Even as I type this at 7:27 in the morning of Sunday, February 10, 2002, I have no idea what tomorrow brings, or even later today -- and neither, apparently, do any of my doctors.
It has been too long since I wrote in my journal, but I guess I had gotten totally cocky as month after month has gone by with no medical problems at all. September 14, 1999, to January 31, 2002, with no hint of a problem whatsoever. Man, that transplant more than two years ago was a piece of cake. No rejection, no infection, no worries. Then, boom.
However, before getting to the end of January, and why I am sitting in the hospital typing on my Compaq iPAQ (an amazing Christmas present from Pat), let me bring you up to speed, briefly.
One note: I have decided not to name the various doctors with whom I have dealt, as some of them have been very forthcoming, and I would not want to hurt their positions due to their concern and honesty, even though one told me, "and you can tell Shands I said so."
A third granddaughter has entered our lives, our daughter Lynne having given birth to Gabrielle on November 7, 2001, giving us three amazing granddaughters, or as we say, a third of a WNBA team. They make it all worthwhile. If you want to find out more about Gabrielle and her sister, Kelly, and their wonderful parents, Lynne and Geoff, you can go to geocities.com/geoffandhisgirls, for info and pictures. Lynne and Geoff still teach middle school, and Kelly is approaching age six, and is in kindergarten and remains beautiful and wonderful. She and I went to see Sue, the T-Rex, shortly before the crash. She, like her sister and her cousin, have their Poppi wrapped around their delightful little fingers. Gabrielle is likewise beautiful, and is becoming more active and more vocal, having even spoken to me over the telephone. Lynne calls every day, and visits almost every day in the hospital, even though I have been selfish enough to be asleep during several of her visits. Sometimes she comes alone, and sometimes with Kelly, or with the entire family. Each visit is a joy. Kelly even made me a get well card that I will always treasure.
Our son, Peter, and his wonderful wife, Mel, and the third granddaughter, Alexa - who turned two just before Christmas - continue to love Indiana and working in Louisville, and when I entered the hospital, they drove down to visit after my first week in the hospital. Alexa is dynamite and changes so fast. Before they drove down, Alexa told her daycare that she was coming down to make her Poppi feel better. The one down side about Indiana is the lack of visits, but the weekend visit and seeing all of my children (Geoff and Mel and our kids too) and all of our grandchildren together was amazing.
Pat is still the assistant principal for curriculum at Dunnellon High School and working far too hard. She won't believe me that the school can exist without her putting in an extra twenty hours per week, when her work week is so insufficiently paid for. Given our current anti-public-education governor in Florida, I am sure that she will be working harder for less money and will be in a profession which continues to be the number one target of JEB! and his privatize everything so that the fat cats can make a bigger profit and make larger contributions to him and his brother. Enough of that rant. I don't know where it came from, but I guess it's an effort to avoid the current problem.
The doctors tell me that what happened at Christmas time is not related to where I am and what I am experiencing today, but I am not convinced. Pat, my lovely and long- suffering wife, knows in her heart that there is a relationship. Recognizing that neither of us has any medical training to speak of, I am still not willing to write off gut reactions, as that seems to be the medical approach in this whole thing as well.
To begin, looking back, I had weakened somewhat physically in the months before Christmas. Taking out the garbage became more of a task, and I was spending more time sitting in a mall than ever before while Pat was shopping. Naps became more user friendly and, in general, I was becoming more of what we call an "old fart."
Then, on the Friday before Christmas, I had a horrendous abdominal pain, and ended up at the emergency room here at Shands in the wee hours. After much testing, sticking, and prodding, it was announced that I had gastritis, and I went home. Then, on Saturday morning, Pat and I were drove to Gainesville to babysit our granddaughters for the weekend while Lynne and Geoff went to south Florida for a wedding. The pain hit again, and I ended up back at the emergency room at Shands. This time, the finding was a gall stone which had passed, but which had caused damage to the liver - not the kidney - and I spent Saturday night in the hospital with some IV antibiotics.
On Sunday, I got out, but had to go back to Gainesville on Monday morning to give blood for more tests and was supposed to go to transplant clinic, but that was destroyed by a total lack of communications between the emergency room and the clinic. I guess this was a sign of things to come. After the blood letting and the aborted clinic, I drove to the office to complete a brief which was due, and which I had been unable to complete the previous Friday for obvious reasons. I had just finished when the pain hit yet again. I called Pat in Yankeetown (slightly more than thirty miles from my office in Bronson), and she called 911. An ambulance ended up taking me to the emergency room for my Christmas Eve visit.
