While I was gone...

[willowtreewren]

When I went on hiatus last month I was scheduled to have a nuclear kidney function test to see if I could donate to Carl.

The results came back that my kidneys are good enough to keep me going just fine, but I am going to need both of them. I was very saddened by this news as I want nothing more than for Carl (and me since we do home hemo) to be able to resume a more normal schedule.

Many of you know that I posted these results on FaceBook.

But what you don't know is the night I posted the sad news, a friend who moved to California several years ago contacted me about being a donor for Carl. I sent her to all the sites that could give her information about donating and gave her the contact info for our transplant center.

She was very excited, and started her own process, including arranging for some testing to be done in CA which will be covered by her insurance. She wanted to go ahead and get set up with a nephrologist in CA.

We had everything set up for her to come to TN in January for the testing that has to be done here.

Then on my birthday she contacted me that she is having second thoughts (Man that was not such a good day in many regards). And believe me, I don't want her to take vacation time for a trip to TN if she is not 100% sure this is what she wants to do.

So, I'm not sure if this is going to go anywhere or not. I did not want to put this up on FB since she is a friend there. But, I did want to share with my IHD family.

Even before hearing from her about her 2nd thoughts, Carl and I had talked about the possibility of switching to nocturnal if the transplant did not happen. And with that plan in mind, I'm maintaining some semblance of equanimity!

And please don't get me wrong.... I am very grateful for this wonderful person to have even made the offer. That is special even if it goes no further!

If anything does come of this, I will keep you informed.

Aleta

[Hanify]

Oh Aleta, that is a blow!  I can see her point as disappointing as it is - she needs to be 150% sure about it.  But you never know - a bit more time might make it clear for her?
L
B

[YLGuy]

Wow, I am sorry.  One thing I have learned from being on IHD is TRY and not get your hopes up too high.  The offer or the phone call does not come when you want it to.  There are so many stumbling blocks along the way to getting a transplant that if and when it happens, it happens.  I just got off the phone with my friend who asked me again for the 50th time, when can she give me her kidney.  I keep telling her I am not even approved to be on the list yet and even then we need to go through a screening process. Now with that being said I know that saying it and actually doing it are two totally different things.  I am sure as the people who have offered their kidneys to me (7, so far) get tested, my hopes will get high and I will have disappointments.  I have to at least take away from the situation that I am lucky enough to have that many people care about me that much.
 

[del]

Aleta I'm so sorry that that may not work out but nocturnal is wonderful!!!  You have a much more normal life. You have to sleep anyway so why not let dialysis do its thing while you are asleep!!  If Carl is taking binders now they will probably be gone if he starts nocturnal!!  Been 3 years for nocturnal for hubby now!!

[thegrammalady]

nocturnal is the shining star of dialysis.

[monrein]

Such a big disappointment Aleta.  Nocturnal sounds like a great move for you guys though...until a kidney comes along...I'm not giving up that hope, not ever.

[cariad]

Aleta, I love how you keep finding a positive to aim toward in the midst of these dashed hopes. Nocturnal sounds like just the thing for you as you wait for Carl's kidney to find him.

Donors should of course be able to back out at any time for any reason, but I wish people would really think about what they are offering, and how they phrase things, before they talk to the potential recipient. I could go on, but I'll save it for the email I want to send you.   

Take care. Go nocturnal!

[Sluff]

Aleta I hope she changes her mind but like you said at least the offer was there. A little discouraging but your friendship must be strong enough for the honesty and that is worth alot. If this doesn't work out then I hope nocturnal is the answer, at least until the next donor comes forward.

[MIbarra]

  Aleta! I'm with Monrein.. Hubby's time will come and nocturnal sounds like a wonderful option.

[bette1]

I hope noctunal works out for you.  I know what that's like to have a friend have second thoughts.  At least she was honest with you.  It's happend to me a couple of times.   

[Des]

I can honestly say that I know how it feels.... I had a few possible donors and all but one very persistant one has changed there minds...... it still hurts... but still one is grateful that they at least thought of it.

I hope you's come right with the nocturnal!!!

[whiskeyfrank]

Aleta

I'm new here but i can feel all the emotions you must be going through. I need a transplant quickly as long term dialysis wont really be an option. When i told my family what was happening to me and what was going to happen, i was surprised that my brother instantly withdrew, and i hadnt even asked for anything apart from support. I think he expected me to ask and i would never of done that.

I am very lucky in that both my mum and wife both volunteered without me knowing and were good matches and OK to donate. My mum has TOLD me that she is donating and we have planned surgery in December.

Its difficult with live donations as its such a commitment from people and even now cant believe that my family would do this for me, but its that very thought that gets me through each day.

I would like nocturnal  and it seems a good option till you get what you need.

