Things are moving fast! Test day next week!

[Yellobelle]

So, I got the impression that the whole donation journey tended to be long and drawn out. I guess that is not the case at my center!

We confirmed my husband's blood type late last week; I told the transplant coordinator on Friday that we wanted me to be tested first. She fedexed the 24-hr urine kit and I called when I received it. They scheduled CT, chest X-ray, labs, EKG, and meetings with the social worker, transplant coordinator, and dietician for next Wednesday, Sept 24th! So, I spent most of yesterday in a little bit of a panic.

DH starts a new job on Monday, so one of my friends will hopefully be able to go with me to the hospital (I kind of hate hospitals). Lined up a babysitter. Haven't decided yet whether to leave the baby with the babysitter or bring him along (my friend would help with him if I brought him along). It would be a really long time away from him since he doesn't take bottles very well, but at least he loves food.

As far as I knew, the transplant timeline was next spring, so I am not sure if something has changed? Maybe they are just super efficient. I tried scrolling through the reams of transplant buddies on here, but couldn't even begin to pick one out. Too bad you can't sort by "dealt with family drama." :-) Anyway, freaking out just a little because it is starting to feel real! And the family is being weird and indifferent, so that is throwing me off, too.

Ultimately, I really really would like for me to be the one to donate instead of my husband, so please pray that I pass all their tests with flying colors! I have always had perfect lab results, blood pressure, etc. I do have some extra baby weight, but I am already down 10 from when I filled out the forms, so I expect it to go well!

P.s. I follow the FB page but my recipient joined it too, so I don't feel like I can post over there. :-(

[elephant]

Dear yellobelle,

That was pretty efficient.  I went from first testing to donation in about six weeks, including a week delay for a surgeon's convention.   

I always think of hospitals as a great place to pick up a bug.

Keep us updated on your progress.

Love, elephant

[Yellobelle]

Very good point about germs! Think I will leave the little one at home...that is just a looooong day away from him! But I did manage to book his favorite babysitter. She is the only one other than my husband who can handle him for any length of time.

I am expecting a late February -ish surgery date based on the timeline my recipient gave me. They wanted 6 months of recovery after her nephrectomy. It will throw me a bit if that timeline moves up significantly. The anesthesia is really fine for breastfeeding, but there is a pretty good chance the surgery will dry up your milk (they haven't told me that, just previous experience with minor surgery). This baby is such a bad nurser, that I figured there was no way I would last all the way until February anyway, so I wasn't stressing about it. I was just trying to survive nursing through 12 months.

What would you ask the transplant coordinator, dietician, and social worker?
Complication rates?
Follow-up care?
Expected dietary changes after transplant?
Expected expenses that may not be covered?
Resources to replace lost income?
Any resources for therapy before/after?

I assume they can't actually tell me anything about the recipient's status with HIPAA laws, but then how do you know for sure that your recipient is a good candidate for surgery? I am not sure how well I will process it if she rejects the kidney, which I know is something I need to think about.

[jennybebopper]

As for the recipient's readiness for surgery, they are screened and continually evaluated too.  Obviously they are not 100% if they need your kidney, but there is also a line that can be crossed of "too sick" for transplant, either being delayed or cancelled.  This is something to keep in mind as you might prepare for a certain date only to have it moved back to allow one of you to get over a bug.  When it comes to rejection, this is a possibility no matter how great you both look going into surgery.  Potential complications - for both you and the recipient - are something you should discuss with the team and take the time to consider before you go into this.  Identify your support systems beforehand; even if things go smoothly there are going to be things to process.

What you can expect from your team in terms of follow-up care after you're sent home?

It's never a bad idea to get a professional outsider's opinion too if you have the resources before you make your decision.  I know several people have suggested consulting your own nephrologist - or at the very least discussing your renal function with your own primary care provider.  If you are already considering therapy support, see if there is someone outside of the team you can connect with now.  Hopefully the program social worker, coordinator, etc will be great people to help you process, but I like the idea of having someone not connected to you, your husband, or your recipient to go through pros and cons and to be there for you afterward.  Not for everyone, but something to consider.

You should never feel pressured from your team to push things forward any sooner than you're ready.  It sounds like you already have a timeline in mind; be open with them about this and they should respect any requests you make to protect the well-being of you and your little one.  If things end up getting put on hold a bit for the recipient, it is their job to relay that to your recipient in a way that doesn't blame you at all.

[CK]

I feel like mine went pretty quick-I started the testing in September and donated in January, if I remember correctly.

My recipient had the nephrectomy and transplant at the same time.  We had a bet as to who would be up walking first. Ha. I walked to his room the first night, and 3 days later I had to make him get out of bed.  They told me that initially, after they transplanted it, my kidney did nothing...for a while... and then it started going.  Phew.  That would have been awful had it not kicked in.

You should ask all of those questions and any others that you have.  Since your recipient is your sister-in-law, won't she tell you what's up on her end? I did tons and tons of research. By the end of it I concluded that I take on more risk every time I pull out of the driveway than I did undergoing surgery OR giving up my kidney.

[Yellobelle]

I am not at all close to my husband's family. We see my SIL a few times a year. And I don't really expect her to be completely forthcoming with me about her health. I think she is very concerned about pressuring us on one hand, and feeling really, really desperate on the other hand. I haven't told anyone in the family that I am getting tested first or that it is next week..his family has been pretty awful about the whole thing, and i don't want to deal with it.