Going for another transplant evaluation

[Beth36]

That is so wonderful, Jill!!! I am keeping you and your potential donors in my thoughts and prayers....I am hoping for the very best for you!!!
 

Beth

[deahuff]

Hi Jill,
What is the latest? I just got back from Mayo and still I am getting the drug infusion eculizmab. I am doing just great! I have been hiking 30 + miles with a back pack. I wonder what they will do different? Maybe no after plasma, I only have received this drug after the transplant and no other therapies. I mean IVIG, etc. Of course I am still on the normal anti-rejection drugs. I am thinking of you. One of these times we will see each other at Mayo! Good Luck with everything.

[Jill D.]

Hi Dea and everyone! Dea, I am so happy to hear that everything is still going so well for you!!! As for me, it has literally been a roller coaster ride. I am now convinced that the BP med, Minoxidil, that I was put on in early March to control my BP (and took away my headaches) was the thing that started the whole chain of events leading up to my evaluation.
When I met with Dr. Gloor for my evaluation he took me off all "non-essential" drugs, including multivitamins, vitamin B, iron and calcitriol and also adjusted several of my other meds. He felt I was on so much medication that it was making me feel so awful (I just assumed it was my kidney function). When I mentioned that I was still retaining over 10 lbs of fluid, he told me it was caused from the Minoxidil and cut my dose in half and told me he wanted me off it completely. Within two days I started to feel better and within a week some of the fluid came off, my labs improved (but of course my BP started going up and I started getting low grade headaches.)
In mid-June my Dr. here switched me to a different BP med and took me completely off the Minoxidil. By the 4th of July weekend I had taken off all of the water weight, but had three days of a raging migraine. I could not eat or get out of bed without vomiting; the pain was so intense. I was finally able to keep some pain meds down (no food) to be able to go to work for three days. My headaches came back last Friday and kept me bedridden all weekend again. This week I seem to have the headaches to a manageable level, but the problem has been my stomach. All that time with no food and only medication, especially vicodan, in my belly has not been a good thing! The past three days I have backed off as much as I can on the pain meds and slowly tried to eat more. As I sit here I am feeling pretty good...about 25 lbs lighter than a month and a half ago (not a good weight loss plan!)

As far as testing of my donors is going, one possible donor was disqualified because of a minor health issue on her part - she really, really tried to convince them it would be OK!  My sister-in-law (my brother's wife) went through cross-matching and the number (421) is higher than they want; they told her  if I come to a time where that is the best thing for me they may look at her again, but not right now. She was devastated as she wanted so bad to help me  I have another sister-in-law (my husband's sister) that has had a cross-match but I haven't heard anything. I'm guessing my numbers will be high with anyone; I mean, I've already had one positive crossmatch transplant, plus I've had children, plus at the time of my surgery they did a couple of blood transfusions.

During this whole drama, starting in March, my GFR went from 35 to 20 to 27; My creatinine went from 1.6 to 2.9 to 2.0. The last lab numbers are from a month ago and I just had them done again yesterday so who knows? Maybe now that I am off the Minoxidil my labs will be even better. It does give me a little more breathing room in my search for a donor.

Sorry so long...should have posted before now but I have been struggling!

[okarol]

Jill,
I am happy to hear your doctors are finding answers for you! It must feel great to get rid of that fluid!
I'm sorry, I don't recall why you were on pain meds, but I hope whatever it is goes away soon.
With the BP under control and the creatinine dropping a bit, it does sound like you have a little bit more wiggle room.
It's wonderful that you have so many people willing to be tested. What a blessing!
Hang in there my friend and please let us know how you're doing! Sending you love and good wishes!

[Beth36]

Oh Jill! I've been wondering how you have been lately!! Glad you got some relief. Yeah, the cross matching is the most frustrating part of the whole process for us donors or potential donors.....my prayers are with you and your potential donor. I hope the numbers are just where they need to be. I hated all the hurry up and wait with my mom's transplant. It will drive you nuts if you let it. Thinking of you!

Beth

[paris]

 Sending you love, Jill     

[Romona]

  Love you Jill!

[Jill D.]

Thanks everyone! My pain meds were for the migraines - they were very limited on what they could give me. I guess I can't take most of the typical migraine medications (I assume they have some type of nsaids or anti-inflammatories). I mainly laid down where it was as dark as possible with my head on ice; I would take Fiourocet (has a combo of aceteminophine, caffeine and muscle relaxers) or Vicodan. At their worse, nothing would touch the pain and I would literally vomit if I stood up because of the pain. As anyone who has had migraines knows, they are absolutely dibilitating.

[deahuff]

Hi Jill,
I have not logged in for awhile. Still flying to Mayo everything other week for the infusion, but no problems...How are you now? It has been months and I hope you are doing OK. Just checking in. Dea

[Jill D.]

Still having daily headaches and occasional migraines - although no migraines in almost 2 weeks!  They are slowly tweaking my BP meds and it has come down some. I am having an MRI done of my head tomorrow morning and have an appointment with a neurologist on Oct 14, although I may be making a trip out to Mayo because they don't want me to wait that long and that's the soonest I could get in around here.

