christian Fish, meaning a Christian doctor, and being a minister, and priest of the Christian faith, I gave a call to a Dr. Garret K Uehara # 959-9800, I spoke about my situation with Christian to Christian love, with the secretary, she told me I must go to Honolulu, to seek not just a dentist but another oral surgeon, during our conversation, she suggested Dr. Joan Greco (Hiranaka) at the Waimea Oral Surgery, at 65-1230 Mamalahoa Hwy, Suite 10, Kamuela 96743 and that I am suffering a critical appointment, as I was told, if I am not taken or given proper care they could be held libel. I spoke with the nurse and she asked me to fax what has been going on day by day, and I also faxed Dr. Pallai reports, he was my attending physician at the time. My PCP could not help in this particular field. The nurse also wanted me to get the records of Dr. Stover, and the lab reports, and the X-ray (panerex) of my mouth and mail it to Waimea. Also to call Hilo Medical Center and have them
deliver the Cat scans to North Hawaii Community Hospital by courier, which will not get there until Wed the 11th, I mailed out the information with Dr. Stover’s report and lab and x-ray on Friday the 6th, so that it should be in the doctors hands by Tues, the 10th. I finished the Duflucan with no effect, I am still in severe pain, all through my mouth, and then again there was a mention of cancer. I also picked up Dr. Modzelewski’s report and as I read it over, I came across, many slanderous accusations, when he met me for about 10 minutes. I walked into his office with a bible, not a bat, I guess this man can sum up a person, and give a full assumption of a man’s makeup, and personality within 10 minutes. This man has no idea of the love and compassion in my heart, towards all humanity; and my total devotion to God, and our Lord and Savior Jesus Christ. Also he has no knowledge, of me being an Ordained Minister, an Ordained Priest, a Chaplain, and a Pastor of an Internet Bible Based Church, with a World Wide Prayer Ministry.
On February 11th I felt very week, I have lost 8 pounds, I have drank everything from a blender, for 3 months, I have continually been eating everything that is entirely logical to my health and well being. I drink about a gallon of soy milk enriched with added vitamins; I take double dose vitamins tablets, also extra E & C. I drink about 20 ounces or more of tofu a day, sometimes ½ dozen hard boiled eggs every other day. Sometimes about every third day I will drink ground beef, with greens, zucchini, carrots etc. I have stopped eating canned tuna, for some reason it doesn’t agree with my mouth. I also mix in soy protein powder once a day. I drink a small amount of coffee, cold in the morning, I don’t use sugar at all, except maybe some honey every once in a while. Usually the soy milk I drink contains no sugar, but lately I have been buying it by the half gallon which contains about 9 grams per 8 oz. glass, which is not normal for me, but it has been on sale and I have to get as much as I can, with what I have. Every morning I usually drink some sort of fruit, bananas, papayas, apples pears, etc, there is a special section in the KTA, that has bruised or damaged discount fruit, or I will go to the farmers market, downtown or a Wal-Mart, to get discounted fruit. Oatmeal is a major everyday thing, usually mixed with soy milk. I have also realized I must have prune juice everyday because of the medication, and the added protein powder, and oatmeal which expands in my system, but that is the main purpose, so more or less even though I am drinking food, the expansion of the product in my system becomes a solid. And my stool is solid. I have considered everyway possible for a healthy way to survive, without being able to chew anything, with the means and knowledge I have. I don’t drink any alcohol, it is against my faith and what I believe within the realm of Christianity, and it also does not digest in my system. It is hard for me to even drink carbonated soft drinks it seems to agitate my mouth.
The point of the matter is I am feeling weaker and weaker by the day, I try to maintain my physical body by working out with weights, mostly every day, for the last 23 years, and I also have a considerable weakness in my training. I am getting more tired day by day, and I still don’t sleep properly. My friend called Dr. Greco this morning worried about my physical weakness, they suggested I go to the emergency room and get an IV. They are going to receive all of my records that day,Feb 12th, and hopefully, they will give me an appointment.
On February 12th I made a call to Dr. Greco’s office, to see if they had received my panerex and files, They told me they haven’t even picked up, my c-scans from North Hawaii Community Hospital yet, and that was 2:00 pm in the afternoon, They said again they would call me back. They never did. I thought this was a critical appointment?
On February 13th the day of a broken heart, I had to call to Waimea office, about 10:30 and they were closed; from the recording I realized they close every other Friday and that Friday is today. So the recording gave me the other reference number to the Kona office at 334-0333, I talked to a woman named Jasmine, and the doctor “did” want to have a consultation with me. Then she asked how I was going to pay, or what type of insurance I had, I told her quest, then she said I’m sorry we don’t take quest, As I dropped back in my chair I almost fainted, I told her I had to call her back.
All the mailing, all the phone calls, and all the picking up of records, has been done for nothing. Why didn’t any of this get asked in the beginning? Why ask me today? I would say it is partially my fault, but I was told if it is a critical appointment that they have to take me, or be held libel. I guess it doesn’t matter in this situation; I called back to Dr. Garret K. Uehara knowing I could openly talk with the Christian secretary that referred me to Dr Greco in the fist place. I got a different girl on the phone, she did a lot of checking, and the only other person that could take me is Dr. Stover. I remembered that I shook in fear, when I just had to go into his office on the 6th to pick up the records there. She kindly asked me to call Dr. Greco, and see how much would it cost. I had to catch my breath, and also figure out where to send my records to also. I called back to Dr. Greco’s in Kona and asked Jasmine, how much would it cost for the consultation, she told me 250.00, and if she did any work on me I could probably not be able to afford it. So she is sending all my records back to my PO Box. I called Vollie my case manager and left a message for her to help me about 11:30. At this point in time I believe I need to be sent to oral surgeon and or a neurologist in Honolulu immediately.
On this same day February 13th I faxed all “my” records to Vollie, she said that would help. This way she would have a day to day list of everything that has happened up until now. This way she could add it to all her notes to coincide with the doctors reports, and would be beneficial to me, and a plus for my favor, when Vollie would bring it to her supervisor. We are still in a critical position here, and she told me she would not be back in the office until Tuesday, the 17th, because of the Holiday of Presidents Day on Monday the 16th. I explained to her how I felt, and she told me to go to the ER, in Hilo, if need be. The thing is my thinking at this time, is not the same; I haven’t been able to pray for my requests, as usual, which is breaking my heart. This is a major part of my life and my devotion to God, and all others that suffer, and it is a major part of this church and ministry. I am able to send the right words, because of my experience with the bible. The infection is running through my entire system, and I can’t feed my brain with enough nutrients to be able to truly concentrate correctly. I would rather not go to the ER, unless if I hit the floor, or completely feel I need to go. Plus the fact, I don’t feel up to going and have all those needles stuck in me, and have them go through all the same process, as before. I am really not up to it. I need a specialist, I have no antibiotics at all, and I can feel my glands swollen in all parts of my neck and the top front of my chest. I had some hope for Tuesday that I might see some doctor in Honolulu.
On Tuesday the 17th after leaving some messages, I finally got a hold of Vollie abut 2:45, she explained to me that all the paperwork is on the desk of the Chief Dental Arena, Mark Grier, and that he would make a decision to send me over there to Honolulu, to some specialist, or make another arrangements, for my care. Vollie called back and needed my PCP Dr. Richard Lee-Ching’s contact number. I called back later that day and left the number on her voice mail. I called back again on Wednesday the 18th still waiting for an answer. She told me it is all in the works, and we are waiting for Mark Grier’s decision. She told me if you don’t here from me by Friday before 3:00 to give her a call.
On Friday the 20th, about 2:40 I called Vollie, and she explained to me that her supervisor, has not been in her office for Thursday and Friday, but sometimes she comes in on Saturday, and that she is e-mailing her now, she asked how I felt, I explained I felt better than yesterday, because Thursday all through the morning I could not walk, and could not keep my balance, I guess it was all catching up to me. I even went to my church, New Hope, and I haven’t been there in a while, since this affliction, and the beginning of the building of my own church. On Wednesday night the 18th, I drove to the church to get prayed on, for God’s healing, by the team. I did feel better that night, both mentally and physically, but the long drive that night, and the maintenance of my light workouts was too much for me. I have now realized that I have to wait another horrible weekend of not knowing what is wrong with me, and if anyone is going to take care of me, or if anyone cares besides Vollie, at all. My life has changed, I have done some research myself, and I may have a Periodontal Disease, or an Oral Inflammatory Disease, but that is only speculation. Meanwhile the bills are mounting up; I now I have all the stress of the bills, and how am I going to pay for everything and with what, and how, is a torture in itself. I am the one that has to go to the store and take care of this house, plus the fact and I haven’t gotten one donation from anyone for this church, and of course I haven’t been
able to work, since all of this started. Just dealing with the pain is also another issue, it changes from day to day, from worst to light, and I don’t enjoy being on these pain pills.
On Monday February 23, I called Vollie in the morning and I was hoping for an answer. She told me both her supervisor are going to call Dr. Greir at 11:30am and they should have an answer, I explained to her that I am critical, I am 50 years old and I don’t feel right all through my body, and why has it taken this long for a decision. I also explained if this infection reaches my heart I could have a heart attack and or something else that could destroy my heath for the rest of my life. I felt a different tone in the conversation this time, there seemed to be no Christian love there; it was more or less in my opinion a change of attitude, from a woman that prayed for me, over the phone for 20 minutes a month ago.
