Neph says I could have transplant today because of 15% function, but...

[Sax-O-Trix]

I feel pretty good (knock on wood, very hard.)  I was at 15% in July and as of this week, I am still at 15%.  Other than being a bit more tired on occasion, I could go on like this indefinitely.  The neph says we will schedule the tx for after the first of the year if my brother's last test is good.  He says I should have the tx before I start having symptoms so I will have an easier time with everything .  I guess I am just really hesitant to do the tx when I don't feel ill.

 Has anyone here had any experience with this?   I need to reconcile all of this with myself and put on a brave face for my children.  Any advice?

[BASSMAN]

I got my transplant at 18%.  When I started testing to get on the list, I assumed that they would not transplant me until i got below 15%.  When my wife got approved to donate they scheduled the transplant.  I was told the same thing.  They like to do the transplants preemptively, before you reach the point of starting dialysis.  They cited better outcomes by doing this.  I was the same, the main symptoms I was experiencing were fatigue and brain fog, but I have noticed an array of improvements in many other areas post transplant to include sexual performance.

[Sax-O-Trix]

Bassman - 18%...  I guess I really am in tx territory at 15%.  I am glad you have reaped some extra benefits from your preemptive transplant:)  Just curious...   

1)  Did you have to have any dialysis after the tx while recovering (assuming you didn't before the tx because you were at 18%)?

2)  Did you end up with diabetes because of the immuno drugs (assuming you didn't have it before the tx)?

3)  What have your side-effects been?

[BASSMAN]

No I was not on dialysis prior and the kidney started producing urine in the operating room.  My creatinine was 1.2  two days after surgery so no I did not have to have any dialysis post transplant.

My blood sugar is still in the normal range at 3 months post transplant.

The main side effect I experience is hunger from the prednisone.  I make a conscious  effort not to over eat and exercise.  I have actually lost weight post transplant.  I am now in my BMI.  I also get tremors from the Prograf, but they are keeping my Prograf level at 10.  I assume that they want my Prograf level at this height because we were an 0 of 6 match.  The tremors should diminish as they lower the dosage.

I am at Creatinine 1.42 as of my last lab.

[Sunny]

I had my transplant oct 6th, four weeks ago, at 13% kidney function.
My doctors highly recommended pre-emptive transplantation because it will keep you healthier than letting your body wear down to the point of needing or close to needing dialysis. I was having severe anemia, hyperparathyroidism,calcium depletion, nausea, fatigue, brain fog, body pain, neuropathy and a host of other physical symptoms that low kidney function causes. You need to take into account that you may believe you're feeling fine because your body learns to accomodate for your low kidney function, but your body is also being depleted in many ways you can't see. Since the transplant my symptoms have all improved. The best thing I noticed was my brain fog disappeared. I can think completely clearly again for the 1st time in 10 years and I had no idea how bad I'd gotten in this regard.

[paris]

I am number 3 in this current list of pre-emptive transplants.  I stayed at 12-15% for almost 5 years!  I had no donors that matched, or I would have had a living donor transplant years ago.  One of our members, KellyT, was at 7% when she got her pre-emptive transplant. 

I agree with everything Bassman and Sunny have written.  You will notice a difference right away.  You get so use to feeling bad, you can't remember what feeling good feels like.   I still get tired, but I know that will get better. 

My blood sugar went up the first week, quickly went back to normal.   Like Bassman, I have tremors, but everyone assures me they get better.  I am not on prednisone, so I don't have any side effects from that ( yea!).

And I had no dialysis after the transplant. the new kidney was clearing out toxins from the first minute.

Good luck on this adventure.  Take things as they come and don't worry too much. The surgery and recovery is much better than I anticipated.  I am completely healed, driving and doing my thing.  Again, I do get tired, but it is a much better tired than before! 

[kellyt]

My GFR was bouncing between 6 and 7 when I transplanted and other than tired I felt fine.  Lots of people didn't even know I was ill.  My husband admitted frequently that he would forget I was ill.  But my neph was on top of things because he said the same thing basically with dialysis and that was "I don't want to wait too long and you start to really feel the effects of your kidneys shutting down, but I don't want to start you on dialysis before you're ready."  He most definitely wanted me to transplant as soon as someone was accepted, as I was getting very close to dialysis, and that's exactly what we did.  But no dialysis, thank God.  There is no point in waiting until you're super sick.  You recover much more quickly if you feel good when you go into transplant.   That is my opinion, as well as the opinion of both my pre and post transplant neph.  Good Luck!

[rsudock]

Hello Sax-O-Trix,
 I can identify with you about not wanting to have surgery unless you REALLY need to. Right now I am getting evaluated for a liver transplant as well. I am already on the list for my kidneys...I am not having problem with my liver currently but with my type of kidney disease I have portal hypertension that is causing scarring my liver. The docs are so nonchalant about it too..."Well hey we might as well list you for a liver too!" To me I would rather wait until I absolutely need it b/c I know there is no dialysis for your liver!!! How do they expect people to make these decisions...

When I had my first transplant I was on Prograf at first and I did get drug induced diabetes for 3 months...it was horrific. They switched my meds to Neoral and Prednisone. The diabetes went away but from the Prednsione I gained weight, had significant hair growth everywhere, terrible mood swings, and I was hungry all the time. The side effects lessen or go away altogether after they taper your doses.

Take care
xo
R