My Madison evaluation

[tigtink]

My evaluation at Madison went extremely well, plus I had a wonderful visit with family and a great birthday.  We got there a half hour early for the evaluation and they took us in right away.  I met with the financial coordinator, social worker, dietitian, transplant surgeon, and my transplant coordinator.  It was so much less stressful this time because I had already been through the evaluation at U of MI and I am so much better educated now then I was back in November, plus my sister was with me for support. Everything at Madison went so fast--one appointment after another with almost no waiting.  Before I knew it I was getting blood drawn and a chest X-ray and it was over.  My appointment was at 8:00 AM and we were done by 11:00.  They were friendly, helpful and efficient.

We talked about a living donor and my sister was surprised to learn they had no strict age cutoff for donors.  When her husband donated 9 years ago in PA they would not accept donors over 65 (my sister is now 66).  They pulled up her chart (she is already in their system), looked at her health history, and said there is nothing that would keep her from getting tested.  She volunteered to start the process and they drew blood from her that day.  She seemed very comfortable with being tested, unlike my other sister who is willing but clearly very nervous about it.

I just got a phone call from the transplant coordinator as I was writing this.  The surgeon wants me to get a Dobutamine stress echocardiogram and as soon as that is done they will present my case to the committee.  Anyone familiar with that test?  They were extremely impressed with my weight loss (48 pounds since January 2013) and seemed to think I was a good candidate.  Plus my PRA levels just came in from U of MI and they are 0% for both classes.  I had hoped so because I've never had a previous transplant, blood transfusion, or pregnancy, but it was nice to find out for sure.

I will call my primary care doc today to get the stress test scheduled.  We should find out in two weeks whether my sister is a match and can continue the testing.  She is the same blood type (O+).  My other sister does not know her blood type but I'm sure she will get tested in the near future.

It was a fun weekend.  I got to visit with my sister, her husband, their son and two daughters, and my sister's three grandchildren.  My birthday was Saturday, my niece Jessica's birthday is March 31, and her little girl Ellen turns 1 year old on March 28, so we had a great big birthday party.  They surprised me with a Crazy Cat Lady birthday cake, covered with ten miniature kitties.  It was wonderful.  So they turned what would have been a stressful medical appointment into a fun family gathering.  It was great!!

I'll keep you updated, but the weekend could not have gone any better.  I really feel good about my decision to get listed at Madison.  Thanks again for all your support.  I come here every day to keep up and it helps me a lot.

[Joe]

Glad to hear that all went well! It's so good when you feel good about the evaluation and all the hoopla around it. Best of luck on your stress test, and then on to find a donor!

[MooseMom]

tt, I'm very happy that your day at Madison went well!

I'm familiar with the stress test you mentioned.  It's a pain in the butt mainly because you spend most of your time waiting around, but I never found it to be anything more than boring.  The chemical stress test is used when the treadmill test doesn't get your heart rate up high enough (since most of us are on a bp med, even though you are told to stop taking it 24 hours before the test, it's often still not enough to validate the results of a treadmill test).  After that test, they then give you an isotope, and you sit around while it circulates through your blood stream.  They they take a series of images of your heart for which you have to lie still for about 45 minutes.  Then you have to sit around a bit longer while the isotope declines, and then they take yet another series of images.  Oh, and you have to fast.  So, as you see, it's a dull way to spend a morning, but the test itself is not so onerous. 

Please keep us posted about your progress, and thanks for the update!

[jeannea]

Great update! It all sounds positive. I hope your sister is a match.

[Bambino_Bear]

 

Awesome news!!

[SooMK]

Wow! Sounds like Madison really has their act together. Best of luck as this unfolds.

[tigtink]

Thanks everyone for the encouragement.  I appreciate the info on the stress test, MooseMom.  It does not sound too bad.  Dull I can handle!!

