Acute Rejection vs. Chronic Rejection

It's a tough one today. I am just back from the transplant hospital. I went in for a regular visit, but with complaints of swelling around my eyes and knees, with a weight gain of 3 kilos within the last week, (that's 6.6 pounds). I also had some pain around the site of the new kidney over the weekend, and it's been on and off this week. I called about it on Monday and was told that I should call back only if I developed a fever or the pain increased, neither of which occurred.

Today, during my visit, this week's doctor explained that the number 2 cause of these symptoms is acute rejection, not to be confused with chronic rejection. The doctor did not explain the difference, so I was extremely alarmed with the news. This was until he asked me if this was my first experience with acute rejection. I wondered at his question, thinking 'How can it happen more than once? A rejection is surely has ultimate consequences'. So I persisted with my questioning. Now I'm slightly less worried, but still, I have been sad and crying after reading all I could on line:

Acute rejection happens to almost all patients who receive organ transplants. The patient's immune system and white blood cells recognize the transplanted organ as being foreign and mount a defense against the organ. The new organ is then incapable of working at full efficiency, and symptoms of rejection become apparent to the transplant recipient. These symptoms of rejection are very similar to the symptoms of organ failure.

Acute rejection is almost always reversible with special medication. Once successfully reversed, some patients never have trouble with acute rejection again, although some patients do have subsequent episodes. Most rejection episodes require admission to the hospital. Acute rejection is rare beyond the first year of transplant.

Signs and Symptoms of Kidney Rejection
Fever over 38°C or 100.4°F
Decreased urine output
Weight gain over 2 pounds per day
Increased blood pressure
Pain over kidney

I do have 3 out of 5 symptoms: the latter 3. I've asked them about 2 of these symptoms for the last month (as I've struggled with fluctuating weight and high blood pressure since the transplant) and they've largely put me off. This is due to the fact that my creatinine levels (the protein that is filtered by the kidneys and the most reliable test for kidney function) have remained extremely stable. But I also put it down to the fact that this hospital just does not have the staff nor the time to give me (or any other patient) more than his or her alotted ten minute visit every two weeks. It is really frustrating and depressing.

I have joined sites like Transplant Buddies and looked up as much info as I can on line. But the lack of human care is hard to handle. I really have nothing else to say until I hear the results later on this afternoon.

7:07pm: the results were good. I was told that my creatinine is 'beautiful', at 84 (0.95 U.S. level). Phew. What a load of concern. It is so scary.

In two weeks time, I will have a curve blood test done to see how the levels of drugs are in my system, to see if they can be lowered. Since they are toxic for the kidneys, this is crucial for long-term kidney health.

2 months and 3 days after the transplant

I really have my ups and downs during this recovery period. Most of the time, I write when I'm feeling pretty good, so I don't end up expressing my fears and sadnesses on this blog. Is it because it's a public blog? Am I trying to put on a brave face? Perhaps.

There is so much left to chance in kidney disease. Not even time will tell when the kidneys will finally fail, when a kidney will become available, if a body will reject my the kidney. People ask me 'How long will the kidney last?' I tell them that there is absolutely no way to know. It could be for the rest of my life. It could be for another month. The unknown can be scary.

I realised after I had my transplant that many, many years had been dictated by fear. Fear of the pending dialysis. The unknown of dialysis. Fear and lack of knowledge about a potential transplant. About 9 years ago, in California, I had a GP I didn't much care for. He was more into predicting than helping me understand, and once barked at me 'You are going to snowball into end stage renal failure in 5 years!' The word 'snowball' haunted me for those years. What did it mean, exactly, this 'snowballing into renal failure'?

Since I couldn't get medical insurance easily in the States, as I had a 'pre-existing condition' and insurance was prohibitively expensive unless I had worked for a corporation that was prepared to pay for it, (I didn't), I ended up having to go to several different county facilities, both in San Francisco and Los Angeles. I had many, many different doctors. The bad thing about this was that I received no consistant care. Perhaps that is why I am so keen on seeing the same doctor each time in my current hospital.