On Tuesday February 24th, I had to see my regular doctor, and I gave Him an up date of the first 6 pages of this report. He refused to let us both speak, he gave me my prescriptions for my valium and for pain, he knows I will be seeing Alfred Bowls at the Queens Health Care Center on March 4th “ if he flies in” at 670 Ponahawai St. #122. He is a neurologist “surgeon”. And he also knows now, that I was awaiting a decision from the Chief Dental Arena, Mark Greir, to be sent to Honolulu to see a specialist. I was running a temp. at 100.1. Then he requested an HIV test, and does not realize I have been totally celibate for 5 years. He does not know I am a priest, He has no idea about the church, or my Christian values towards sin, and my dedication to God and mankind. And I have been seeing him regularly for over 8 months, obviously he does know me.
On Wednesday the 25th, still no calls from Honolulu, I left a message with Vollie, at 10:20 still no call back. I went to the Hilo Medical Center to pick up my blood work, and I needed to have someone explain the work that was done, but the secretary said there was no one around. That I had to wait for someone out of the ER to explain them, I wasn’t feeling up to it, I almost checked myself in that day.
On Thursday the 26th, very early I received a phone call from Vollie, she told me they are not going to send me to Honolulu and to go back to Dr. Stover, who refused to treat me anymore and sent me to Dr. Pillai, She also said Dr. Pillai’s report does not say anything about any inflammatory disease stated, when I have the report in front of me. Stating “The possibility of inflammatory disease of the jaw and gums has to be considered” What is going on here? First of all I am scared to death of Dr. Stover, his took a chunk out of my mouth for nothing, because he did not have any other answer, the operation day was a complete nightmare, when it took 5 times to get a sedative in me and poked and probed 4 times which was very painful, If I wasn’t so afraid, or if Lynne was there, I would have gotten out of the chair then. I have pictures of my arm, after the surgery, and they are not pretty. Vollie was more or less giving me the ultimatum go to Dr. Stover or suffer, and she keep on drilling me to go see him, over and over again, and kept on asking me, over and over are you going to keep the appointment, with Dr. Alfred Bowls, I keep on saying of course, if I make it. Also I said that I would pray on seeing Dr. Stover, but I feel now that is totally out of the question. I have never had a conversation like that in my life.
I called my quest worker, Mr Takiue, at 933-0343, and told him a summery of what has happened to me, he told me I do not have to see anyone I don’t feel comfortable with, and to admit myself back to the ER, and start all over again
On March 1st we decided to call Dr. Pillai’s office to see who replaced Dr. Pillai, seeking a neurologist. We heard some information that a Dr. Leo Maher a neurologist, was going to visit for the first time at the Queens Health Care Center Clinic, the same place that we had an appointment on March 4th to see Dr. Alfred Bowls, We immediately called over there and tried to set up an appointment, knowing he was a regular neurologist, and that was the same name that was given to us on the back of the card on January 29th, when we made the appointment with Dr. Bowls. The name was given to us just in case I could get some money and go to Honolulu, which that would be the doctor to see. I did not think I was going to make it through over a month, of suffering without going to the ER. The pain and fever was too great and I was getting weaker by the day. But I just pushed myself, and didn’t want to go through the whole ER thing, most likely for nothing, but at lest I would have had some penicillin pumped into me.
On Tuesday, March 2nd, the Queens office called back and said we did need a referral from Dr. Lee-Ching’s office. When I called for the referral I almost got our head bitten off for asking Gail. But we did have a scheduled appointment at 12:00 with Dr. Maher on the 5th of March the day after, in the same place, as Dr. Bowls.
On Thursday March 4th after waiting over a month to see a doctor, I had some hope finally, but we sat with him for a few minutes, and he said he could not do anything, he was a brain surgeon, and he really didn’t know anything about the mouth, all that waiting, and all that hope was gone. I was in tears, but I felt Dr. Maher, the next day could possibly help me. Dr. Bowls expressed the fact that why didn’t your regular doctor know or inform you I was the wrong type of neurologist? We were all confused on that one. And I remember my doctor looking him up, in the book for the medical plan.
On Friday March 5th, we went in to see Dr. Maher, He read all the reports, and he new most of the doctors. He kind of told us the truth that I was given the complete run around; he really got to the brass tax of everything. He told us the true insight of everything and the reason why and the what for, I was getting bounced from doctor to doctor. He also made it a point this test for HIV was a wrong thing to do to anyone, first I was supposed to sign some kind of release, then we should have had some sort of a consultation with my PCP doctor on my history and ethics etc., which none of that was done, also he explained that if you do go for the test it would be in your records and destroy your credibility as a human being, and a minister and pastor, also the fact as he showed me the high white blood cell count, of the blood work taken during the visit to the ER, He told me if my doctor looked at this he would know there is no possible way for me to have HIV, with that high of a white blood cell count, fighting the infection. Plus the fact of the mental strain and stress my PCP doctor added to my situation, and Dr. Maher made it a point for me to not go, at all. Now this whole mouth situation was not really a neurological problem, I have some kind of infection in my mouth and He wants me to see Dr. Frank Pien, who comes to Hilo somewhere, most likely the hospital, and that they would set up an appointment for me to see him. Next for the pain, Dr. Maher made it a point for me to see Dr. Jeff Wang in Honolulu; he did not want me to see anyone else. We drove over to Med-quest to talk to my worker, all he could do was give me the phone number for the nurses to call, to set me up for transportation to Honolulu, and we drove back and gave the number to the nurses. So they are all working on these two doctors, I
hope by the grace of God, I get this thing in my mouth diagnosed, treated, and cured, soon.
On Monday March 15th 10 days later after my appointment, I called over to Dr. Leo Maher’s office and had to call several times till they picked up the phone, no one ever heard of me in the office. The computers were down, but still no one could find any information on me.
Also on Monday March 15th going down the stairs I did something to my foot, it wasn’t a twist, it felt like a wrong movement with my foot no pain, but felt strange. I went outside and put on my sneakers and stood outside and looked at the water, and prayed.
Also on Monday I called over to the Queens Health Care Center, and asked if there were any notes from Dr. Maher there, or if there were any arrangements made for my appointments with Dr. Frank Pien, or Dr. Jeff Wang, they still did not receive any information, and also I was told Dr. Maher takes all his notes and records with him and they still weren’t sure about Dr. Pien coming in to Hilo, at any place. But they had an infections disease doctor coming in on the 23rd, to the same place, Dr. Russel Wong. I made an appointment for 11:30. Because I still didn’t know what was going on with these other doctors after 10 days of more waiting.
On Tuesday March 16th I keep on calling to Dr. Leo Maher’s office, and finally got through, I talked to the secretary, and she told me point blank that HSMA will not pay for your plane fare, it will all have to come out of pocket, and that she can’t even make the appointments on the same day. Well that was wonderful news, why would Dr. Maher make it so specific to see these particular doctors, and know I could not afford to see either one of them, and who is this secretary that knows the funding of the HMSA. I told this secretary that I made an appointment with Dr Wong, on the 23rd at Queens in Hilo, for the infectious disease, but I said go ahead and make the two appointments with Dr Pien, and Dr. Wang, even if I have to sell my truck to get the proper care, and I will fly there. Plus the fact, I still need a pain doctor, and this secretary said well if you are going to see Dr. Wong for the infection, you will not need a pain management doctor. Dr. Maher ordered me to see Dr Wang for the pain, now the secretary is making the doctors decisions. I asked for Dr. Maher himself, to have him call me, and just talk to me, and tell me what is going on, she said he would, but he never did.
On the same day March 16th, I then went to the ER in Hilo as requested by my worker to start all over again weeks ago, plus my foot was all swollen and hard to walk on. I figured I could at least get an IV of some kind of antibiotic to kill some of this fever and infection, and get this foot looked at in case I broke one of the bones inside and get 2 things done at the same time. I got Dr. Morrison, he really seemed to care. I gave him all my notes, and all the doctors’ reports. And he asked if he could keep them all, I said that is why I made the copies because I knew I had to come back here sometime, because nobody seems to be doing anything for this critical situation. Then he looked at my foot and my whole front of my leg was red, and he looked at me and said what is that? I said don’t scare me, I never saw that before. Still my mouth hurt more than my foot or they where about the same. Temp. was 99.6 and dropping a few degrees each hour, because I was freezing to death. When they took my temp. in the admitting room it seemed to be normal, but I was freezing in that waiting room. My blood pressure was way down. And they did take all kinds of blood tests, and cultures, to track down what was going on in my mouth. They set me up for an IV in my hand, finally Praise God! Hours later the Dr.
came in and said he could not find anything in the normal blood tests, but to call him in 36 hours for the results of the cultures, and then he said he might have to call me back in here. He then gave me almost a whole bag of saline in the IV because I was hyperventilating? So I sat there another hour, for water to be pumped into my system, then the nurse guy told me he was probably giving me the saline because I was not eating right or dehydrated. In the beginning both Dr. Morrison and I had a conversation about giving me an IV or some other antibiotic for possibly a staff infection, or an oral inflammatory disease, or something along that line of a similar dental infection. And they give me water and a band aid, and sent me home. The X-rays showed no broken bones in my foot. Now here is the clincher, I wanted to start all over again and this time I had good reason to, first of all I needed a new doctor, someone that new about infections, or feet or someone that at least cared about me, or even wanted to know what I did for a living, I didn’t want to be referred back to Lee-Ching, because he didn’t know how to help me, and I was also hoping for another referral to someone else because I did not want to go through the torment on the 24th again, by Lee-Ching’s office for the 4th or 5th time. I also was advised to go back to the ER by my HSMA worker to start all over again when my dental worker was almost forcing me to go back to Dr. Stover, because they didn’t want me to go, or pay for a specialist in Honolulu. I was also advised by Dr. Leo Maher that through the series of events with that HIV test, that Dr. Lee-Ching ordered, because of no releases were signed, no confrontation, and no discussion about my habits and my way of life, before sending me to get an Aids test, plus a few other points, he did not want me to go back to Dr. Lee-Ching again. But how am I going to explain this to Dr. Morrison when he was on the phone, and he couldn’t figure any of this out, and didn’t know what to do with me, and in all the confusion I didn’t have the guts to ask him to give me another Doctor’s referral.