[tigtink]

I am trying hard to be patient but it is not something I am good at.  It took almost a week to get my primary care doc to send a referral for the stress test and now I might have to wait a another week to get it scheduled.  Now it turns out I need to get two varicella vaccinations a month apart and then wait another month after that to get my blood tested to confirm I have developed immunity to chickenpox.  If the stress test comes out OK they will go ahead and put me on the list but I will be on hold until the chickenpox immunity is confirmed.  That means at least three more months before I am active on Madison's list.  University of MI never asked for the stress test, the dental clearance, or the chickenpox vaccination. I guess I should be glad they are being thorough (although I will be paying off my credit card for the dental bills for a while).

I know I need to just be patient and the delay won't matter much as long as I pass the stress test.  I will start accruing time as soon as I am placed on the list.  But it is frustrating to have more delays.  Plus I am still waiting to find out if my sister is a potential match.  The good news is that my GFR is up to 18% after dropping to 16% a couple of months ago.  Still I feel like a time clock is clicking in my head!!  This is hard.

[MooseMom]

TT, I listed at two tx centers and they BOTH had me do the dental exam, so I'm surprised that UM didn't have you do it, too.  Hmmm....

Yeah, the bureaucracy, red tape and the constant scheduling fights are the most difficult part of the whole listing process.  When I called to get the stress test scheduled, I was told that they didn't have an open appointment for, like, a MONTH!  And THEN you have to schedule an appointment with a cardiologist to tell you the results, and that just adds to the length of time you have to wait.  It's a right pain, but people with renal insufficiency are more at risk for cardiac conditions, and you all want to make sure your heart will survive the surgery.  So while it is all frustrating, at least you will be able to catch any problems before it is too late!

Yes, immunity to chicken pox is one thing that all centers check for.  I'm starting to have doubts about U of MI; maybe it's better you're with Madison.

It took me six months to get on the list (this was initially through Rush here in Chicago), and most of that was due to having to get referrals and then having to schedule everything.  None of my tests came back with any bad news, but it still took six months.  With your gfr back up to 18%, I suspect you may have a bit more time than you think.  I know this is hard, but you will get through it.  It is easy to feel overwhelmed, so if you can just take everything one step at a time, one test at a time, one hoop at a time, you will be OK.

Can't wait until you hear about your sister!

[tigtink]

I had the first chickenpox vaccination this morning.  The next one will be in 30 days.  And my stress test is scheduled for this Thursday.  So I feel like I am making progress.  MooseMom, I am also perplexed that U of MI did not order these things.  They tested my blood and knew I had no immunity to chickenpox but they said nothing and ordered no vaccinations.  I would have been in trouble if I had not gotten my teeth taken care of because I have periodontal disease and had to have two infected teeth removed.  These things seem awfully important to the long-term success of a transplant so I can't imagine why U of MI did not have me address them.  I'll let you know how the stress test goes on Thursday.

[Angiepkd]

Hang in there tt!  It seemed like it took me forever to get through all of the testing.  Each time I thought I was finished, they added another appointment or procedure.  It took several months to get through everything.  They seemed to take less time with my donors.  My husband had nearly everything done in one long day, except the dye test and the initial tissue typing.  At least your sister will hopefully have an easier time of it.  Good luck Thursday!  Please update on your progress!

[MooseMom]

I had the first chickenpox vaccination this morning.  The next one will be in 30 days.  And my stress test is scheduled for this Thursday.  So I feel like I am making progress.  MooseMom, I am also perplexed that U of MI did not order these things.  They tested my blood and knew I had no immunity to chickenpox but they said nothing and ordered no vaccinations.  I would have been in trouble if I had not gotten my teeth taken care of because I have periodontal disease and had to have two infected teeth removed.  These things seem awfully important to the long-term success of a transplant so I can't imagine why U of MI did not have me address them.  I'll let you know how the stress test goes on Thursday.

This does sound like progress!  And, can you imagine what taking immunosuppressants would do to someone who had an active dental infection?  I'm glad Madison is taking these precautionary measures.