I hung around the ER for hours, and - even though the EMT on the ambulance had drawn blood - tests were not run for several of those hours. We finally had to ask if they wanted to run tests on the blood. Shortly after lunchtime, I was told that I could leave as soon as the doctor saw me. Given the communications at Shands ER, I got out after 5:00 p.m., even though the doctor seeing me was limited to her shaking my hand.
I was given two prescriptions for antibiotics - two big Cipros per day for ten days and three big pills of another antibiotic per day for ten days. I was assured that the kidney clinic doctors had been involved in the prescriptions provided.
Nothing else occurred other than my taking my regular medications and the antibiotics, except that the antibiotics made me lethargic and cancelled our planned trip after Christmas to visit in Indiana.
My next medical visit came on Thursday, January 31, when I had my regular clinic visit. The doctor came in and announced that I was being admitted because my creatinine level was at 3.8, up from 1.8 on Christmas Eve. I was in shock.
I had a biopsy that afternoon, and I feel a brief description might be beneficial. I first was taken to ultrasound, but the kidney and its surrounding veins were apparently confusing enough that it was felt that a biopsy guided by CT was required. I was given a local surface anesthesia, and a hollow needle was stuck into the kidney where three samples were snipped off for study. It was somewhat uncomfortable, but not really painful, but I was required to lie flat until 8:00 the following morning and, in a hospital bed, this was really painful for me.
I was started on heavy steroids (500 units per day by IV) for four days, and my blood sugars went skyward, nearing 400. Then I was put on a liquid diet which consisted of broth (almost totally salt), juice, regular jello, and a regular popcicle. Not exactly a low sugar low sodium diet, so I put myself on basically the juice and a lot of water diet. I really didn't want to see a 600 or higher blood sugar reading if I could avoid it.
The steroids didn't work as hoped, as the creatinine continued to climb to over 6 and even higher over the next couple of weeks. On Tuesday, the level did drop a few tenths of a point, but then leveled off, and then - over the weekend began climbing again.
At least, for the first time, my numerous doctors smiled somewhat during its brief drop. A second biopsy again showed no great damage to the kidney itself, and I still making a large volume of urine, even though the kidney was functioning somewhat, it was not filtering as it should.
I was informed that I had suffered an acute rejection, but that the rejection appeared to be under control. Then, I was informed that there was a massive infection as well, and was placed on fourteen days of IV antibiotics. At this point, I am basically treading water, but was told that there would be a major meeting of the medical staff on Tuesday, the 12th. The doctors are admitting that my situation is unusual, and that my kidney has apparently gone into what they define as a sleep mode - again with a long technical name - which mode can be caused by the shock of acute rejection, especially with infection. I am told that in 80 % of the cases, the kidney simply wakes up and, unless there is serious damage from the rejection episode, use of the kidney can be restored, sometimes to the previous level.
I do not know what is more frustrating at this point, the fact that no one has a clue when or what will happen next, or the fact that no one has a clue why this happened at all. In the words of one of the top doctors who has been visiting me, do I want the truth – that there are no answers - or an easy answer that is probably wrong?
Before I put this on my site, I will update as needed, but felt I needed to start at this point so that I could give my feelings as events occurred, uncolored by whether or not the kidney restarts or I end up on dialysis.
I was moved to start when I was awaked at 6:30 in the morning to be weighed. That's right, to be weighed. I did some legal work for my secretary to pick up and use, and then started this journal update. I was shocked when I discovered the date today, since I was originally told that I would probably be out in one or two days, and it is now more than a week, with no end in sight. So long for now.
I guess it is time to update on the remainder of that Sunday when I started this update, a day of great emotions. The chief doctor came in shortly after I had closed down to tell me that the creatinine levels were no longer stable, but were again on the rise, and had gone to 6.3. Lots of shrugs and smiles, and the generalized statement that there is no way to tell if or when the kidney is going to come around, but one bit of information which was truly scary came out in our talk. In a discussion of the Christmas episode, he appeared very interested in the heavy antibiotics which I was given, and he indicated that some heavy doses of antibiotics - including specifically Cipro which I was given - can cause a kidney to go into the sleep mode in rare occasions. That news was almost as much fun as the news of acute rejection and infection. I don't know for sure what it all means, but it is frightening to even consider the possibility that I am lying in the hospital with a non-functioning kidney because the Shands ER gave me a contraindicated antibiotic.
Having overcome this, and having poor Pat feel guilty because she wasn't here when the double hammer of creatinine and Cipro were dropped on me, it was an emotional morning, and I have been being overly emotional anyway. I would cry when someone would call to check on me, which is not the normal me. Medications, I have been assured.
