Great News For My Husband and I, He's Been Medically Approved To Donate!!

[Cordelia]

GREAT NEWS!!!!!!!! Today my husband and I were told that he is finally a viable kidney donor! We have been on this transplant testing journey for just a little over a year now and needless to say, it's been a long one! LOL!
I was approved in September and now my husband has gotten the greenlight!                          

He got the approval but now my transplant doc wants to speak to both of us. I'm thinking he is going to approach us about a paired exchange. This was not initially what I would say we had originally considred but I'm getting the sensing feeling that perhaps maybe plasma exchange might (not totally sure) be a waste of time and it might be better just to jump right to the paired exchange program rather than trying to separate my antibodies from my blood for my husband to give me a kidney.    So maybe he's going to approach us on the idea of paired exchange. We had once last year touched on this lightly in my doctor's office but was never further discussed further since at the time my husband had not gotten the greenlight yet at that point last fall.

My husband and I are now in limbo yet again wondering what this next appointment/news will be. So far we haven't gotten a date/time to speak to the transplant doc to find out what's what.

PS I hate being in limbo on something important like this! LOL!     

Anyways, anyone been through this?    I'm excited of the prospect because it might mean a kidney sooner than the 4-5 years that I was told waiting on the List. I think the paired exchage is great and really neat, just fantastic but we're kind of nervous of the prospect of travelling extensively. Like, has anyone had to travel across the country to do this sort of thing?

I'm in SouthWestern Ontario, Canada and have been dealing with one specific hospital.  Is anyone familiar on how this paired exchange works?   I just wanted to get some info/ideas as far as how much travelling might be expected.   I realize the U.S likely works different, I'm guessing but it wouldn't hurt to get some info abroad.

I do know they go into the pool and look to see for potential donors. I'm also aware here in Canada that its a national list, which is kind of exciting as it would open up perhaps more opportunities.

Any info would greatly be appreciated.

[tyefly]

Really good news....keep us posted......  you will love transplant life...

[willowtreewren]

This is fabulous, Cordelia! Just wonderful! 

I bet your husband is standing 10 feet tall right now. He's a keeper! 

I hope things progress quickly now. 

Aleta

[MooseMom]

I have no answers for you, but I am really happy to hear this good news!

[Chris]

Well that is good news and progress. Unfortunately I can't help with your question tho.

[Jean]

Sooooooooooo happy for you!!! 

[coravh]

Hi and congratulations. I have a friend here in Ottawa who went to Montreal for her paired exchange. I know she had family there and was able to stay with them for a while after. I suspect that in many cases they will transport the kidney but I don't know for sure. Once again, congrats and good luck.

Cora

[Poppylicious]

Sorry, can't answer your questions but wanted to say 'Yay!' on passing this hurdle ... may the next one be smoother (and possibly a little bit quicker!)!

 

[cariad]

How fabulous, Cordelia! I'm over the moon for you.

You might be right about the doctor's suggestion as desensitization does not always work. It also requires chemo as far as I've ever heard, and having gone through a similar process, I was knocked flat by it. I think you said you are quite sensitive to drugs? I had aphereisis (no chemo) and had a monster headache and was vomiting for a week after. My husband underwent the same procedure and walked out of there like it was any other day.

Then I had chemo later. Wow. That was an experience I hope to never repeat. It was brutal, and it also is really hard on your veins, so I used to think my veins were so awesome and I was an easy stick (for blood draws, not dialysis) and after chemo my veins went straight to hell. I fear that I would be pretty hosed should I ever need dialysis again, so it's lucky that I don't think I ever will.

As for paired exchanges, as far as I know it would only be the donors required to travel, or they could just transport the organ as someone else suggested? I know someone who did a paired exchange at UCLA with people in New Jersey. I don't think he traveled but perhaps I can dig up the story and see.

I am so excited for you and hope to read of your successful transplant very soon. Keep the updates coming, please!

[mcclane]

I am so happy to hear that Cordelia !    Congrats !! 

As for the paired exchange, my transplant coordinator only touched on that briefly, so I don't have any info on that at all.  I don't know if this helps, but my roomie was from newfoundland, but her brother lives here in calgary, so she flew out here for the transplant.  I would imagine the paired exchange would work similiar.

Again, awesome news !! 

[Cordelia]

How fabulous, Cordelia! I'm over the moon for you.

You might be right about the doctor's suggestion as desensitization does not always work. It also requires chemo as far as I've ever heard, and having gone through a similar process, I was knocked flat by it. I think you said you are quite sensitive to drugs? I had aphereisis (no chemo) and had a monster headache and was vomiting for a week after. My husband underwent the same procedure and walked out of there like it was any other day.

Then I had chemo later. Wow. That was an experience I hope to never repeat. It was brutal, and it also is really hard on your veins, so I used to think my veins were so awesome and I was an easy stick (for blood draws, not dialysis) and after chemo my veins went straight to hell. I fear that I would be pretty hosed should I ever need dialysis again, so it's lucky that I don't think I ever will.