Take some things for entertainment when you have your stress test done.  Like I've said, there's a lot of waiting around involved!  Good luck!

[tigtink]

My stress test today went well.  It took a little over three hours.  They gave me an IV with the initial dye, had me drink some Sprite, and wait 45 minutes.  Then they had me lie on a table while the scanner took 20 minutes of pictures.  The next step was the actual stress test.  They hooked me up first and then asked me if I would be willing to try the treadmill to see whether they could get my heart rate up enough without the chemical.  I kind of wish I had had said no because it wasn't fun and they ended up doing the chemical one anyway because my rate did not go high enough without it.  Then they injected the chemical.  It was a little weird because my heart starting pounding, but it was not painful.  After that was done, they sent me to get some lunch and told me to load up with caffeine.  By the time I got to the cafeteria, I started getting a bit dizzy and nauseous and could feel a headache coming on, but after a salad and three diet cokes, I was fine.  They were right about caffeine being the antidote to the chemical.  I then had to go back for another 20 minutes of pictures in the scanner.  All in all, a bit time-consuming but otherwise no big deal, just as MooseMom predicted.  I signed a release and told them to fax the results directly to the transplant center, so hopefully that will speed up the process.  If all looks well with the results, with any luck they will be able to present my case to the committee at Madison soon. 

I found out my insurance will cover a shingles vaccine (which costs $225 and usually isn't covered by Medicare until after age 60) so I am going to ask them if I should get that as swell.  It will probably hold things up a bit since most likely I will have to wait a month after the second chickenpox vaccination to have it done.  I will be on hold at both centers until the vaccinations are done, but if I need it anyway I'd rather get it now.

So one more test behind me! 

[cattlekid]

Please get the shingles vax if you can.  I just got through a mild case of shingles and like the TV commercial says, I wouldn't wish this pain on my worst enemy.

[MooseMom]

TT, if you get the shingles vax, you will have to wait a minimum of three months before you can be transplanted due to the immunosuppressants you will be on since the vax uses live viruses.  If you are going to have to wait for your sister to get all of her bits and pieces done, anyway, it would be worth getting it for the reasons cattlekid suggested.  I don't know how long someone has to wait after getting the chickenpox vax to get the shingles vax; once you've found out, let us know!

I did not opt to get the shingles vax because of that three month delay; I had been told I might get a call for a kidney any day, and I didn't want to take that chance (I had received various calls that didn't end up with an offer of a viable kidney that was not ECD or high risk).  I suspect that I will get shingles one day, and I wish I could now protect myself.     Turned out I had to wait for longer than three months.

I'm glad to hear that your stress test went well.  I wasn't told about the caffeine trick!  That's really interesting!  Can you have your results mailed to you?  Tx centers have so much paperwork on so many patients that occasionally a set of results can go astray, so if you have your own copy, you can send it to them.  Everyone who is going through pre-tx testing should get all results mailed to them for their own records.  Having my own copies saved me a lot of time on various occasions!

[tigtink]

Three months?  Wow.  It is only a six-week hold for the chickenpox vaccination.  I am waiting to hear back from my transplant coordinator on this, but I have been doing some research.  I may not need the shingles vaccination once I have received the two varicella vaccinations.  The CDC did a study in children with leukemia who had the varicella vaccination and found they are 67% less likely to get shingles than children who have had the natural chickenpox disease, and similar studies on healthy children show the same level of protection from the varicella vaccination.  There is not enough data to conclude the same is true for adults who get the chickenpox vaccination because so few people over 50 have had the varicella vaccination since it was only licensed in 1995.  The shingles vaccine is actually the same as the varicella vaccine except it is 14 times the strength.  I'll let you know what I find out.

[tigtink]

Well, apparently my stress test was fine because the transplant coordinator called today to tell me the committee approved me for the list.  I will be on hold until the middle of June when I get retested to make sure I have immunity to the chickenpox after my second vaccination.  So I start accruing time as of today, which is wonderful news.