But I was talking of fear. Fear was there before the dialysis, before the transplant and, I'm sorry to say, fear is there still. Now the fear has another place: though I don't think of my body rejecting my new kidney, of course I know that I am scared, somewhere in my mind, whether it is in the background or forefront. Some of the fear can be assuaged when I have information. I was scared that I have to urinate so little during the day and so much at night - until I asked and was told that this is normal for transplant patients. And now I'm scared every time I feel any pain around my new kidney area. Is it the scar healing inside? Is it the new kidney? 'Someone tell me what's going on!', I want to shout. But no one can really tell me what's going on. That's for my body and my new kidney to work out.

Disease and surgery can create a new lease on life - and I know that it has for me. In many ways, I am stronger and more confident and more 'me' than I've ever been before. I am not afraid to speak my mind, nor to be direct and fearless with others. And acceptance is surely one way to deal with fear of illness.

A social worker (ready for the Dutch word? Maatschaapelijkwerker) here in the Netherlands was filling in for my regular Maatschaapelijkwerker. She gave me something to think about when I said that I was scared that my body would reject my new kidney. She said 'If that happens, you'll figure out a way to deal with that when that time comes'. And, as I remind myself of that, I realise that that is what we do. We deal with things as they come. And no amount of planning or worrying or fear ever really helps, as all we have is the present. And I do believe that that frame of mind is the best way, the only way.

But I have to tell you, it is certainly is easier said than done sometimes.

Day 58: Instructed to take drugs, yet asking questions

I went in to the hospital today. I haven't been for 2 weeks, which is nice for my schedule, but I really was glad to go in and have a lot of my current questions answered.

I used to have a blood pressure machine at home, but it belonged to the dialysis ward, and it's gone back to its rightful home. So I was really suprised when my blood pressure was taken and it was 150/100, sky high for me - I have always been a steady 128/76 kind of person. This, too, is from the drugs. At some point I really have to wonder - if this wasn't a case of life or death, this transplant, would all of these drugs and their side-effects be worth it? I know that some of these side effects are temporary, but what long-term effect do they have on the body? But the reality is I know full well that these drugs are keeping my body from rejecting my new kidney and am ultimately SUPER grateful for them!

The current side effects of the most aggressive of the drugs I'm on include:

Elevated blood sugar, making insulin a necessity (Prednisone, Neoral)
High blood pressure (Neoral)
Headaches - can be severe (Neoral)
Night sweats of a duration of 3-5 hours (Prednisone or Neoral)
Day sweating - is it all of the drugs struggling to get out?
Distorted vision (Not sure which drug)
Swelling around eyes (fluid retention) (Neoral or Metformine)
Swollen face (Prednisone). I don't really mind this side effect, as it pads out my face quite nicely!
Oily, oily skin and hair (Prednisone). Another hidden plus effect - at 43, it's kind of exciting to see oil on my skin.

I'm having an ultrasound done a week from today to see why my abdomen is so distended. I truly cannot wear jeans or anything I used to. I have been wearing leggings and sweat pants (I now reserve sweats for house only!) for the last two months! I had heard before my surgery that PD patients' abdomens can still produce fluid as they are so used to dialysing, but that mine would probably not due to the short time that I was on dialysis. If it's somehow the case, how on earth will they get the fluid out now that the catheter is gone? I really don't want to think about it!

All these crazy questions with so little answers. Hence the blog - it really helps to get everything down in print. Poor Gary is over-inundated. I have so many thoughts and theories. Being an inquisitive type makes my mind overly busy. A typical example of my train of thought is this: I have been given a calcium supplement that contains E numbers (additives) and artificial sweeteners, including Aspartame. This is stuff that I usually avoid. When I read about Aspartame on the internet, almost every site had some info about it being controversial as far as health safety and even linked to causing blood sugar level problems. I find this stuff fascinating! So of course I brought it up with my doctor.. he told me that if I have 4 units of dairy (4 glasses of milk or cups of yoghurt), I can stop the tablets. I wonder if they think I'm a bit crazy with some of my questions, but then I'm quite sure they've heard it all.

8 weeks today: A new kind of kidney belt!

Have I mentioned that my new kidney is located in the front of my body, down between my right hip and pubic bones? It's fairly unprotected, especially since I have virtually no body fat. My nephrologist (nefroloog in Dutch) told me that a bike accident that caused the handle bars to go into this area could cause the loss of my beautifully working new kidney. I thought this interesting but perhaps somewhat unlikely. I Googled all sorts of phrases to see if I could find anything regarding this issue, but came up with absolutely nothing. I put it out of my mind..that was until a friend told us of a woman he knows who indeed lost her transplanted kidney in a bicycle accident. I have now been thinking of how I can protect myself while riding, as having a bike (and therefore not relying on a car and all of its entrapments) is one of the best things of living in The Netherlands.

