I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: cariad on March 17, 2011, 04:33:12 PM
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I received a call about an hour ago from the research RN. She managed to corral my surgeon in between operations and get him to read my biopsy.
It came back with no signs of rejection. I am off Prograf and the 3 other drugs I take. I still have to finish the course of antibiotic that I started two days ago, but then I will no longer have to take meds every day. It has been almost exactly thirty-five years. I am so delighted that I wanted to start a fresh thread to celebrate. My one year transplant anniversary is tomorrow. We are going out to dinner with a friend from England tonight. I am overwhelmed. And very grateful for everyone on this site.
Excuse me a moment while I do a little victory dance. :yahoo; :yahoo; :yahoo;
Kidney Failure, you picked the wrong child to tangle with all those years ago. I win. :beer1;
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:bandance; :cheer: :bandance; :cheer:
This is Soooooooo much better than the other post I read from you earlier today.
:yahoo; :2thumbsup;
Wonderful news. And revel in this new life!
ESRD....take that.... :sir ken;
Aleta
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Yeah!! :cheer:
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Bloody ripper.
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Oh, that's just wonderful! Thirty five years is such a long time. I've had CKD for 20 years now, so I have an idea of what this disease takes out of you. But now I guess we really do have a cure for ESRD!
I have a couple of questions for you, but I'll put them on your other thread because this is a CELEBRATION thread!!!
I'm tempted to say that you are lucky, but I don't think luck had anything to do with it. Your success is the result of a lot of hard work from a lot of people, including you and your husband, so BRAVO!
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That's just amazing--and wonderful.
You are making history. You truly have beaten kidney failure.
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:bandance; :bandance; :bandance;
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:grouphug; :2thumbsup; :bandance; :thumbup; :beer1;
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:flower; :flower; :flower;
Wonderful!!!!
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:2thumbsup; :bandance; :bandance; :bandance; :yahoo; :cuddle;
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That's great Cariad!
So do you still take other medications such as aspirin/ bp/ cholesterol/ as example to help keep kidney healthy and flowing well?
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:flower; Lovely post - I am so pleased - you took a chance with this protocol - it took courage and faith - best wishes for many, many good years!! :cheer: Happy dance!!! :bandance;
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So, does this mean you are cured?
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Persistence pays off!
Excellent!
:beer1;
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Cheers! :wine; Awesome!!!
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Best news ever! :yahoo;
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Hurray for you, Cariad. That is a remarkable achievement!
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WOW!! I nearly fell off my chair reading this!!!! Amazing!!!
no meds every day?!! omg!!!!
YAY!!!!!!!!!!!!!!!!!
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Simply amazing! :bandance;
I hope this new method is used all over the world soon. It will help millions of us. Terrific news.
Good for you.
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Awesome Cariad!!!! Good Job!!! :yahoo; :yahoo;
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IHD members, thank you all. It means so much to me that all of you are willing to share in my joy.
To answer the questions: I am still taking over the counter Strontium and calcium/vitD/mag capsules to build bone mass. Once a month, I take Boniva for the same reason. My blood pressure tends to run a bit low, so no meds for that. I was supposed to have a fasting lipid panel drawn, but when they told me to eat a light breakfast before my biopsy, I somehow did not psychically understand that this meant "don't eat anything, we need to take fasting levels". So, I will get that panel drawn next week, but my cholesterol was within the normal range even without fasting, so I don't imagine there will be a problem. I have never taken cholesterol meds before.
Am I cured? Well, I have no underlying disease to cure, so I would say, yes, I am cured of end-stage renal failure. I think the main point to keep in mind is that I now have my husband's immune system as well as my own, with 100% chimerism that has lasted a full year, so in theory I have the same chance of losing my kidney function as any other person walking around with only one kidney, but no history of renal failure. I think Gwyn and I now have an equal chance of losing our kidney function, and it won't be from rejection, it will be from aging and just normal, unavoidable wear and tear. I should know after the first few blood draws if there is going to be a problem with my labs going wonky. I know the surgeon would likely shudder if he thought I was telling people I was cured, but that is how it looks and feels to me! He told me repeatedly before I enrolled in the trial "I don't want you to think that this is necessarily the answer" and I respect that and understand that we are in such early days even still, but until my labs show otherwise, I am cured!!!!
