Did I make a right decision?

[GoingThere]

It's me again . Every single day since my transplant I question myself did I make a right decision.
It's been more than 6 weeks and this is my first weekend at home. But on Monday I must go back into hospital due to slight increase in creatinine level on Friday. The irony is that I demanded one last test before going home. The increase was small, but the doctors want to be sure that this is just a part of a normal creatinine oscillation.

I admit that I don't have enough motivation to go another round of curing acute rejection. Before Tx I had really active and nice life but now everything changed. I envy people having no trouble at all with their transplant.

I'm depressed, really depressed. Will I live in a constant fear that I will get another acute rejection? In that way I will become slave of my transplant and that would be unbearable....Aggggrrrrrr, why is this happening to me? Why???


Sorry, today I'm not in a good mood.

Take care,

GT






 

[CebuShan]

    
So sorry that you are feeling down.
I am on the list but no word yet. I don't know how I would handle it considering it took me over a year just to get to the point where it didn't freak me out at the thought of having someone else's body part in me!
Praying for you and your new kidney.
   

[boswife]

This is even hard to read GT.  I wish you so much better.  I have no advice only my best wishes for things to change for you and for you to get back to living the life you want to live.  Im not the 'kidney' patient, but this disease has hurt me, the wife, to the point i wonder how to go on myself at times.  Fear of loss (of hubby) is constant with me so i can only emagine what it would have to feel to 'think' your getting this new chance, only for it to be causeing you so much greef.  I realize im not being uplifting at all, but it's because it saddens me to think our friend is going through this.  I pray with conviction that you will return to some life that you desire to have.  Much love, and hopfully, someone will come on to lift your spirits.   

[amanda100wilson]

The person that had the other kidney when I got my transplant, had issues for quite some issues following her transplant, but eventually it settled down, and I believe that ultimately,, hers lasted longer than mine.

[jeannea]

I'm sorry. I don't have a why for you. This disease is so sucky and has so many twists and turns. I've had my share. Sounds like you've had more than your share. There are no right and wrong decisions exactly. You do the best you can with the information you have. Just make sure they tell you everything. Take a deep breath and keep putting one foot in front of the other. Crying and swearing are also normal. Hang in there.

[willowtreewren]

You might want to PM Tyefly. She has some major issues post transplant, but then it all settled down for her.

I know it doesn't help for others to just say hang in there, but you really don't want to be emotionally saddled with dread. So what is the worst thing that would happen if you DID lose this Tx? You said that you had a good life on dialysis. Would it be simply awful to return to that? I'm not saying that you will, but if you look at that as not the worst thing that could happen, it might ease your mind so that you won't feel as depressed over your current situation.

I know that the ups and downs of the meds immediately post Tx was hard on Carl. Now neither of us thinks very much about the Tx.

I dearly hope that you will NOT have any more acute rejection episodes. 

Aleta

[Lexxtech18]

This definitely sucks to hear, GT! I hope it's only a normal creatinine change, or maybe it's a fluke. Lab analyzere aren't always totally accurate. Especially if your blood was slightly hemolyzed or there could be many other factors. Either way I will keep you in my thoughts and send good, healing vibes your way. 

[MooseMom]

Did you make the right decision?  Yes, absolutely.  You made the right decision with the information you had at the time.  You have enough on your plate without adding doubt to the load.

There is a reason that people say the first several months after a tx are the hardest, just as people say that the first several months on D are the hardest.  It is a lot to get used to.  Not only are you coping with recovery from major surgery, but you are also having to cope with really funky drugs.

I understand dread.  It can be debilitating.  It can leave you breathless.

If you are having another acute rejection episode, you WILL find the motivation to deal with it because we will help you.   But that has not happened yet.   

[RichardMEL]

I agree with what MM wrote.

At the time you made a choice based on the best available information at the time, and you also had the hope, like all of us, that a good tx for you would remove that need for D and that "chain" holding back aspects of your very active life.

Have you made the right decision? I counter with... you can't possibly know - specially since your tx ourney is still WELL underway - the story is not over by any means. And you're only 6 weeks in.... yes sure you've had the scary acute rejection and finally got home, but six weeks in and think how far you've come.

Yep the creat can go up and down a bit... I used to panic a bit more about it than I do now (and specially during those first couple of months!) - things to remember - if you drink less fluid the creat can go higher so be sure to keep the fluids up (yes a big adjustment for those used to restricting them!) and also just naturally numbers can come up and down. Over time you'll find what seems to be your "normal" range. Mine seems to be in the range of 120-140. Others are different.

The other thing to note with changes in creatanine is that it's less about a change from one test to the next, but it's all about a trend over time. You haven't said what your figures are (and I forget which measure you use) but let's say for example you were 100, then went to 110... if the next was 117, then that's a bit of a trend and I myself would be wanting a more frequent test (even though those example numbers are not a HUGE increase in themselves) but if it wasn't 110 but 107, I would say that's pretty stable - the next one could be 99 or 103... again in a range. Obviously you need to be guided by the docs, and also what your other labs are showing which could give clues as to why some things might be going on, but in general I have learned to not freak out when I go from eg: 122 to 137 as I did a few months back. The next one was 137 and ok it didn't go down but it didn't go up. I have another test in like 3 weeks, and we'll see. it could be 129, but if it was say > 145 then I would maybe want to do a test a week later. Again it's about a trend for me.