Day 47 - Not so much to report

The odd thing about blogging, in my mind, is that I never know if anyone is reading the blogs. Is it just my particular info, going into the ether? So when I received an email from a friend telling me that I must update it at least every 3 days or he would become concerned, I thought to myself, 'Maybe people assume that post-op life is one of relaxed bliss, propped up on pillows while blogging away'. I can assure you that it isn't like that. See yesterday's post for more info.

The person who instructed me to write in the blog more often has now suggested that if I write something controversial, I may have commenters so that I know people are reading the blog. But stirring controversy isn't what I'm after with this blog. Controversy is for fame seekers and the media is all about creating controversy. I'm tired of the whole thing. That's why I now live in The Netherlands and not Los Angeles. But I digress.

As far as the hospital visits go, last week I was told that I now only have to go for check ups once every 2 weeks, so it will be a real break for me not to have to go this week, as it's a distance to travel and a bit of a production having blood drawn and urine tests done.

It has been a much needed break for me not to write anything about disease or post-op care with such regularity. For life as a more healthy person has a way of swallowing up the time:

I am currently busy with work (2 full days last week), reading (George Eliot's 'The Mill on the Floss' - controversial in 1860!), shopping for food to make wintery dinners. We have a friend here building some much-needed shelves for Gary's (overly, in my humble opinion) extensive record collection. As he has been here in our woonkamer (Dutch for living room) for 3 days straight, that leaves the tiny bathroom, the small kitchen and the bedroom in which to retreat. It's been trying to snow; it's bitterly cold and windy (-7 celcius, 19.4 farenheit). The canals are frozen. It's not much fun to be outdoors because of the wind. So I've been trying to cheer up by looking up sourdough-starter and bread recipes; that will be a project for this week. It's just too hard to relax with someone working in the house. And that's it for another tame session of my blog!

Day 46 - Insomnia - drugs or stress?

I have been having bouts of insomnia and worry at 5 or 6 am until the time that we wake at 7:50am. I have read that many of the drugs I'm on can cause it, but I'm sorry to report that insomnia is nothing new to me; I have had bouts of insomnia for years, but during the time I was on dialysis, I was also on a drug to control kidney-failure-caused muscle spasms. Clonazepam, this lovely drug, made me sleep like a baby for the first time in years. And though I have two full bottles of this stuff, I've been weaning myself off it for the last 6 weeks. It is advised to go off it really slowly, incrimentally. I am down to an eighth of what I used to take. I had hoped that the transplant would help the insomnia, but I'm quite sure now that it's all down to stress factors.

Stress: the last 3-4 years have been so incredibly stressful. Last year was the ultimate in stress: we bought a very small - 50 square meter (164 foot) house that ultimately needed to be rebuilt while we were living in it. My kidney failed and I underwent dialysis surgery and care and then transplantation. We worried a lot about finances. And that is still the case.

(We need a holiday. Gary hasn't been for 6 years; I've not been since I came here for a week in 2004. Prior to that, my last real holiday was Morocco, 1992).

I have so much concern about the unknown factors which come with transplantation. Why is my abdomen still so swollen that I look pregnant? I am told that it's because I'm thin, but it still bothers me because I like to know all of the information. And why is it so difficult to urinate sometimes? I was finally told that one, and how helpful it would have been had I known in the beginning that transplanted kidneys have no regulation of output volume. So instead of urinating regular amounts at regular intervals, a transplanted kidney produces irregular amounts at irregular and delayed intervals. And, as I had noticed, I was told that patients experience that most of the urinary output is..at night, when I want to be sleeping.

One thing that is really, really difficult is that there was no real communication that post-surgery would be so time consuming and busy. I had envisioned a rest period with reading, yoga and lots of time to myself. Though I have been doing a bit of this, there has been a lot of time filled with travel to and from the hospital, self-monitoring, worrying about finances due to not working much, dealing with administration for reimbursement for donor costs, attempting reimbursement from my insurance company for things they've left unpaid for 6 months, scheduling work, trying to locate an affordable school for Dutch lessons (for my lack of the language has me at such a disadvantage).