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.