I was really flying high about it all and feeling good until I called my sister in Wisconsin to give her the news.  She gave blood at the evaluation to begin testing as a donor, but hadn't heard anything yet,  Turns out they did call her to let her know she is a potential match, but she told me she was not going to go any further with the testing because she would rather I get a kidney from a younger donor.  She said she would consider moving forward with the testing if I ended up on dialysis and could not find a deceased donor.  I was taken aback by this because we have talked several tines at the evaluation and since yet she never expressed any doubts about donating.  I just wish she had talked to me about it and let me know she wasn't comfortable with being a donor.  I was really caught off guard.  She did not even call to let me know she had heard from the transplant center.

What is so curious to me is that she did not even bother to find out the details of how good a match she is.  She asked no questions, just told them she did not want to move ahead with the process.  So either she did not ask or does not want to tell me the results.  I'm trying to tell myself that this was always a long shot and even if she continued with the testing many things could have ruled her out.  Still, I would have appreciated if she had taken the time to discuss her feelings instead of just informing me she was backing out.   I was actually surprised when she offered to let me stay there after the operation and even more surprised when she offered to get tested.  My family has never really been there for me in any meaningful way, so my expectations were low.  But I was not prepared for this.

This whole kidney disease and transplant process is so hard.  There are uncertainties everywhere and surprises around every corner. I hit a new high and a new low today.  I am on the list, though, so my efforts are bearing fruit.  Just another day in the long process I guess.

[MooseMom]

Oh my dear tigtink, this has been a roller-coaster of a day for you, hasn't it.

I share your happiness about being able to now accrue time!  That's terrific news!

As for your sister, well, I think this is where I'm supposed to be generous of heart and remind you that no one is obligated to give you a kidney, that everyone should have free will over what they do with their organs, blah blah blah.  And while all of that is indeed true, the emotional havoc that a potential live donor can cause for someone s/he supposedly loves is a terrible thing.  Your sister would rather you get a kidney from a younger donor?  Does she mean a younger living donor?  Does she have someone in mind?  Does she understand that a kidney from a living donor is almost always longer lived than a cadaveric kidney, even if that kidney is a better "match"?  Pardon me if I'm skeptical.

Does your sister really want to sit back and do nothing while you undergo the trauma of starting dialysis?

Does your sister understand the dialysis process?  Does she realize that the first few months of dialysis are the ones that carry the greatest risk? 

So, just so that we are all clear here, for how long will you have to be on dialysis before she becomes willing to continue testing?  How long is the wait time where you are?  For how many years will she let you wait until she becomes comfortable with being a potential donor?  It is not up to you to "find a deceased donor".  That search is totally out of your hands.  Does she realize this?

I think the vast majority of us who have been in the terrible position of waiting on the tx list have haunting stories to tell about friends and/or family members who were willing to be tested but who then pulled out and tried to explain away their decision in all kinds of, frankly, cowardly ways.  "I am not willing to be tested any further because I'd rather you get a kidney from a younger donor" is a new one on me, though.  While I was on the list, I had family members who just ignored me which is probably better than having someone say they're willing to be tested but then pull out without an explanation.  And THIS is where I should point out that we none of us should expect explanations, but gosh, doesn't compassion and personal courage figure in here somewhere?

If I've said something here about your sister that does not sit well with you, well, I guess this is where I should apologize for that, but I won't.  She should not have raised your expectations, and worst of all, she should not have come up with something like "I'd rather you get a kidney from a younger donor." 

I just cannot believe that anyone would sit back and let their sister go on dialysis before continuing with testing.  How cruel is that?  I'm absolutely astonished, I really am. 

I'll stop here because I'm just disgusted, and I refuse to apologize for that.

