I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: DialysisGoneFOREVER on May 08, 2016, 10:50:44 AM
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I notice very few members post in this section. With over 10,000 members very few seem to interested in getting a transplant! I know some may not be medically cleared but the transplant traffic is EXTREMELY low!
Thoughts?
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Probably proportionately just as low as the number of kidneys available.
I don't post there because I have so little hope of ever getting one. Possibly the people who already have one are busy enjoying their lives and so have no urge to po
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I don't know for other people, but I know my personal experience is that since so much depends on a person's actual labs and situation, it's easier to just go to my transplant team with questions than it is to try to give the full background of the situation on this board.
That, and so many of my questions and concerns have already been covered in other threads.
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Probably proportionately just as low as the number of kidneys available.
I don't post there because I have so little hope of ever getting one. Possibly the people who already have one are busy enjoying their lives and so have no urge to po
I agree with the above ... and ... sometimes I wonder why we so rarely "hear" from transplantees sharing their experiences one or two or three years after the event ... ?
... and that makes me wonder if some of them may or may not experience certain problems with medication etc. ? ... and I keep hoping they all do well...
... A few years ago I have been reading that all the necessary regular immunosuppresants can make a transplantee's life extremely difficult on a daily basis ... ?
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Three of my fellow dialysis inmates have escaped thru transplants. I hear all are doing well but the only one I have seen has occasional medical appointments and he always stops by to say hello to the staff and the inmates. He got a double transplant kidney and pancreas and looks great looking forward to going back to work. Most of us have our lives on hold and have plenty of free time. I imagine that post dialysis after a transplant life becomes more hectic as a normal life resumes.
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Usually that's not the case kristina. My nephrologist follows about 30 transplant patients and he said "very few" have side effects from the meds.
If you look at other transplant forums some people complain about headaches, tremors, & gastric distress from Prograf. Intense EXERCISE is the KEY to avoiding side effects! I'm an exercise fanatic & I don't even get a cold on immunosuppression!
Still, with 10,000+ members you would think people would at least stop by and check this out or vent at the obstacles they're facing in getting a transplant!
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Hey Mike Murphy! Your post is :rofl; :clap;
That's EXACTLY how I felt on dialysis! You are just an inmate in a medical prison! Even the dialysis staff can cause problems and argue with you even if you're NOT seeking a transplant!
It was LIVING HELL and I STILL get nightmares about it sometimes!
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I try to post when I can, but being Canadian, my experience often differs tremendously. Also, I personally know quite a few transplant patients here at home who just want to forget the whole thing and get back as close to normal as possible. I've gone a bit the other way and now do a lot more volunteer work with my local hospital and local branch of the Kidney Foundation. One friend told me that she just doesn't want to be reminded of what she's been through. I think that this sort of thing is what diminishes the transplant population online. Simply busy with other things - and that's a good thing.
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Hi I don't really agree about the intense exercise. I have not had a transplant I know someone who has they do not exercise at all and the very rarely get any kind of sickness. Also my CKD is an auto-immune disease I had Rituxan over 7 months ago. I have not been sick once. I have a very strong immune system and that has really helped me stay as well as I have as my GFR goes down. I do not exercise at all. Do not feel well enough to exercise much. I do walk some and I know that helps.
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At least more prospective transplant patients could post on here. 5% of 10,000 members is 500 members. So if only 5% of members on here were trying for a Tx we should see more posting. And I'm sure more than 5% are trying to get off dialysis. More like at least 20% to 30%!
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There are always exceptions to the rule. Of course some people do great without exercise but consider this. The kidney does NOT magically produce urine by itself! A dormant perfectly healthy kidney produces ZERO urine!
I once met a heart failure patient in the hospital. When he entered the hospital his creatinine was under 1. But as his heart failure got worse his kidneys started failing!
Your kidney depends on strong blood flow to produce urine and have a normal creatinine! Without good blood flow your kidney will fail! I do intense weightlifting and biking and it makes a HUGE difference! My creatinine has gone down and urine output has gone UP!
I can FEEL the difference in my kidney with all the exercise! Having a strong heart & healthy weight means better blood flow and oxygen delivery to your kidney which gives you better lab results!
