Wednesday, March 9, 2011

glitch in the road 2

Yesterday I met the donor surgeon for the first time. After an hour and a half I walked out of the transplant office more comfortable and confident than I've ever been about this entire experience. He was thoughtful, knowledgeable, patient—he started by reviewing my entire medical history (by now I've done this almost too many times), did a physical exam, and then answered all my questions, all Jon's questions, and continued fielding the many that kept coming up until we actually said good bye.


  • the diagram he drew of my soon-to-be incisions
  • when he said "donors do better" in terms of longevity and health (I'm holding on to that one hard)
  • how impressed he was that I gave birth with no drugs
  • that immediately put on the transplant button I gave him
  • the fact that he said, over and over, his first priority is to keep me safe and healthy

He was my last hurdle and he officially cleared me for surgery. He then said 21st was only a tentative date, that things weren't settled with my brother yet, that once that day was concrete someone would let me know.

That's all he knew. He had no more information.

I texted my brother as we left the building.

"Call me" appeared back on my phone in seconds.

The conversation was garbled (screw you at&t) but before I got on the subway I gathered there were issues from the test he'd had last week but he hadn't heard back about what came next.

The mom in me took over. I called my coordinator and asked/begged her to please have someone get in touch with him. She is an angel. He got a call seconds later.

When we got back downtown I learned that for him, next up is a hematologist. There are concerns about bleeding. And then possibly a liver biopsy. By the end of the night it was pretty clear the 21st is not happening.

The transplant isn't off, it's just most likely postponed for the moment.

My brother apologized for me having to wait.

I wish I could apologize for the extra suffering he's going through. I wish I could take away the uncertainty and the doubt and the unanswerable questions. I wish this was going more smoothly.

I wish this didn't have to happen at all.

I wish he could be well.

But since this is where we are, I wish I could guarantee he'd be fine, that this kidney would last 30 plus years in him, that the surgery would be uneventful, that recovery would be a breeze, that we'd grow old together laughing about Sidney and Ida (we've named mine that as a nod to some lovely cousins of our mom's).

Sadly, none of the above are possible. What I can do is I can be a cheerleader. Send silly texts. Tell distracting stories. Keep things light and breezy (I excel at this). But deep down, I'm begging/praying/hoping/pleading that this is the last glitch he has to encounter.

And I can ask everyone out there to hope beyond hope this path evens out and Sidney gets to continue his journey as soon as he possibly can.

(insert your prayers here)


  1. I LOVE you, your brother and your blog!! My sister and I have sort of "been there; done that" so this ride you are on is so familiar. I know we had so many of the exact feelings you two are having....she donated to me (I'm 14 years older than her). Our surgery was 13 years 3 months, and 6 days ago (but I'm not counting). Like your brother, I couldn't stop saying "I'm sorry" and then afterward "Thank you". You are an amazing women giving an AMAZING gift of LOVE and I just wanted you to know this Alabama women is on your side! Wishing you and your brother the very best in the future and it will happen...the sooner the better.

  2. The 21st would have been good as far as "asap" goes, but whenever the day comes, it will be a holiday that we will celebrate for both of you. I'm sure the waiting can be agonizing, but one thing about anticipation, once it's over, it's over. Fingers crossed on behalf of two very strong people and their families! SC

  3. It's a good thing you didn't go for your manicure/pedicure just yet... there is a reason somewhere out there for all the delays ... patience is a virtue . Hang in there and realize that we are all praying for you both and this WILL happen when the time is right. It's difficult to wait ... but hold on to all those positive thoughts ... what you are doing is a true "mitzvah."

  4. Hi there.. I was a donor in 2006 to my adoptive far as telling you on the donor side..I will tell you I am completely fine. As far as th feeling of being able to help, there is one thing you need to know..You have 2 jobs in all of this ..1. the kidney donor, while it sounds all heroic and such , I find it weird when peole gush over the fact that I gave up a kidney.(as you will experience in the future) 2. Support. In any way shape or form. physically, mentally emotionally. You will be able to do this up until you have surgery and probably a day or 2 after start right back up from where you left off. I pray that all goes well for you both. Medical delays can be so complicated and frustrating at times, but remember you both must keep yourself with a healthy head and heart. Everything always works out in the end. Delays are always a bummer. My surgery was delayed due to a 9 yr ld boy needing our surgery time. So in your case this delay will help the doctors better understand issues that may have arised during surgery. I have a policy (as I work in the medical field) check, check, and recheck.. if it takes longer than so be it. But better safe than sorry. Bless you both :)Marci, Ohio

  5. I'm glad I found your blog. We are going through a similar experience right now. I am a potential donor for my younger brother. We are hoping for an April surgery date.

    I liked that you've named your kidney. I'm praying for your and your brother and that this is the last bump in the road to a successful transplant.