Do people stop posting after getting a transplant?

[robertscz]

Just curious if you have noticed over the years that once someone receives a transplant and sourta gets their life back in order if they tend to drop off the boards and stop posting? It seems as though with all the people that receive transplants that there would be more postings in the transplant section. 

[iolaire]

We have a few users who have had their transplants for a while and provide good advice.  Others have long transplant histories but are now on Dialysis.  But yes I assume most people start to visit less as they move further from their Dialysis days.  I'm still posting after a recent transplant but do assume that my visits to the site will decrease as some other hobby like interest builds in its place.

Also for whatever reason the number of active members is fairly low, maybe under 50, which is far less than the 11639 total members.  People show up and then move on at some point with less staying around for the long term. 

[robertscz]

OK, I guess that is good news for the fact that this is somewhat temporary and once someone gets a transplant they get back to normal life rather quickly and stop coming here.

[Xplantdad]

My daughter got her transplant last December, but I still try and post....to keep people updated 

[robertscz]

How is she doing xplant dad? How old is she?? I'm still new to all of this and trying to get as much info from people who have gone through it. It's scary and I want to know that it's going to be OK in the end

[kristina]

Just curious if you have noticed over the years that once someone receives a transplant and sourta gets their life back in order if they tend to drop off the boards and stop posting? It seems as though with all the people that receive transplants that there would be more postings in the transplant section.

Many thanks for mentioning it, Robert! I have been wondering - on and off - about the same question and apart from a few transplanted faithfuls, who kindly inform us about their progress, it is difficult to find out how transplanted ESRF's are doing generally. I was always interested to figure out whether a transplant is truly the very best way forward if dialysis is going well? Is really everyone who has had a transplant, doing so much better or are there sometimes second thoughts, or even regrets?
After all, dialysis-treatment is being exchanged for lots of (perhaps unpleasant?) heavy medications to keep the transplant and one wonders how this medication is going along with the organism of the transplanted person?
Mind you, I am active on the transplant-waiting-list and at the same time I do my very best to survive as best as possible on dialysis and  - touch wood - dialysis is fortunately not too disagreeable, as long as one "sticks to the rules" of keeping strictly to a kidney-friendly diet and "sticks to the rules" of strict liquid-limits.
Best wishes from Kristina

[Xplantdad]

How is she doing xplant dad? How old is she?? I'm still new to all of this and trying to get as much info from people who have gone through it. It's scary and I want to know that it's going to be OK in the end

Hi Robert (And Kristina)


Holly is 26 years old...and doing well!

If you go here, you can read about my daughters trials and tribulations for her first transplant---her heart: http://ihatedialysis.com/forum/index.php?topic=33126.msg503028#msg503028

And then, if you go here...you can read about her second transplant, the kidney                                  http://ihatedialysis.com/forum/index.php?topic=33667.0
 

I try and update her status at specific intervals...but I am always available for any transplant questions....

[okarol]

I think living on dialysis requires more sharing and navigating compared to life with a transplant. The reality is that transplants don't last forever so we see people come back if they are facing dialysis again.

[kristina]

Many thanks iolaire, robertscz, Xplantdad and okarol(Jenna) for your kind updates it is very much appreciated and I do wish you the best of luck.
Best wishes and thanks again from Kristina.

[willowtreewren]

My husband is 6.5 years post transplant and it is going strong.

He does have occasional issues with the anti-rejection meds at times. And he actually sees more doctors now than he did pre-transplant. He has to see the dermatologist twice a year, the rheumatoid specialist because of bone issues, and of course, his transplant team, urologist, nephrologist, etc, etc.

His creatinine runs around 1.1, though. We are continually thankful for this wonderful reprieve from dialysis.

Aleta

[MooseMom]

I started posting here 10 years ago.  I was "pre-dialysis" for 8 years and received a pre-emptive cadaveric tx 5 years ago.  The fact is that I've never been on dialysis but have always been fairly active on this board.

