The agonizing wait

[RKEM]

So I've gone through all the testing and have gotten the green light to be a non-directed donor.

So far they have been trying to create a chain but apparently, nobody in the paired exchange program is compatible. Eventually I suppose if this can't happen, there ought to be someone somewhere who is compatible with me.

I'm wondering if it's just me or if it's normal to be anxious to get this thing going. After all the testing and waiting the wait is slowly driving me nuts.

Could the fact that I'm fairly small and light play a factor in who I can donate (i.e. my kidney would not be suitable for someone much larger or taller than me)?

[Fr Pat]

     I am not a medical professional, but from what I have read it appears that some hospitals are more strict than others in matching the size of donor and recipient. When it is a "direct" donation (for example a sister donating to her brother) they may give more leeway. When it is a chain they have the luxury of being able to try to find the very BEST match for everyone because they have some options.
       Fr. Pat

[RKEM]

It's so discouraging. Had surgery scheduled but with a new surgeon. We're right down to the wire and scheduling pre-op appointments and tests and I just ask for them to confirm that this surgeon can do the incision at the bikini line like I had discussed with the initial surgeon months ago and the transplant coordinator. There was a sudden silence on the line and apparently they're not sure?!? 

Throughout this process I think it's the first time I've felt angry. I've told them repeatedly, after being told I could choose, that this is what I want. It's the one thing I ask. The one need I clearly communicated repeated and apparently it's not even an afterthought. I'm sure for the transplant team this is a minor issue, their whole goal being to make people better, but I'm still going to wear the scars.

And now there's the added guilt of knowing that there is someone out there, waiting for my kidney, and I may be holding things up for what is cosmetic reasons, yet I don't understand why they would just ignore what I had asked them from the get go and went ahead and scheduled things. I felt strangely as though what I wanted wasn't important. Hate to say it but it did make me feel like just a source for an organ, not a person and was a massive blow to my trust.

[Fr Pat]

     Sorry for your problem. But also keep in mind that it sometimes happens that there are problems during the laparoscopic kidney donation surgery (e.g. bleeding problems) and they have to switch immediately to the open cut method, so regardless of which exact type of surgery has been decided upon beforehand you MIGHT wake up with the large open-cut scar. It does sometimes happen, so nobody can fully guarantee what your surgery scars will actually be.
   best wishes,
        Fr. Pat

[CK]

For whatever it's worth, my main incision would be covered by a bikini (were I the bikini wearing type! Those days are long gone) but the three (?) holes for the laparoscopic instruments would still be visible. They aren't huge, but they are noticeable, I'd imagine.  No one sees them but my husband, who was my recipient, so he'd better not complain. 

They can't promise you anything, I'd imagine - because things go wrong in surgery and they have to make change.  If your scars are visible, wear them proudly.  

[RKEM]

I'm aware of the small ones will always be visible and I'm ok if things go bad that they need to switch to open nephrectomy or something else. It's just that being told that one thing is ok and then it's not even being considered or given thought, that is what I found unsettling and a bit scary.

[RKEM]

Well, the surgery is back on for September 17th. 

Seems that the coordinator was not really well informed about what the surgeon can and cannot do. He won't "promise" a bikini scar without seeing me and I understand that and I'm ok with that. The first surgeon did mention that sometimes there were size issues but at five foot one and 115 pounds (and the fact that the first surgeon, when he saw me, said that there was no issue), I'm not too worried about being too big or heavy. And if it turns into open nephrectomy, I'm totally telling people I was bitten by a shark. 

Now the wait continues, keeping my finger crossed that the final cross-match is ok and that me and whoever is out there waiting for my kidney manages to stay healthy for the next 11 days. I'm finding myself feeling rather overprotective of my health right now. Now that there is someone, even if I'll never meet them, any stupid accident or bug delaying the surgery would have an impact on someone else. And if I'm freaking out over the wait and such, I can only imagine how terrible it must be if you're super sick and you're waiting for a kidney, possibly for a very long time.