For our one year anniversary we went out to my favorite restaurant. The Scotsman was there, and he had been picking on Milwaukee a fair bit up until then. He had just come from DC where an incredibly wealthy company had hosted them at a grand gala with posh dinner and all. He said that the organic, grass fed steak that he had at this restaurant was far superior to the filet mignon that he had in DC. Our waiter was a South African with a masters in sustainable energy, and a hardcore rugby and cricket fan, so the boys had a blast. My older son talked alternative energy with him, telling him about his science fair project that is coming up. They are testing Aidan's radio/torch that has either a hand crank or a solar panel to charge up the internal battery. Aidan predicts that the solar panel will provide more energy from 5 minutes of charging than the hand crank. The server immediately asked how big the panel was, and gently broke it to him that he believed the hand crank would prevail. My younger son ran up and gave him a hug at the end of the night. Excuse me, but Liot does not hug just anyone - this man obviously charmed his way into my children's lives. We had an amazing wine from the Barossa Valley, and I had gnocchi with a tomato/kale sauce. I joked with the waiter that the chef must give me his kale secret (I've never had kale so delicious, and kale is a CSA staple) and our waiter actually retrieved that information for me! He also had the chef make special grilled cheese sandwiches for the kids. My younger son and I split their creme brulee for dessert, while my older boy had chocolate brownie with banana ice cream, and the two men had chocolate mousse.
Our support person rang up Gwyn during dinner, so we could thank him once again. It was truly just a perfect evening.
Once again, I so appreciate you all taking the time to reply. Thank you, thank you, thank you!!! :-*
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How often due you have to do labs now cariad?
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How often due you have to do labs now cariad?
Back on twice a week. The big draws, the chimerism draws, are more frequent for a while, too. We had one right before the biopsy, we'll have one in a month, and we'll have one in 3 months.
Twice a week is fine with me - I no longer have to worry about timing it with Prograf. I think that will be reduced again in a few months.
Oooh, but Chris, I have news about one of your doctors. You may already know, but I'll shoot you a quick email to be sure....
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I am amazed and so happy for you!! A toast to your continued good health.. :beer1;
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Every two weeks is well still bad compared to once a month...lol I want a break from twice a week labs, well my vein and right arm does.
Thanks for the email.
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Wow Cariad. [big firm handshake icon]
SOO happy to hear this good news. But talk about... "roller coaster ride" lately! Talk about... JOURNEY!
sorry. I couldn't help it. Sorry MM, sorry sorry : - D
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Wow Cariad. [big firm handshake icon]
SOO happy to hear this good news. But talk about... "roller coaster ride" lately! Talk about... JOURNEY!
sorry. I couldn't help it. Sorry MM, sorry sorry : - D
:rofl; Oh my! Love it!!! Thanks, Nat. I accept your handshake, and offer hugs to you and Gregory in return! :cuddle;
Thanks Carol and Chris. And of course, all of the other congratulations I've received, thanks again to IHD. Richard, don't hurt yourself!! I'm hoping it will be you, too, one day, all of us, coming off the poison and living life just like anyone else. I think the next ten years shall bring us many medical miracles. The support of this group, with all of our experts who know exactly what this means: monrein, and Zach and Karol and jbeany, all of you, I am just so very grateful for the opportunity to share this, uh, this slog with you. ( ;) MM)
Oh, MM, you can call me lucky! I would never discount luck in my case. It took me 30+ years to stop being so angry and actually move forward rather than act as my own worst enemy. That I did no drastic damage to myself is lucky indeed, and not particularly fair, but there you go. I so appreciate you recognising that I had to put the effort in (eventually), but luck was still a factor. Always! :)
Well put, Aleta! Thanks for the laugh!
Let's hope, Rightside. The woman from your part of the world has been off the drugs for some 5-7 years now. She runs marathons, the little show-off! :laugh:
I had a touch of nerves this morning as I went in for my first post-medication blood draw. The techs noted that I was no longer on Prograf, but most of them would not know enough about transplant to think that unusual. (And in fairness, for all they know I could have just been switched to something else.) I'll be holding my breath for a week or two as these numbers come in. I see a new GP next week. If he can take the information overlaod in stride, he'll be a keeper.