I have shared a lot of fears and hopes on this forum, and many people have helped soothe me over the years.  Having a transplant is wonderful, but it brings its own trepidations, so I still rely on IHD for guidance.  There are quite a few members who have received transplants who probably don't post until they see a request for information or help from another member.

I would never dream of dropping off the forum because I know that for many here, transplantation remains the ultimate goal, and I want to stick around to help when possible.

Also, I don't want to leave my IHD friends behind just because I've had a transplant.

[robertscz]

Well the way I look at it is similar to people posting about restaurants or hotels.. Often times they don't go out of their way to post something positive that happened at that place, but they will go out of their way to post something that was negative or went wrong... I'm assuming this is somewhat similar to the point the people who od get their transplants most of the time have no issues afterwards... It's the small population of people who have issues that will post here. At least that's my optimistic approach to it

[MooseMom]

You're right, of course, which is why I make a point of posting here.  I've had no real issues, and the ones I have had have been mostly in my head.  I want people to know that transplantation, which is not for everyone, can be a truly miraculous and life-affirming treatment.  I want to show that there are many, many positive aspects to it, and if I want to spread that message, I have to keep posting here.

[robertscz]

And I for one am very thankful that u do continue to post here... I am 35yr old this hit me out if the blue like a ton of bricks and the only hope I have of living a somewhat normal life is to get that transplant.  My family, the Dr's, nurses can all tell me this is temporary and I am going to turn out ok but it takes someone like u who has been through the same thing as myself to really get my hopes up that there is light at the end of the tunnel.






Sp mod Cas

[MooseMom]

I apologize for not having seen your first post sooner.  Having just read it, yes, I can imagine all of this must have been a terrible shock to you.

Every patient is different, and every transplant center has slightly different criteria, but aside from that, I'd be happy to answer any general questions you may have.

I wish you all the luck in the world.  It sounds like you are generally healthy, so that is a real plus for you.  You have every reason to be hopeful for a good outcome!

[Xplantdad]

And I for one am very thankful that u do continue to post here... I am 35yr old this hit me out if the blue like a ton of bricks and the only hope I have of living a somewhat normal life is to get that transplant.  My family, the Dr's, nurses can can all tell me this is temporary and I am going to turn out ok but it takes someone like u who have been through the same thing as myself to really get my hopes up that there is light at the end of the tunnel.

Robert, I can confidently say that you can have a very normal life after transplant. You are young (only 10 years older than my daughter). My daughter had had her new heart for almost 27 years and it's still going strong...and in December it will be 1 year for her kidney. Except for little issues adjusting and changing transplant meds to keep the immunosuppression as low as we can get safely...and bi-weekly blood tests and monthly doctor visits....she is free to do whatever she wants. We are going on a major road trip back to Chicago in November for a really cool car show that my friends put on each year...and we're taking 15 days for the trip

Finally, We take each day for what it is...a blessing to still be here. That's the gift our daughter has given to our family and friends...the knowledge of what's important in life...and how short and fleeting life really is (and can be). If you have any questions there are a bunch of people here that can help

[robertscz]

Thanks xplantdad... It's so hard for me sometimes,i am just fine most of the time until I go to that God awful dialysis center.. I went yesterday and left almost in tears because this is what my life has turned into... I have a tube sticking out of my chest and I have an arm that looks like it got slammed in a car door 5 times. I was always in shape, always lifting heavy always took care of myself and now I can't even bear to look at myself in the mirror without tearing up. Sometimes I wonder if this is all really worth it. My fiance is 26 and it's gotta be so hard on her, she deserves a normal life as well.  I just want it all to be over with I wish there was some sort of guarantee on the TX.. My Dr said 20yrs is average out of Tampa general, that would b fine if I knew that was going to be me. Hopefully in 20 years they are using artificial kidneys from pigs or even the "kidney project"   I just came here to look for some reassurance so thank u guys, it's very depressing coming from where I was to where I am now

[kickingandscreaming]

it's very depressing coming from where I was to where I am now

All of us (or nearly all of us) have come from "where I was" to "where I am now."  It sucks, but it's what we've got.  I'm much older than you, but there is still a similar shock of transforming from a pretty healthy senior who religiously took good care, to one with lots of big health problems.  We all have our shocks to deal with, and most of us find a way to make peace with our situation.  I'm sure you will, too.

