Please let me apologize for such a pause in my updates. The past two weeks have been and seen phenomenal improvement and we finally have some idea as to the cause of Donna's illness.
    As I reported before, she was started on a steroid (prednisone) which is a double edged sword. It worked wonders, but it also tears up internal organs and causes all kinds of problems including immune system problems.  And Donna has had immune system problems for years since her childhood polio syndrome. Actually, she is now considered a survivor who has beaten the odds as one who had been inflicted with polio as a child. The majority of polio victims are not expected to live into their 60's, but she has.
    Well the prednisone began to react almost the first day, although we did not notice it right away. But by the third day of the prednisone; there was definite improvement. Donna's appetite suddenly awoke and she began eating like a horse. She had lost about 60 pounds over the past six months; and she has already gained back probably 20 of those pounds. Each day there was very noticeable improvement. Little by little she has gradually got up and moved around the house. Actually started "running" the house again. She has taken over fixing the meals and my lunches. She is doing laundry and running the dishwasher. I see her sitting at the computer, but I am not sure if she has started writing to all of her friends again; but she is playing (marjone ?). She started working today on getting her materials ready for me to do the income tax report.
    Two days ago, she had a doctor's appointment and she walked out to the car without the oxygen tank, then used oxygen while in route to the Med Center. Once there she opted to ride in the wheel chair with the oxygen; because it was the fourth floor and a long walk down a very long hallway. Going back home was a reverse routine. But to show how rapidly she is improving, this evening I took her out to dinner and she not only walked but did not take her oxygen with her. We were gone nearly two hours. She did get a little light headed on the way back home. But I am amazed at the rate of improvement. It is all because of the prednisone.
    Unfortunately, we are very concerned that as she gets weaned off to smaller doses of prednisone; she may have a relapse; or develop some of the immune system problems. Prednisone also saps the bones of bone marrow and a woman her age does not need that problem. So the doctor has also prescribed a nasal inhalant that is supposed to help prevent the loss of bone marrow.
    So now it is a waiting game to see if she continues to improve and if she avoids getting side effects. At least she is feeling much better and so am I. We are continuing to run the oxygen machine day and night for the time being and Donna keeps the nasal cannula in place most of the time when she is resting or if she gets too exhausted while up and around.
    I mentioned that we went to the doctor's office two days ago. It was Dr Michaelson the pulmonary doc and he has finally located the missing specimens that were supposed to have been sent to Walter Reed Military Hospital weeks ago. The Dr Seldona who had the specimens but had closed his office practice and gone on a vacation; finally examined the slides and determined that in his opinion; none of the other pathology reports were accurate although one of them did actually hint at what Dr Seldona determined. He said that it is probably SJOGRENS SYNDROME.  So we are researching all that we can learn about this syndrome. I am going to attach a section below this text, with some information about Sjogrens Syndrome. The symptoms are not exactly like what Donna had, but we are feeling good with this diagnosis. Now all we need to do is to treat the disease and make her permanently well again. But Dr Michaelson warned us that this diagnosis may not be exact; and that we may never ever know the exact cause of her illness. But who cares as long as she gets well and does not have a relapse.
    There has been a lot of prayers on Donna's behalf and we not only recognize that but we are so thankful to all of you, not only for your prayers but for your sincere concern.
    Feel free to contact Donna on her computer at [email protected] and or call her at 954-772-6123. She is feeling so much better and now I am sure she would love to hear from y'all.
Later
Bill

Although dry mouth and dry eye are the two primary features of Sjogren's syndrome, the disorder can become systemic and affect other organ systems of the body as well. Systemic manifestations of Sjogren's syndrome may include fatigue, muscle/joint pain, dry/itchy skin, gastroesophageal reflux, peripheral neuropathy, and vaginal dryness (among others). Research has demonstrated an association between Sjogren's syndrome and the development of lymphoma.

Currently there is no know cure for Sjogren's syndrome. The objectives of treatment are to control the symptoms, prevent or limit organ involvement, and help patients improve their quality of life. Treatments for Sjogren's syndrome vary from patient to patient depending upon symptoms and which parts of the body are affected. In general, treatment is focused upon controlling the symptoms of dry mouth and dry eye using a variety of different strategies. Treatments for systemic manifestations of Sjogren's syndrome will vary depending upon which organs are involved and the severity of the symptoms.

