My sister (potential donor) might have failed her diabetes test

[Deanne]

My sister called to tell me her diabetes test is "borderline" and I got the impression that the results are on the wrong side of the border. She said they're going to have someone else review the results tomorrow and make one of four decisions:

- decide it's close enough and ok
- re-test right away
- ask her to lose 10 - 15 pounds and then re-test
- tell her she can't donate

She should probably lose a few pounds anyway, but she isn't very overweight. I suspect the fact that my mom was diagnosed with diabetes a couple of years ago will play into their decision.

My younger sister also offered to donate, so I still have hopes that I'll have a donor.

[cariad]

Oh, this is such a devastating component in this whole process, Deanne. I hope that one of your donors comes through, and of course, I am really hoping that your sister is all right! Good for you for looking toward your alternatives realistically and with optimism.

Many hugs to you. It's just so hard.

[MooseMom]

OK, let's not panic just yet. 

Keep us posted, OK?  And I sure hope your sister will be alright.

[monrein]

Deanne, I'm keeping everything crossed that this is only a small hump in the process and that it will be resolved...in favour of transplant AND no risk to your donor.   

[okarol]

I hope things work out. Thank God for sisters! 

[jbeany]

Well, hopefully it's just a glitch!

 

[Deanne]

She just texted me. The Dr rejected her, but the transplant coordinator got him to agree to retesting if she loses 15-20 pounds. I know it isn't easy to lose weight and there's no guarantee that losing the weight will fix the problem.

[mcclane]

She just texted me. The Dr rejected her, but the transplant coordinator got him to agree to retesting if she loses 15-20 pounds. I know it isn't easy to lose weight and there's no guarantee that losing the weight will fix the problem.

I wish you the best.

My mom went thru something similiar, she agreed to donate to me but after all the tests were done, the transplant doctor said that he noticed there was borderline diabetes and high bp.  The doctor said that if my mom lost weight (about 15 pounds) that the diabetes will go away, and the bp should go back to normal.

[Deanne]

I saw the message about your mom and aunt testing and it sounds like your mom did lose the weight. You said your mom's tests were grueling. Did she have to do extra stuff? I think all my sister had to do so far was a couple of blood tests. Or maybe my sister just didn't tell me about all of it. I know about the blood tests, and I know they told her to expect a gyn exam, colonoscopy, mammogram, and then something out here (in Portland - she's in Minnesota). The first tests were all stuff she should have done regularly anyway.

I didn't ask my sister if they gave her a deadline. I hope so! I want to ask, but at the same time, I don't want to apply pressure when there are other ways to find out. My younger sister said she was jealous that the transplant chose to test my older sister first over her, so I already sent her a message that my older sister might be rejected. She'll probably ask my older sister a lot of questions and she's never been able to keep secrets. I'm good at using this to my advantage. 

[willowtreewren]

Deanne, if your sister is motivated to lose the weight, she can do it. But the best motivation is not to donate, but to be healthier!

I know. Our transplant coordinator did not tell me to lose weight, but after being rejected I spent a year trying to bring my kidney function up to an acceptable level. I figured that losing weight would help. I did, but it didn't! 

Anyway, since then, I decided that I just need to lose more weight anyway. I started on June 16 and I'm down by 22 pounds. I wish I could say that it has been easy, but it hasn't. It is WORK! But well worth it.

I hope your sister can do this for herself in addition to helping you.

Aleta

[jbeany]

Well, if you can stand the pollyanna reply - even if she can't donate, she caught this early enough to do something now, before it's an emergency.  We'll just count that as one less person on a future transplant list.

Hope she can lose the weight and it all works out, though.  Or you have other donors - that's good too!

[Poppylicious]

Deanne, if your sister is motivated to lose the weight, she can do it. But the best motivation is not to donate, but to be healthier!

I second this, but would like to add that if she doesn't seem to be losing weight don't hold it against her ... ! For a long time after it was agreed that I could donate to Blokey I REALLY struggled to lose weight.  It wasn't that I was intentionally sabotaging my weight-loss (I was still following WW religiously); it was more like my body was putting its foot down psychologically and making a a stand because my mind hadn't asked its permission.  I realise this probably sounds odd!  Thankfully my mind and body held a discussion and my body agreed to stop fighting the weight-loss ...

 

Oh, and my testing wasn't particularly gruelling, but I'm in England and I don't think we have to jump through as many hoops as you do in the States.  The most tiresome aspect for me was the constant repetition of questions from so many different people.  And getting used to needles! 

[Deanne]

What will be, will be. If she wants to/tries to lose weight to help me, bless her! If she loses weight to help herself and to live a healthier life - Win! It's because I don't want to pressure her that I'm not asking her if they've given her a deadline. I hope she starts to live a healthier life for her own benefit and I'm glad she had to go through the test regardless of the outcome, just so she knows she has a potential problem.

I definitely won't hold it against her if she can't lose the weight or chooses not to try. I've told her repeatedly that she can change her mind about donating at any point in the process, and that she doesn't even need to tell me she's changed her mind herself if she doesn't want to. All she needs to do is tell her coordinator that she doesn't want to continue and the coordinator will tell me she failed a test or something and isn't a candidate.

I did offer to send her leashes so she can start walking her dogs, but that was just a joke.

[MooseMom]

You've done everything with such grace and compassion, and I'm sure your sister appreciates it. 

My husband was told he would need to lose weight before he could be considered for paired donation (he's not my type..lol), and as I don't want to upset cariad, I'll also say that both his mom and her father were diabetic.  His mother is not overweight, but she developed type 2 diabetes after eating a shedload of fudge (that probably was the catalyst, not the cause, but she ended up in the hospital).  My husband remembers being very young and watching his mom give her dad insulin injections, so I am not sure if he had type 1 or 2.  Anyway, bottom line is that diabetes runs in his family, and that coupled with the fact that my husband is overweight makes him ineligible.  I know in the depths of my soul that he will never be able to lose that weight, and as disappointed as I am, I will not pressure him.  So, I kinda know how you must be feeling about this.  It's a doubled-edged sword, and I hope that all turns out well in the end.  Keep us posted on your other sister.  Will she start the evaluation process now?

[Deanne]

I was wondering if they'll start evaluating my younger sister, too. That's part of why I want to know if they gave my older sister a deadline. However, I got a message today from my younger sister that makes me think they might not  consider her. Her wording was that I was "right in thinking she's a long-shot." She had a hysterectomy in April and they accidentally cut a ureter during surgery. She's had a tube extending to an external pee-bag until recently when she was finally able to have reconstructive surgery. They won't consider her until she's had several months to be fully healed and it makes me a bit nervous that she could have future problems because of the ureter injury.

Another strike against her is that her son also has FSGS. She said she isn't holding onto her "spare" kidney for him and that she's always planned to be a donor for me, but the transplant center will think twice about accepting her.

[MooseMom]

Oh man, this story just gets more and more complicated.   Yes, I can see how a ureter injury might disqualify her, but then again, don't make any assumptions.  You're not a transplant surgeon, so you don't have to make that call.  After wading through all of this, the truth is that, actually, neither sister has been absolutely, positively disqualifies forever and ever, so realistically there is still hope.

As for your nephew having fsgs, I'm sure you are aware that they are pretty sure that they have identified the circulating blood element that causes a lot of cases of fsgs, so it is entirely possible that in the near future, they'll be able to cleanse the blood of this factor (suPAR) and cure this horrible disease.  He may never need renal replacement therapy of any kind!