I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Jill D. on May 10, 2009, 08:11:42 PM
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In the last six weeks, the GFR of my transplanted kidney has gone from 36 to as low as 20, and my creatinine has gone from 1.6 to as high as 2.7. My labs from last week had my GFR at 23 and creatinine at 2.3, so at least things seemed to have stabilized for now, but I am going out to Mayo Clinic the week of May 17 to have a new transplant evaluation. I figured why wait. I have one friend who is really interested in being tested as a donor and two sisters-in-law who have expressed an interest.
This has been so difficult. When my native kidneys failed, it was a very slow process - 16 years from the time I was diagnosed to the time I started dialysis - so the fatigue, nausea, acidosis and generally feeling like crap came along gradually and was manageable. This time everything hit at once, within about two weeks time, and has included continuous edema in my feet, ankles, legs and abdomen. I had only slight edema on occasion the first time around. I have no appetite and am exhausted. It really sucks, as the majority of you on this site know.
Anyway, I will be looking at another positive-crossmatch transplant at Mayo Clinic if and when I find a donor. I am very interested in how Dea and Beth's mom are doing with their transplants as they are part of a study group using a new, promising drug.
For those new to this sight, the journey of my first transplant can be found at the thread http://ihatedialysis.com/forum/index.php?topic=1319.0
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Jill,
You know I am sad that you're experiencing this but feel confident that you will be able to find another kidney. Best wishes to you - lots of HUGS too! :cuddle; :cuddle; :cuddle;
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Oh Jill I am so sorry you have to go through it all again so soon. But it is wonderful that you have a few possible donors. Hopefully you will remain stable through the process and move straight to a new kidney. Thinking of you. Hugs :cuddle;
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Jill, I'm thinking of you as you go through this and hope that the second time around process goes as smoothly as possible. We will be following your journey with interest and of course, support.
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Jill, I am so sorry. I didn't know you were having problems. I was hoping you would be off dialysis for a long time. AND maybe you will if you get another transplant soon.
Did they say why? Not that they ever know or if they do they won't say.
:cuddle;
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:grouphug; I'll be thinking about you Jill. :cuddle;
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Jill...I am so sorry to hear about your kidney transplant not going well...ugh...I know you are beyond frustrated. You should talk to Dr. Gloor about the treatment my mom had. It has been a miracle for us so far. She is doing great. Her creatinine has stayed at or below 1 for a year and she feels great. It's been a year and she is doing well. Her labs have been really good and she's only doing monthly blood draws, so she has some freedom. There were a few bumps in the beginning but they are long behind us and she is healthy. That's all that matters to us. They have done biopsies and all clear..she'll have one next month and we'll see....I want to hear how it goes at Mayo for you. I've been thinking of you and I hope it all works out!!!!
:flower;
Beth
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Really sorry to hear this Jill, you were doing so good when we saw you in Vegas. Your spirits seem to be better than expected and I do wish the best for you. Please keep us informed and know that we are here for you. :grouphug;
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Sending you my love, Jill. You know how much I hate that you are going through this. I'll keep saying lots of prayers for the evaluation, the donors and you. :cuddle;
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:grouphug;
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:grouphug; :grouphug;
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Jill, I hope everything will work out for you. It is important that you start feeling better soon.
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:grouphug; I will be tinking about you.
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Thank you, everyone, for your love and support. Beth, I spoke with Dr. Gloor about the drug they used on your mom and I am soooo happy to hear she is doing so well! Please keep us posted as these things give all of us hope!
Dr. Gloor did say that they would do things differently the next time around, but he wasn't specific because they are always learning new things and I'm guessing the exact plan will depend on the latest research at the time.
Rerun, I don't think they know exactly what happened. I'm guessing the transplant glomeralopathy somehow intensified. I plan on asking when I go out next week.
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That stinks, Jill! I hope things work out for you.
:cuddle;
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Transplant Evaluation Day 1:
7:00 - picked up itinerary, had labs drawn
8:45 - ultrasound of my vascular system to determine where the next kidney will go (find out later in the day that it will go on my left side; my first transplant will remain on my right side)
11:00 - Met with financial person
1:30 - chest x-ray
2:30 - met with nurse to review my current meds
3:00 - met with my doctor, Dr. Gloor, to discuss my current health situation. To his great surprise (and mine as well) my labs show that the amount of protein in my urine has dropped huge - about 1/10 of what it had been - even though there has not been a drop of protein levels in my blood. This is very strange as I have been spilling large amounts of protein for the last 18 months or so. Not sure what it means, but it's a good thing.
Also, he feels that the swelling may be from my meds, Minoxidil in particular, and made some changes - even eliminated some "non-essential" meds since I am on so much medication.
4:15 - met with my transplant surgeon, Dr. Stegall. He sees no problem with doing another transplant; they have been finding that the transplant glomeralopathy is not uncommon in positive crossmatch transplants, but he is also feeling the new drug looks promising. There is no question that this is all still new territory, but at my age I am willing to give it a go if I can find a donor.
Tomorrow and Wednesday are filled with more appointments, but nothing too bad!
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I am thinking of you.
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Jill, sorry to hear about the transplant. I'll keep positive thoughts for you during the transplant evaluation and the rest of the process! :cuddle;
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I am crossing everything for you!!! I hope the new drug is as good to you as it has been to my mom.....Dr. Gloor and Dr. Stegall rock! Love them! I hope you get good news and great results...thinking of you!
Beth
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Thanks for sharing the details. It sounds as if the eval went well. And it sounds as if you have fabulous doctors. Now I hope you can find a donor :cuddle;
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Well, I received the official word today that I have been approved for another transplant!! I am very lucky that I have three wonderful people that have offered to be tested (and are the correct blood type) and 3 or 4 others who have offered but need to find out their blood type. I am keeping my fingers crossed!!
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Yay!!!! I am happy you were approved!!!! I am so sorry, I had no idea that you were having problems. I am going to go read the other thread you posted to get up to speed. You are in my prayers dear! Great Bug :grouphug;
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:thumbup; Good news Jill!!
I hope everything progresses smoothly and you are feeling better again. :cuddle;
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:flower; I am so happy to hear the good news. :flower;
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I'm so glad that you were approved AND that you have so many people in your life that care enough to give. That is good news!
:flower;
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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!!!
:grouphug;
Beth
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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.
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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!
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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! :grouphug; :grouphug; :grouphug;
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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
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Sending you love, Jill :cuddle;
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:grouphug; Love you Jill!
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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.
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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
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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!
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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,
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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
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:cuddle; I hope things work out. Sending you HUGS!
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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.
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WOW! 185 is AWESOME for a positive crossmatch transplant! My thoughts are with you and I hope everything works out soon!!
Beth
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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. :thumbup; You know I love you and want this to all work out for the best. You will always be my guiding light!! :cuddle;
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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!
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I hope it's good year for you Jill!
:cheer: 2 :cheer: 0 :cheer: 1 :cheer: 0 :cheer:
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I am hoping 2010 is a brilliant year for you Jill! I keep you in my prayers :cuddle;
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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! :clap; :clap; :clap;
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:beer1; Congratulations!
What caused the rejection, if I may ask?
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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.
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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! :bestwishes; 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!
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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. :2thumbsup;
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:flower; Yay Jill.
I am so glad to hear it is a go. Good luck today with the extra blood work and tissue matching. :cuddle;
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:2thumbsup;
Thinking of you Jill. :cuddle; :cuddle;