The 16% that went straight to transplant. . .

[smileeface]

Thanks for that poll this morning - that was cool!

So, I'm scheduled for a transplant on July 21 - I know - I'll believe it when I'm in recovery.

But, this presents me with the opportunity to not experience dialysis.  I've only visited the clinic once for a tour and mock training.  I've read many many posts on here and done a ton of research.  I am eternally grateful for the opportunity to avoid dialysis.

I've just started thinking - will I appreciate the new kidney as much as I should?  Just the sheer thought of the time and energy of dialysis makes my head spin.  But, considering the alternative - I'll take it with pleasure.  I'm just wondering will I continue to keep that perspective?  Maybe the daily medications will remind me.  Maybe the gigantic scar on my belly will remind me.  Maybe experiencing my son's activities will remind me.

I've also been fortunate to not experience the other symptoms of kidney failure - fatigue - funny tastes - dry skin.  The worse thing I've had is 2 days of gout in my foot.  I am more active than an average person - "high energy" is how I'm described 

These aren't really questions for anyone to be able to answer, but I would appreciate input, especially from those that have been able to skip dialysis.

Thanks much
Karin

[cykid]

Well, I've also been lucky enough to get the transplant done before doing any dialysis at all (preemptively). The ESRD did affect my life though, especially after I found about it and became aware of it's effects. A year after I did the transplant and that was it. I still have the fistula though, as I was prepared for the dialysis.

At any rate, all the studies agree with the fact that a preemtive transplant is the best solution to ESRD. In the case of dialysis not only you risk to be infected with some hepatitis virus (that's what happens in Romania), but years of dialysis would also have a negative impact over the blood vessels to say the least. And they are very important to the transplant.

In an ideal world you'd never experience dialysis, but usually that's the outcome eventually should your new kidney fail. People say dialysis kills the body and such, and I'm nobody to say it's not true. But having spoken with lots of great people, my conclusion is that dialysis is a way of surviving, and we really should be gratefull for it's existance. What would it have been without it ? You'd be pushing dasys in weeks/months.

Just live your life and don't feel guilty about skipping dialisys (I always felt like this, although I can't say why. I feel like I cheated or something). You sound pretty much like me, enjoying your life to the max.

[Rerun]

Whenever (if ever) you forget to take your anti-rejection medication make yourself go visit a dialysis center and you have to make yourself stay there for 3 hours.

That will be a good lesson for you.  I doubt you will forget your anti-rejection drugs again if you do that.

                      

[monrein]

My thought in response to your wonderings about not appreciating a transplant as much as someone who has had to experience D...I definitely don't need to have my legs amputated to appreciate how difficult and frustrating life in a wheelchair would be.  You won't know as much as many of us do about the details of dialysis but you can read about them here and thank your lucky stars.  You can pinch yourself till you draw blood to "experience" cannulation and sucking for a bit on a penny dipped in urine is a good approximation of the "taste" of uremia.  Personally, I'd just thank my lucky stars and live life as if it's the only one you have...do everything in your power to respect your body and it's basic needs and give a pass on modern society's many ways to pretend that we're immortal by doing a whole host of nutty things.

All you need in order to remember all that you have to be grateful for is to reflect on things...a good thing for each person to do on a regular basis. 
    

[kellyt]

I agree Monrein.  I was able to avoid dialysis, as well.  I transplanted at 7% function and a creatinine of 5.1 (upon admission).  I, too, never really suffered the side effects of failing kidneys other than fatigue and muscle weakness, but that came and went.  I was on Epo shots for a few months here and there the last year and that help a lot.

I appreciated my transplant, but can honestly say that had I never found this site and never learned all I learned about dialysis I don't know if I would be so diligent with my meds and such now.  I use my cell phone as my alarm and it's set for every time I take my meds.  Luckily, I'm down to three times a day now.  I take them at 9 a.m., 7 p.m. and 9 p.m. (anti-rejection meds at the 9a and 9p times).

I will admit that the side effects of the medications are a real pain at times, but NOTHING I can't deal with.  The body/joint pain I am currently experiencing is not related to my anti-rejection meds at all and I am super grateful for that, too.   

Recovery for me was a cake walk.  Yes I was sore, but nothing like I had imagined it would be.  People were shocked when they came to visit me in the hospital and even when I was home.  It is a surgery that one would think would keep you down for months, but it wasn't the case for me.  Good Luck!

[MooseMom]

If you think you may not appreciate the new kidney as much as you should, and if you suspect that you may have some guilty feelings, perhaps you can make a pledge to do some charity work or volunteering as a way to show that your new lease on life is for a purpose.  I've had luck in my life, most of it bad, but I was lucky enough to have a pre-emptive transplant (which would be particularly miraculous seeing as I have had no offers of donation), I wouldn't sit around feeling guilty.  I'd go out there and show the world what I could now do to make someone else's life a little better.  I might start with seeing if there were volunteering opportunities at my local dialysis clinic!