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I'm two years out from my transplant and doing very well. I check IHD every day. I was fortunate that I was never on dialysis however my mom died after 7 years on dialysis. I have two sisters currently with CKD and my two children each have a 50% chance of inheriting my particular flavor of CKD. So I read many posts in the different sections. IHD is always relevant. I'm happy to comment if I think I have anything to offer. The things that go through my head as I consider creating a post is that people will probably just point me back to the transplant clinic or perhaps I should do a thorough search before posting or finally I should stop whining about minor problems because I read every day here what people are struggling with and believe me anything I deal with is minimal compared to that. (Sorry, just the voices in my head that control my life.) If you have specific questions I think you will get opinions. In terms of exercise and lifestyle I think it was the same for me both pre-dialysis and now. My goal is to live a healthy lifestyle which for me is some exercise everyday, eat mostly plants and minimally processed foods, pursue interests and be active in my community, appreciate my family and my time with them and most of all try to avoid the fears that I live with--don't get too much sun, get all your regular checkups on time, don't forget to take your meds, don't eat this thing or that thing. For me this transplant life is so much less complex than I thought it would be. So many fewer pills and restrictions than I imagined. I am 67. I consider this time a gift from my donor. This is bonus time.
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I'm also two years out from transplant. I check in on the message board regularly, but don't post very often anymore. I posted a lot in my early days after transplant when I was having problems. That was mostly to let others know about some of the problems that could come up and how my medical team handled them. It was also a place to rant about how things weren't as perfect as they were "supposed" to be. Now everything is fine and I don't have much to post about.
I'm active and healthy. I attend Pilates, walk frequently, and am getting back into hiking. I went for a 6.5 mile hike yesterday and am working my way up to 10+ mile day hikes. I'm thinking about starting Yoga and trying out kayaking. Physical fitness is important both pre-ESRD, during dialysis, and post-transplant. My nephrologist said she attributes my medical successes to staying fit. My cholesterol level is great, my blood pressure is low, and she said I'm one of the few patients she has that hasn't gained weight post-transplant.
I don't have side effects from medications anymore.
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I'm two years out from my transplant and doing very well. I check IHD every day. I was fortunate that I was never on dialysis however my mom died after 7 years on dialysis. I have two sisters currently with CKD and my two children each have a 50% chance of inheriting my particular flavor of CKD. So I read many posts in the different sections. IHD is always relevant. I'm happy to comment if I think I have anything to offer. The things that go through my head as I consider creating a post is that people will probably just point me back to the transplant clinic or perhaps I should do a thorough search before posting or finally I should stop whining about minor problems because I read every day here what people are struggling with and believe me anything I deal with is minimal compared to that. (Sorry, just the voices in my head that control my life.) If you have specific questions I think you will get opinions. In terms of exercise and lifestyle I think it was the same for me both pre-dialysis and now. My goal is to live a healthy lifestyle which for me is some exercise everyday, eat mostly plants and minimally processed foods, pursue interests and be active in my community, appreciate my family and my time with them and most of all try to avoid the fears that I live with--don't get too much sun, get all your regular checkups on time, don't forget to take your meds, don't eat this thing or that thing. For me this transplant life is so much less complex than I thought it would be. So many fewer pills and restrictions than I imagined. I am 67. I consider this time a gift from my donor. This is bonus time.
^^^^^^
This.
I was pre-dialysis for almost a decade, which is why I asked Okarol to consider setting up a Pre-Dialysis forum. Pre-D patients have a whole different set of concerns than D patients and tx patients. I never had to go on dialysis although I came awfully close. So, I posted extensively in both D and Pre-D sections for many years. Also, my mom was on D for the last five years of her life, so I had even more incentive to post.
Now that I am 4 years out from tx, I post when I feel I have something to contribute. My Pre-D years were an emotional catastrophe for me, so I try to help those who post about their anxieties because believe me, I KNOW what it feels like to know that your kidneys are only going to get worse, never better. It's just a matter of when, not if.
I don't post in the dialysis forums because I have nothing to contribute.
I am always happy to encourage those who post about their anxieties about the road to transplant and about any post tx concerns they may have. My own tx was textbook. I've never been ill (other than puking for a day or so after eating bad salsa), and I've not yet had any side effects from the meds. My life is normal.