On March 17th I called my PCP Dr. Richard Lee-Ching and asked them what I should do should I keep my appointment on the 24th, or follow the directions that I must see my doctor within 24 hours on the hospital referral. I was told just to come in the normal time, and they also told me they cannot refer me to Dr. Russel Wong, unless they get some paper work and notes from Dr. Maher.
On Thursday March 18th I called over to medical records and the Lab, and I told them that Dr. Morrison wanted me to call for the results after 36 hours; one person told me it would take 5-7days! Medical Records didn’t have them yet.
On Friday March 19th I called again and they said I could come down and pick up a copy for 20 dollars, I told them I picked up my blood work copies before for .80cents. But that is only if you are going to take them to a doctor, I said I was, I needed them for Dr. Wong on the 23rd. but I couldn’t walk at the time, and felt so week, and keeled over on my truck seat on Thursday, couldn’t move, could not catch my breath, and almost fainted. I told them I had to keep my foot elevated with a heating pad on it, and it does take the swelling down, but as soon as I stand up, it swells up again. Now it seems that my right unhurt foot is swelling up too. So they said they would send out a copy or fax my report to the Queens Health Care Center, for Dr. Wong.
Now I waited another weekend with no one to call, I still don’t know what is wrong with me, no one will tell me what is going on, I can barely walk, or think, or sleep, I am
in severe pain in both my feet, and in my mouth, and now my jaws hurt, were I open and close my mouth. I’m week, I’m scared, and I am still suffering, and nobody is doing anything about this again.
Monday March 23rd, I had my appointment changed to 9:30 instead of 11:30, which might not make a big deal for them, but it does to me, I live in a house with an downstairs shower with windows that remain open on the Hamakua coast, and it makes a big difference whether you take a shower at 7:30 or at 9:30, anyway we finally sat down with Dr. Wong, he told me most of my patients die, was his opening statement. I told him about my glands and lymph nodes in my neck and upper chest, that they hurt from time to time. My temp. was way down, and every time I get that ear thermometer it is always at least 2 degrees lower than normal, which doesn’t make any sense at all I have been running about a constant 100 or more, and it varies from day to day, some days I can’t get my balance, or get out of bed, and some days I can get outside and do something, I haven’t been able to work out, since the 17th of this month, and I have been getting weaker and weaker and losing a pound a week. And this has been going on for 4 months. And my blood pressure has been very low too. Nothing is normal. He checked me completely of all my glands and nodes, he didn’t think I had cancer, and he really wasn’t sure about the mouth thing, he Had no idea about the swelling in my feet. Then he told me he treats pain with Elival an anti-depressant, and then I almost hit the ceiling, I told him my grandmother freaked out on that stuff and died. Then he also mentioned that I might have a neuropathic pain, because of the burning, I tried to explain to him it isn’t a burning pain, it aches like a mouth ache, and under my lower teeth, and in my jaws where they move, and the whole inside of my mouth is raw like chopped liver, I can’t bit down on anything, and when I do like partials of broccoli for instance, unconsciously, in a drink, the next morning, I am in severe pain all through my gums. When I bend over I have shooting pain, and that started after Dr. Stover’s biopsy. He looked at my gums but he said he had nothing to compare them to, so he wasn’t sure about them. Then he realized that my glands under my mouth were defiantly swollen, and I had to explained to him they have always been that way for 4 months, sometimes they get harder and more painful and sometimes they are just swollen, by now I am just used to them being the way they are.
I wasn’t very pleased with the whole appointment he really didn’t have any answers; the only good point was he did give me some antibiotics that he said would help my mouth. Clindamycin HCL 300 4times a day. I have been off antibiotics for about 2 months because my PCP didn’t know what to give me, he said we tried everything. I went over to the lab and got my blood tests next store in the same connecting office, man that hurt, the woman looked down at me an said “I’m sorry, well my dear you have a rolling vein.” He ordered a test for Sjogren’s syndrome, and my mouth and eyes are not dry, and for rheumatoid arthritis which I got over night?
On that same day I was desperate, I will do anything to get to see Dr. Pien, and I needed to talk to Dr. Maher, I keep on calling till I got the wonderful pleasant nurse, and I asked why wasn’t I called for the appointments? I knew she didn’t make them. She said well I didn’t think you could afford it, so I didn’t make them? “Lady as I said before I will sell my truck to have this situation diagnosed and treated, and at least find out what is going on in my body, I also explained that both my feet were swollen and I needed to talk to Dr. Maher, please. I do not sleep because of the fear of the unknown, and no one is
giving me any answers, and I am a minister, and priest with pure faith in God. Two hours later she called me back and made the appointment with Dr. Frank Pien at 2:00 and if I would like to come in and see Dr. Maher at 10:30 on the same day. I said yes, she also told me that the pain Dr. Wang does not take HMSA, I said that is fine. She said twice, if you can’t come please call us, I said don’t worry I’m coming if I have to crawl there. Then she said well I am going to call Dr. Lee-Ching your PCP and let Him know. Big mistake!
On March 24th, I have to go and get my months supply of valiums, by my PCP Dr. Lee-Ching now I was started on them by him on a regular basis, since my last surgery in July, I have been taking 5 milligrams 3 times day for about 8 months for anxiety, also he took over the pain medication after the prescription from Dr. Pillai, back on Dec.29th and when he didn’t return from India, for my appointment on January 13th, we realized he was not coming back, and is still in a coma not expected to live. My PCP took over giving me the same prescription. First of all I don’t feel wanted or comfortable with him or his nurse, his nurse has botched up at least 4 prescriptions in the last 4 months and which I had to go to Long’s drugs and have the employees fight for me, because they all knew me in there. The nurse keep on writing the prescriptions wrong, and I had to stand there uneasy for about an hour as the girls would have to pull out my files and fight with my doctor telling what they have been giving me for the last 8 months of the valium. A month ago, I had to go back into the office twice, for the nurse to change my prescription, the way it should be written, the second time I went back in there; she refused to change it again. So then I had to go to Longs and told the girls they are doing it to me again. And they got it fixed again. I ask myself why, is it because I am white? Or are they doing this to get rid of me? Or do they just treat everyone the same way?
Now I felt uneasy this day, for some reason something didn’t feel right, we went in as usual my temp was 99.4 which is about normal, I lost 4 more pounds since my last visit, both me and my girlfriend went into one the office rooms and waited, I said how are you doing doc? No answer, he started to treat us like we were inhuman, he was all upset about the phone call about the appointment of Dr. Pien and that he wanted to be in the loop, He sat there and said I am your PCP and everything has to go through me, and then he threatened both of us, we just sat there in amassment, he says if I try to make another appointment with out going through him first he will drop me. We had to sit there like puppy dogs and just say we are sorry, we are a bit confused, but what ever you say. Then he stormed out of the room and went to the nurse and wondered why he didn’t get any notes from Dr. Maher. Well Dr. Maher made the referral for Dr. Pien, and Dr. Maher didn’t think I was going to ever go back to him in the first place, but I couldn’t get another doctor. In that entire trauma he never looked at my foot or feet, that was ordered from the hospital in the first place. Then we had to sit with the nurse, in fact she was quite nice that day and it took her about 3 times to write the valium prescription right, and I even had to show her my old bottle. What a day that was. I have never seen so much mistreatment compiled together month after month, if I could get a regular doctor to see I would, but my only other chioce was to go to a clinic for the poor and that would have not worked out. So now I am right back where I started, but now I more upset that ever before.
On March 25th I started to feel a sore throat. On the 26th I came down with the flu. With a fever on top of a fever, I could not move, or think, or walk, I thought I was going to die.
On Tuesday March 30th my birthday, I had to do all this preparation get all my files together, print off copies, and get each new blood work and reports, and my CT scans from the hospital on Monday the 29th. And pick up my blood work from the same office of the Queens Clinic. Still I am very week and cannot do much at all. I haven’t been to the gym since the 17th. I had to catch the 8:30 flight so I arrived about 7:30 at the airport. I am afraid of flying so I needed my pastor and friend to take me over for spiritual support, and would save me the parking fee. Don’t forget I am very broke and no one assisted me with any cab fare, so I am almost down to nothing. I had an appointment with Dr. Leo Maher at 10:30 that was arranged by his secretary and when I finally got in to see him after 11:00, he said to me “why are you here? I told you before that I cannot really do anything for you” I asked him then why didn’t he call me and just talk to me, about the doctors appointments with Dr. Lee- Ching, and Dr. Russel Wong, Dr Frank Pien and Dr. Wang? He told me he had to fire his secretary because she wasn’t doing things right. I expressed the fact that how she treated me, and how she never made the appointments in the first place, when I first called on the 15th, and the 16th, of March, and I asked for her to have you call me, to let me know what is going on. Here I was waiting for an appointment back in the beginning of March not at the end. And then she didn’t give you any of my messages, but made an appointment for me to see you, so I had to get up a 5:00am to see you for nothing? What is going on now? Dr. Maher looked at me and said that is why I fired her. Then I said you never got any of my messages, he said none. Then I explained she finally made the appointments on the 23rd because I was so desperate, and then I told him, she said “well I have to call Dr. Lee-Ching,” both me and Dr. Maher looked in amazement why would she do that?
“I told him to be quite honest she and that phone call almost cost me my life. Where would I have gone, to get my prescriptions re-filled, if he threw me out then? I probably would have had a heart attack right there in the office. I wanted to tell you also that I couldn’t find another doctor for a PCP, only a clinic, I wanted a regular doctor just to take care of me and have some compassion, and I couldn’t find one, so I had to go back to him because of the hospital referral too, and that Dr. Lee-Ching never even looked at my feet.”