Edited to add:  TT, don't lose hope for getting a pre-emptive cadaveric tx.  With a gfr of 18, you may well have at least 2 years before you need to start D.  The important thing is that now you are accruing time.  You may avoid dialysis and never need to ask anything of your sister.  At least your other sister was honest and told you she was too nervous to be tested.  I applaud her for that.  I had someone who was willing to be tested have to come back and tell me that her husband didn't want her to.  They have two young-ish daughters, and I could understand his concern.  I could tell she felt really embarrassed about having to withdraw her offer, but that was OK with me.  I understood and appreciated her honesty.  I felt bad that she felt bad.

[SooMK]

I'm glad you had the good news of being listed to help with the bitter pill to soften your sister bailing on you. This live donor business is filled with land mines. It's entirely possible that your sister's change of heart rests on misinformation which you cannot correct. A liaison who is fully informed might be useful but that may not be an option. It would be good to know what she means by a "younger donor" but I suspect it means "not me". Better she says no now than get very close and change her mind then. The road is long. Do not give up. Perhaps quietly educating people may bear fruit. Every single person said to me, before transplant, that they heard the donor had a harder recovery time than the recipient. If it was ever true it sure isn't now. My donor was released the next day and 6 days later she feels nearly normal. I would focus on the positive. Do everything you can to be as healthy as CKD will allow. When my friend asked me if there was anything she could do as my kidney disease worsened I told her the only thing anyone could do was give me a kidney. She said "I could do that" and she did. Just as your sister has proven not to be as courageous as you need her to be there may be someone else who will step up. You will be in my thoughts.

[tigtink]

Thank you both.  MooseMom, I would never want you to apologize for what you share.  Your honesty is refreshing and it really helps to hear someone like you, who understands more than most what I am feeling, express anger on my behalf.  It gives me room to deal with the anger I feel.  There is much more to the story, as there always is, including a lot of old family baggage that colors both my emotions and my sister's emotions.  We were distant for many years and have both worked hard in recent years since her retirement to reach out to each other and slowly build a healthier relationship.  That makes the emotions even more intense and adds an element of fear that what we have will be lost or damaged. We both have our fears.

Thanks, SooMK, for your reassuring words.  They also help.

I would like to share part of an email I just sent to my former therapist from back east.  She has not seen me professionally for 15 years, but we have remained in touch through the years and she has been a great source of support for me.  I think this captures how hard I am struggling with all of this.  To be honest, I am nowhere near as noble as I sound here, but it does reflect at least what I am reaching for, so I will share it here:

I don’t feel anger so much (there is a piece of that, to be sure, at the way Shirley handled this) but the hurt I feel deeply.  There is family baggage connected to all of this that can’t be easily discarded.  That being said, I see clearly my biggest challenge as this unfolds:  The hardest thing for me is to reach out and ask for help, and I need all the help I can get from as many people as are willing to step forward.  The second hardest thing is coming to terms that we all have limitations, emotional and circumstantial, that define what we can do for others.  No one can give what they do not know how to give or do not have the ability to give, for whatever the reasons.  Many simply don’t care, but most do.  And we all struggle to be honest about what we are feeling.  My challenge is to keep reaching out, let myself feel the pain and disappointment when someone does let me down, and accept that for the most part they are doing what they need to survive.  Some days this is harder than others, and yesterday was one of those days.  I know I can feel some level of anger and find ways to express it without lashing out and hurting someone who is trying their best to love me.  Shirley has offered to open her home to me and help care for me after the surgery.  That is huge.  I have no need to damage the relationship we have so carefully built because I am sad or angry about how she handled things.

As for educating those around me, I decided a long time ago to stop trying to get people to understand things I struggle to understand myself.  I do not have the energy or inclination to try to convince anyone of anything.  I spent too many years of my life trying to do just that with my family, and I refuse to go there again.  Of course I am always willing to share what I have learned with anyone who is trying their best to learn, and if Shirley (or anyone else) reaches out to me and wants more information and understanding I am happy to share.