As for exercise, I do have concerns about the side effects of long term use of some of these drugs. There is a shedload of side effects that a patient can read about, but that does not mean said patient will experience any or all of them. I do what I can to lessen my chances of skin cancer, and I have begun strength training with a personal trainer in an effort to ward off muscle atrophy. Exercising while lying down makes me very ill and unsteady, so she has devised a program for me where I can participate in a full body workout with hand weights avoiding supine positions. Exercise is and has been my most effective coping mechanism through all of this kidney crap.
And it must be said....I avoid coming on to IHD and posting about how fab my life is now that the probability of dialysis is, for the time being, behind me. Even though I was lucky enough to avoid D (again, for the time being), I saw the toll it took on my mom, so I have a good idea how hard it is. I don't want to rub my good fortune in anyone's face. I love IHD. It has been a big part of my life for almost 10 years, and I don't want to make anyone feel bad.
That said, maybe I SHOULD post more about how good life can be with a tx so that more CKD patients who fear it can read a GOOD story about it. I was lucky to have had good experiences with good people as I was preparing to get listed. I had a nephrologist who was my advocate. I don't have any complaints, and I haven't had any problems worth posting about. I worked hard to be my own advocate, too, and I work hard to maintain the health of my new kidney.
So, here is a general question for all of you. How do you feel when tx patients post? What do you want to hear? If you are still on dialysis, do you want to hear good news from tx patients, or do such posts just make you feel bad? I'll be honest; when I was told I'd be on dialysis within 6 months, I was devastated. I'd read posts from people who had just received a new kidney, and it would make me feel so many different things. I'd be thrilled to hear that this person whose story I'd been following for so long had finally received a new kidney, and in the next second I'd feel desperate, like "Will I be so lucky?"
I hope this makes some sense.
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Soo, Deanne, & MooseMom, what are your blood creatinine levels at?
Nice to see more Tx patients posting!
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Mine is anywhere between 1.0 and 1.2.
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Mine is 0.7 - 0.8
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Carl is 5 years post TX. His creatinine levels run 0.9 - 1.1. Not bad.
His only "problem" from the meds is that when his PSA ran high and they found some slow growing prostate cancer, they decided to treat him with radioactive seeds rather than the usual "watch and see" approach. That was 100% successful with no side effects. He has the regular skin cancers to burn off. The guy is way healthy these days.
Aleta
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Any diabetics out there who have received Tx's? (not dual kidney/pancreas tx). I'm wondering about the meds and their effect on that. I have anxiety about that as I am Type 2 but for the past 8+ years have been controlling it quite well through only diet and life style--which for a person in my 70's who was diagnosed in 1997, that is an achievement.
That has all gone out the window now that I am on PD and am swimming in a daily "bath" of dextrose PD fluid. I see how cavalier my doc is about this. Like it's just the cost of doing business. Needless to say, I don't feel cavalier about it at all. After so many years of self-discipline, it is a blow to me to have effectively iatrogenic diabetes (caused by treatment).
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Have a chat with your MD about Icodextrin, and ask him to be very candid about what part cost pays in the choice between Ico and destrose for you, but be sure to read these papers first so you can carry your own end in the conversation.
http://cjasn.asnjournals.org/content/6/6/1337.full
http://www.ncbi.nlm.nih.gov/pubmed/19602608
http://www.pdiconnect.com/content/27/Supplement_2/S190.full
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MooseMom, Deanne, & Willow, did you have have living or cadaveric donors?
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Mine was deceased.
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Cadaveric.
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Thank you SO MUCH for posting this! I am one of those successful tx patients who don't often post.
However, my father's kidney function is down to 27% and his nephrologist isn't moving quickly on getting a definitive answer on why hid kidney function has declined and continues to do so. My father did have a artificial heart valve placed several years ago so I will make sure that he informs his nephrologist of this before his next appointment. It would make sense that a change in how his heart valve is functioning could affect blood flow in general...it would also possibly explain some of his other symptoms as they don't all seem to be in line with just declining kidney function.
There are always exceptions to the rule. Of course some people do great without exercise but consider this. The kidney does NOT magically produce urine by itself! A dormant perfectly healthy kidney produces ZERO urine!