Dr. Maher looked at the blood work, from Dr. Wong and explained to me that, my Anti-Nuclear Ab Titer was double it was supposed to be 40 and it was 80 so I defiantly have an infection. I said to Him, “can you call over to Dr. Pien and open the door for me and tell him about me’? He said he would. I have to walk over there and can you have one of the secretaries give me a map to King St. He said to me why don’t you ask Dr. Pien to be your PCP? I said one thing at a time; I am already to upset.
I then walked a good mile or more with all my stuff, heading for Dr. Pien’s office it took about an hour or so anyway. I walked in and filled out the papers and they started to mention I had to have a referral from Dr. Lee-Ching, and I told them Dr. Maher made all the arrangements and the referrals and he will or already has called you, nothing more was said. I went in and showed Dr. Pien all the charts and blood work and he was amazed at how long I have been shuffled around all this time, and how long I have been suffering. He wanted to know if I had a place to stay because he wanted me to have that nuclear bone scan right away, so then on top of that he said he would have to do an MRI probably after, but that would take a while to clear, and then I will be spending the next 6 weeks in the hospital for and IV of antibiotics, nice huh? Well at least I found a doctor
that knows what is going on, and I had to spend a lot of time going from doctor to doctor, to figure that everyone is wrong, and finally I had to get off the big island and go to Honolulu to get proper medical care, so he arranged for me to have the nuclear bone scan in Hilo hospital on April 5th Monday, were they inject a nuclear fluid into your vein and then take pictures 3 hours later. And then it will take a few more days for the results and then I will be spending hopefully in an outpatient IV set-up for 6 weeks. What a nightmare, talk about fear, what am I going to do for now?
On April 5th I went in at my appointed time, I had several pictures after the injection of the nuclear fluid, then I was told to come back at 2:30 and then they put me into a machine which took about 67 pictures as the screens went around my head I was getting a little claustrophobic, and then they took several close up pictures of my jaw right up to a large camera. The man that took care of me was very nice Jack; I think his name was, very respectful and meticulous.
On April 6th I received a message from Dr. Pien’s office that hey did find some inflammation in the bone and that I had to have IV’s for the next 4 weeks.
On April 7th I retuned the phone call and I talked to one of the nurses and they said they would call me back, Joanne called and explaned to me that everything has to go through Dr. Lee-Ching’s office and that I would either be having home care, or I would get my IV’s from a particular place daily, like the Hilo Surgery Center.
I called Gail at Dr. Lee-Chings office and she didn’t even know I went to Dr. Pien, even though I told her about the flight, and the trip and all the problems that were caused over this appointment in the first place. I told her about the nuclear bone scan and what they found, I asked her to call over to Dr. Pien’s office, she said she would and didn’t even bother to ask me for the number, and then just with a poor attitude, just hung up.
On April 9th Friday, I called back to Dr. Piens office and asked a woman called Helen what was going on, this has been almost 5 months I have been waiting, she told me Dr Lee-Ching went on vacation and there was nothing she could do till the 13th, then I was wondering isn’t there any back up doctor taking over for any emergency. I told her I was out of antibiotics from Dr. Wong that seemed to be helping. She said she would call me back and never did, because I wanted also to ask about the back up doctor for Lee- Ching. Then I tried to get a hold of Dr. Maher, who had me go and see him in the first place, I started calling him since the 7th, because I really could not depend on Gail, because of all our prior episodes, each day I called and the mailbox was full, and no one would answer the phone. I know he lost his secretary and he was running around to compensate for the loss. What no one understands is the waiting, and the not knowing, I am suffering from complete anxiety, and to have to go through another weekend of not knowing, This whole episode was very hard on me, waiting for approval, wondering about home care and being stuck by needles everyday, or if I have to drive everyday to a certain place, or if it would be approved or not, and when, was driving my whole system down. I am getting weaker and weaker, and I don’t have any energy left, and even with my faith in God and Christ, it was still very hard on my thinking, I could not concentrate, I normally would not worry, but I started to, and the pills don’t effect me anymore and the pain is increasing, and it doesn’t seem like the valium works either, this waiting was adding more and more stress to the situation.
On the April 13th I called I called over to Dr. Lee-Chings office and Gail said she got the report and that she would work on it. Then I called over to Dr. Piens office and then I got Helen again and she said that Dr. Lee-Chings office had just got back from vacation and
that it will take some time to get things approved, I tried calling Dr. Maher’s office by way of Dr. Liem to give him a message to call me, I wasn’t sure what was going on and maybe Dr. Maher could push this through a little faster than Dr. Lee-Ching.
On the 14th I called again over to Dr. Pien’s office and they told me that someone will call me and tell me what to do. Dr Maher called late that day and with our conversation of caring and friendship, he reassured me that things have to get done, and not to worry. He said Dr. Pien is the best infectious disease doctor in the state, and he will get things done. He told me a bone infection is serious, and this needs to be attended to. I thanked him for his compassion and taking the time to call, he was the only doctor I could trust, and Dr. Pien.
On the April 16th, Friday, meaning I have to go through a horrible weekend again, of not knowing, my friend called Dr. Pien’s office at 7:30 and someone was there, and then Joanne called back at about 9, and both my girlfriend and her had a nice caring conversation, trying to remind her that it has been going on for 5 months and we have been shuffled from doctor to doctor, and this waiting is effecting me, both physically and mentally, and told us they are just waiting for approval from HSMA and which would best suit the situation, and also told us that it might not take one antibiotic they might have to try a few, and we are looking at 4 weeks of treatment. And that she herself will call Gail, and make shore the ball was rolling.
On the 19th, Monday, to be perfectly honest I can cannot take this pain anymore, my mouth is killing me, and I am running out of pain pills, and I have so much fear inside of me, not that I have lost my faith, but the valium doesn’t work anymore, and the pain pills don’t work anymore, and I am scared, not only of my doctor, but the when and where of when I will get treated. I don’t sleep, and I sit with all my bibles in prayer and look toward God and Jesus for help. I pray at night for all different prayer networks to set my mind at ease, because there are people out there with a lot more troubles than I. Still the fact the way Dr. Lee-Ching threatened me the last time, because of Dr. Leo Maher referring me to Dr. Pien which saved my life, and Dr. Lee-Ching got so upset with me, that he was not in the loop. I never have seen a man act like that, how can you threaten a man when he is trying to stay alive? Dr. Lee-Ching had no answers to my affliction. And if I didn’t meet Dr. Maher, at the Queens Clinic and if I didn’t go to Dr. Pien and use every amount of money I have left, I would have never found out what was wrong with me. I am worried about my finances to. I can’t pay many of the bills. So I am dealing with where am I going to live now, which is more stress and more pain and fear and worry, and less sleep. Here I am a man of God with a lot of faith, and I am afraid of making an appointment right now, with my monthly visit, with Dr. Lee-Ching. Last month he said he would drop me, and I do not have anywhere to go, and I don’t think the ER will take care of my prescriptions, to set my mind at ease. The waiting is much more a mental conflict, and this pain is increasing and I haven’t said anything to anyone, and when the stress and fear set in, the pain increases. I am also afraid now to talk to the nurse Gail, because of the way she has treated me in the past, over and over. It is a shame that a man such as me has so much fear of his doctor and staff after 9 months of them taking care of me. My body is so weak now, I cannot even or want to go anywhere, I have trouble walking up my street, and no one seems to understand. When you are this weak you can’t fight for yourself, and I do give all my troubles to my Lord, but I am dealing with people here, and that office scares me so much, I shake to even think about it. I need those
antibiotics and it doesn't seem that anyone is taking care of the situation for the clearance. I know things take time. But for Lee-Ching to go on vacation and not have a backup doctor for me, and make me wait an additional 6 days is not right. Here I got diagnosed on the 6th, and I should have been treated by now. And everyday that goes by I get weaker and weaker and this infection in my jawbones gets worse and worse. And this has been going on for 5 months. No one understands that I was a body builder for about 23 years, and everything that I had (strength and muscle mass) and worked for, is gone, and every time I look in the mirror I almost want to cry. Plus now my face, what is happening to my looks, not wearing my dentures for 5 months, and now I have atrophy in my jaw muscles along with the rest of my body. All I can do is keep depending on my God, and the Lord Jesus Christ. All things work out for good to those who love God. Romans 8:28
On Tuesday April 20th I first called over to the Hilo Community Surgery center @ 969-9669 they said they have never heard of me. I then called Gail, and she told me that she just sent the report over there today. She told me to call and talk to a woman named Alice, because I just called over there. I called back to Hilo Community and asked for Alice and she said that she received the paperwork (today) from Lee-Ching’s office, and that she had Dr. Pien’s report since the 6th and that your treatment and the whole situation relies on your PCP, and they just sent over the paperwork today, I explained to her about the vacation that Dr. Lee- Ching took, but the point of the matter is this, before they went on vacation I called Gail on the 7th, and she said she would call Dr. Pien that day. Now to wait this long and knowing my critical condition I believe the whole office of Dr. Lee-Ching just doesn't care about my life at all. Look at the way I have been treated in the past. Why, I don’t know, he knows how bad off I am, and to put off documentation this long, is quite ridiculous, and very strange. Also Alice said to me your doctor is not pushing this issue along, I asked her to explain that, she said Dr. Lee-Ching is not pushing for you to get your treatment. Then she took down my number and said she was going to do everything she could on her end. Then I called Dr. Pien’s office to ask if he could be my PCP, and they said that would not be logical because you are off the island.
