Hoping to be a donor to my husband

[treehugger]

Hi all. I just posted my basic intro yesterday, but thought I would also post here on the potential donor board because that describes me. 

We are at the very beginning of our transplant-via-live-donor-paired-exchange journey. On Monday, April 20, I mailed my live kidney donor application packet to UCSF. The medical questionnaire and consent forms came with tons of information and even a DVD, so now I know a lot more about the surgery itself and what's involved. I'm actually glad that I have had laproscopic surgery in the past, so I know some of what to expect.

Honestly the testing and preparation and surgery doesn't worry me (I just want it over with so we can get on with our post-dialysis lives), but I admit I am now pretty concerned with the logistics of us both having surgery at the same time. I know that we have plenty of time to worry about/arrange that, but for some reason, it's the one aspect of this whole thing that I hadn't really thought about yet.

I have already sent out a warning to close friends that I may be soliciting help sometime in the future. As hard as it is to ask for help, I know I have no choice. Being a rather independent person, the no choice thing is actually good, so I won't agonize over it. I will just ask, and those who are able to, will answer. I don't have any family nearby, but Joe does, so we won't lack for willing hands (his dad will probably drive me crazy, but that's another story and another post).

I am looking forward my donor coordinator contacting me about my application so that we will learn more about the timeline of this whole thing. I am fully expecting it to be a long, patience-testing process, especially since the paired exchange program in California is still relatively new.

Looking forward to chatting with other past and future donors here and at livingdonorsonline.org.

Thanks for reading,
Kara


 

[willowtreewren]

Hi, Kara,
I hope you all the very best in your transplant journey. I am still trying to become eligible to give my husband a kidney. We are a perfect 6/6 match, but my own kidney functioning falls below the parameters of our center. 

They have agreed to re-test me (at my expense) whenever I think I might be ready. I'm not postponing, except I want to do everything possible to assure that the next time I'll be successful.

Good luck. Post often.
Aleta

[treehugger]

Thanks, Aleta, and thanks for welcoming me on that other thread as well. What a great place this is! 

That's so amazing that you are a perfect match for your husband. I sincerely hope that the other barriers can be overcome.

You can probably imagine how excited I was to learn about paired exchange because I have known since the beginning of his diagnosis that we did not have compatible blood types, so no direct donation for us. I have always wanted to be the one to donate to Joe, so I hope everything checks out with my health *and* they can find us a match (or multiple, daisy chain matches, I guess).

Have a nice weekend,
Kara

[petey]

Kara,
I was a living donor to my husband Marvin in July of 2000, but we were a low match (1/6).  I "bounced back" rather quickly, and I had the "open incision" (about a nine-inch incision, mid-tummy around to the side).  Yes, you will need some help, but really, it wasn't difficult at all for us.  I'm an extremely independent person, and I thought I'd have trouble asking for help, but I didn't.  My parents came home with us for a week, then they went to their house (2 hours away) for the week-end.  They came back the next week, but we didn't really need them that second week (but, how do you tell your mom and dad that?).  That second week, Marvin and I were both up and going strong (I was moving a little slower than Marvin because my incision was so much larger and I had never been in the hospital or had surgery before the transplant).  A week or so later, and you couldn't tell that either of us had had surgery at all.

Let us know how it works out for you.

[kellyt]

Good luck with your paired donation.  I hope everything works out for the best.  I love your Grey!  I have a retired racer myself.  That is a Greyhound, right?  Sure looks like one. 

My donor got along quite nicely following surgery, however, she readily admits she did too much too fast and did regret it.   As a donor you will have some restrictions, but they aren't that demanding and they don't last but a few weeks.  Take advantage of the down time.  My husband tested to be my donor, as well.  They denied him because he had calcium in his urine and we were both disappointed.  However, we did realize after I got home that having us both "down" for even a few weeks would have been difficult, so I was glad he wasn't my donor.  I got his sister's kidney instead. 

It is a "patience-testing" process.  My transplant clinic was EXTREMELY picky and I was not happy when they denied my brothers and my husband, but soon realized things work out for the best.

Good luck!  I look forward to hearing about your journey!

[treehugger]

I love your Grey!  I have a retired racer myself.  That is a Greyhound, right?  Sure looks like one. 

However, we did realize after I got home that having us both "down" for even a few weeks would have been difficult, so I was glad he wasn't my donor.  I got his sister's kidney instead. 

Thanks, Kelly. Nice to "meet" you. Yes, that's my rescued racer, Mandy. We also have a second rescued Greyhound, a brindle named Enzo. They turn 4 and 6 this month. *ahem* Back to discussing kidneys (I could of course talk about my dogs all day long, but I promise not to here  ).

My husband's first reaction when we found out initially that I couldn't donate to him was relief that it wouldn't be me. I was surprised at that until he explained that he would be more worried about something happening to me than to him. Well, as things turn out, it will be me donating now anyway, and he's gotten used to the idea.

I am fully prepared to ask for and accept whatever help we need, and to take it easy post-surgery so that complications are minimized. Definitely hearing from other donors and recipients helps a lot with this kind of stuff. No substitute for first-hand experience.

Happy Monday everyone,
Kara

[kellyt]

Absolutely, Kara.  Definitely have some meals prepaired and frozen.  You will NOT be in bed 24 hours a day and nor will he (provided there are no complications with either of you).  I was walking around quite nicely, although hunched over.  I purchased a nice comfy recliner to sit in and it was great because I could lie back and take the pressure off my incision and getting up was really easy, as well.