I once met a heart failure patient in the hospital. When he entered the hospital his creatinine was under 1. But as his heart failure got worse his kidneys started failing!
Your kidney depends on strong blood flow to produce urine and have a normal creatinine! Without good blood flow your kidney will fail! I do intense weightlifting and biking and it makes a HUGE difference! My creatinine has gone down and urine output has gone UP!
I can FEEL the difference in my kidney with all the exercise! Having a strong heart & healthy weight means better blood flow and oxygen delivery to your kidney which gives you better lab results!
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How do you feel when tx patients post? What do you want to hear? If you are still on dialysis, do you want to hear good news from tx patients, or do such posts just make you feel bad? I'll be honest; when I was told I'd be on dialysis within 6 months, I was devastated. I'd read posts from people who had just received a new kidney, and it would make me feel so many different things. I'd be thrilled to hear that this person whose story I'd been following for so long had finally received a new kidney, and in the next second I'd feel desperate, like "Will I be so lucky?"
I hope this makes some sense.
Many thanks for all the kind replies and thoughts and to answer MooseMom's question, I must say that, especially since I am now listed on the transplant-waiting-list, I always read everything written by kidney-transplantees.
Why? Because it is most important and very educational ... and often comes over as encouraging ... and I very much appreciate their kindness in sharing with us their after-transplant-experiences because it so vital to learn as much as possible about it.
... Added to that, I have suffered from drug-intolerance and uncounted allergies to all sorts of medicines all my life, but since I have started with dialysis-treatment, "my" drug-intolerance and allergies have eased and "calmed down" quite a lot ... but nevertheless, I still remain nervous about my drug-intolerances and allergies, because the medications after a transplant seem to be on a different level altogether...
In short, I try to find out as much as I possibly can about medication and kidney-transplants etc. and how transplantees tolerate their after-transplant-medication and I am ever so appreciative, when transplantees kindly take the time to share with us their individual experiences and I thank each of them very much for their kind consideration.
Many thanks from Kristina. :grouphug;
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Have a chat with your MD about Icodextrin, and ask him to be very candid about what part cost pays in the choice between Ico and destrose for you, but be sure to read these papers first so you can carry your own end in the conversation.
Thank you, SD. I have had that chat before. But too early in the process before I really knew about my peritoneal character. When I asked my nephro--just when I was beginning PD- about using Icodextrin to mitigate the blood sugar effects, she brushed me off. And I got the sense that it was mostly about $$$. But now I see that it was too early to know just what kind of prescription I would be on. Since doing the PET, I have learned that I am a high-average transporter, and I require short dwells. Ico is apparently only used for long overnight or day dwells and if I were to need long dwells, I would be prescribed Ico for them. But I am on the cycler now (for the last 4 nights) and doing NIPD with dry days and 4 short cycler exchanges. As far as I know, that's not something that can be used in that context. If I'm wrong, then I will have the conversation again. Right now I am planning to give the process a month and see how my next set of labs come out. Other than the creeping blood sugar, my labs are perfect. High and high-average transporters are ace solute clearers, but was also absorb more sugar than slow transporters.
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I am deeply grateful for all who post here, past and present. The day I went for my fistula surgery three years ago was one of the worst days of my life. Reading about others who had gone through it helped me put things in perspective. Without people like MooseMom and cattlekid sharing their stories, I never would have pursued multiple listing and the chances of my getting a preemptive transplant would be much lower. I took to heart MooseMom's advice to go ahead and live my life instead of sitting at home stressing about my kidneys failing. I don't post much because I have been busy living my life, but I always know when I get really frustrated about all the things the transplant centers demand and the agony of the wait, I can come here and get support. And when I get really down, I read and reread stories from those of you that have had successful transplants. It provides me with the hope I need to keep fighting. So even though sometimes the posts here are sparse, this board remains a lifeline for me. I come here every day, even those I only post infrequently.
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Thank you SO MUCH for posting this! I am one of those successful tx patients who don't often post.
However, my father's kidney function is down to 27% and his nephrologist isn't moving quickly on getting a definitive answer on why hid kidney function has declined and continues to do so. My father did have a artificial heart valve placed several years ago so I will make sure that he informs his nephrologist of this before his next appointment. It would make sense that a change in how his heart valve is functioning could affect blood flow in general...it would also possibly explain some of his other symptoms as they don't all seem to be in line with just declining kidney function.