Mostly, however, I am emotional worrying about my wonderful Pat. She is staying between our house - sixty miles away - and our daughter's house at the other end of Gainesville. She is not sleeping enough and is skipping meals worrying about me. She is still working part time, and is tearing herself apart, physically and emotionally. I keep telling her that whether I get well or not will be meaningless if she messes herself up, but it does no good, even though I mean it totally. We have been married since December 1967, but she has been my entire life a lot longer than that. She is the strong one, not me. Any strength that I may appear to have comes from her. I just spoke to her on the telephone, and she is not sleeping, saying she can't even sleep alone in our big bed in Yankeetown. This thing is destroying both of us. Please, Pat, take time for yourself. I am not going anywhere for at least a few more days, and I will really need you if and when I do get to go home.
Sunday afternoon, my son and his family said goodbye, and I must say he is my son in every way. We hugged and we cried and there were tears covering both our shirts when he left. His last words left me in tears again, as he said he was proud of me and to remember that he was still a damn good match if it came to that.
Both of my children are amazing. My daughter has been raising her family, teaching all day, and finding time to visit me every day, together with morning and lunchtime telephone calls to check on me. She is a miracle, as is Geoff, and as are the girls.
I cannot imagine this without our children and their families, or without the support I have received from friends, fellow attorneys, judges and others. It is amazing, especially Jim and Judy Lang of Gainesville, the Alachua County School Board Attorney and his wife. They have visited almost daily, and have even offered to pick us up and drive us to an upcoming meeting of the Florida School Board Attorneys' Association if we can make it.
Basically, at this point, I am frustrated and I am angry at the possibility that Shands may have caused this situation. Really frustrated and really angry. However, despite everything, I am the luckiest and richest man in the world. Between Pat, Lynne and Peter and their families, I have more than anyone else could ever have had. And the friends who have called and visited and sent flowers and provided support prove that I am blessed. I have had visits from our Clerk of Court and a judge, as well as other attorneys and just plain friends. Friends have taken care of our animals and brought food and other necessities, and I have received telephone calls from clients and others, including Bo Diddley. Maybe it takes something like this to remind you what really counts in life and what roses are really worth stopping to smell, and friends and family are all that really count in the long run.
The next shock was that, as a result of the big meeting on Tuesday, February 12, the word dialysis began being used. There was nothing new and no better guesses, although the Cipro became more prominent in some discussions. However, with the levels of creatinine continuing to rise, and with my urine output going to basically nothing, dialysis was becoming essential.
It appears that peritoneal dialysis can somehow damage the new kidney so that hemodialysis (using the machine) is the only option at this point.
Accordingly, I went into surgery and obtained a pile of plumbing hanging on my chest to give dialysis access, and had my first dialysis on Thursday, with another session on Friday, and the first four hour session on Saturday. I was told, however, that I could go home on Monday, but would have to go into hemodialysis three days per week for four hours per day indefinently. The going home part overrode the bad news.
Then, on Sunday, I am given a choice: go home on Monday or stay an extra day and have yet another biopsy. Pat and I discussed it and decided home would be the best medicine, despite another hospital-created problem. After eighteen days in a hospital bed and on hospital food, I have gone from 244 pounds at that initial clinic to under 200 pounds, and most of that loss has been liquid and muscle. Walking has become a major chore. However, home is still the best medicine.
In the meantime, I have come down with what was diagnosed as the crud - a condition which strongly resembles the flu - and Pat and caught it, together with my daughter and my son and various members of their families. Ah, the joys of a hospital stay.
Monday, February 18, 2002, is a day that will live in both infamy and joy. Pat and I survived the hospital leaving final jeopardy, but barely. I was awakened, as usual, well before the rooster crowed, and weighed and relieved of blood, and waited for my dialysis and release.
And I waited, and I waited, and I waited. Finally, I called the nurse to find out what had happened to dialysis, to be informed that it was not scheduled. I then asked for a doctor, and finally - mid-morning - was asked if I wanted to stay another day for that biopsy. I said, unequivocally, no! I wanted out. At this point the doctors decided that dialysis might be a good idea, so I would not have to come in on Tuesday. However, as all things exist at Shands, this did not start until 11:30 a.m., meaning dialysis would not end until 3:30 p.m. This was, of course, only the beginning of the wait, or what Pat described as final hospital escape jeopardy. To cut to the chase, we finally escaped at 7:30 p.m. and got home after 8:30 p.m. However, even though I could barely walk to the bed, it was worth it. Eighteen days later and 28 pounds lighter, barely able to walk, with a non-functioning kidney, dialysis, and the remains of a horrible cough, I was home.