[Xplantdad]

Hi Robert,

My daughter had a CVC in her chest as well. We didn't like the dialysis centers either-so we learned how to do home hemo...and did it daily at home. Dialysis centers are depressing especially for younger folks....most of the time. My daughter can make friends with anyone, so it made it much easier for her...the overall response she got from folks there was that they felt sorry for such a young person to be there. There was only one other younger person at her dialysis center, but he got a transplant really quickly

You have to make the best of each day. It's okay to be scared. It's okay to be depressed. You can't worry "how long the transplant will last"...as you have no control over that (other than following the prescribed protocol after transplant). Feel free to ask any questions you have. I could PM you my phone number if you wanted to talk sometime, too

The folks here are great as well!

[robertscz]

Yes, could you please send me ur number? It's nice to be able to talk directly to people

[robertscz]

And yes, it's very depressing in the clinic I am prob the youngest by 20 years and everyone else seems to have other issues like diabetes/oxygen and I walk in and it looks like I came to the wrong place.... I met w my surgeon from Tampa 2 weeks ago and he relaxed me a bit. He has done over 1k transplants I felt very comfortable with him.. I also have my fiance and my coworker who both got tested and came back that they are matches... Once the surgion heard that he said after I get my 2 tests done (echo and abdominal scan) which I did last week, I can then be approved.. Once that happens he said the donors can get tested and we can transplant within 6-8 weeks.... So fingers crossed this dialysis is temporary. I understand a transplant won't cure anything but I will trade a few pills /day for doing what I am right now!

[iolaire]

And yes, it's very depressing in the clinic I am prob the youngest by 20 years and everyone else seems to have other issues like diabetes/oxygen and I walk in and it looks like I came to the wrong place....

...He has done over 1k transplants I felt very comfortable with him..

Hopefully you don't need this advice for long but you might consider trying some different shifts at the dialysis center to at least find people of working age.  I found the third shift I was on generally had people of working age (who were also healthy enough to work), say 30-60 years old.  More frail patents would show up in that shift but generally they ended up moving to earlier shifts.

1k transplants should generate tons of experience!  My center GW started their transplant program in the last few years and just celebrated 100 transplants - the surgeon came from ATL so he probably has many more transplants under his knife, but still 1k sounds high...

[Simon Dog]

You will also find that the Tues/Thurs/Sat afternoon shift is the least popular.   You can spot the unpopular shifts by the prevalence of catheters.  Many start on cath, and by the time they have a fistula installed, enough people have died off, transferred to home treatment, or been transplanted to open up slots on M/W/F shifts.

As to "people under the knife" for a center - probably irrelevant, as everyone seems to have the surgery part figured out.  Keeping that sucker working for years and years after the xplant is the tricky part.

[Xplantdad]

Robert- What Simon Dog and Iolaire said is right...maybe try changing your shift around if you can. As far as your upcoming transplant...sounds like things are progressing well! Just keep in the forefront of your mind that what you are doing now is temporary.

Iolaire, Mayo Scottsdale did right at 375 kidney transplants last year-which beat the years before numbers by a few...but not much. From what I remember, they have 8 transplant surgeons on staff now. They are pretty good at what they do

Robert...I will Pm you my number !

[iolaire]

Iolaire, Mayo Scottsdale did right at 375 kidney transplants last year-which beat the years before numbers by a few...but not much. From what I remember, they have 8 transplant surgeons on staff now. They are pretty good at what they do

My sounds high comment didn't mean doesn't sound correct, just sounds like a lot of practice.