You see now I am faced with a bigger fear, the fear of Dr. Lee-Ching throwing me out of his office on the 23rd and not giving me my prescriptions, which as my system is now and being so weak, I could not take the mental and physical strain of even thinking about it. He threatened me last month, that if I ever made an appointment with out him knowing about it, he would drop me. So now this office has not only cost me more strain on my body and life, I have now a bigger fear, where would I go? And what would I do about my meds, how will I survive with this pain, and this intense anxiety?
Also on the same day I called my Quest worker Mr. Takiue. We had a long conversation about my situation and he asked if I took his advise about going to the ER and starting all over, to get a referral to a new doctor, I told him what happened on March 16th at the ER, and that Dr. Morrison gave me the same doctor for a referral and I tried to get it changed but he was on the phone and I so upset I couldn’t talk to him about changing the referral, to a different doctor. He told me to keep my appointment with Dr. Lee-Ching for my meds, on the 23rd, and to seek another doctor through HMSA, but I would have to wait till the first of the month. So I didn’t have any choice, and I also told him how afraid I was of Dr. Lee-Ching, and that I have been having problems with that office in the last 5 months.
On Thursday the 22nd My girlfriend called over to the Hilo Community Surgery Center, she spoke to Anita, which told her, that she called Gail on Tuesday the 20th and asked her if she would call over to HSMA and get just the authorization number, and to call back, which would speed up the process of HSMA calling her. Of course she didn’t, so here I am waiting again, now I am shaking, and the pain is increasing and the stress is building even more. Why couldn’t that woman Gail just call over to HSMA and get the number?
Then Alice called back I explained the situation and she said Anita is working on this. Then I had to call an Attorney, and explained my situation and she was kind of informative, but how do you explain 5 months of torture in a few minutes, I tried to tell her about the hold up, and a short summery of what has been happening, and how I felt, about this situation and my nerves cannot handle the circumstances any longer, that all of this could have been completed before they went on vacation , but to wait to the 20th to send the paperwork and then don’t bother to follow up with the authorization number is wrong. The Attorney told me to call HSMA myself and get the authorization number. Alice called me back and told me Anita is working on it, I believe that she herself is calling for the authorization, All Gail had to do is pick up the phone and call to speed up this situation a long time ago. I told her I was shaking and the pain is over bearing, and the valiums are not working, and the pain pills are not working, and I am scared to death, about my appointment tomorrow, an the when and where these IV’s are going to start. My body is too weak to deal with this whole situation. She told me to try to calm down and they should be able to get me in there in the morning. And don’t worry, Anita will handle it, we are all ready and have been since the 6th, she also said that Anita had to call over to Dr. Pien’s office, and get some other things taken care of.
I tell you this in my personal opinion even with my faith, I thank God that I have made it this far, and maybe because with my strong faith, I have made the distance. I mean who could just take not eating for 5 months drinking everything out of a blender, being a slave to a doctors call, and on top of it to live in fear everyday, of not knowing what you have wrong with you, and when you do finally find out, you ask yourself will the treatment be approved in the first place. Plus walking around without teeth, and not being able to chew, talk about being humble, it hurts even when I have a conversation with a person, from the vibration, the stress also that now my upper plate will not fit now, because I am missing a section in my gums, from a biopsy that did not need to be done, in the first place. I also have atrophy in my jaw, how much can a man of God take? We are looking at one month of IV’s and then a reline which I have to pay, and my gums are so sore that it will take a long time for me to start chewing again, and to get my strength back. I have lost so much weight already, and I can barely do any moving around or to much physical anything, an I haven’t even mentioned the stress of the bills and the rent, and gas and food. I have been living out of the bruised fruit and vegetable bin at KTA for a long time, and if there is nothing in there I don’t eat, except oatmeal, and eggs everyday, and that gets to be a little bizarre. I have also been dealing with all the credit card calls everyday, if I didn’t have Christ in my heart I think I would have died.
On Friday, April 23rd, I received a phone call from the nurse at my doctor’s office, at 9:20 in the morning. Gail the nurse at Lee-Chings office, acted in her regular way and personality, she tells me I have to go to the surgery center right away, then I must get there as soon as possible, first I am to weak to be running around, to rush down there and to get a stick pin, for an IV put in my arm, first of all I am weak, and next I asked do I have time to get dressed? She says you have to go now, like as if I am healthy, and showered, shaved, and ready to go. I have been wearing the same bed clothes for at least 2-3 days, and then I tell her I live in Papaikou, and she says that is only ten minutes. I thought it was very humorous she has no idea where I live or how I feel or even what type of condition I am in. Not to judge but the words that came out of that phone were very cold. Gail tries to tell me she have been doing everything in your power to get me the medicine I need, when with all the conversations with the corresponding doctors, and nurses, I know she did nothing from the 6th to the 20th, when the surgery center was doing all the work on Thursday the 22nd to push this through before the weekend. Now I have to take a shower, shave and get some clothes together to look respectable. First of all I can barely drive, in the first place, I need time to pray, and get my mind, body and spirit ready, for this has been too long of a waiting tormented affair, that I believed was going to be a simple procedure.
I then arrived at the surgery center and the anesthesiologist has not even arrived yet, First of all why do I need an anesthesiologist? And why am I going through all this stress to hurry up to get to the center? Was everyone just standing around waiting for me the way Gail described it, of course not. Then I had to sign all this paper work, and I didn’t even read most of it. I just wanted to get things going, I wanted to get healed.
Now here is where everything changed, it was as it seems I was hit with a sledge hammer and didn’t even know I was going to get hit. Then I go in and they take my vitals and a woman comes in and tells me I have to go through minor surgery to put a tube in my arm a foot and a half long into my body, through x-ray and guidance right near my heart. I began to shake and said, I am not going through that, I went into the bathroom and threw up, and started shaking, and freaking out, then one of the nurses tells me my insurance will not pay for a daily injection. So now I am threatened with my life in the hands of who knows who, I don’t know this anesthesiologist, and now I have to do all of this myself with my girlfriend’s help that is disabled in the first place, and can’t even unscrew the antibiotics? What next, no one tells me anything, everything was going to be simple I would drive to the surgery center Monday through Friday and get a bag of antibiotic’s but no, I am poor or as some one else would say indigent, and they will not pay for this. But they can pay for the surgery for the tube to be put in, it probably would have cost the same if I just went in and got an IV every Monday thru Friday, so as I’m told I have no other choice, either do it this way or die. Big choice, haven’t I been through enough? So I have to go through a life treating infection causing surgery and I sit at home and do this myself, now I am a doctor, what is this world coming to? After I waited five months to find out what I have. Which I had to on my own (through God and Dr. Maher, and Frank Pien) in the first place, use my last bit of money, and go to the best infections disease doctor, and walk to his office with swollen feet on my 50th birthday in Honolulu.
All of this menagerie is called home care, then I had a wonderful nurse come in and spend three hours on how and why to do this, to the point what to watch out for, and went through the whole procedure live, step buy step, they gave me and my girlfriend all of the
medicine, packed on ice, and rack for the bag, and all the added syringes full of saline and heparin to keep the line in my arm open, and then we were on my way, then I had to rush to the doctors office and get yelled at, because someone called Dr. Lee- Ching and told him I caused a seen in the surgery center, because I was not informed by anyone, of what was going to take place, and if any one was supposed to inform me it would, or should have been from my PCP! And now Dr. Lee-Ching is yelling at me as if I did something wrong to save my life. And he was also saying that I am wondering off trying to make appointments on my own and I was referred by Dr. Leo Maher, to see Dr Frank Pien in the first place, and if it wasn’t for him, I would die. I think we have a little problem here, I can not take the stress now, and I cannot take what is happening to this 5 month test or trial on my faith, in God and Christ, what do these people think that I am superman? I have more faith than most, but between my mind and body I am dieing, and each day that goes by I am that closer to death. I am not worried about death, to me death is a friend, but I do not want to be lied to, uninformed, and treated like rubbish.
Then my doctor tells me that my infectious disease doctor doesn’t know or if he is shore what I have or what antibiotic to use. What am I living in a circus and I am the clown being shot out of the cannon? When the nurse called me and told me personally there is an inflammation in the bone of your jaws, on the 6th, now what is really going on here? I asked what are you trying to say? He says Dr Pien is not sure what you have, or what antibiotic to use. Now I am really confused.
Now after the confrontation of my doctor who doesn’t know who I am, and doesn’t even know I am a man of God, and doesn’t care, plus after seeing him for almost a year, finally writes out stronger prescriptions which are as I right this story are still not working. Then as he leaves the room and he says more than twice, if anything goes wrong don’t call me, call them. Call who? I have learned to keep my mouth shut with Dr Lee-Ching he just tells me to shut up anyway. So now who are them? The nurses, the surgery center, the ER or what? I thought to myself you are my PCP, and he made such a big deal about that everything must go through him first, now he doesn’t want anything to do with this situation. This is what he got all mad about in the first place, and now I am “not” supposed to call him, I don’t understand any of this and the treatment and the attitude.
Now for the fun part, I had to drive around totally stressed out, to get my meds filled, don’t forget he changed the pills to something even harder to get, that hardly anyone stocks, and now the stores are closing, and you have to find a pharmacy that not only carries them but that takes my insurance too. Now you got to here this one, I go to a pharmacy that has this particular drug store it is written for 120 count, the young girl say’s to me well we only have 60, and we don’t give out partials and you would have to forfeit the rest. So you are telling me I have a prescription here for a hundred and twenty, and you only have sixty, and because you are short, I give away the medicine to the air that I need to save my life? Yes she said. I have been to many a pharmacy and they always give you a partial and then when the shipment comes in you go and get the rest. Am I living on the planet earth, or am I dealing with satanic demons? All I want to do is get home and go to sleep and get my meds before I have to drive back anywhere else with one arm. I finally found a drug store that carries this particular brand, and they were going to close any minute, I finally got my prescriptions filled, I finally got home and slept till the next day, which was the first time I did that in 5 months. Today was the worst day of my life.