I purchased some nice 400 ct sheets for the bed and cleaned my house (especially kitchen and bathrooms from head to toe before surgery.  Having someone come in to tidy up would be great for you two for the first few weeks.  You'll have your one and only follow-up about 2 weeks post surgery and by then you should be able to drive.   They will tell you that when he comes home there should be no dirty dishes laying around or in the sink, all trash needs to be out of the house, etc.  I do a thorough clean out of my fridge weekly to get rid of left overs and such.  OH, I also went through the fridge, freezer and pantry a week before transplant and got rid of everything that was expired or close to being expired.  I restocked on certain spices and such just to make sure everything was fresh.

You will learn so much here.  This site was a God send to me.  I hope your husband is doing well.  You, too.  I can't wait for you to say ya'll have a date!  It's so exciting!

Oh, and I could talk about my fur-baby (brindle male named Frost) ALL day, EVERY day.    There is a photo of me, my husband and Frost in the "Pictures of our members" thread.  He'll be 13 in June.  He retired at 5.

[treehugger]

Thanks for the helpful info, Kelly. I feel like we will be able to be quite prepared, when the time comes, thanks to all the useful advice those who have been there can offer.

Wow you've had your greyhound a long time. What a wonderful retirement Frost has had. Our Enzo also raced until age 5. I looked (briefly) at the member photo thread, but had no idea how to go about finding your pic in all the hundreds of pages, so I gave up.

Take care,
Kara

[kellyt]

Yes, there are many Member photos.  They are well worth the look if you ever have the time.  I think we're like page 45 or something. 

Welcome again!

[treehugger]

OK, I promise to look through there when I am on the computer but not at work. I love the feeling of community here.

Kara

[treehugger]

I have a testing date at UCSF!  Tuesday, May 26th. So, y'all know what I will be doing on Monday, May 25 (and no, the answer is not partying for Memorial Day) - collecting my urine (and other, even grosser things  ).

This is of course the big first step wherein I find out if my kidney is worth giving away. A friend told me she hopes I am disgustingly healthy. 

Kara

[willowtreewren]

My hopes are with you, too. It is really disappointing when you can't give your husband a kidney. I'm down, but not out! 

I hope that you pass your urine test! 

Aleta

[treehugger]

My hopes are with you, too. It is really disappointing when you can't give your husband a kidney. I'm down, but not out! 

Thanks, Aleta. Yeah, I can only imagine how disappointing that is, but I am feeling very positive for our chances. If I fail, I just might come cry on your shoulder.

Kara

[willowtreewren]

Hey, I studied up and took the test again - still failed. How many folks can fail TWO urine tests?
 

They will allow me to take it again, though. I am trying to lose 15 pounds along with the other stuff I've been doing to improve my creatinine clearance. But I want YOU to pass with flying colors so you can share your joy with all of US! 

[lola]

I have a testing date at UCSF!  Tuesday, May 26th. So, y'all know what I will be doing on Monday, May 25 (and no, the answer is not partying for Memorial Day) - collecting my urine (and other, even grosser things  ).

This is of course the big first step wherein I find out if my kidney is worth giving away. A friend told me she hopes I am disgustingly healthy. 

Kara

Good luck, I start my test June 15th for paired exchange for my husband also. I'm can't wait to hear how yours go.




Edited: Fixed quote tag error - okarol/admin

[treehugger]

Well, I had my testing yesterday at UCSF. No news of course, since I won't know for about a week whether or not I passed, but I just wanted to report that everything went fine.

I started off in the lab, to turn in my 24-hour urine collection and 2 stool samples and to have blood drawn (16 vials!). I also had to do another urine sample which I didn't know about. It was fine, but if I had known, I wouldn't have gone to the bathroom while I was waiting for my number to be called. This was the longest wait of the day - my number was called about 45 minutes after I arrived, and then I had to wait an additional 15 minutes for a second blood type test.

Then I went next door for my walk-in EKG (only had to wait about 5 minutes). That was a quick, piece of cake procedure. I was given my printout to give to the transplant coordinator, but of course I had no idea how to read it. Next I went to radiology for my chest x-ray. Again I had a short wait and it was a quick, easy procedure. The waiting room had panoramic views of Golden Gate Park - wow!

My final stop was to meet the transplant coordinator for the first time. She took my blood pressure twice and we chatted a bit (I didn't really have any questions) and that was that. In at 8:15, out by 10:30 and I had the rest of the day off! My friend (who had taken the day off to be with me) and I went to Berkeley for lunch and shopping.

Now, the waiting....

Kara

[kellyt]

Good for you!  I hope for the best!

BTW, I've learned to pee on command  -  even if I just went pee before they call me back, I can still produce.    I've always been able to do this.  Strange talent...

[okarol]

Good luck Kara! Just don't wait too long. You should be able to get feedback about your lab results within a week. When will they schedule appointments with the social worker and psycologist? I would ask for a timeline - seems that checking in with the transplant coordinator occasionally helps move along the process.
Yes -  Living Donors Online is great - the message forum is a wealth of info - and the "experiences" stories of other donors are really helpful too.
Living Donors ROCK! 

[treehugger]

BTW, I've learned to pee on command  -  even if I just went pee before they call me back, I can still produce.    I've always been able to do this.  Strange talent...

That's quite a useful talent, actually.  I've realized that giving blood happens to be my strange talent. It's quite effortless for me, which is why I feel like it's my duty to give blood regularly (every 8 weeks). I have talked to a lot of people who would like to give but their body just doesn't react well for whatever reason. Of course, I have temporarily quit so as not to affect my blood levels for live donor testing.

Kara