KIDNEY FAILURE - A PERSONAL JOURNAL

[Peter Langley]

Home Again

Friday night, I had my first predictable side effect - a killer headache that lasted most of the night. I tried heat and cold, and my poor wife finally had to go out and get Tylenol. It is now Saturday morning, and the headache is gone. Thank god. However, if this is the worst that I have, it is still far less than I expected. Saturday went relatively well. There was still no bowel movement, and there was some minor swelling. Saturday night, the Gators beat the Tennessee Volunteers in a miracle game. It was very exciting. Then the headaches started again a little after midnight. I slept off and on, and they finally disappeared completely around 4:00 A.M. Wow! I will seek advice at clinic on Monday morning.

These headaches are a killer, even if they are the only real side effect.

Sunday morning, I took my pills. Some of them really, really taste awful. My blood pressure and temperature remain good, and my incisions are slightly stiffer, but not really bad. I just walked to the end of our road and back, maybe a quarter mile total. I need to do more of this.

Major news has come! Bowel movement came Sunday morning. A great relief emotionally and otherwise.

Sunday night was another night of horrendous headaches, but they seemed somewhat less than before. Perhaps there is hope.

Then, there was clinic on Monday morning. Less than a week after the transplant, my wife and I awoke at 4:30 a.m. to drive an hour or more to Gainesville and Shands for labs and clinic. We arrived at 6:30 a.m. and arrived at the lab. The paperwork was not there, and the receptionist had no clue on what to do. Nor was she at all contrite.

Finally, after doing apparently nothing for a few minutes, she asked someone else what to do, and they indicated that she should call the coordinator’s beeper number. The paperwork finally came in at 7:00 a.m., but there was another glitch. The apparent office manager could not change the paper in a necessary machine. A patient finally solved this problem, and a very competent lab technician finally drew my blood. We knew that, due to the totally incompetent system recently put in place, it would be two hours before the lab results would be available. Ridiculous, but expected. Then we went upstairs to clinic, and were placed in an examination room at 7:30 a.m. At 11:30 a.m., a very concerned doctor came in to explain that the lab personnel - inexplicably - had failed to send the blood in for evaluation, and that we had to come back after 1:00 p.m. This created an additional delay of three hours. This was due solely to the incompetence, uncaring, lack of training, lack of intelligence - take your pick - of the entire clerical staff in the lab. While I am writing this, I am writing letters of outrage to the appropriate personnel who are in charge of the lab. As I said, every medical person I have spoken to indicated the system used to work, so it was fixed. I suggested, “if it aint broke, don’t fix it.” It wasn’t broken, but it surely is now. I suggested training, hiring competent personnel, or scrapping the entire system and going back to something that has worked in the past. It was totally unbelievable that anything could work so poorly, especially since that something affects medical care by truly competent, caring persons. If I do not get results, I will move on to higher administrators.

A bunch of women who would rather gossip, waste time, and do their nails and their jobs are frustrating when you are dealing with the Social Security Administration or the State of Florida Department of Children and Family Services, but absolutely amazing when you are dealing with health care. Who needs mood altering drugs - which I am taking as a result of the transplant - when today has almost totally altered my mind.

Now, for the good news. The laboratory itself and my coordinator (no doctors, of course, after an unnecessary three hour delay) told me that my lab results were excellent. Creatinin is down to 1.6. I guess I needed some good news after the day I had. And good news it is. In fact, from a medical standpoint, all I have had is good news. Medication reactions are not only common, but expected, and mine appear to be less strenuous than most. The incision continues to heal nicely. I have had only two very minor leakages of blood, and that was from where the access for peritoneal was. Blood sugars, for the most part, continue to come down, although there has been on peak (stupidly ate a snack in the late afternoon when I should have waited until after taking the blood sugar reading.) Labs again on Wednesday. Hopefully, something other than the results will go right this time.

Monday night was much better. I took my medications, prepared for bed, and took some Tylenol as a preventive. Had two ice packs ready, so I could exchange them when I woke up with the headache. The longest I was awake when I was awakened was maybe fifteen minutes, so I got a relatively good night’s sleep. Everything else continues to go amazingly well. I again had some jitters yesterday, but they are completely gone today. All I can do is take it one day at a time, and the days continue to look good.

I recognize that there may still be problems, but I feel stronger every day, and I feel that the final prognosis just has to be good. We are planning to go to a movie today (properly masked, of course), and I think an outing which does not involve doctors or - especially labs - cannot be a bad thing.

Day eight is coming to an end. The headaches were back last night with a vengeance, but, again, if this is as bad as it gets, hooray! The laboratory experience was much better today, and the labs were good. The doctor was very supportive (I got to meet with him twice today since the lab didn’t totally mess up), and we spent the day in Gainesville. We went to my daughter’s house and I took a nap and got to see my daughter, my son-in-law, and - best of all - my granddaughter. It was a wonderful day. Maybe tonight will be better on the headaches. One of my medications was cut back again, but probably not the one causing the headaches. However, we got two new icepacks which should help.

Diane