10 years 8/12 and related question

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nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

10 years 8/12 and related question

Post by nycpetit »

Hi everyone! I am an oldie here. Last posts were eons ago. I am nearing my 10th transplantversary on August 12th! Unbelievable.
This is a question regarding post-transplant meds.
I take only cellcept and prograf and levels of prograf are kept at around 5.5 at the 12 hour trough level. I have been very fortunate with few side effects in my opinion but one thing I have noticed over the years, probably since I was transplanted (though pre-transplant steroids were worse) is anxiety and inability to really concentrate. Does anyone else have this? I work, and can follow through on physical tasks but it's hard to concentrate on tasks that have no real end. Example organizing papers, finishing tasks without jumping around to other things. Given I have a lot of organization to do in my daily life it is frustrating. I don't know if my meds are too high or if it's just a side effect. I am also often just exhausted. Bloodwork shows everything to be fine, potassium a bit high recently so I have been trying to watch that.

I guess I am wondering if any one else out there who is many years out, takes the same meds (no steroids) can attest to this feeling of being unable to be productive and stay on one task until it's done. Granted I work long hours, run my own business and am not always able to sleep as much as I need, but I am curious to know if anyone else has anxiety, exhaustion and inability to concentrate well?

Obviously this is not a huge issue but it troubles me given days can go by where I look at the same things I need to get done and just cannot finish. Almost feels like ADD.
When we offer a hand, others are lifted.
MidgeMan90
Posts: 132
Joined: Fri Jun 22, 2012 8:49 pm
Location: Staffordshire Moorlands
Contact:

Re: 10 years 8/12 and related question

Post by MidgeMan90 »

Hi,

I am 3+ years post transplant, so not that long but I suffer from anxiety terribly and it has only come about post transplant. I struggle to do things I did before without even thinking about them. My concentration levels are also through the floor, which isn't great as I am on the horizon of running my own business myself. I am still on a very low dose of steroids though, so I don't know if that affects me in any way.

I just know how you are feeling and just wish I could return to being 'normal' I guess, without all the anxiety.

All the best.,

Dan.
Diagnosed with end stage renal failure out of the blue - 11/02/2010
Haemo - February 2010 - April 2010
APD - May 2010 - June 23/2011
Transplanted via live donor - 24/06/2011.

Doing my best to look after that kidney.
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: 10 years 8/12 and related question

Post by Tibbs »

I have the concentration issue as well. My concentration has never been good (I get bored easily) but now it's pretty terrible. Combine the lack of concentration with a terrible memory, and working is a real challenge!

I've had my transplant less than 2 years, but I went to a focus group and there were some people who had had their transplant many years and they still had the same concentration issue.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: 10 years 8/12 and related question

Post by rheaybou »

First things, congratulations on 10 years post TX.

I can fully relate to having memory/concentration issues pre and post transplant. I would say that post transplant I have gotten much worse, I can lose the thread of a conversation or just stop mid sentance forgetting the topic.

I would put this down to my Tac and MMF meds, but also what I personally have gone through / Deal with mentally as a transplant patient.

Finding ways to make sure i dont forget things means constant alarms for important things such as medications and also living my life with post it notes on my desk, TV, in the car and all over the house to make sure I dont forget. I had sessions for anxiety with a Renal Counsellor that have helped.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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