As the days go on I am still not able to eat, regularly, and I am still losing the weight, over 5 months ago I was built like Rocky, very healthy and full of energy, but now walking and doing general things has become very hard. Also when I look in the mirror I begin to cry, I can’t even defend myself anymore.That is a heavy burden to take. But as I examine the situation it might be God is striping me of self pride, which as a man of God does not need. I don’t know when I will be able to chew again, or to even get my weight back or when, you see I worked out for almost the last 23 years and each time I would leave the gym I would feel calm. The endorphins would kick in and I would have an element of peace, but now the stress is overwhelming and it is very hard to be a minister with the faith that I have to really be on the positive side of things, I never worried before, my faith in the Lord was real strong and still is, but there is a thing call spiritual warfare and the evil one is trying to feed my mind of fear and worry, I have accepted it all because I believe I am suffering for Christ, so in a way I should be joyful, it says in the bible that the suffering you do now, you will receive a glory later if you endure it as a good solder of Jesus Christ. I don’t know when I will be able to put my teeth back in my mouth, and be able to chew again, don’t forget Dr. Stover took a nice portion out of my gum line out for nothing, in which I will need a re-line of my denture, which I have heard, will also come out of my pocket. The loneliness has set in extremely. I can’t get out like I used to, and just to talk to my friends in the second hand shops, or the people at the gym. And I can’t even make it to my church a few blocks away. My heart is broken, my family does not understand, at all, my mother tries and does help in her own way, but I wish she was here with me, I know I would be if the situation was in reverse. The fear of my doctor also adds to the situation, I can not even sit down with Him and talk man to man without him yelling or criticizing me. It is very hard for me to sit there and just take his ridicule and say nothing in return. And every visit that I see him a great fear comes over me. And I do begin to shake when I enter his office. This shouldn’t be. I am out looking for care and compassion not to be treated like another number. I need a person to talk to like my good friend Pastor George, he did come over once and did realize the battle that I am fighting for good, and that the prayer work that I do everyday, an the Sunday sermons I do take many hours. As time goes by and as the weakness set in it becomes harder and harder, to read and to even concentrate, every time I think about the time for the IV, I begin to feel uneasy, there is a list a mile long of all the complications that can happen, but we know God is in control of it all. I figured that my doctor raising my valium prescription would help and it does, to a point. But now I am thinking how do I get off these things, and he also raised the pain medication, which will be a bigger fight to get off them. And if I have a doctor that treats me like a number, I don’t know how he will treat me on my next visit. If you don’t take in enough food and the proper vitamins it will affect your thinking, you are what you eat, and if you can’t eat properly, you will not think properly. It is awful tough as I am now writing to constantly drink all my food for so long. The products like ensure contain mostly sugar, so all those are out, the diabetic ones are far too expensive. I think the lack B vitamins, especially B-12, would help. I have been trying to purchase soy milk that contains B-12 but it is far too expensive. I do try to get the best soy milk with the most vitamins that are on sale. It becomes very boring not to be able to eat a regular dinner or chew on a hamburger; it has been a rough road. Even with my God close to me. I know he is there and I can feel Him.
On Sunday April 25th Brook came over and changed the dressing and helped with the IV, and went through a trial run again with me, showing me step by step what to do, I requested some new brown wraps, that go over the seal, because by now they were starting to get dirty. I also requested some more alcohol pads because we were going through a lot of them. I also had a problem with pushing the stick pin into the bag because you need two hands of strength to push the pointed thick tube in, I tried to push real hard on Saturday the 28th, and it seemed to hurt my arm. But there is a twisting trick to it, but some of the bags are still hard.
On Thursday the 29th I had to call over to Pharmacare and tell then one of the bags were defective. After a few conversations I talked to a man named Rusty and he got the directions and came over, he brought the supply’s but then again I still needed the brown wrap and the alcohol swabs, but he didn’t have any, then he wanted to me to sign this piece of paper telling me I was originally informed of this procedure, and I told him I wasn’t. The nurse mentioned once home care at Dr. Piens office on March 30th, and as I spoke to them almost everyday it was explained to me this was going to be a simple thing, I go into a place Monday through Friday, and get a bag administered, it would take about a half a hour and they would be closed on the weekends, which rested my mind. Dr. Lee- Ching did not mention anything at all about any procedure until the day of hell, at 9:20am April 23rd, were Gail said they were going to put a pick line in, which I had no idea what that was. So back to the paper work, while my neighbor was honking his horn because he could not wait a few minutes to get into his parking spot so we didn’t really have time to discuss this paper work, so it goes like this, if I don’t sign the paper, I don’t get the medicine. I all ready signed for the delivery of the stuff, now I am forced to sign this. Something I do not understand, and I had my friend read it, and it all comes down that I agree that I was informed of all of this. Anyway I had no other choice but to sign it.
On Friday the 29th I had to call Dr. Lee- Chings office the pain in my mouth was getting worse, and I have had a weeks worth of therapy, and here I am thinking maybe the pain will go away through this treatment, the pills work for about an hour or two and then the pain starts up again. I have read the pamphlets on stress related pain, so here I am worrying about the bills the credit cards, my arm, infection, etc, that can add to the pain. So I spoke to Gail and as her usual self she talked back and forth to the doctor and made a suggestion to come in Saturday for a half a day, she did mention that they increased the dose from 7.5 to 10 mg, then the conversation changed, the doctor says that if I take more than prescribed I will not have enough at the end of the month, I told her I defiantly understand that, so then I mentioned that maybe I should take 1-1/2 every 6 hours, she said she would talk to the doctor, then she came back on the phone and said I am going to mark this down as 6 a day, being you are going to take 1-1/2 every 6 hours, and when you run out come and see the doctor. I said OK and thanks.
On Friday the 29th Lonny was supposed to come over and change the dressing, in fact Rusty called and he asked if he would come over pickup the bags and stick the thick pin into each one of the bags and then bring them back, I told him that would be a little unsanitary and I think we have mastered the fact of the twisting and pushing combination. He was surprised that Lonny was not there
already. I called over to the Hilo Medical home care and asked for Lonny, and she was on another line and they said she would call back. About a half hour later a girl called Claira called and said she would be there about 1:00 to change the dressing, I informed her again I need some more alcohol pads and some brown wrap. Things went well everything looked good, and then had to put that dirty brown wrap on again, this time she gave me a longer tube so I can hold it myself. She was a nice caring person.
On Saturday the May 1st I called over to the center and asked if someone could bring me a new wrap, and some alcohol pads, it took a while for this poor girl to find my house, and she got lost and had to call me to get directions. So she just dropped off a clean white wrap to cover the tubes and the rest of the area, Praise God! I felt so bad for her; she was sweating so badly when she came to the door. Of course the gauze was to thick and it did make my arm sweet so of course infection sets in and then we are in a heap of trouble. When the night gets cold I am able to wrap up the area because while I sleep I scratch and I am living in a panic about pulling the lineout so it is best that it is covered.
On Monday the 3rd of May I found the pharmacare building and I still needed the brown wrap that covers all the lines clamps and of course the main valve. Which cannot be infected well I talked to a girl named Dawn and she called it coban and they were out of stock. That’s some off the most important things I need and they don’t have any. I needed some more alcohol swabs to clean the valve that we inject everything into it with. So they gave me a box of them. So they gave me the netting to cover the apparatus but the netting was too tight, and it was cutting off the circulation, Dawn says we make different sizes, ok that is a nice, and that is nice to know. So she cut up 4pieces an put them in the bag, Praise God!
Now here is where the icing on the cake takes form, Dr. Pien wanted to put me on Clindamycin ,which Dr. Wong the other infectious disease doctor gave me orally purposely for the mouth on the March 23rd. Ok now we have to examine this, Dr.Pien was wondering how am I going to have Paul go to the surgery center, or the out patient Hilo center, 3 times a day every 8 hours when they are running regular business hours to get an IV, this is where Dawn at Parmcare was confused, by telling me this, so it opened the doors that Dr.Pien in Honolulu, didn’t know that I have a dangerous picc-line in, and he is figuring a way how is he going to get this new medication in me, 3 times a day but when she told Dr. Pien Paul has a picc-line in, that Dr. Lee-Ching ordered and why he ordered it in the first place, I still don’t know. Dr. Pien decided to let the medicine I have that doesn’t do anything run out, even though it was giving me side affects and not doing anything for the pain. So now the new plan would be let Lonny (nurse) change the bandage and start me on the right medicine on Friday May 7th, and take it myself 3 times a day being I have a picc- line. But the medicine INVANZ, I have now does not have to do with anything about infections in the jaw, it is basically for Intra-abdominal infections, community acquired pneumonia, or acute gynaecological infections (female), and is not working for me, it does not make the pain go away, it makes the pain worse, it makes me dizzy, causes damage to the kindneys, and I cannot even type, I feel light headed which I did mention, at the surgery center, an I have become very hyperactive, even taking valiums, it seems they don’t work either. I am still up at all hours of the night and can’t sleep correctly. And as when I do wake up I am in a complete panic at 5:30 or 6, I even have to water down my coffee because it makes me to nervous.