The important thing, I think, is that I am reaching out to many people in many ways, and I appreciate all the input and support I receive, no matter how limited or conditional it might be.  That takes more courage on my part that I was sure I had only a few months ago.  It is hard and will continue to be hard for me.  But I am doing it, and that says a lot about how I have grown and built on what we did together in therapy.  I will have days filled with pain, joy, fear, anger, hope, despair, and any and every emotion I am capable of experiencing.  But that was exactly what I hoped for when I used to sit in your office and despise the numbness that engulfed me.  You always said be careful what you ask for because you might get it.  I got it, and without it I would probably be ready to give up by now.  These are some of the many gifts you have helped me to experience and I love you for that.

So I keep moving ahead.  The alternative is not acceptable to me at this point.  Maybe one day I will feel differently, but for now I am pretty clear about what I want.  That is rarely the case for me so I will take it when I can get it!!

[cariad]

Wow! Congrats, tigtink, on your emotional growth - sounds like you've worked hard at that for a long time.

Your sister sounds like she may have got in over her head and did not quite understand what she was offering until she had already raised your hopes. It sounds to me like she does understand that dialysis is a tough road and that she has not completely discarded the idea of donating to you, but she'd prefer that you pursue a deceased donor. Unless your transplant hospital is very different to most programs (and I've been to Madison, and I don't think they are) your sister did have the option to get the medical team to make up some excuse for not donating on her behalf. In other words, she didn't have to be honest with you but she chose to open herself up to the potential consequences of telling you she'd rather not get tested at this time, rather than take the easy way out with a lie. Perhaps that demonstrates that she respects you and the relationship you've carefully rebuilt?

I'm sorry that you're going through this. I know I would struggle with the feelings of disappointment and betrayal if this had happened to me. I admire your determination to work through the negative emotions and come out the other side a stronger person for it.

[MooseMom]

Good for you, TT.  You have every right to feel whatever you feel, whether it be anger or hurt (and I'm not sure there is that much difference between the two).  It's what you DO with those feelings that can make or break a relationship.

Cariad is probably right in suspecting that Shirley didn't understand the magnitude of what she was offering, but if that's the case, she should have just said so instead of coming up with the whole "younger donor" faff.  But do you think she really understands the magnitude of initiating dialysis?  I'm quite curious about this.

Just about everyone who is in need of a new organ finds it "challenging" to "reach out"!!  So much so that many don't ask at all; they just silently sit by and hope that someone will step forward.  Usually, no one does, but you never know if you might be lucky.

TT, you are VERY smart in recognizing and valuing what Shirley HAS offered...support in her own home after your surgery (and that will be soon, I hope!).  Yep, she rather bungled the way she handled the whole testing thing; it was graceless and lacked total honesty.  If you can, forgive her and enthusiastically accept what she HAS been able to offer because, as you've said, it's huge!

Forgive me, but I have to ask...do you feel confident that Shirley can/will indeed supply what she has offered?  If you got lucky and got the call in, say, a couple of months from now, would Shirley take you in as she has promised?  Do you still trust her?

[tigtink]

I think you are right, cariad, about my sister getting in over her head.  As SooMK eloquently pointed out, the whole transplant process is filled with land mines, and my sister jumped in and landed on one.  That does not mean she wasn't trying to do what is best for me or that she does not care, but there's no escaping the fact that she was unable to level with me or probably with herself about what she is feeling.  She was probably as disoriented as I was the day my nephrologist referred me to a surgeon for fistula surgery. I remember the dawning realization of what that meant and the terror I felt.

MooseMom, I do believe my sister will follow through with her offer to let me stay in her home following the surgery.  For one thing, she is a deeply religious person (her husband is a Baptist minister).  That's part of what created the distance between us originally.  I have a very hard time with the judgmental edge to their belief system.  I don't think she would go back on her word at this point.  In fact, the level of guilt she is likely feeling makes her anxiety that much greater.  I sensed she had been questioning things she has long believed about herself because she has gotten cold feet about the transplant.  Add to that the fact that her husband donated a kidney to a fellow church member nine years ago and is doing great.  The kidney lasted seven years and gave the recipient a chance to watch his children grow up.  It failed not from rejection but from his original disease and he is now on the list for a second transplant.  Combine all of those factors and she probably felt enormous pressure to get tested and is feeling much guilt about pulling back.

