Last night, I met up with one of my best friends. We met at a bar and had some usual bar fare (i.e. chicken wings, calamari, etc).
After she dropped me off at home, I logged onto my facebook. When I got there, I noticed pictures of another girl that I had met online who has Lupus. I was pleased and delighted to see the new album she had posted. She had just returned home from the hospital….after having received a brand new kidney!
The pictures show the numerous battle scars she had endured during her hospital stay. These battle scars included bruised wrists from IVs, bandages on her neck from where another tube had been inserted, and staples in her stomach – one set of staples from where the kidney was placed, and another set of staples from where her dialysis line had been removed.
Samanta, the lucky kidney recipient, had told me earlier in the year that the day for her to receive her kidney was drawing near. I kept her in my thoughts and prayers, as I know that something as simple as a cold or a cough or whatever can definitely throw a wrench in any kidney transplant plans.
Don’t get me wrong, I was and am one thousand percent happy for Samanta, but when I saw her pictures, it also got me thinking about myself. How nice would it be for me to (finally) receive a kidney to call my very own? My father did all of the necessary tests and he was a match for me. We went through all the tests, and were even told that we were cleared and ready for surgery. Then, at the last minute, we were told “Um, your dad’s blood pressure is too high so we can’t do the surgery. He has to bring his blood pressure down.” I totally understand, as I know that him having high blood pressure can be hazardous to both of us. But geez, I wish they hadn’t gotten all of our hopes up by telling us that we were cleared and ready for surgery, and that we were on the “cancellation list”, in case any transplant surgery had to be cancelled for whatever reason, they’d call us and we’d have to rush over to the hospital to fill the spot. Sometimes when it comes to these hospitals, as my dad would say, “the left hand doesn’t know what the right hand is doing”!
Anyhow, it was only Thursday when I spoke to Julie about putting me on the deceased donor list. Julie is the living donor transplant co-ordinator at the hospital. I think that it’s best. If, in fact, my dad’s blood pressure does end up going down (without the use of medication) and he’s able to donate a kidney to me, that’s great. But at the same time, I also feel that me going on the deceased donor list might even decrease the pressure he feels to bring his blood pressure down, subsequently causing his pressure TO go down, therefore making him a suitable donor again. (and yes, I say ‘again’, because he was cleared and ready to go about 3 years ago…but before surgery, I got sick. Then 2 years ago, we were ready to go…then I got a perforated bowel! Now, his blood pressure is too high! Talk about bad luck! Hehehe).
On the other end of the spectrum, I’ve spoken to at least 3 different people who are home hemo patients, and they’ve said that they’ve taken themselves OFF the deceased donor list and plan to dialyze at home for the rest of their days. They appreciate the predictability of home hemo, as well as the idea of not having to take as many pills. It totally makes sense. I’ve even spoken to 1 lady who is a conventional dialysis patient. She’s seen both sides: the transplant side and the dialysis side. She has also taken herself off of the transplant list. She said that she also enjoys the predictability of dialysis and didn’t do well with all of the transplant medication. Also, with all the the hardships she had to go through after receving her kidney where medication and such was concerned, her kidney didn’t last very long…maybe 2 years or so. (But, between me and you, I suspect that she had these problems because she wasn’t being compliant. I’m sure she didn’t take her medication when she was supposed to and wasn’t taking it consistently. As it stands now, when I was still an in-centre patient, she wasn’t very compliant with her dialysis. She’d skip days – sometimes to the point where she got so ill that she’d have to go to emergency to get urgent dialysis, and she’d also shorten her in-centre dialysis runs – sometimes to 2 hours only! So her opinion is pretty iffy).
I’m glad that Ms. Samanta got her kidney. She’s young – 24 years old, 2 years younger than me. She deserves to experience life the way she wants to experience it and be dialysis-free. I hope the kidney works well for her.
Since I’m on the deceased donor list now, my name will be placed on the list as of the date that I began dialysis, which would be in November of 2004. I hope that my time will come soon; I hope to hear my telephone ring soon and be told to hi-tail it to the hospital because there is a kidney waiting for me.
….but then again, who knows? If that doesn’t happen for a while, I might just feel like some of the other home hemo patients. Perhaps I’ll prefer the predictability of continuting to do home dialysis too….?