There are always exceptions to the rule. Of course some people do great without exercise but consider this. The kidney does NOT magically produce urine by itself! A dormant perfectly healthy kidney produces ZERO urine!
Your kidney depends on strong blood flow to produce urine and have a normal creatinine! Without good blood flow your kidney will fail! I do intense weightlifting and biking and it makes a HUGE difference! My creatinine has gone down and urine output has gone UP!
Your very welcome! I read early on how the kidney doesn't produce urine by itself but it DEPENDS on strong blood flow and oxygen delivery to function normally. That's why I notice a MAJOR difference in kidney function and performance after intense exercise!
What other symptoms does your dad have besides kidney failure due to the heart valve problem?
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I have my fourth annual post-tx appointment with my transplant nephrologist scheduled for this Friday, 13 May. For those of you who are considering tx, who are working to be listed or who have indeed been listed and are just waiting for the call, I thought you might find the following information of some small interest.
On the day before my tx, my creatinine was 4.0. My egfr was 14. I had been struggling with potassium for several years, and on the day I was taking 12 tablets of sodium bicarb just to keep my potassium in check. I was taking phosphorus binders. Luckily for me, I never had to be treated for anemia. My calcium and PTH had never been a problem. I had fsgs and had been diagnosed in 1992. I had never had to deal with diabetes. I was in relatively good shape for someone with stage 5 CKD.
I just this morning received the results of my latest blood draw; I have labs done each month, but once a year, before my big appointment, I have the usual labs done PLUS a whole shedload of other tests like hepatic panel, blood lipids, urinalysis, the whole shebang.
Here is a sample of my results. Compare them to what they were the day before my tx:
Creatinine 1.13 (compared to 4.0)
Egfr 54 (compared to 14)
Uric Acid 4.7 (compared to a level high enough that I had to take a daily dose of allopurinol to avoid gout episodes)
Phosphorus 3.8 (no need for binders, anymore!!)
Potassium 4.4 (no need for sodium bicarb, anymore!!)
In fact, the only results that were "out of range" were creatinine and egfr, and those numbers are good for a renal transplant patient.
Apart from the immunosuppressants, I do take 2 hypertensives (although I may lobby for a reduction) and my bp is very well controlled. I also take 2 meds for cholesterol (I may request a look at those). Before I started "treatment" for my fsgs back in 2004, my cholesterol was 550 and my triglycerides were 2100. My GP said he'd never seen numbers that high in a non-diabetic patient. But with meds and a new kidney (and plenty of exercise and a good diet), my cholesterol is now 145 and triglycerides are 110.
If anyone has any questions, I'm happy to address them.
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I have to laugh....my annual appointment is on Monday! Maybe someday, we will get on the same schedule so we can carpool ;D
(for those not in the know, MM and I had our transplants at the same hospital)
I have my fourth annual post-tx appointment with my transplant nephrologist scheduled for this Friday, 13 May. For those of you who are considering tx, who are working to be listed or who have indeed been listed and are just waiting for the call, I thought you might find the following information of some small interest.
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Cattlekid, are you having to go to Madison for your appointment? My neph sees tx patients on Fridays in a nephrology clinic in Rockford, so that's where I'll be on Friday. I suspect that since so many patients come from Chicagoland, many Madison nephs may have clinic appointments closer to Chicago. Good luck to you on Monday!! :cuddle;
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PM'd you to stop the threadjack ;D
Cattlekid, are you having to go to Madison for your appointment? My neph sees tx patients on Fridays in a nephrology clinic in Rockford, so that's where I'll be on Friday. I suspect that since so many patients come from Chicagoland, many Madison nephs may have clinic appointments closer to Chicago. Good luck to you on Monday!! :cuddle;
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MooseMom, Deanne, & Willow, did you have have living or cadaveric donors?
Deceased.
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I got my transplant in the Chicago area too! At UIC. But I'm from St.Louis.
Which hospital did you guys go to for Tx?