No, I do not think she grasps the ramifications of dialysis or the dangers involved.  I sure didn't when I first realized it was probably in my future.  Only after months of research did I come to the conclusion that I wanted to avoid dialysis if at all possible.  In the beginning, dialysis seemed much less threatening than the prospect of a transplant.  So it is all very complicated, as you all know.

[tigtink]

I also think you made an excellent point MooseMom about the anger and hurt being basically the same emotion.  I don't think they can be separated.  Right now there is plenty of both bubbling up inside of me and it is hard to manage.  As you have said many times on these boards, there is nothing fair about the transplant process.  The disease is not fair, the listing process is tedious and tortuous, the allocation system and varying wait times across regions is nonsensical to say the least, and the fact that for us to get a transplant someone has to either die or submit to an major operation and give up an organ is the most unfair of all.  There are so many sources of the anger, but the roots of it run deep in the larger picture of unfairness.  And in the end there is no one to ultimately blame.  As any of you know who have met someone who is bipolar, most who suffer with the disease are often noncompliant with the meds and doctor appointments and live chaotic lives that hurt those around them  For 35 years I fought hard to get well and stay well.  I took all the meds my doctors suggested, suffered the side effects and worked hard to find the most effective and least toxic combination that would work for me, and went to all my doctor appointments and got monthly blood draws the whole time I was on lithium.  I sought therapy and worked my way through some pretty difficult emotional stuff.  It was worth it--I have been stable for a long time and I've experienced a better life than I could have imagined years ago.  From the beginning, I understood the risk of kidney disease, but I was told the likelihood it would progress to ESRD was from 1% to 2% AND I was reassured 15 years ago when I got off the lithium that my kidney disease would not continue to deteriorate.  What is fair about any of this?  I reaped the rewards, paid a heavy price, and have to face what is ahead of me.  But I would do it all over again even knowing what I know now, given what was available to me at the time.  How's that for a cruel irony?

[MooseMom]

Ah, TT...this is all making a lot more sense now.  I'd bet you're 100% right about the genesis of your sister's inner turmoil.  She believed she was one kind of person (the kind that her faith taught her to be), but when it came time to do more than just believe, she couldn't pull the trigger.  And now she is probably seeing herself in the mirror and is wincing in real discomfort.  And the fact that her own husband really did practice what he literally preached must add fuel to that particular fire.

I'm curious about something, and I don't know if you know the answer.  Do you think it's at all possible that her husband might be judging HER for not going through with the testing?

Can I make a suggestion, just a little something for you to let roll around in your head?

Since you suspect that she's feeling a lot of guilt, do you think you might have it in you to show her some mercy?  It occurs to me that it just might be an idea to call her up and say something like, "Shirley, I just want you to know that I am so grateful for your offer of letting me stay with you after I have surgery.  It is very generous of you, and it will be just the right kind of support I will be needing at that time.  Thank you!"

This would let her know that you've let her off the hook, so to speak.  I think she'd deeply, deeply appreciate it.  If she saw that you were attempting to relieve her of guilt, it might go a long way toward repairing your relationship.  But you cannot successfully do this unless and until you've reached an emotional point where you can do this with honesty.

I understand that I know practically nothing about your family dynamic, so if the above suggestion is entirely inappropriate, I apologize.  I'm just trying to throw some suggestions your way. 

My husband said he'd donate to me, but he's a different blood type, plus he wouldn't have passed all of the testing.  He knew it, I knew it, and he knew I knew it, so we didn't really talk about it.  Sometimes I was resentful that he didn't make more of an effort to become fit enough to be comfortable to even start the testing, but I recognized that there were other equally valuable ways he could support me.  Looking after me after surgery was HUGE, and if your sister is making the same offer, take it!