It is unbelievable what has happened. There is absolutely no doubt that Donna was not only sick, but very very sick. All of the tests from Cat Scans to blood work; plus her lung sounds, her weight lose, her mood, and of course the doctor's own evaluations prove that she was really sick. There was no act on Donna's part. And after six, almost seven months and after I really hammered on the doctors; the pulmonary doc finally stuck his neck out and prescribed prednisone. And after only three days there was very obvious improvement. Of course we knew and expected some result from the way that steroids work; but it was totally unexpected for such dramatic changes to come about so quickly.

Each day I watched and was amazed at the cure. By the eleventh day, she was taking the oxygen mask off for brief periods and even standing and a little few steps around the house. She was itching to get at her computer. On the 11th day she actually sat at the computer for the first time in about 4 months. There were so many messages stacked up that it took hours to download all of them (There had been no limit on what she could store with her ISP) So she just set the computer to download and went back to bed. By the 12th day she started clearing her computer and I expect her to actually start sending e-mails in the next day or so; if she doesn't get over exerted. She is trying to do so much. And yesterday, she actually baked some bread.

There is a little story about the bread. We had a new kitchen cook stove installed just as she was becoming bedridden and she has all this time, insisted that I was not to use the stove until she had christened it first. So she has talked about making bread in her new stove oven for months. When I got back home last evening, I found that she had indeed baked some bread. This girl has had a remarkable recovery and it is amazing.

She is still utilizing the oxygen tubing and the oxygen generator, but taking it off more frequently and for longer periods of time. She tries to do too much and still tires after a little while; but she is gradually resuming an almost normal routine; and all this in just 12 days from the first dose of prednisone. Of course a steroid like prednisone is dangerous at the dosage of 30mg a day, so tomorrow it drops to 20mg and lets hope that it doesn't create a new problem of bone marrow loss.

Now we are hoping that she is really healing and that the prednisone doesn't create any new problems; and that she will soon be back to good health. Her attitude has changed from "I am going to die" to "I think I'm going to make it." And I am so pleased.

Stay tuned and I'll keep you up to date as she amazes me.

Later

Bill

Well finally I can report some improvement. Donna is still very ill and they still can not determine what is making her ill; but she has shown some improvement during the last 10 days.

After I climbed all over Dr Michaelson on Monday January 24th; he decided to try some steroids and some antibiotic combination. So she took 30 mg of prednisone along with a new antibiotic called Ketek. That is a strong amount of steroids. Within 3 days, her appetite was so improved that she was eating like she had been starved forever. No matter what I brought to her, she was gulping it down and looking for more. Of course we knew that was as a result of the steroids so we didn't assume too much hope. By last week-end she was beginning to feel somewhat better, but still unable to get away from that oxygen tubing and nasal cannula.

Donna was supposed to have an appointment with Dr Michaelson on Wednesday and in preparation, she was standing beside the bed for short periods and we discussed that she might even be able to walk to the car, even if she had to use the wheelchair to enter the Medical Center. (With her walking to the car, it made one less time that I would have to load and unload that darn wheelchair) Well at the last minute on Wednesday the doctor's office called to say that the appointments were all being canceled because the doctor had an emergency and it was rescheduled for Thursday.

Thursday was a dreary day in Florida and little spitting rain and gray clouds. Not a typical or very pleasant day in Florida, but not only did Donna walk to the car while hanging onto me for support, but she took off the nasal cannula while she waited for me to get the wheelchair out at the Medical Center. I was having trouble with the darn wheelchair and all the while Donna was without oxygen for the first time in months. Finally I got the chair out and her into it and she remarked "Look, my hands are not turning as blue as when I usually get off the oxygen" Finally we entered the doctor's office and we had quite a discussion. Obviously Donna was looking healthier with some color in her face and with some swelling in her cheeks from the steroids that almost covered up the sunken cheeks of the last few months. He listened to her lungs and said that they were much clearer than had been. All these improvements were kind of expected from the large amount of steroids, but was it a cure? Unfortunately the steroids can not be considered a cure; but they have improved her appetite and given her some energy which she had been lacking.

We discussed the misplaced specimens. Nobody seems to know for sure where they are right now or even how they got where ever they are right now. One thing is for sure, they were never sent to Washington. The doctor told how dr's can only treat four symptoms. and there are numerous ways that the body emits these symptoms when there is a problem. But these four symptoms can be caused by many different problems that the body is trying to fight off. So even though Dr Michaelson recognized that Donna was ill, he did not know how or what to treat. It sort of made sense the way he put it. At any rate Donna and I have a lot of faith in this guy, while not to sure about some of the others.