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I am post-tx by 4.5 years. I had a living donor. She is married to my Dad's cousin. She was 67 to my 38 at the time of our surgeries. She is obscenely healthy and has never been ill her entire life (I wish I could be that kind of obscene!). The surgeries went well, and we both healed fairly easily. My kidney took a slow time to lower creatinine for some reason, but it was steady. Then, come late March 2012 (I was transplanted in Nov 2011 on Thanksgiving Eve) my creatinine went from 1.4 to 1.7 and stayed there for the next 2 blood draws. The dr decided to to a biopsy to rule out the slight chance of rejection, and to look for any tacrolimus toxicity. Biopsy went fine -- until a few days later. I woke up with no urge to pee! To make a long story short - I ended up calling the on-call doc and went to the ER on a Sat evening. Ended up having emergency surgery that night to save my kidney from an obstructing biopsy. I lost a lot of blood overnight, so the next morning (Easter Sunday) I had to have 2 units of radiated blood along with a round of dialysis due to my K being high. I was in acute kidney failure. My creatinine got as high as 9.9 during this visit.
My creatinine ended up settling somewhere in the low 3's My range since has been as low as 2.8 to as high as 3.5 when ill w/a UTI. I was put back on the transplant list in 2013, then listed as inactive later that year or 2014 (whenever I met the new dr - he replaced the one who did the biopsy. The biopsy dr now works in Idaho - where there are no transplant hospitals). Now I am in the process of being listed as Active again. (should add - the new dr and I both agreed to change my status to Inactive due to my being stable. I still am stable. The idea for being Active now is I won't get calls for a year or 2 at the earliest anyway.) And the good news? I have 0% PRA!!! Woot!!!
My tx hospital is University of Washington in Seattle.
I do have to say that I prefer transplant as treatment. Even with the biopsy setback - which was very depressing, I'm not going to lie - I feel like I live a normal life. I have had only one other hospital stay since that emergency surgery. It was a 2-day visit for chronic UTI. Had IV antibiotics and labs monitored. Easy hospital stay w/a private room, decent food, and it fixed the issue. Between the IV's and oral Cipro, it not only cured the chronic UTI - I haven't had another one since. I don't have any serious side effects from the meds. I am very lucky to have a good union job w/really good benefits. I get all my meds except one for a $0 co-pay. The only one I have to pay for is Renal Vite, and that's just under $15 a month.
I work FT at a geek/desk job, work OT when I can or have to (10-hour days right now), love going on trips and day trips, vacations, see shows, etc. Not having to worry about dialysis makes all of that easier. Carrying meds in my purse and making sure I have enough water to drink is easier to deal with. My only complaint is having to use the Honey Buckets when at outdoor concerts!
KarenInWA
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I started coming here post kidney and pancreas transplant (Dec 2000 at Northwestern in Chicago, IL), but things got in the way and was easier to keep up ith some of the members from here on Facebook. Eventually computer problems happened and I could not post using an iPhone at the time and interest was subdued. Now there are more new people than people I know on here.
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Chris, how much medication are you on?
KareninWA, that's the kind of NIGHTMARE we all DREAD! Glad you're doing better. That's why I NEVER want to have a biopsy unless it's REALLY necessary!
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I live in the Chicago area but received my transplant at the University of Wisconsin. I was fortunate enough to be able to multi-list so I was primary at University of Wisconsin and secondary at Northwestern in Chicago.
I got my transplant in the Chicago area too! At UIC. But I'm from St.Louis.
Which hospital did you guys go to for Tx?
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I started coming here post kidney and pancreas transplant (Dec 2000 at Northwestern in Chicago, IL), but things got in the way and was easier to keep up ith some of the members from here on Facebook. Eventually computer problems happened and I could not post using an iPhone at the time and interest was subdued. Now there are more new people than people I know on here.
Hey Chris!!
Good to hear from you.
:beer1;
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Chris, how much medication are you on?
Are you asking total medications or just immunosuppressants? One is going to a longer post!
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Hi Zach :waving;
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Chris, how much medication are you on?
Are you asking total medications or just immunosuppressants? One is going to a longer post!
Just the immunosuppression. Can you please also just say the number of meds you take a day? Thanks.
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1 mg Prograf twice a day
1 mg Rapamune once a day
28 prescriptions so far, maybe more after Monday due different issues. However some are temporary medications.