As for paired exchanges, as far as I know it would only be the donors required to travel, or they could just transport the organ as someone else suggested? I know someone who did a paired exchange at UCLA with people in New Jersey. I don't think he traveled but perhaps I can dig up the story and see.

I am so excited for you and hope to read of your successful transplant very soon. Keep the updates coming, please!

Thank you all for your congrats!                   I'm just so very happy that my husband finally got confirmation. We have been waiting in limbo since last fall.    It's a huge sigh of relief now that we know.         

Cariad, I'm confused and puzzled by your post when you mentioned about chemo. I don't ever recall having heard/read that plasma exchange is like chemo. Can you please clarify?    I'm concerned. Am I going to lose my hair and get really, really sick during/afterwards? I don't understand.       

[MooseMom]

Cordelia, when my husband and I were thinking he might be a donor, we considered a paired exchange since we are ABO incompatible.  He's not eligible, sadly, so I don't have anything to "exchange", but if he had been eligible, I would have pursued a paired exchange before considering an ABO incompatible transplant.  I personally consider an ABO incompatible transplant as a last resort, but that's just my opinion.

See what your doctor has to say, and be sure to report back as I am very curious!

[cariad]

Cariad, I'm confused and puzzled by your post when you mentioned about chemo. I don't ever recall having heard/read that plasma exchange is like chemo. Can you please clarify?    I'm concerned. Am I going to lose my hair and get really, really sick during/afterwards? I don't understand.       

I may be wrong about whether it is technically 'chemo' or something very similar, but as far as I know you will need infusions of drugs like Rituxan. Since chemo suppresses your immune system and they are trying to force your immune system to stop producing certain antibodies, I think that is why it is a part of this process. How you react will likely depend on which agent they use. I had Flordarabin and Cytoxan. The first was not so bad, and the infusion was quick. The Cytoxan was just plain misery, plus I also had to have an infusion immediately after the Cytoxan to prevent bladder infection. I just slept all the time, I had no energy to do anything and was very, very sick, but again, different process and I am ultra-sensitive to just about every drug and every medical procedure known to man. A simple biopsy turned into a 3-day ordeal for me in which I could have ended up losing my transplant. This is always the way with me.

I don't think you have to worry about losing your hair. It may thin a bit, but radiation is generally the cancer treatment that makes you lose your hair.

Please don't let my fuzzy understanding of this scare you. Just hear your doctor out and ask him about the process and the success rate for lowering PRA.

[jeannea]

It's great news! Could be he has to officially discuss the results of the tests. My mom had one kidney working slightly better than the other so they told me she gets to keep that one. That sort of thing. Don't fret about it.

[Cordelia]

Cariad,  You're right, on how about asking the doctor about how to lower PRA.            At this point I"m so curious to find out why he wants to talk to us.  It's been on my mind alot. When you're wishing to find out news the wait is just SO long! LOL!    MM, thanks..... I'll keep you all informed     

Gosh, I kinda wish my co-ordinator would have just waited until the doctor was at least back at work before calling us about this prospect of him wanting to talk to us.

Thanks so much, Jeannea.  My husband is in good health,  I don't think its anything about my husband's tests because we had just spoken to my husband's surgeon the day before and he was cleared.   

Ooooooooooh, the waiting is killing me! LOL!     

[cassandra]

Congrats with your hubbies result, and please start relaxing now. High bp is not a good look at your appointment. love Cas

[ARCB]

Hi
I'm from MB Canada and on feb 2 I recieved a kidney through the paired exchange program. My husband was the donator. I don't have much time to comment right now but just wanted you to know if u have questions I'd be happy to fill you in on how it went for us. There were 4 exchanges in our chain  2 provinces.

Alisa

[Cordelia]

Congrats with your hubbies result, and please start relaxing now. High bp is not a good look at your appointment. love Cas

Thanks Cassandra, thanks so much for your congrats too, it means so much!     I understand what you are saying about the high bp. Thanks so much for your advice     

[Cordelia]

Hi
I'm from MB Canada and on feb 2 I recieved a kidney through the paired exchange program. My husband was the donator. I don't have much time to comment right now but just wanted you to know if u have questions I'd be happy to fill you in on how it went for us. There were 4 exchanges in our chain  2 provinces.

Alisa

Hi Alisa!

Oh, I'd LOVE to hear your story, if you have the time in the future, I'd be so happy to read/hear about it!    Congrats on getting your kidney through the paired exchange!                 How long did it take for you to have your surgery and what do you mean by "4 exchanges in the chain?"   I'm not sure what you mean by that......

What other province did you deal with and  did you have to travel outside of your province to make it happen?

[lawphi]

My husband had plasmapheresis with rituximab and had zero side effects before and after his transplant. 

He did experience the same symptoms as Carid when he lost his first transplant. 

[Cordelia]

I wonder if the side effects are rare?