Beginning on Wednesday, I had to travel back to Shands for dialysis, waiting for the new kidney center west of Ocala to complete its paperwork with Shands for a transfer. The Shands' appointment was at 7:00 a.m., meaning leave home by 5:45 a.m. I discovered that, after dialysis, one is spent. Starting out from basically invalid to begin with, it was not a fun experience. However, improvement came on slowly, as I worked on the leg exercises from physical rehabilitation and walked around the house. Pat took me for dialysis on Wednesday and Friday, and our good friend Eldridge Fowler took me for clinic and dialysis on Monday.
That was one more episode in bureaucratic communications. When the clinic called to remind me of my Monday appointment, I asked what to do since it was in the middle of my scheduled dialysis appointment. I was told to come to clinic at 8:00 a.m. instead of the scheduled 9:00 a.m., and that blood would be taken at dialysis immediately thereafter and I would be called with the results. I was told that dialysis would be scheduled for 9:00 a.m. At my Friday dialysis appointment, I mentioned the plan to my nurse, and he thanked me, since dialysis had not been informed.
Monday morning, Eldridge and I arrived at 8:00 a.m., and I was called in at 8:45 a.m., and - after a half hour wait - sent upstairs by an almost hysterical doctor since I had not had my labs. Blood was drawn and then a pow wow was held after the labs came in to see if I should go back to clinic or stay for dialysis. Fortunately another doctor was in the dialysis unit and he said dialysis. In the meantime, I had become nauseous and had to make use of a bed pan. Dialysis did nothing to make me feel stronger, and I was again relegated to a wheel chair to come back to the car, where I collapsed. Home meant bed for several hours and total exhaustion.
Dialysis on Wednesday was not nearly as bad, and I kept hearing that I might make it to a private dialysis clinic much closer to my home, and one without the horrors of parking that Shands offers on a daily basis. On Friday, it was verified that I would start at a clinic outside of Dunnellon, about half as long a trip as Shands from Yankeetown, and a clinic with actual parking within a half mile of the dialysis unit. I mean a half mile literally. Also, there is no fee for parking. This alone is good.
As I go to clinic for dialysis, I am walking more and am working out on a regimen provided by the two people who worked on redeveloping my muscle tone while in Shands. I am walking more, and over the next two weeks, have gone to a School Board meeting, as well as holding hearings and trials in person. It is good to be getting back, even if I still walk like a very, very old man, and still feel winded from walking from my office to the courthouse across the street. At least I feel like there is progress. Some days, dialysis will leave me merely tired. Other days, they remove so much liquid that I can barely stand up after dialysis. In any event, each day of dialysis is a day lost from my life, since I am so washed out after dialysis. If I felt well enough to drive home, I would at least feel less like a drag on the lives of others.
Three things keep me - for the most part - in an up mood. The first and foremost is Pat and our life together. As we both say, our life together has been magnificent. If we were to die tomorrow, we would not regret a day we have spent together. However, we are both alive, and have plans for a lot more living. If I get down because of this setback and the hemodialysis, Pat jumps my case and things clear up for me. The second is the fast disappearing hope that my sleepy kidney will come back. The hope is not gone, but it is fading. Dr. Lokey said on Tuesday, March 12, that we would give it another month and then cut out the immunosuppressents and start cutting back on the Prednisone. Instead of the 80 % that Shands kept quoting, long shot now appears to be the goal. The third thing is the possibility that PD or peritoneal dialysis may again be an option. This allows for travel, at least in this country, and gives far more freedom. Freedom is what I appear to be missing at this point.
If none of these come to pass, Pat and I will make do. We can get hemo on the road, although it is totally inconvenient, and a two week vacation would only really last a little over half that time.
I have also been informed that rehabilitation will take me approximately six months, so that I will continue to be weak into the summer. However, I look to the future with hope and joy. At least I am alive, and I have my wonderful Pat, my Lynne and Peter, my Geoff and Mel, and - clearly not least - my Kelly, Alexa Skye, and Gabbi.
Thanks to all of you who have read my ramblings, and who have communicated with me, because you have been a strength through all of these days as well.
It is now Thursday, March 14, 2002, and I have completed another dialysis session. This one was not so stressful. I feel that things have gotten into a rhythm, and that it is time for me to put this out so others can share. I will write again when decisions have been finally made as to the kidney, the dialysis, and the donor listing. In the meantime, be well and be positive. I will do my best to do the same.