So the decision is to begin to wean down on the steroids for the next 14 days. She is now going to be taking 20mgs a day for 14 days. That is still a heavy load and can cause lots of damage to such things as the liver. He has ordered another Cat scan and more blood work in preparation for his next visit in two weeks. He will be watching the results carefully to see if there is continued improvement and also to monitor any possible damage from the steroids. Also if Donna continues to have night sweats, he may put her back on the antibiotic Ketek on an every other week basis. One week on and one week off.

Today Donna has been up out of bed several times. (Actually becoming a nuisance in what I had considered my domain) She wants to straighten everything out back to her way. She has tried going without the oxygen for short spells, but can't stay off it for very long. So the bottom line is that she is showing gradual improvement every day and we hope that it is going to continue and that it is not false reactions from the steroid and antibiotics. I think that she actually turned on her computer today and found loads of e-mail piled up. I don't think she has sent out any mail yet, but you may get the next report directly from the horses mouth - so to speak.

Seems a shame that she could not have got the steroids and antibiotic months ago and she might not have got so ill. And it is a shame that I had to get tough with the doctor to get him to start the treatments. We appreciate all of the prayers and the concern shown by so many of Donna's friends. Don't give up yet, for she still has a good ways to go back to normal health. And now she truly believes that she is going to recover. Sure beats that attitude she had these last few months.

We were very disappointed yesterday. It all started last week on Wednesday when Donna had an appointment with pulmonary Dr. Michaelson. While there we asked about the results from the specimens that had been sent to the Armed Forces Pathology Institute at Walter Reed Army Hospital in D.C. He said that he had not yet heard and that "perhaps" he should check on it. Since the visit to the  Miami University doctor on January 6th when we were told that the specimens were being sent; we have been waiting for the results; with the hope that we finally would find out what was making Donna so sick.
So yesterday Donna had an appointment with the Infectious Disease doctor "Renae" and I asked again about the results of the specimens that had been sent to D.C. He had his office girl make some phone calls while we were in the examining room; and "Surprise;" the specimens had never been sent yet. They are still in the possession of a Dr Seldona, whom we had never heard about.
Seems that Dr. Seldona was sent the specimens from North Ridge Hospital where the biopsy was done; and he has just been sitting on them. In fact he has recently closed his practice and no .longer sees patients. We still can't find out why they were sent to him. Numerous phone calls (so far today - at least ten) being made today not only by me, but also by the insurance company nurse, and two doctors; as to what happened and why and to get the specimens moving again immediately. As of now, there is still no answer and no assurance that the specimens still exist or are going to be sent to D.C. We also found out that Dr Michaelson had been the one that referred us to the UofM doctor Ratzan but he has not got back any consult report, yet. But that is being faxed today.
Seems that we really wasted a whole day with that trip to Miami. Donna should have been in the hospital even while we were driving to Miami and back and then the incident in the ER when they did not offer any oxygen when our portable tanks were running low.
So this is just another example of the terrible state that our medical service has deteriorated into, while we keep getting promises from the government for better service. We, that is Donna and I;  had no control over what has transpired and if we had not been very aggressive in following up; we may never have known about the failure to send the specimens. It probably would have been covered up by all the medical personnel involved,.
Well as I reported last time; Donna got a rx from Dr Michaelson for a prednison steroid which was to be taken at full strength and then tapered down for the last dose to be completed  in 10 days. Within 36 hours after getting the rx, Donna's appetite improved greatly. Then on this Monday when she had tapered down to only 20mgs of the prednison her appetite began to slow down. So Dr Renae changed the rx a little; making the dose spread out a little longer, hopefully to keep her appetite strong and continue to show improvement. He also ordered Miacalcin Nasal Spray. That is not covered by the insurance and is very expensive. Today Donna seems to be about where she was towards the end of last week. Showing some increased appetite and some signs of a slight turn around, but still very ill. The worst part is that the Dr's are still saying that they do not know what is making her so sick, even when their tests show that she is very ill; so they are not sure how to treat it. In fact Dr Renae said that they may never know and that sometimes there are cases in which they never know what is making the patient ill. Quite an admittance I would say. Perhaps they are not the cure all masters that we assume them to be.
Donna asked Dr Renae if she would ever be cured and his response was "All you can do is pray." How's that for an answer from a doctor?
Well we continue to try to find out more about those specimens going to D.C. and meanwhile we still have trouble with getting referrals for scheduled upcoming x-rays and blood work. And with another appointment coming up next week back to Dr Michaelson; we keep using up the portable oxygen bottles and get more problems trying to get them serviced.
Never seems to end

