moving ahead, at last

[okarol]

xtrememoosetrax,
That's so cool that you finally know you're the right subtype! We were told to not plan on getting a non-matching blood-type transplant because they felt it was still too experimental for someone as young as Jenna - but the doctor said, "If she was 45 years old and didn't have any other donors as options, I would probably say go for it."
I think I would keep looking into the paired exchange keeping in mind that you may still turn out to be your friends best option.
I so admire your willingness to see this through!
 

[xtrememoosetrax]

Quick update:  We're waiting a bit to see if the Alliance for Paired Donation comes up with any matches for us, and then are planning to re-evaluate the options at the beginning of March.  Which may be just as well, in a way, because meanwhile, my friend's insurance coverage has changed, and the new carrier does not cover her transplant center.  She's hoping that the carrier will make an exception to allow her to proceed with her current center, since she's already so far down the road with them, but of course it will probably take some time to get that all sorted out.  Sigh . . . .   I honestly don't know how you dialysis folks do it -- being sick, getting dialysis, and then dealing with insurance issues (difficult in GOOD health) on top of it all: It sounds to me like slogging through wet cement.  I know that you do it because you HAVE to, but it seems so difficult and discouraging sometimes.  Truthfully, I can't honestly say that I feel entirely sure that I would have the same fortitude in your situation.

[Joe Paul]

Good luck with the paired donation & the insurance issues 

[okarol]

I hope things work out - it is a tough road but hopefully there's a rainbow at the end! 

[xtrememoosetrax]

Got some good news this week: My friend's new insurance carrier WILL cover her at her current transplant center!  What a relief!

[goofynina]

I am sure that is a BIG relief   And definetly another step forward   

[KT0930]

Definately a huge relief about the insurance!

As for the Paired Exchange vs. going ahead, I would say taking the wait and see is probably best. I know, the last thing any of us want is more time on dialysis than neccesary, but, if you can find a better match through Paired Exchange, then the kidney will in all likelihood last longer, and your friend (depending on her age) will be less likely to need dialysis in the future. Even the best matches don't last forever, unfortunately. Just my 

[xtrememoosetrax]

Finally, some news! The Alliance for Paired Donation has found a match for us! 

Actually, it's going to be a 3-way exchange, meaning that there are six people involved. I will travel to Denver to donate, the friend/relative of that recipient will go to Alabama to donate, and the friend/relative of THAT recipient will go to NC to donate to my friend. Amazing, isn't it?

It sounds like this could be happening as soon as April! Ok, now I'm starting to get a little nervous . . . .    But more than that, I'm happy that things are moving forward and am feeling confident that everything is going to go well for all concerned. 

[paris]

Xtrememoosetrax,   This is all so amazing!  I am excited for everyone involved.  You are a real life hero.     Thank you for making such a major difference in someone's life

[willieandwinnie]

xtrememoosetrax, you make us all proud of you . Please keep us posted. This is amazing news. 

[Laurie]

  That's incredible news. It's amazing to see how far some will go to help others. You're an awesome person. 

[lola]

AWSOME!!!!!!!!

[Psim]

You are an Xtreme angel!!

[KT0930]

xtreme, this is AMAZING news! Thank you for doing so much to help your friend! 

[xtrememoosetrax]

The first projection was that surgery would take place in April; then last week I was told it looked like it would be the 2nd or 3rd week of May.  The latest projection is late May or early June. Sigh. The waiting is getting old for me, and for my friend it's so much worse!  However, when you consider that this whole thing involves six patients and umpteen medical, clerical, and other bureaucratic personnel, I'm beginning to think that it will be a miracle if it happens at all!  Oops! -- not "if" -- WHEN.  It's just that there are so many variables involved and thus so much uncertainty. And as we all know (renal patients in particular), limbo is not a particularly fun place to be.  However, I'm trying to make the best of it by working on the things I CAN control -- exercising, preparing for surgery, etc. -- and letting go of those I can't.  I'll keep you posted. 

[paris]

Xtreme----you know how I feel

[monrein]

You are such a special person to be doing this and, as a person awaiting a transplant, your willingness to do this for your friend makes me feel like you're giving me a kidney.  Weird eh? Oh I mean hunh for my american friends.  I'm sitting here wiping away tears of joy at how good some people are despite all the nasty stories we hear everyday.  And of course I'm feeling a huge renewed surge of appreciation for my potential donors.  We're just at the beginning of the process.  I'm keeping fingers, toes and eyes crossed for all six of you.
Gail

[Sluff]

  the moosetrax lady.

[okarol]

I am in awe of living donors. There's a special place in heaven for you. 

