Well, it's fourth of July weekend - our porch flag is flying on a warm and sunny day, the ocean looks calm and peaceful, and summer is finally here. It has been an interesting week, more learning about my impending future, so thought I'd post this update.
Susie and I went to an orientation meeting for Peritoneal Dialysis. This is the type I will choose if I am unable to find a kidney before losing all function. Right now I am at 15% function, and it is up to my nephrologist when and if dialysis should start. There are other factors such as creatine level that are considered, but it is a possibility at any time. I could go on as I am for months, or I could lose more function tomorrow. So I have to be ready.
Briefly, Hemodialysis has to do with the blood, a patient is stuck with a needle 3 times a week at a dialysis center, hooked to a machine, and the blood is scrubbed over a 3-4 hour period. These appointment times are non-negotiable and must happen three times every week. No time off for good behavior.
Peritoneal Dialysis involves having a tube inserted in the peritoneal cavity (where your internal organs live), filling the cavity with a solution which cleanses the blood, then draining it out, and putting in another batch. This must be done four times a day and takes an hour or so to do each time. At least you can do this at home or while traveling. Eventually you can work up to a machine that scrubs your blood at night while you sleep. You can then travel with these machines on airlines and such, but the 2 litre bags of solution must also be taken with you, or they are shipped ahead to your intended destination. You will go through four bags a day.
So we are preparing for this possibility. A social worker will be coming to our house to make an assessment of the cleanliness of our home - infection is a critical factor - then sometime in the future I will have the catheter tube surgiclaly inserted. I hope never to use it of course, but if I do crash, I will be ready. If I am able to have a transplant soon, they will just remove the catheter at that time.
For you considering being a donor - I haven't received the official letter from UCLA confirming my addition to the national transplant list yet, but as soon as I do, they will accept the faxed application forms. I can send these to you by email if you want me to. Being a donor is a very personal decision. I am humbled that anybody in their right mind would want to give up a part of their body to me - it is truly a life giving gift.
Well, enough for this time - I hope you all enjoy the holiday weekend - we're just taking it easy. The unkindest cut of all, I had to stop after only nine holes of regulation golf yesterday - I was about to fall over. I will have to put that on hold until after my new kidney I think. Well, one day at a time.
Love to all,
chip
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