You notice VERY few people post in the transplant section?

[DialysisGoneFOREVER]

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? 

[kickingandscreaming]

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

[Fabkiwi06]

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.

[kristina]

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 ... ?

[Michael Murphy]

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.

[DialysisGoneFOREVER]

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!

[DialysisGoneFOREVER]

Hey Mike Murphy! Your post is   

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!

[coravh]

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.

[raramorgan]

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.

[DialysisGoneFOREVER]

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%!

[DialysisGoneFOREVER]

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!

[SooMK]

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.

[Deanne]

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.

[MooseMom]

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.

[DialysisGoneFOREVER]

Soo, Deanne, & MooseMom, what are your blood creatinine levels at?

Nice to see more Tx patients posting!

[MooseMom]

Mine is anywhere between 1.0 and 1.2.

[Deanne]

Mine is 0.7 - 0.8

[willowtreewren]

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

[kickingandscreaming]

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).

[Simon Dog]

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

[DialysisGoneFOREVER]

MooseMom, Deanne, & Willow, did you have have living or cadaveric donors?

[Deanne]

Mine was deceased.

[MooseMom]

Cadaveric.

[cattlekid]

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!

[kristina]

 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.