[Goofy]

Aleta, I'm sorry to hear it wasn't a good birthday.  You and your hubsands hearts must have sank when your friend called you.

I agree with Sluff.  It must have been very hard for her to call you and tell you the bad news; you must be really good friends for her to admit she changed her mind.

I've had people "offer" without even thinking twice about it, but as with your situation, I think reality sets in for them and they get scared and I totally understand.  I've never put any high hopes into their offers because I don't want to get disappointed.


whiskeyfrank, I can't believe your brother is not talking to you just because of this. That is terrible.

[willowtreewren]

Thanks you everyone for all the support!

That is something really really special about IHD!

I do want to clarify, though. Although our friend has been having second thoughts, she has not yet withdrawn the offer. She is just working through the process emotionally and continuing research.

Unfortunately, there is little research on the long term implications for donors, from the physical implications to the health coverage implications.

She is 100% right to continue her quest for information to make sure this is the right decision for her.

In the mean time, we will be patient and supportive of whatever she decides.

Aleta

[texasstyle]

Oh boy, i don't even know what to say. The hopes of you and Carl, and the uncertainty of your friend. The thoughts and feelings on both sides. Damn this Kidney disease! I think most people would easily donate and it's not the surgery they're afraid of, but the not knowing what life will throw at them later. From both sides it must be a twisted ball of emotional complications. You keep hope Aleta. Don't ever give up. What is meant to be shall be. Keep your hearts open so the future can come in. Often when one door closes, another one opens.

[whiskeyfrank]

I'm glad there is still a chance, maybe if people read this forum it would help to see what sort of camaraderie people have.

Oh and my brother and i and much closer now, since its all came out in the open. In fact it seems to me that some people are more afraid of saying No than of going ahead, especially family. That silly in my opinion.

[Hanify]

Wouldn't it be nice if people who wanted to donate got paid their normal wage while they recuperate.  My sister is going through the process of becoming an altruistic donor, but she has a very supportive workplace and lots of leave owing.  For the average person, the fact that you don't get paid for 2/3 weeks would be absolutely devastating.  To me, that's where funds from the various kidney societies should be going - to enable people to donate.

[Jie]

Can the recipient pay the lost wage to the donor if the donor does not have enough leave? I thought it makes sense this way. We want their kidneys, not their wage donation.   

[Hanify]

Well, my sister is on a big wage - I wouldn't want to try to pay her salary.  I think the government should.

[Jie]

If she is on a big wage, she may afford these 2/3 weeks, even not getting paid...

[willowtreewren]

In answer to your question, Jie, the recipient may pay for lost wages and travel expenses.

On the other hand, there are organizations to help with these expenses.

I have not heard from our potential donor for a week now....

Sigh.

[KICKSTART]

Can the recipient pay the lost wage to the donor if the donor does not have enough leave? I thought it makes sense this way. We want their kidneys, not their wage donation.

I certainly couldnt pay anyones wages , i struggle as it is . Then again couldnt that possibly bring up an issue of being seen as  ...paying for a kidney ?

[Jie]

Aleta, I know what your "sigh"means. I guess we learned to keep the expectation low, so that the disappointment is not too big. The waiting list is not too long for Carl, right? So, even without living donors, he may be able to get a kidney soon.

Do you know what organizations to help pay these expenses? I know only one that pays up to $6000, but it seems only to both donor and recipient whose incomes below a certain level.

I will not think that paying lost wage and related expenses is paying for kidneys. In this case, the donor does not gain any more money than without donation.  These are parts of donation expenses. 

[cariad]

I have not heard from our potential donor for a week now....

Sigh.

Sorry to hear, Aleta. 

I'm thinking about you

[kristina]

Dear Aleta, 
I do hope switching to nocturnal may be a good way forward.
I am so sorry for the experience you went through on your birthday, it must have come as a shock.
I do understand your predicament because people have tried to help me as well to receive medical care abroad
and have sent me addresses of doctors and Hospitals, but unfortunately it came to nothing yet.
I have even tried the USA (the only offer I had was to pay 100 000 Dollars for a SLE/MCTD-treatment
to try and stop my SLE-MCTD-flare-up destroying my kidneys further, but I am not in that sort of money-league,
in fact, thinking of it, I am in no money-league whatsoever...) I have also tried Switzerland, Italy, Germany and France,
but unfortunately their health-system is very much like the NHS here and doctors I have contacted
in Switzerland, Italy, Germany and France, consider me to be the “property” of the NHS
and they would not help me medically because of that.
So, like yourself I am still searching and hoping.
I do wish you good luck and perhaps the nocturnal is a good step forward.
Your friend sounds a very honest person to tell you her second thoughts.
Good luck from Kristina.