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Oh, I wanted to share the gifts that we purchased for the support people. If anyone knows anything about wines I would enjoy reading comments. (where are you, Stoday? ;)) For anyone not interested in wine, you should be sleeping peacefully by the middle of the next paragraph....
I think it was more fun purchasing this than it will be to consume, but that is because we went to the posh wine shop down the road. This is the type of wine shop that seems to discourage the non-serious wine drinker. It is an intimidating little place, although they do sell your $10 bottles, you just will need to venture into an old, converted house with a leather-topped desk and silk covered chair sitting imposingly in the front room. There are three rooms with shelves overflowing with wine and a few spirits, with a few creaky steps separating each section of the shop. It's gorgeous. Tastings take place at a little table at the back. They had a free sampling of two red wines and two bourbons when we went in - Gwyn went for the spirits, I tried their 'pizza wine' which was lovely, but so clean that it seemed to just instantly evaporate upon swallowing. It was such a wild sensation - does not linger, but certainly I do not mean that as an insult.
So, after the tasting, we sat across the desk from our local sommelier (if that is the proper word for a wine expert outside of a restaurant) and he wrote down the names of all of our support people. We said we wanted to give three of them both red and white, priced between $100 - $150 for the two to three bottles. The other two, we said just a nice bottle, max of $50 (they will be shocked to receive anything). He said under the circumstances (which I am not sure he knew, Gwyn is the one who has the relationship with this man) he would always suggest 'bubbles' for a celebratory thank you gift. He asked if we would just leave it to him, he would email Gwyn the recommended picks and we could approve.
So, for our two support people receiving the bubbly, he chose Champagne Aubry, a Premier Cru. He noted that taste to price, or whatever the term is, is excellent. He said it was 'biscuit right now' which, he's giving us too much credit for understanding these terms. That was just under $40/bottle.
For the red for the other three support people, he chose Chateau Gruaud Larose 2004 Grand Cru Classe - a bourdeaux. I think that was around $60. For the Chard, he went for a Puligny-Montrachet 2008 Vincent Girardin. I think it is premier cru (if that matters) but it does not say on the label. That one was probably around $50. Here is where things got a bit confused, though. We wanted to give the two champagne people the same bottle, and the three others the same bottles. However, when Gwyn went to pick it up, the partner was there, and she seems to have accidentally put in one Chassagne-Montrachet, same year, same vintner, same everything, just the region is different. If anyone knows if we should try to exchange this, or is there really little difference between the puligny and the chassagne? If it's swings and roundabouts, I'd rather not embarrass them and go through the hassle. It is not really legal to return alcohol in this state.
So, when he had it all priced, it was around $400 with our 5% discount. Hello, 5% discount? We were buying 8 bottles. What if we bought 12, gave the top three support people a bottle of champagne as well, and well, if we have to, give one bottle to ourselves? Yes, this got us a 10% discount for buying a mixed case. We spent just over $500, but most of it was to thank the people who made this all possible. Our final and most important support person does not drink, so he will get a year's supply of root beer (yes, it is what he would want) from our local root beer brewer. Supposed to be the finest in the country - so if you like root beer, do try Sprecher. If you don't, try Sprecher's adult brew - Gwyn really enjoys it.
Now, the hard part in thanking all of our friends - putting our gratitude into words. Ack, it is just so daunting!!!
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Aaaaand, speaking of writing down sentiments:
The mail today included envelopes from two different transplant units. The first, my original hospital, was just apologising for sending us all a confusing notice a few months back.
The second one, though!!! It is from USC. It is a short survey demanding that I tell them about my eval experience - which was in mid-2007! And they got the date wrong! And I dropped them in early 2008, about a week after being listed. And, I hate, hate, HATE this centre. Hate them. Rude, disorganized, and a hot mess. (Sorry if anyone is with them and likes them, but I'd rather you get the warning from me than learn the hard way....)
I am going to respond all right. I will be writing a letter to this doctor letting her know just exactly what I think of her transplant team. I see they got rid of the other guy, so perhaps she has been brought in to clean up the place. Her survey, which asks me to tick off which subjects were discussed with me during my evail, I plan to just write across it "I have no flipping idea! That was years ago!!"
Sheesh, this has me riled. It is so easy to get my blood up, and I haven't been on prednisone in ages. :shy;
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Fantastic!!!!!
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I am really happy for you and in awe of what they are able to do now with medicine. Enjoy your new life without ESRD.