It seems a shame that in order to get any treatment from HMO doctors. one must jump through hoops and beg for attention. Well, on Monday this week, I was fed up and I jumped the pulmonary doctor. I was furious. Donna has been finding it difficult to even get out of bed to the bedside commode. Even so, the doctor's office wanted her to come in for a visit on Wednesday. Well Donna and I struggled to get her out of bed and dressed and into a wheelchair. We had to hand carry the large oxygen bottle while pushing the wheelchair. Into the office we go. It is only 9/10's of a mile from home but the whole operation took us nearly 35 minutes. Then we sit in the office for almost a full hour before getting to see the doctor; in a waiting room full of coughing and sneezing other patients.

Finally we get to see the doctor. He had prescribed Prednisone and Keter 48 hours on Monday after my furious phone call. He had the results of nearly six months of tests, CT Scans, X-rays blood work and consults with other doctors regarding Donna. And still they had not decided on a diagnosis or treatment. After all the problems of getting Donna to the doctor's office, he just listened to her lungs and had a general discussion about the past 6 months, but still no diagnosis. And even today some 24 hours later, she is completely bushed. 

The one good thing is that she is apparently able to breathe somewhat better than she had been. Still not anywhere near normal, but at least some slight improvement. Which gives us hope that she may be on the road to some recovery. Her lungs have been so badly scarred that she may never be able to go without the oxygen ever again; but if she can regain her strength and resume some normal activities; we will feel fortunate. And this slight improvement in her breathing is giving us hope, even though she has a long ways to go yet. 

She is not out of the woods yet, so I will keep everyone updated until the day that she can once again get on the computer and do her own chatting with y'all.

Later

Bill

Our Donna is home !!!!
Well she is home but she is still not feeling very great. She was operated on last Friday night and they had a drainage tube inserted into her chest cavity from the back located just below the left shoulder blade. They inserted a scope and looked all around the area, taking out little patches of "gunk" and over a liter of fluid. Yesterday morning they removed the drainage tube and by afternoon, they felt that she could come home. Both Donna and I were very pleased about that.
   She was discharged of course in a wheel chair, and that was good because she is still very unstable on her feet. She has weakened so much these past weeks, and lost a lot of weight and probably suffered some muscle atrophy also. But she made it home OK, still using the oxygen.
   Today she has not got up from the bed except to use the bedside commode. I brought her some breakfast at 6:30, but she has not touched it yet. She did eat a small amount of Jello and drank some milk, but that is all she has had for intake since yesterday afternoon. She is complaining of a very upset stomach. But she has color back in her face, her extremities are not blue like they were before the surgery. At the hospital her B/P shot up to 180 over 108 when she walked to the bathroom. After getting back in bed and resting for about 25 minutes it came back down to about 128 over 78 which is pretty good. At the same time her oxygen level dropped down to 92 while off the oxygen and only came back up to 95 later. Her potassium levels were so low that they were pumping potassium into her via the IV  at a very high rate. She is now on 4 doses of oral potassium per day. That is quite high dosage for potassium; and we are wondering why her potassium level is not staying up to a normal range, and her blood pressure goes so high. Could it be something to do with what her original illness is all about? We don't know yet.
   Specimens were taken and sent to the Armed Forces Pathology Institute at the Walter Reed Army Hospital for their review. We have not received their observations yet, but expect them back in a few days. Hopefully it will shed some light on what has caused all this illness.
   Had quite a conversation with the insurance carrier nurse today and she is going to make inquiries about the problems that we had in getting oxygen refills last week. She is also going to order a walker for Donna and there will be a nursing associate (does that mean an aide?) coming by to evaluate Donna's condition. I thought that the doctor's report would cover that, but they have to see for themselves. Perhaps they don't trust doctors and that really worries me. Then the nursing associate will determine if physical therapy is going to be needed. We'll see how that works out.
   So there we are, as of today. She is home feeling good about being here, but actually not feeling very well at all. Still using the oxygen 24/7 and on narcotic pain med every 4 hours. So that second problem has been fairly well covered, but the original cause of her illness is still unsolved.
   We want to thank everyone for all of their prayers and we know that something has been working for her. It had to be the prayers. Thank you.