On Tuesday the 4th of May I started witting down all the questions that I wanted to ask Dr Pien himself, I talked to Doris and told her I needed to talk to Joanne, Joanne is the caring one, in which I met on my first visit and we got along great. And I told Doris I wanted to take to Dr. Pien, she told me to call back later. I called later and asked to talk to the doctor, but Helen answered the phone and she always treated me with disrespect, or a common repeat calling person. And I guess she was tired of taking my calls, I asked her first who ordered the picc- line she said Dr. Lee-Ching, ok now who ordered the INVANZ, She said Dr Pien, (now in my mind I was thinking to my self why is Dr. Lee-Ching’s name on all the bags of INVANZ,) then I wanted to logically talk to Dr. Pien, and tell him what has been happening. But she would not let me talk to him, or Joanne. Then she said I have to discuss this all with Dr Lee-Ching. I am a bit confused, I need to talk to Dr. Frank Pien, then I told her about Dr Lee-Ching yelling at me on the 23rd after I got the picc-line in, and that Dr. Lee-Ching told me Dr. Pien said that they are not sure that there is any infection, there, and that they weren’t sure what it was, but they were going to give me the antibiotics anyway, just to make sure. So I need to talk to Dr. Pien. An I told Helen that Dr. Lee-Ching told me not to call him if anything goes wrong, call them , then Helen says call who? I said the surgery center, and then she blew up and said what? I said he said it twice, or more. So if I can’t talk to you, and you won’t answer my questions or let me talk to the doctor, and I can’t talk to Dr. Lee-Ching who do I talk to? Then Helen with her bad attitude says there is a problem between you and your doctor, I tried to explain again in a proper tone, that we already disused that with Joanne, Dr Pien, myself and also with Dr. Maher and then she said I am going to call over to Dr, Lee-Ching’s office and with her attitude on the phone it would not benefit me at all. Now I am still stuck with no one to call. Why can’t I talk to my treating physician that I used the last of my food money to fly over to Honolulu, use about 50 bucks for cabs, and then walk across town because I didn’t have anymore money with swollen feet to get to his office, wait 4-1/2months to get to see the right doctor, and now I can’t talk to Him? Is this still America? Now I have to worry about what Helen is going to say to Dr. Lee-Ching. He is my only doctor, which I might loose now. I have tried to get another doctor for 2 months, so now I will not sleep at all. Now we can thank Helen for making my life even harder with more anxiety, and more pressure. I will be even more upset and get more nightmares, and probably get yelled at again, by Dr. Lee-Ching from one phone call from Helen where she had really has no business dong in the first place. I wanted to talk to Dr. Pien and she refused, and now she probably made Dr. Lee-Ching even more upset. I can only trust one person Jesus Christ. It seems I am not getting any answers, so I am going to give it all to God and trust in Him, keep my faith and hope that all things work out for good.
On May 7th Lonny cam over early about 8 of course I was up and pacing, my supplies were dropped of Thursday the 6th by Rusty a wonderful man, caring and compassionate. The same with Lonny she is my favorite nurse, This time the antibiotic bags had Dr. Pien’s name on them, well Praise God! She changed my dressing told me everything looked good, got rid of all the blood clots around the needle holder, and took some blood samples, and I told her to check out my kidneys if she could, because the INVANZ. She got me going with the new CLEOCIN another name for CLINDAMYCIN and then she had to take off to get the blood work taken care off, but there was just one thing she forgot to tell me, that I had to use 1 Rely-A-Flow 100ml/hr w/filter per day, and I was
using one every time I did a bag, by Sunday I realized I only had on e left, so I had to call Phamcare and tell them I was out of tubing, then they told me over the phone you have to use 1 three time a day, I told them no one told me anything about that. Also to me that is very unsanitary, because the end line is always exposed, then they explained about the caps, but the caps do not cover the outside where I have to screw directly into my arm. So you have to clean that area very well with alcohol. So here we go America lets save a few bucks making a preacher a doctor, and let’s save a few bucks on making a person us the same tubing and filter for 24 hours, I think that is a little extreme. Because the fluid lies in the same line and in the same filter all day long, and then you really have to watch the air bubbles running through a second and third time, meaning you have to let the new fluid catch up to the old fluid, I find that a bit ridiculous but I am only a poor preacher, that has to go with the flow.
On Monday May 3rd Rusty was right there with some more tubing that same morning, and we talked a bit, and he was telling me about the 18 caps, they sent with the last order.
On Tuesday May 11th the day of dread, I am running out of pain meds, and my pain level has not changed, and I can’t take anymore abuse, I new I had to call Dr. Lee-Ching’s office, and make an appointment again, and I had to deal with Gail, My pastor and myself have been doing prayer and devotions every morning lately and we did pray heavy for this day, we didn’t know what the reaction of Helens phone call, would cause, and we didn’t know what was going to happen, or if I still had a doctor, and I was suffering all morning, on what they were going to say, or how I was going to be treated. I prayed for the proper time, Gail just said call me in the afternoon and I will pull your file and talk to the doctor. I worked on the computer to take my mind off things, and called about 2:45 and she said just come in on Friday and we will take care of it. Praise God again!
On Thursay May 13th Pharmacare called to take my order for supplies, and I said I would be home, this whole thing is beginning to feel like I am in a hospital and alone, my pastor friend came over and made a prayer on me on his way to work, and that was a blessing. Then I get a call from Dawn from Pramamcare, she asked me how is my pain level, I tried to explain to her when I take an injection of the whole stressful and careful procedure, wiping off everything with alcohol etc, I told her the pain level increases, during about a main hour after taking the antibiotic, I am not a doctor, so I would assume that the antibiotics are attacking the general area, but that still doesn’t make much sense, it should be relieving the pain. So Dawn needs me to go to a regular doctors appointment by Tuesday so she can have some new order confirming for maybe another 2 weeks, because the INVANZ did nothing for 2 weeks, and I was only scheduled for 4 weeks of therapy but nothing is working so far, I do feel better, I have some color in my face, my ability to think is better, but as far as eating it is getting to be a real burden, I still don’t sleep even with valium and I still am praying for as many people I can during the evening, which helps me both spiritually and mentally, knowing I can still help people in the condition I am in. But when she said we need Dr. Lee-Ching to examine you, first of all I told her I wanted to see Dr. Pien, but I can’t afford to fly there again, and I still haven’t talked to him yet, and I would like to know why? Dr. Lee-Ching does not know anything about the mouth and jaw. And he scares me, makes me feel inferior, and always yells at me. So I am not looking forward to that. But then again maybe by God’s grace in another week I will be able to start chewing again.
On Friday May 14th, I got a call from Lonny my favorite nurse and she said she would be over to change the dressing, at about 11, everything looked good, she has the most compassion and understanding of a person I have ever met. She said my dressing looked the best she has ever seen, she explained to me that most people the plastic covering is peeling off, when she visits other patients, we talked about the situation and my pain level, and I also explained that after I take an injection of a bag of CLINDAMYCIN, that my pain level goes from a 8 to a 10 for about an hour and then drops to about an 8, she said “if you told that to someone else they would laugh at you, but being I know what kind of person you are, and how sensitive of a person you are, I believe you.” I explained that it feels as if the antibiotic is attacking the area, and I can feel the war against the white blood cells and the antibiotic. So even with the pain pills it does more or less nothing, I don’t want to over step my dose, because I do not want to be addicted to this stuff, although I have been on pain meds for 6 months and I don’t feel happy about that. So I just suffer, with the pain and deal with it like I am doing right now. My temperature was 99.6 so from last week it has gone up, she says no need to worry, it has to go over a 100 before we have to start to analyze the situation, and why. We talked about my 4 week program and I explained to her that now I am on the right antibiotic I would say, and we also talked about why hasn’t my doctor Frank Pien called to see how am I doing, since March 30, when I made my first and probably my only visit? Now we are working on a month and a half. I also told her that I had to pick up a prescription from Dr. Lee-Ching that same day, and I need to talk to Dr. Pien on Monday, first, I need to talk to Him, because his name now, is on these bags, if the secretary will let me get through, and I would like to know why he is not interested. I need those reorders for probably another 2 weeks of this CLINDAMTCIN. Or all of this is and has been done for nothing, nothing has changed, the pain is still there, and it has increased; now I am running a fever again. I might have to change antibiotics again, but I need the opinion of Dr. Pien not Dr Lee-Ching! It gets to a point does anyone care about my life? I mean it is not easy doing all these injections 3 times a day, 8, 4, and midnight, and I am doing them by myself. There is a lot of prep work and sanitation, paper towels, alcohol, bleach, Lysol, and to disinfect clothing, and sheets, and blankets, stuff that I am doing and supplying, plus I have to keep the water heater on, so my electric bill goes sky high. Everything has to be kept clean and germ free. And this is not easy, what am I a hospital maintenance man too? But nobody cares, except my nurse, and the staff at the surgery center.
Well I went in to pick up my prescription, and of course they cut my pain medication in half, an I asked the secretary what is going on, why would it change from 15mg every 6 hours, to 7.5, she said that is only because you had the pick line put in. She was sincere but that didn’t make any sense about jaw pain. In other words Gail wrote the prescription the old way, of Endocet 7.5/500, when it was changed to Endocet 10/325, then after I called on the April 30th the dose was changed to 1-1/2 every 6 hours. Theoretically I should be getting better, but I am not, the pain is increasing, and of course I am getting used to the pills, the 7.5’s do absolutely nothing. So I was suffering with the 15mg, every 6 hours now the dose is cut in half. There is something wrong somewhere. I took the prescription and left, I felt uneasy enough. I should have made an appointment right there, but I was afraid to, even on valiums, and I was afraid to even face Gail, to even argue the point. I called on Saturday about 10:30 to talk to Gail, and to make an appointment, but the answering service picked up the phone, some times they are open
for a half day on Saturday. This Saturday they are closed. May 15th. We have had a lot of difficulty with Gail writing prescriptions in the past, like with the valiums, 3 times and the bickering between the pharmacists and Gail, so by Monday I will get to the bottom of this, anyway I guess I will live through another horrible weekend of being alone, and in pain, and in the area of the unknown, whether this pick line will come out on Thursday, whether these antibiotics will work by Thursday, and I am not looking forward to the appointment on Tuesday, to get yelled at or criticized or maybe lied to again. And by the grace of God I shall be healed. If I didn’t have the Holy Spirit in me, and Christ by my side, guiding my footsteps, I might have gotten very mad, by now, maybe I should be more assertive, or more over bearing, and not take this torment. So I keep asking the question, what would Jesus do. And that and my bibles, and my faith keep me going. God is in control, it can’t go on to much longer, I must trust in Him.