[xtrememoosetrax]

Had donor workup in Denver on 4/28 and received word later in the week that I was approved to be a donor.  Then, about a week later, got a call saying that "probable uterine fibroids" were seen on the MRI/MRA that was done to look at my renal vasculature, so they want me to have someone take a look and say they are just fibroids -- benign growths -- nothing cancerous.  Trx coordinator tells me to see my OB/GYN; unfortunately, I don't have one.  I email my PCP who does my annual Pap smears, asking if he can evaluate these.  He wants to refer me to an OB/GYN. 
  Call the ob/gyn office; first available appt (since I am not an established patient) is June 24!  This is not good, given that the target date for transplant is still early to mid June (which may not happen, but I have to act "AS IF" it will); we've got a time problem here.  (It’s fascinating to “cold call” a doctor’s office asking for special consideration because you’re trying to donate a kidney and find out how little traction that gets:  “yes <yawn>, well that’s our first available appointment.”  Hard to blame the appt scheduler  – she has to follow the rules, after all, and no doubt EVERYONE she talks to has an urgent need to be seen.)
  Grasping at straws, I email the local trx coordinator, asking her if she can just order an ultrasound or something -- if it's all clear, no problem, right?  She says NO, she can't do that, I really HAVE to see an OB/GYN, suggests I call university women's health clinic.  I do; their  first available appt is 6/11 -- better, but not good enough.  Wrack brains -- what to do?  I work at university cancer clinic, so decide to ask my dept manager, who handles scheduling, among other things, if she has any connections or contacts or can help in any way.  She takes on this challenge with great gusto, spends quite a bit of time (time she really doesn't have) working on it, and ends up getting me scheduled for ultrasound AND ob/gyn visit next week!  Great gratitude.
  In the meantime, before going to Denver, found a breast lump.  I've had several benign breast cysts before, so am not too concerned, but of course better get it checked, just in case.  No point in going to PCP – I know that he will want me to see breast surgeon.  I call for an appt with the (very good and very busy) breast surgeon I've seen before (at the facility where I work); her first available appt is June 16!  (God knows how long it would be if I weren't already established.)   Email breast surgeon, explaining the situation and asking if there is any possible way I can be seen sooner.  She writes back, very graciously saying, “of course!”   Hands me off to a nurse for scheduling of imaging, etc.  About a half dozen emails and phone calls later, I am scheduled for mammogram, ultrasound, and office visit next week!  Since she has no openings in her regular schedule, breast surgeon is going to see me on a day when she doesn’t usually see patients in clinic.  More gratitude. 
   Next week’s agenda:  transvaginal ultrasound on Mon. (oh boy, I can hardly wait!), mammogram and breast ultrasound on Wed., see OB/GYN doc  AND breast surgeon on Thursday! Wow, the fun never ends, does it?  On the other hand, next week is looking like a breeze compared to the stress of this past week! Don’t know what I would have done without these personal/professional connections -- well, I guess I would have had to go back to Colorado for all this stuff -- so am feeling very fortunate.
   Am having a few lurking doubts, but overall am feeling pretty confident that all of this will turn out to be nothing; fortunately, I’ll have the answers soon.  Mostly am feeling quite moved by the kindness and generosity of people who are willing to go out of their way to help with this situation -- very heartening.  Will have many people to thank at the end of all this.

[monrein]

How tiring it all sounds but I'm glad you have those connections and you darn well SHOULD be given special consideration given the timing issue and all.  Well I for one (and we both know that everyone here also) have everything crossed that things will continue to progress and that you cross all hurdles till the big day.  Special hugs Extreme.

[okarol]

It really takes a serious commitment and lots of patience to become a living donor. I don't think most people realize what you have to go through to make it happen. I admire you for hanging in there and enduring all these tests and added stress to help another person Xtreme. I think many people would have given up. I hope everything turns out fine and you can proceed with scheduling the surgery!
 

[xtrememoosetrax]

Little did I know when I started this thread (or is it a topic? -- whatever) how apt the subject line would prove to be.  I haven't posted here for a while, operating on the principle that "if you can't say something nice, don't say anything at all."  Not that I want to whitewash anything; the last couple months have been filled with increasing frustration and anger in the face of a seemingly mythical surgery date that was perpetually receding into the future.  I do feel that there are definitely some problems with the system, but now I'm glad that I didn't vent too much of my frustration publicly, as I wouldn't want to have trashed (as I was sorely tempted to do at times) anyone involved in this process, all of whom I am SURE are doing their utmost to make it happen.  The health care system, as we all know, is very cumbersome.
  Anyway, here's the news:  The third donor was finally approved, and surgery is scheduled for July 30!!  On Wednesday last week, my friend and I were told that this was the "tentative" surgery date and wondered what that meant, having become a bit jaded on the subject.  On Thurs, though, the director of the Alliance for Paired Donation told us that the ORs and surgeons are booked at all three hospitals!  So -- barring unforeseen events, of course -- we have a definite date!  (Oh yeah, btw, the extra tests I had to have done in May all came back negative.)
  Will probably drive to out-of-state transplant center on July 27, in order to be there for preop stuff on July 29, then surgery on the 30th.  Should be in hospital for 2 or 3 or maybe 4 days, then will stay in one of those extended-stay hotel places for another few days until one week post surgery, when I'm supposed to go back in for postop wound check.  Then they say I will be free to go home.  At least that's the plan . . . . 
  I'm in the process of setting up a CaringBridge site/blog so that we can keep everybody up to date.  I will, of course, give you the address and will definitely keep you all posted! 
  Yesterday, went shopping for postop pajamas and "lounging wear."  It's really time to get organized now!
  Please, everybody, keep your fingers crossed for us!

[okarol]

Wow! I am so glad to hear there's been progress! I really admire you for hanging tough despite the obstacles. I will keep good thoughts and pray all goes smoothly. I am so excited for you! Living donors ROCK!

[paris]

You know how much I admire you    You have held strong through the process and now you are going to change someone's life.  Not many people make a true difference in another's life.  I am honored to know you