[Jie]

It is good to have a preemptive transplant. However, is a transplant at 16% function a little bit too earlier? If it can be delayed for a year or two, one can delay using these drugs.   

[MooseMom]

It is good to have a preemptive transplant. However, is a transplant at 16% function a little bit too earlier? If it can be delayed for a year or two, one can delay using these drugs.

Oh, wait...I thought she meant that 16% of people who get transplants get them pre-emptively, ie before having to start dialysis.  OK, I'm officially confused.  I'm at 16% gfr right now, and I wondered myself if I should go ahead and accept a transplant should the clouds open and a miracle drop from the sky, or should I hang on to my native kidneys as long as possible?

[monrein]

I was at 16 % when I started D and felt like death warmed over.  The numbers have different implications for each person. 

[MooseMom]

I was at 16 % when I started D and felt like death warmed over.  The numbers have different implications for each person.

Oh, that's so true.  I walked 2.4 miles today and I'm feeling pretty good, which I know was not your experience.  I'm still wondering exactly what the 16% figure means regarding the original post, though.  I didn't realize she was talking about 16% kidney function.  Maybe my brain is sicker than I realize!

[monrein]

I'd interpreted it the same way you did MM.

[kellyt]

Absolutely, cause I went as low at 6% and never started D.

[Rerun]

Moose Mom, from your post above you say you were lucky enough to get a preemptive transplant?  Did I read that right?   

If you are at 16% take the transplant.  Why waste your days feeling like crap?  Take it and run!

[BASSMAN]

Great Thread!

I am fluctuating between 18 and 20% gfr and they are going to schedule the transplant.  It should happen in July.  I haven't got a firm date just yet but they are talking July.  I have the same concerns but waiting could present a number of unforeseen problems that could ruin the opportunity.

I have taken prednisone before as a treatment 20 years ago when I was diagnosed with MGN.  I had infusion drips and took 40 mg  daily tablets for 3 months alternating with Lukeran every other month.  I did experience fat cheeks, increased appetite and craved sweets.

I have made the decision to go for it and skip dialysis.

When I first joined this site, I was going to just hang on until dialysis.  Go on social security disability and look at it as my retirement until I died.  Then I started reading threads on this board, learning about transplant and changed my mind.  I am not ready to give up on my life and just hang on.  Maybe I am rolling the dice and I might crap out but my wife offered to donate a kidney and she is a blood match.  She confessed to me that she has selfish reasons for donating.  She wants me to be around and as healthy as can be.  Dialysis would affect her life too and she is willing to take the risks involved with donating so we can continue as we are.  When she put it like that,  I was no longer against her donating her kidney to me.  Even if this falls through I will remain on the list for a cadaver kidney.  Everything looks good right now.  They want her to repeat the pelvic sonogram.  They want to get another look at something in particular so we are not 100% sure yet but the transplant center seems real positive.

I have to give some credit to some of the people on this site for inspiring me to go this route.  I won't get into naming names but many members here have influenced me.  If it goes bad, I won't hold anyone responsible.  I made an informed decision and this is the best course of action to take.

Best of luck to you!!

[MooseMom]

Moose Mom, from your post above you say you were lucky enough to get a preemptive transplant?  Did I read that right?   

If you are at 16% take the transplant.  Why waste your days feeling like crap?  Take it and run!

Oh, I'm confusing everyone else now, too.  No, I was speaking in hypotheticals.  I am not even on the transplant list yet.  My point is that my last labs showed my egfr at 16, but I don't feel like crap.  I feel more tired more quickly than I used to, but I don't really have any obvious symptoms.  If I knew I could go on like this forever, I don't know if I'd take the chance of a pre-emptive transplant if I was lucky enough to be offered one (again, I have no living donor lined up).  I'd be afraid of the side effects of the anti-rejection meds making me feel worse than I feel now, which is really not so bad.  But then again, I recognize that I probably don't remember what feeling good feels like, that I've just become accustomed to feeling this way.  If I had a living donor lined up, I might think differently, especially if it was a donor I trusted not to back out on me.

[smileeface]

Sorry all!  There was a poll that said 16% of the participants got a transplant prior to going on dialysis.

My GFR fluctuates between 16 and 21.

Thanks
Karin

[MooseMom]

Sorry all!  There was a poll that said 16% of the participants got a transplant prior to going on dialysis.

My GFR fluctuates between 16 and 21.

Thanks
Karin

Were these living donor transplants or cadaveric transplants?