On Monday May 17th, I called Dr Pien’s office before I would schedule an appointment with Dr.Lee-Ching, He called me back for the first time, since March 30th, and told me he cannot give me any information over the phone even though he admitted he was my doctor in charge till the 20th, He told me that they will probably pull the line and he had to add the little attitude of you know we are spending 500 dollars a day on your medication, and in order for me to talk to him further I must go see him, I told him I could not afford it, and also the pain in my mouth has increased, then he says there is something else wrong, and to find an seek a eye, ear nose, and throat doctor. There are still 2 more antibiotics to try, but his attitude has changed, from all of the phone calls, out of desperation trying to get this thing going after he ordered this on the 6th, and I had to wait from the 6th to the 23rd to get my first dose, because of the office of Lee-Ching. I know his secretary Helen steered him in a different direction as far as my personality. It seemed his kindness heart was gone. He didn’t want to help and he really didn’t want to say anymore over the phone even though he was the doctor in charge. I sat with that phone in my hand in amazement, looked at the picture of Jesus, and said does anyone care? I called over to Queens, Medical Center, and asked if there was ENT doctor that comes there, she said yes, I know I can’t afford to go to Honolulu again and I am not going to a doctor on this island. So my only logical alternative would be seeing a doctor that flies in from Honolulu. She gave me the name Dr. Peroff that flies in on June 9th, so I wrote down the name and number for Gail to call from Lee-Chings office, for setting up for an appointment and a referral. I called Lee-Ching’s office and made an appointment for 2:30, for Tuesday the 18th.
On Tuesday the 18th, I went in this time with my best friend pastor and pharmacist. Of course everyone in the office new him and no one could figure why would these two be together, my weight has dropped to another pound 138 with my clothes on. I sat with Gail again and my Temp. was 99.4 still high, as usual then she asked me that she just talked to Dr. Pien and he suggested I go see an ENT, I gave her the card and the name and number and she made the appointment and the referral. Then I go in the office and I took my friend in this time, usually it would be Lynne, which the doctor has never said hello to or even acknowledged her or even asked her name ever. In comes Dr. Lee- Ching, no hello, how are you doing, no how do you feel, how is the medicine working? He starts with this in a very bad tone, did we make an agreement that if you tried to get another doctor I would drop you, well I am, I just said I didn’t make any appointments, I only wanted to find ENT as Dr. Pien requested, and Gail just made the appointment.
Then he went off again you seem to find all the doctors you want so go off am I am you didn’t agree to the agreement and now you can find another doctor. Then He finally looked over and saw George sitting there, and his whole attitude changed, then he realized I know this man, pastor, pharmacist, he was shocked, but trying to cover it all up. Then He said I will take you all through this, I will take care of you until this all clears up and you get well, again, then we talked about the medication, He says you are taking some strong stuff both very addictive, I said I know, I asked him well when all of this is over are you going to take me down off this stuff. He said yes. He new George was in the room and if he wasn’t there I swear he would have thrown me out right then and there. And I either would be sitting in the emergency room, or have had a heart attack, or maybe a stroke. I was holding back the tears, and almost fainted, and I knew I did nothing wrong, I know the man doesn’t like me and I have been treated so bad all because of prejudice, I have never gone through an experience like that again with any man. Now here is were the good part starts, and the most ridiculous thing I have ever had to go through. They gave me the prescription on Friday and they put me back on the 7.5/500 every six hours, which did absolutely nothing, and I told him I went from 1-1/2 of the 10/325 every six hours. Now get this he told me to bring my pills back to the pharmacy and have them count them, and then he would right out a prescription for the 10/325 but then I told him that that pharmacy didn’t have them. I had to drive all the way home and get my bottle and hand them to the pharmacist and explain to him all of this miss- mash so the count was right on, he then called back to the Dr. Lee-Ching and told him the count. The doctor suspected I was some kind of dirt bag and took a lot of them, he never believed they would be the right count. So then this pharmacist had to hook up with the other pharmacy, and talk to them, so then the pharmacist had to throw away all those pills because he could not resell them. Then he gave me a note and told me to hand it to the pharmacist and that everything was going to be taken care off. So I went to the pharmacy and picked up my prescription, by now my nerves were shot and I was shaking and all the gas I had to burn, and the waiting and pacing in these pharmacies all because of there mistake again. You can not believe all the things that were flashing through my mind; I can’t take it anymore, now in all the confusion I have to call for my valium prescription on Friday because it is up on Saturday, so now I am worried about that too. When does it end?
A lot has passed through my mind in the last few days; things were not as they seemed to be. I was in fact worried about my doctor making the decision of changing the orders for another 2 weeks, and by the grace of God I received a call from Lonny and she wasn’t sure whether I was going to get this pick line pulled, or have another 2 weeks of therapy, but God’s hands did make a change, and with Pastor George and friend there with me, might have saved my life. I know Dr. Lee-Ching now had a different attitude about me. I guess he stereotyped me different, or was just an act of prejudice. So I did get a call from Parmacare on the 19th of May saying I was going to have two more weeks of therapy, praise God for that, it seems this man and doctor of mine, had a change of heart, and then again it could have been Dr. Pien’s orders, but we all know it was the Lord. So the 18th and 19th was hard on me, I thought they were going to give up on me, when they never gave the antibiotics a chance, and the first two weeks was a waste, with the wrong antibiotic. Lonny called me back on the same day and he told me she was sick and she would probably send another nurse over on the 21st to change the dressing and take blood samples.
On May 20th Rusty now who is a good friend delivered over all my stuff that I needed, I was stressing out waiting for the phone call and it was after 12, and he usually comes in the morning, but finally he was there and I had my antibiotics, syringes, etc, and we did talk a while, there isn’t to many people I do talk to. I mean people from the outside world, not part of the church.
On May 21st Marie a supervisor nurse came over and changed my dressing, and took blood samples, my blood pressure was very low, temp 99.4. The dressing she put back on was done a little different, and the seal was a little low, so I had to call her back and ask if I could put a piece of tape over the top to make sure that there wouldn’t have any dirt or air enter the vital area. Then I added the strips by my wrist to hold the line so you don’t accidentally pull out the line, while you administer all the syringes, and then the drip bag of antibiotics, like Lonny taught me.
On May 27th I received a call from Dawn and she kind of told me she didn’t know what to do after the 3rd in which that will be my last dose, I knew she wanted to find out some information but she didn’t tell me to make another appointment with Dr. Lee- Ching, I asked her is it possible for the antibiotics to continue on, but she said something like these antibiotics should have knocked this infection out in the first week, but then I explained that it has been about 6 months that this has been going on, so there is a chance that I should remain on them. We talked about my pain levels and I told her it hasn’t gone down, maybe to an eight, but that I don’t want to continue cramming down these pain pills, I had a long conversation with her, I was hoping for some answers to the fact that can a pick line stay in longer than 6 weeks, with out any added health difficulties, she said yes, I was figuring maybe Dr. Lee-Ching will at least call and see how I was progressing, but to tell you the truth, I did not feel He would. He wants to drop me as a patient, to me I feel he thinks of me of just another number, in his heart. And for me just thinking about calling that office makes me very nervous and uncomfortable.
On May 28th Lonny my nurse came over to change my dressing at about 8:15am, to take all my vitals breathing etc. And when she walked in Pastor George was there, with all our bibles open, and they introduced themselves, and Lonny was very proud to say that she was my nurse, and even George said, Paul talks a lot about you. I could feel the compassion from the both of them; it was a blessing to me to have two people in the same
room that really care about me and my health. George had to go to a meeting anyway at the big church, but he still made it a point to come over and just spend a few minutes with me, then he had to go. So everything worked out there. No one got hurt. She started taking of my dressing and realized it was done just a little different, and she just said everyone does it a little different. She took my temperature and for the first time it was normal, and my BP was normal, it has been very low. So we talked about what I should do for next week, I told her that Dawn called, and I told her the story about Dr Lee-Ching yelling at me and the whole situation in the office and how he wanted to drop me and how upset I get when I just go to the office, I never said a wrong thing to him and I never raised my voice to him ,but she took my feelings all in, and new how sensitive I was, and how hurt I was, and knew that I was very upset about that whole day. Then we talked about my pain levels and I told her flat out that nothing has changed, but I had another appointment EMT doctor (eyes ears nose and throat) on the 9th , flying in from Honolulu. So I asked her what I should do about next week, she told me to not get stressed about it, to keep relaxing, and try not to do any work for the church, to just calm my nerves and do not worry about anything, that Dawn is the Pharmacist, and that she should take care of everything. She just continued to tell me Paul it is as if you are in the hospital, take it easy and don’t flood your mind with worry about Dr. Lee-Ching.
On June 2nd, I figured I would be getting a call from someone telling me what is going to happen, but this day is where my stress levels went up, and when my stress levels go up the pain levels go up in my mouth. This would be the day that I would be getting a call from Parmacare about taking my order, or telling me what is going to happen, In fact my prayers for others the night before was more or less a prayer for myself , but I was able to use my suffering to open the eyes of many. Basically, turning everything around and sending out my situatio