I know this all is a lot of hard work with labs and hospital time, and hard work emotionally to deal with. I really hope over time things settle for you and your bean and you start to really feel the benefits of the gift rather than the struggles.

hang in there.. it's still early days.

[natnnnat]

Its early days, and transplants can jump around in early days.  Gregory had a whole year of nonsense until they finally reworked his plumbing (his ureter from the transplanted kidney wasn't working, they had to swap it with his native ureter... or was it the other way round?)  That involved several abdominal operations to work it all out.  And then it lasted 20 more years.  Its worth getting through the early stuff, to see if your kidney can settle and do its job.  It might not work out, and as Aleta said, you didn't mind dialysis so much that going back would be unthinkable.  Remember that a transplant is a major thing, the surgery is major, the transplant is complicated medicine, and it all takes time - time for your body to react, time for the kidney to settle, time for the numbers to settle too.  Time, like, sometimes, many months.

Like Richard said, any buffeting of a kidney makes creatnine go up:  dehydration, illness, infections. Gregory says about his kidney Lucy:  "give her time to recover, she'll be alright."  Because he learned that giving Lucy time (and drinking and taking his medications and exercising) usually always brought him into the clear.

Here is the biggest hug available from Australia:     
I don't blame you for feeling down, (and transplant meds make emotions harder and bigger too, don't forget that part), and I really hope you feel better soon. 
I reckon a lot of your sadness has to do with not being able to get on your bike and do your thing, you seem like the kind of fellow who really needs to exercise and breathe fresh air every day.  Like my dad.
 

[justme15]

to piggyback on what others have said, sometimes it takes a while before things stabilize with your kidney.  In the first year of getting my transplant  I: developed a severe ulcer, fluid around the kidney, my left leg swelled up, I had a blockage in my ureter, I had to have a nephrostomy tube, and got multiple random infections.

...and my kidney lasted a good 11.5 years!! so sometimes these problems happen in the beginning, but they work themselves out.

[RichardMEL]

Nat adds some very good points that I didn't think about when I posted - namely that the big doses of meds will add to your own feelings - specially those bloody steroids - and the loss of your freedom to exercise would be hitting you hard because from what I've seen of your posts over the last couple of years that that is a major thing in your life(and trust me, with your new gift very important to be doing that when able too!)... so of course these are all things to ask yourself if it's been worth it to accept the tx.

This is al very understandable.

Your body has had a big shock with the tx, and the high doses of the anti-rejection drugs, and other things being messed with to find the right kinds of balances of drugs to support you and your gift - it's all in flux and so much to get used to.. it will all take time.

I know the constant labs and stuff are a bore - I had the daily (inc weekend) labs for the first month post tx, then it was like 3x/week, then down to 2x/week and so on. This is all to keep a good eye on you specially as during these first few months as things stabilise and the med mix also changes as that happens (comes down most likely) they need to see if changes affect your function so they can get onto it ASAP, but as it all becomes more routine hopefully you will need to be seen less and less and you can start to work on getting back into your exercise routine (but in a managed and responsible way of course) and hopefully that will benefit all involved (just remember extra extra extra fluid when you're out and about - after years of restrictions on D that has been one of the hardest things to readjust too! for me!!).

You'ce come through the acute rejection pretty well it seems and I am sure, sadly, there will be other bumps along the way (we all have them) - that's the nature of the beast. Remember, of course, that a transplant is another treatment option - not a magic cure that you bung in there like a new battery and away you go like the energizer bunny..... just as staying on D can have its own complications and "stuff happen" - the same with tx. Hopefully 5+ years from now you'll look back at this first few months and think "gee I worried so much about that and look how great it's been!" - that's what I want to happen - as we all do!

hang in there. I am confident this is the start of a more progressive road of recovery for you

[GoingThere]

Thank you all for your words. 

I know that meds add to my feelings and remember I had 10 shots of 500 mg medrol, got a little moon face  .

I really hope that this is the beginning of a new life.

Tomorrow I'll report you my results.

GT

[willowtreewren]

 

It is good to hear from you. Carl got the chipmunk cheeks from his meds, but they have subsided over time. 

Keep us posted!

Aleta

[natnnnat]

  Keep hydrated! I love Gregory's moon face 

[GoingThere]

I'm back home. Creatinine level droped to 215 (2.4 US format). So now, I will begin regular checks from home. First months 2x/ per week.
Though it was very funny when I left the hospital and went to nearest Pharmacy store to get my meds. I had 17 prescription and it took the employee more than 20 minutes to get me all the meds. Behind me a long line formed with grumpy customers  .
So, I hope that Chuck and me will happily together

[jeannea]

17 prescriptions sounds about right. Good luck!

[natnnnat]

Hear's to that. 
And here's to Chuck.   

[CebuShan]

Glad you're home and feeling some better!
     Hang in there you & Chuck both!

[willowtreewren]

Love it! 

Yep, enjoy all the prescriptions! 

And celebrate your chipmunk cheeks!

Aleta