I did receive some surprising good news yesterday - my husband's sister is getting tested as a donor and she called to say she has to go out to Mayo for the health screening tests! This is big, because I have had three people tested since June and she is the first to make it that far. The first had a bladder med that she takes that disqualified her, and two other sisters-in-law (my brother's wife and my husband's other sister) made it to the tissue matching but my antibodies were too high against them. I wasn't really sure if the current SIL was being tested, so it was a big surprise! I am a bit ambivalent about it, as I learned at a family reunion in June that my husband's family has a history of kidney cancer and kidney stones. When I have pressed his sisters about this, they say "oh, it's just the guys that have problems". What if down the road she needs that kidney?

Anyway, I will not put the cart before the horse and I've learned from the past that things work out how they do without me worrying about it!

Thank you so much for your thoughts and prayers!

[Jill D.]

My sister-in-law went out to Mayo Clinic for donor testing last month. Things are still in the air; the cardiologist she saw out there wanted to do some additional testing but could not get it scheduled before she had to come home. Turns out she had the test at home within the last year and so she faxed the results. The cardiologist now wants the results on a CD, not just a fax, so the coordinator is working with my SIL's doctor to get that. Also, she got a 65 on her renal function test (not sure if that was her GFR?) and their new standards are now 75 (used to be 65). Anyway, the coordinator does not want to present the case until these questions have been answered.
Apparently the count when they did the tissue matching was 185, which is pretty good for a positive crossmatch transplant.
I'm still struggling with chronic (daily) head and neck pain. I think I need to figure out what is going on with that before I schedule another transplant. My kidney function has stabilized and my GFR hovers around 30, which I am very happy with. My kidney did take another hit about three weeks ago when I got a urinary tract infection that got into my blood. They put me on an antibiotic just in time; afterward my doc told me that based on the level of bacteria in my blood I had been within a day of being hospitalized with sepsis. I think my kidney has recovered, but will have labs done this week to see for sure,

[willowtreewren]

Oh, Jill. this has been quite a roller coaster!

Scary, too.

I hope it will be smoother sailing now. I had migraines when I was a teenager and just reading your description of them brought back the horrible memories. I never want to go through that again. I feel for you.

Take care,

Aleta

[okarol]

  I hope things work out. Sending you HUGS!

[Des]

Good luck with the rest of your tests... I hope it all goes well.

I am also on this ride... waiting for  the donor  to be finalized..... so hang on and be patient... it takes a while.

[Beth36]

WOW! 185 is AWESOME for a positive crossmatch transplant! My thoughts are with you and I hope everything works out soon!!

Beth

[paris]

My dear Jill,  So much is going on in your life. I have been keeping you and Terry in my prayers and now I will include your sister in law.  I hope your first transplant just keeps hanging in there for awhile.  I think you are right about resolving the head and neck pain first.  You know how the whole routine goes and have the best transplant team around.      You know I love you and want this to all work out for the best.  You will always be my guiding light!!   

[Jill D.]

Thank you everyone! At THanksgiving my sister-in-law told me all was well with her heart (which is a very good thing no matter what!) THey are sending her a 24 hour urine catch kit and the coordinator hopes to present my case on Dec 16th! All I can say is that 2009 was a very crappy year for me but 2010 is already looking bright!

[okarol]

I hope it's good year for you Jill!

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[paris]

I am hoping 2010 is a brilliant year for you Jill!  I keep you in my prayers   

[Jill D.]

Great news! My sister-in-law, Debby, is my donor!!!! My coordinator presented my case on the 16th and everything was approved. We will both have labs done on Jan 4th for one more tissue match which will help my doctor at Mayo Clinic determine how to proceed and what i need to have done prior to this second positive crossmatch transplant. I am actually feeling better than I have all year; my headaches are much better and my energy level has improved with regular injections. Right now I think I will see what works best for Deb, plus my coordinator agrees that I might as well get as much "mileage" as I can out of my current kidney. Since the blood infection I had in October my GFR has dropped to around 23, which is still pretty good, but I know this rejection issue is not going to suddenly stop. I feel so lucky and blessed - I am ready for 2010! 

[kellyt]

    Congratulations! 

What caused the rejection, if I may ask?

[Jill D.]

Kelly -
It is called transplant glomeralopathy; I had a positive crossmatch transplant and basically I continued to have antibody issues. My new kidney has been taking a beating since about six months post-transplant.

[kellyt]

I'm so sorry to hear that.  What a bumpy road you've been on.  I also pray that you received this new kidney and fast!        BTW, my sis-in-law (husband's sister) was my donor.  I celebrated 1 year in Nov.  So far so good, but I'm having some difficulty with lymphocele fluid, which we think has been fixed, and now waiting to see if my ureter is open enough to be stent free!

Congtratulations again!

[Chris]

Sorry I have not seen this thread Jill. I hope you get your transplant as soon as possible to avoid dialysis and that there are no complications for your sister in law and you to. 

[Wattle]

   Yay Jill.

I am so glad to hear it is a go. Good luck today with the extra blood work and tissue matching.