it’s here

Yesterday I had “the big” appointment. A meeting with the entire transplant team.

It was a huge moment if you consider that at one time I wasn’t guaranteed to be approved for transplant because of the tendency of my disease to come back and infect a new kidney. To be fair, I wasn’t in love with the idea of having another transplant and wasting the most selfless gift a person could give in a mere 5 years. I would rather die on dialysis. My youngest son became furious at me when I told him that, he said he would donate a kidney to me if it only lasted a year. That kind of love is hard to find.

The meeting was a group session to start, there were 6 patients in all, most accompanied by supportive family. I was the only one in the room on the second go-round. My doctor, a brilliant man renowned in transplantation gave a 90 minute lecture on all of the details of dialysis, patient mortality rates for dialysis vs. transplantation, and this particular hospital’s (and his own) reputation and statistics vs the rest of the country. They were very encouraging, Despite the fact that I slept through most of it. The night before I slept for a whopping 1 hour. Insomnia, a lovely side effect of end-stage renal disease, has been kicking my ass.

After the group session we broke off into individual rooms where we were all to meet one-on-one with financial coordinators (they handle insurance and offer financial assistance), social workers, the transplant surgeon himself (they only have one), a pharmacist, the transplant coordinator and then the Dr. that oversees it all.

The pharmacist, once aware that I was on round 2 had little to offer. The social worker tried to pick my brain about my relationship with my mother. I shut her down immediately when she asked me about how my illness has affected my life.
“You mean besides getting divorced, losing my house, my job and access to my family it’s been a piece of cake.”
She was not amused and within minutes she was also convinced that I had a “whatever happens happens” attitude and that I am dealing just fine. Good luck selling me therapy. Next!

I then met with my coordinator who arranges all of the testing I have to go through to make sure I’m healthy enough to undergo a transplant, as well as work with potential donors. She was young, cute and funny so I went easy on her. The transplant surgeon was informative and brief and when he left I had only to meet with my brilliant Doctor and I could then go home. I was exhausted and feeling lousy.

I waited for about 15 minutes for him and when he walked in, he took one look at me and said “you need dialysis. Yesterday.” He asked what the holdup has been with my Nephrologist and I told him that my fistula, a surgically installed dialysis port, has not matured yet. He told me that he was initiating “plan B.” He called my Nephrologist and made arrangements for me to have a temporary port.

Monday, they will insert a catheter through my neck and into my heart. I will start dialysis Tuesday at noon.

Here we go. Wheeeeeeee!

29 thoughts on “it’s here”

  1. That is still great news Mr. Bill, although I feel for you on the port installation. I’ve never had one and am hoping to avoid it, but I suspect that after years of IV my veins will some day give out and I’ll be forced to do it. Hopefully you can reassure me when that happens because I am sure it is not the most comfortable experience in the world. Be that as it may, it appears things are definitely looking up for you. As long as there is hope there is life!

    BTW, is sounds like you are in very good hands with that “brilliant” doctor.

    Liked by 1 person

      1. I not so sure about that. If I didn’t think it was in my future, perhaps. I am sure whatever you write will make me cringe. I have heard patients in the apheresis unit moan and howl as they get theirs inserted while I am having the procedure done, and it made my skin crawl

        Liked by 1 person

  2. My God, Billy. I am so sorry you have to deal with all of this. I have to say though, your humour is intact and I truly believe that it will carry you, and is. You are so strong and that is evident from the things you write. It’s incredible, actually how you are handling all this shit. Can’t wait for you to feel better soon!

    Liked by 2 people

  3. Maybe I don’t fully understand any of this, but I’m stoked for you that you’re getting the dialysis jumped up, because it quite simply sound like you need it and it will make you feel better. Go, man, go. And to think that you’re moving forward, taking steps towards another (perhaps far better) transplant, well that’s good news to me, too. Just want you better, my friend. And your son is quite frankly awesome. Keep us in the loop. We’re all with you, brother!

    Liked by 2 people

  4. The fact that you can find humour in all this crap is testament to what an amazing guy you are Billy. Not sure if one says ‘good luck’ in this type of situation so I’ll just send you a massive virtual hug instead ;O) xxx

    Liked by 3 people

  5. Your health system is so different to ours, eg my nephrologist told me dialysis is provided here, even at home they set you up with whatever you need. Anyway Bill I do hope all goes well for you.

    Liked by 1 person

  6. I wasn’t trying to elicit sympathy with this post. I’ve known about dialysis for a while, it’s not unexpected. I just wanted to give an update. But thank you all for the kind words. This is just another chapter in my story and I will handle it like I do everything else… With inappropriate humor

    Liked by 2 people

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