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Thanks, Diane and Bette! I appreciate the replies!
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I am a real fan of Spanish wines. The next time you want to celebrate or give a thank you with something sparkling, try a Spanish Cava.
Albarino is a relatively new import from Spain into the US. With spring on the way, it's a fresh flavor.
My husband and I go to a wine tasting most weekends (we belong to the local wine club), and I am always surprised to find that most of the time, the wine I like the best is not the most expensive. YAY!
I don't know why, but I don't have a favorite American/California wine. We visit a lot of vineyards in Michigan, and I haven't found a single one of those wines I can tolerate. I have found a lot of New Zealand and Argentinian wines (oh, and a couple from Chile) that I've liked. I love giving wine as gifts, but when you don't know what someone will like, it's very hard. Still, I am sure your support people will be grateful for your gesture. Isn't it wonderful to have a reason to be thankful to so many people? That's just fantastic!
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Go cariad! Your story is inspirational!
MM, my fav tipple comes in a $10 bottle. Its bouquet suits my palate best -(trying to sound like I know what I'm talking about, which I don't :) )
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:yahoo; :yahoo; :yahoo;
No words needed. :cheer: :bandance; :bandance; :bandance; Let life begin! :cuddle;
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For the GP, put all medications and dosages in word, then a brief medical history in asending order. Then hand her or him the small book ;D
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For the GP, put all medications and dosages in word, then a brief medical history in asending order. Then hand her or him the small book ;D
:clap;
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Thanks, Des, I am hoping to get out there and show that I can move past kidney failure after all of these years.
Chris, that is truly hilarious! I should get my records bound and put a little photo of myself on the front with reviews on the back: A fascinating page-turner! A wild, edge-of-your-seat thriller!
Hello, do I hear wine talk??!! Hurrah! Chook, I have to fake it during wine talk, too. I have no memory for taste, and lack the vocabulary to adequately write tasting notes. All I can (sometimes) remember is tasted good or tasted bad.
Great suggestion on the cava, MM. Thanks so much! Perhaps we shall try this for the 3 nurses who helped us most through this. Now that we have bottles for all the support people, I keep thinking of others that we really should thank. And I think the surgeon and the research nurses top that list.
For the surgeon, we know he drinks champagne because we've seen the pics. I was thinking, he went to so much extra effort for me, always stopped in to say hello even when he was deep in the midst of a surgery marathon, and he has changed my life, for the better, forever. No question, it's got to be a bottle of Dom. That and a selection of Milwaukee coffees, as he mentioned that a patient brought him one of our coffees and he loved it, but he could not remember the name. There are three choices, and we have connections to two of the three owners (Milwaukee is a major city that operates like a Peyton Place - it is very much like San Francisco's theatre crowd, we all keep running into each other over and over again.) So, three pounds of coffee, I will assume he goes for full caffeine! Oh, and Rishi Tea - I did not realise they were local until the tea room pointed it out. Rishi is spectacular - do you all have access to it across the country, or is it just we lucky Dairyland dwellers? I think a few ounces of nice, safe English Breakfast would work.
For the nurses, I think I'll have to shoot an email to the research coordinator and find out whether they all drink or not. A bottle of cava and a selection of coffees and teas native to our strange little city would be great for the them. I think we'll also give a bottle to the research coordinator - she has sorted the many bills we were sent in error. One was even sent to collections, but it was all procedures that were paid for by the trial 100%.
California wines - I like Gainey! Very modestly priced. Au Bon Climat was magnificent, again not too expensive in the shops, and I like Firestone, which makes a beer that Gwyn enjoys. There is also an Ojai vineyard, I forget the exact name, but I have never had a bad bottle from them. Perhaps someone is noticing that these are all from the South/Central Coast region. Napa who?? :rofl; All my years in SF and I never went on a wine tour in Sonoma. Gwyn, meanwhile, gets off the plane and jumps onto the 'wine train'. At this moment, we have a bottle of Copolla Chard open. I think his wines are overpriced outside of CA, but we did get it at an end of inventory discount. I did not become a wine drinker until I met Gwyn, we bought a few bottles at auction on a whim, and I tasted a Chard from 1988 that was so amazing I never got over it. Very sadly, I did not keep the label, so have no idea what it was. :'( We went on a private Stellenbosch tour (South Africa) and the tour guide there said she had never seen anyone buy so much on one of her tours. (In South Africa, the tour guides are specially trained, rather like London cab drivers. They wear little pins.) She kept reminding us that we do not ever HAVE to buy anything. I am so glad we did, though. My favourite is Anandale, because it was so reasonably priced and so unpretentious. My mother positively guzzled the Syrah after my surgery (I could not bring myself to drink!). It was started by a former Rugby player (Hempies DuToit), and his tasting room was in a converted and beaten up stable. The other nice one, but much more expensive than your typical South African wine, was Ernie El's vineyard. Everything there was polished and lovely, complete opposite of Anandale, and the wine was delicious but around $30/bottle rather than $10.