Donna was admitted to the hospital yesterday and late last night she went to surgery. There was an excessive amount of fluid in her left lung area. Most of the fluid was between the lung and the chest wall and was putting pressure on her heart and also against the lung, causing her to have severe shortness of breath. Her blood pressure has been very high and in spite of medication it remained quite high. She came out of surgery at about 11:30pm last night and while I haven't had a chance to talk to the doctor yet, the attending nurse indicated that there was over a liter of fluid removed by aspiration and that an observation scope had been used to examine the entire cavity. They apparently removed all of the fluid. Samples are being forwarded to the Armed Forces Pathology Institute at the Walter Reed Military Hospital in Washington DC for further analysis.

The doctor at the University of Miami found that she had two problems. One was the disease that she was suffering from in the beginning and a separate problem was the build up of fluid in the lung area. He felt that the fluid situation had to be taken care of right away, and that the diagnosis of her first problem still remains until they can determine what is causing it. But he is upbeat about the eventual healing and return to good health. I wish I was as upbeat. The specimens to Washington DC are on their way and when there is a finding, then treatment can begin to take care of the first problem. Meanwhile, Donna is very weak and exhausted. They had to enter her lung area from a location near her spine under the shoulder blade; on her back and there is a large drainage tube in place there. Makes it impossible to lay on her back. Along with her other problems like the spinal surgery from just last year which has never completely healed and the recent open lung biopsy under her left armpit, she is very uncomfortable on her side. Please hold off on phone calls to the hospital until she is stronger and able to answer the bedside phone. I will be spending as much time as I can at her bedside until she is ready to come home, so I won't be at home and not sure when I will send the next update But as I promised Donna, I will keep everyone on her list updated about her situation until she can once again get on the computer.

I have been bucking the entire medical field for the past several days. Donna is still not getting any treatment and she continues to weaken and fail. On Monday I started the day by calling for Dr Renae to talk to me about Donna. Twice his office called me advising that he was tied up and very busy. Too busy to discuss about a woman who was failing rapidly? Fed up, I went to his office and demanded to see him. His medical assistant intercepted me and tried to placate me. She would relay everything that I said to the doctor and call me at home when she got an answer. I wanted to know why after five months, numerous CT scans and about 8 chest x-rays, and in excess of 120 vials of blood and the open lung biopsy; nobody knew what was causing Donna to be so sick. And why can't they give her some treatment besides some oxygen, even if they are not sure exactly what is wrong? Certainly they know and recognize that she is very ill.

On Tuesday I really started after some answers. I followed up with the medical assistant. She didn't call me, as she promised. I had to call her. Naturally I got an answering machine and could only leave her a message. That is how they isolate the doctors from having to deal with the patients and their family. After three calls, I finally got through and they knew by this time that I was furious. So they were anticipating me and they told me that they were trying to make arrangements with a doctor at the University of Miami. Of course they said that, last Tuesday; a week ago, but had never followed up on that. So I wasted a whole week trusting that they were doing something. Soon I got another call and advised that I had to call a doctor in Miami to set up an appointment.

When I called that office in Miami, again I was unable to talk to a doctor, just an office worker who expressed surprise that I needed an appointment. She was prepared to make an appointment sometime in the next couple of weeks, I nearly climbed through the telephone lines. I want an appointment right away. I guess I lit a fire under her, because she suddenly found that she could give Donna an appointment for Thursday at 2:30 . Then she threw another problem at me. I would need a referral from the primary care doc, and all of the x-ray and pathology slides from when Donna was in the hospital. It was now late in the afternoon, so I called the primary care doc's office and asked them for the referral. No problem she said. I said that I would pick it up in the morning (today) and she said OK. (Note she did not say it would be

There is not much change since my last update. She is still sucking up that oxygen; and she is worried that it was a mistake to take her off of the Sporanox. However, her appetite is improving somewhat. Yesterday she ate a tangelo and a grapefruit off our trees in the back yard. It took her quite a while, but she managed to get them both down and no stomach upchucks. Along with that, I went to Wendy's late last night and got a baked potato for her. She liked that and she ate half of it. She is thinking about finishing it today. When she is ready, I'll micro it so that it will be warm. I gave her some Jello, but she has not touched it yet. But all in all, her appetite is much better after stopping that Sporanox. Now I need to get her to eat a lot of nourishing food and lots of vitamins, One thing that I am concerned about, is that she has been laying in  bed 24 hours a day for quite a while now and she needs to do some Range of Motion exercises so that when she feels better; her leg muscles will not be atrophied. She had quite a job going to the doctor's office Tuesday. I'm looking for a wheel chair so that she doesn't have to stand up and walk when she is so weak.

     Donna was at the doctor's this morning and she was so weak that the doctor immediately asked a few key questions and determined that the Sporanox was too toxic for Donna and she told Donna to stop taking the med. Of course Donna is scared that to quit now, might cause whatever the fungus is;  to come back even stronger if she quits taking the Sporanox now.
   Some of the culture reports are arriving daily and the doctor still can't figure out what the infection is. They know that it is not an allergy, not cancer (at least not yet) and most certainly a fungus. But what fungus and how to treat is still a mystery.
   Then doctor got on the phone and talked to some people at University of Miami and they suggested that she come down there in Miami for more specific tests. The steroids did not work so there is no medication prescribed for now. Hopefully the UofM will schedule an appointment right away and then let the real experts try to figure it out.
   Donna's oxygen level was tested today and it measured 94. I am not sure what the measurement means except that they remarked that her oxygen level was still low and she is staying on the oxygen machine. The infectious doctor (Cobian) and her partner Dr Renae consulted with the pulmonary doctor Michaelson and also with the professors at UofM.
   So that's where we are tonight. We noticed that when Donna is sitting or standing upright, she doesn't cough as much, so we are keeping her propped up with extra pillows and a wedge under the mattress. Also this evening, since she skipped the evening dose of Sporanox, she is not quite so sick in the stomach and has a little appetite. I brought home a fish sandwich from Burger King which she often likes, but she took one bite and put it aside. She is eating some Jello and drinking some milk in slightly more volumes than she has been doing; so that seems to signal some very slight improvement. Or maybe the results of the doctors discussions today, may have buoyed her up  a little. But she doesn't like the idea of going off the Sporanox even as hard as it is to take.

Donna is still very ill and although some days we think that there is a slight improvement, the next day sets us back some. She is still spending nearly 24 hours in bed and gets up for the BR and personal care then back to bed. She lays on her left side most of the time because of the back surgery which she had last year and which did nothing to relieve the back pain. And then the open lung biopsy was on the left side and not completely healed yet. They made three incisions on the left side and two were fairly large (about 1-1/2") for a biopsy. These incisions are closed and appear to be healing nicely, but still uncomfortable while laying on that side.

We are into the second week of taking the Sporanox and it causes her to be very nauseous for a couple of hours after the morning and evening doses. And she can't eat for three hours before and after each dose. She is eating a little, but not a good diet and not enough to keep her healthy. I try to force her to eat, but she has a mind of her own and we compromise. She does eat some dry cereal with milk, drinks sips of Pepsi, likes Jello and Cottage Cheese. I brought home some bar-b-q baby back ribs and she gobbled some down. Seemed to enjoy that very much, but she didn't eat a whole lot. Still a few left in the fridge. All in all, her appetite is not very good, so we are working on that. 

So basically, there has been only very slight signs of improvement in the past week, and mostly the fact that she is eating a little bit. There is not a lot of Christmas in the air here, but we are happy to be alive. I got a large TV to put by Donna's bed and hooked it to cable so that she can watch her soaps and favorite programs. I would like to get her out in the car some evening, so that we can view the Christmas decorations. I mentioned it yesterday, but so far she is not really interested. I think it would do her good to get out even for a brief ride in the neighborhood.

When she went to the doctors office last Friday, Dr Cobian said that some of the cultures are still not back yet and they are checking on them. The cultures that they have got back, so far; may rule out the original diagnosis of "histoplasmosis" but she is staying on the Sporanox for the time being, because it is not hurting (just the pocket book) and may be helping. They are still not sure what the illness is, and Dr Cobian has taken a special interest in Donna. Dr Cobian is a recognized infectious disease specialist. Although she can no longer treat Donna directly, since she is not on the HMO list; but her partner is on the HMO list; they have agreed to show Donna as Dr Renae's patient while Dr Cobian will be working in the background. Donna is happy about this. They are mystified about what is causing Donna to be so sick, and there is no doubt that she is very seriously ill, so they have taken a particular interest in solving this illness.

You don't have to wait for an update. You can send a note in the mail or by e-mail anytime. If you send an e-mail to me, I forward to Donna and make sure she sees all her mail. Or you can call anytime. Just let her pick up the phone and know who it is and then she will call you right back, since we have totally unlimited long distance service.

Later

Bill

This new female doctor "Cobian" has quite a reputation in the infectious disease field and she practiced in the Indiana area for some ten years where there is a high percentage of fungus infections. She has prescribed a very very expensive medication as a preliminary treatment until more definite tests of cultures determine the exact treatment for whatever Donna has. All of the doctors have apparently been getting their heads together and thinking that Donna's problem is a very unusual illness.

Although the question of HIV or Aids has been ruled negative, the prescription is similar to the medication that Aids people have to take. It is a liquid called Sporanox and doctor Cobian thinks that Donna has "histoplasmosis" an infection caused by bat and bird droppings. It is not contagious. However, it causes scarring in the lungs and permanently reduces the lung function to the degree of the scarring. Untreated, the infection often travels throughout the body and eventually to the brain. The fatality rate is 30% or more if left too long before treatment. That is why this Dr Cobian is rushing temporary treatment in the meantime, while waiting for more definite culture reports. We're hoping that the treatment has started in time. Donna may have to go back to the hospital to receive more potent IV medication over a long period of time, if this stopgap treatment doesn't begin to work quickly. In fact we are under orders to take her to the ER immediately and call Dr Cobian day or night if Donna's condition deteriorates or if she begins to vomit from this medication. Now all of the doctors are beginning to get concerned, except for that Silverstein who is staff and under pressure to keep Donna out of the hospital, because of the insurance. All medical personnel that we have been in contact with, say openly that Vista is the very worst HMO. But we can't change HMO's right in the midst of the stream.

So bottom line. Donna is home and much happier but very sore and full of pain, so weak that she can hardly make it to the bathroom. Tethered to the oxygen tubing she is limited to how far she can travel and we have a portable tank for use if she leaves the house for a doctor's office,. Unless the infection is halted and the scarring tissue stops spreading, there is always going to be a limit of how much oxygen her lungs can exchange and she may very well have to be tethered to the oxygen for the rest of her life. That makes it very discouraging for Donna and she is having a problem to try to accept it. Donna is not aware that I am making these reports and she would be furious if she knew. I want to keep you all advised, friends and family; so please do not let on to Donna that I have been making these updates.

It is not being sneaky on my part, but Donna doesn't need anything distressing right now. She has some serious things worrying her and that is enough. So if you communicate or talk to Donna, please just let on to knowledge that she is willing to discuss. I will of course delete this message and always and forever deny ever sending it.

Bill

ps: Contacts with this HMO insurance Vista have been close to felony acts and I have a lot of tales to relate about their inhumane efforts to make the almighty dollar at the expense of caring about the individual, which I will gladly share with anyone considering Vista HMO coverage.

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Some of you might not recognize who I am, but I am Donna Schmidtke's husband and she wanted me to let everybody know why she has not been on line for over 4 months.

This past August when the hurricanes began to threaten all of Florida, we decided that we should lower the hurricane shutters that had not been lowered in several years. Working together we lowered the shutters and found that many birds had nested above the shutters and under the eaves. As we lowered the shutters, there was a lot of bird droppings that came down and covered us as we were in the process of fastening the shutters. Donna got a lot of droppings and dust in her hair and in her face, before we could duck away from the mess. The next day Donna developed a slight fever and felt as though she might have been exposed to a cold or a virus. At that stage, the bird droppings did not seem to be involved.

In a few days, she had developed a dry unproductive cough that became continuous day and night, 24 hours a day and often as frequently as 3 or 4 coughs every minute around the clock continuous. In no time, the effort of so much coughing began to weaken Donna and we got her to the HMO doctor. That doctor hardly examined Donna and gave her an antibiotic prescription for 7 days and told her to come back in three months. After the medicine ran out in 7 days, Donna was getting weaker and the cough had not let up one bit. Back we went and the same doctor gave Donna a different antibiotic and again in three months.

By this time we had both began to expect that the coughing and shortness of breath was related to the bird droppings back in August. By the third visit to the doctor, I went into the examiner room with Donna and insisted that the doctor treat Donna for a fungus infection or give her referrals to specialists. The doctor refused to accept that Donna might be suffering from a fungus infection, so she did give referrals to two doctors. One doctor Michaelson was very understanding and agreed that there might be a fungus infection. However, he was reluctant to start any treatment other than antibiotics until he could determine exactly what Donna's problem was. But he did order chest x-rays, cat scans and lots of blood work. By this time it was getting near to the Thanksgiving holiday. There was a lot of delay getting the results of these tests to the doctor's office. And Donna's condition continued to deteriorate. Finally I confronted Dr Michaelson and told him that she had to get some help right now. He was in a bind. He was not the primary physician so he was limited to what he could do, but he told me that if I took Donna to the Emergency Room, they would have to do something, while he continued to wait for the results of all the tests and cultures. So the next morning I took Donna to the ER and she sat there for 8 hours while they tried to determine what to do with her. At the ER they could only determine that she was coughing, short of breath and very weak; but no other immediate signs of illness. The primary physician would not cooperate and would not admit Donna to the hospital. (She was working for the insurance company rather than Donna. We will settle with her eventually) Dr Michaelson could not admit her, but he had a friend that was on the hospital staff, a Dr Silverstein, who would admit Donna as a favor for Dr Michaelson

So finally we got Donna into a hospital bed. Other doctors were called in for consults. At first they felt that Donna had some common illness in her lungs like TB or even HIV. So the next morning they started taking many tests to try to rule out everything that they suspected. They scheduled an open lung biopsy for the next day. It was supposed to be done on Friday December 3rd, but was called off at the last moment because there was a problem with the OR instruments which they would plan to use. So it was rescheduled for Monday December 6th. In the OR, they took a lot of specimens and they were obviously confounded with what they found. They almost immediately ruled out TB, HIV, Cancer and others of what they first suspected. They also took specimens for cultures They expected that some culture findings would be back in anywhere from 3 days on up to as much as three months, before the culture would grow to a point that it could be identified. Still they were reluctant to start any kind of treatment until they could positively identify the cause of the infection. That was hard for me to understand, but the doctors repeatedly said that they did not want to start a treatment until they were positive what the illness was caused by. Now they were getting their heads together and trying tom determine what unusual malady Donna had been exposed to.

In the doctor's dining room, they discussed her situation and a new doctor listening in to the conversation aid that it sounded to her like "histoplasmosis" a common disease in the Ohio River and Indiana areas where this doctor Cobian had practiced for over ten years. She contacted one of the doctors who had been checking Donna out and asked that Donna make contact with her.

In the meantime, Dr Silverstein the staff doctor that admitted Donna was getting a lot of static from the insurance company. He was under pressure to discharge Donna in spite of the biopsy findings. So last Thursday Donna was discharged at 8pm from the hospital and sent home with a portable oxygen bottle. As we were leaving the hospital room, Dr Cobian's partner was just starting to come to see Donna and he was shocked that she would be discharged. He asked that we bring Donna to their office first thing in the morning and on Friday we showed up and met this wonderful female doctor Cobian. She talked to us and told us what she thought the problem was and why, and what the future would hold. She told us about histoplasmosis and that it is fatal and untreatable after it has progressed to a certain point and that she thought that rather than wait for the rest of the culture reports; that treatment should be started immediately. Well finally after almost 5 months, a doctor was ready to begin treating Donna. We were elated at this. There was one problem. The interim treatment would be a liquid medication that is very very expensive and the insurance company will not pay one penny. Also it is not a regular medication and perhaps only two pharmacies in Broward County would carry this med in stock. She had her staff people call around to find a pharmacy that carries this medication. A pharmacy was located and the costs determined. It was as predicted, very expensive; but we wanted to get it anyway. Then Dr Cobian said that it is very hard on the system and the planned three months of treatment would be hard on the liver. She also warned that if Donna could not tolerate this med and would vomit or become distressed, that we should go right away to the ER and call for Dr Cobian who would be the admitting doctor. Unfortunately, Dr Cobian is not on the accepted list for Donna's insurance. Donna decided to go with the tentative medication and we will deal with the doctor bills without the insurance company participation. It will be expensive but we don't care. At least Donna is getting some treatment. We picked up the first dose of Sporanox, Friday afternoon and she has been taking it twice a day and tolerating it for 4 days now. The pharmacist is sympathetic and tried very hard to get us a reduction in price. Still it is well into the 4 figure dollar range per week. He said that Donna may begin to see some improvement in about 10 days. Donna is tethered to an oxygen machine with a about 40' of tubing so that she can get around the house. She can not go without the oxygen for more than a couple of minutes before nearly passing out. However, she is so weakened that she doesn't get out of bed. In addition, she is very depressed at the situation. She is limited to what she can do and where she can go and she is scared that the treatment was delayed so long that she may now be in the 30% in which the infection spreads from the lungs and eventually goes to the brain. if treatment is delayed. Donna is feeling that she will always be an invalid and unable to resume her normal activities. The scarring of the lung tissue will never allow the air/blood exchange so her respiration's will be reduced permanently by at least 20% or more if the treatment stops further spread of the infection. Donna would like to hear from all and she will try to check her e-mail once a day. I am doing my best to keep her spirits up and not let her dwell on these negative thoughts. We are holding out hope that the long delay in beginning the treatment is reversible..