Back in America, we bought a bottle of wine - think it was a Cab - from Ehlers Vineyard. The cute thing about that one is that Ehlers is a heart surgeon, so the bottle has an E on it in the shape of a sideways heart. If the Dom proves too expensive, perhaps we will get a bottle of that for the surgeon. We bought it to celebrate the arrival of the little E himself, so we know it's good, and under $100/bottle. I am not surprised that Michigan does not produce any exceptional wines. We took a tour of Wallershiem years and years ago - supposed to be one of the oldest in the nation, right in central Wisconsin. The wine was inexpensive, but only their beaujolais was even tolerable. That one was OK, but wow, I hate to insult them, it's just a good thing that at least the tour was interesting.
Ah, wine clubs! Don't make me jealous! (:laugh:) I am years from being able to regularly attend wine tastings. Perhaps when the little guy is age 12 - more than 7 long years from now! Have you ever seen Frasier? Do you recognise any of that wine club competitiveness in yours?
Now I'm going to be counting down the hours until my next glass.... :wine;
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cariad, to bad they did not have the wine tasting event at Navy Pier when we went over there :rofl; :rofl;
Learned the little nuances of taste of all the different types of wine from the venors there, and it was free. :2thumbsup;
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cariad, to bad they did not have the wine tasting event at Navy Pier when we went over there :rofl; :rofl;
Learned the little nuances of taste of all the different types of wine from the venors there, and it was free. :2thumbsup;
You had me at 'free wine'....
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Oh, MM, I just realised that we have been drinking Cava all along. There is a sparkling wine by Jaume Serra that Gwyn purchased over Christmas - it was on a good sale at the Co-Op and they gave him a taste so he knew it was nice. We drank it Christmas Day, and I so enjoyed it that when I saw it had gone on sale at Whole Foods, I grabbed a bottle. I only just noticed that it has the word CAVA in the lower right corner of the label. Duh! Spanish Cristalino should have been a clue.... Excellent suggestion all the same. On sale, the bottle only cost $9, and it has won 'value brand of the year' for several years running. :2thumbsup;
I have a bit of a sore head this morning. We opened the bottle yesterday - the celebrating has not ceased around here - and somehow managed to finish the bottle. :oops; Gwyn did most of the work, and he somehow got himself to work on time. My hat's off to him and his amazing alcohol tolerance....
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Cariad,
I'm so happy for you that the major thing on your mind is wine now. Congratulations! I just past my one year anniversary as well. The one year evaluation at Mayo was good. The biopsy was clear and all labs were good except potassium was high(to many potatoes, the Scotch-Irish in me) I haven't opened any new frontiers like you but I was the first to complete a clinical trial on calcitrol for bone health and my results and those behind me are so good that they are changing the standard post tx protocol at Mayo to include this drug. My donor and her husband came down from Oregon and we celebrated with margaritas, whiskey, My wife's killer burritos and her award winning chocolate truffle mouse cheesecake.
Ed
biopsy
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Wow, Ed, that's fabulous about the trial you pioneered. So, calcitriol after transplant improves bone strength? Because I am all about improving bone health at the moment - the only drugs/supplements I am on now are to combat osteoporosis. Sounds to me like you've done quite a service to the transplant community.
I took calcitriol for about a year, but it was all pretransplant. Then a GP jabbed me in the face, right under the eye, and somehow from that deduced that I was being overmedicated on it. Bizarre, but at least I managed to drop a prescription. If it will help me build my bones back up, I would not hesitate to go back on it.
Congratulations to you, too. One year!!! :cheer: :cheer: :cheer: