Yesterday I learned

[Sugarlump]

from the cardiologist that barring a miracle, I will never be fit enough to go back on the transplant list. For someone ten years on of dialysis and two failed transplants, still
having that small hope I might just manage a live donation ... well that hope is over. My life will always be around dialysis.
I grieve for the live I won't ever get back, and the two kidneys that failed on me and the coming to terms with the end of hope.

I just wanted one more crack at normal life. Life is so bloody unfair at times.
I wonder "why me" a lot. There are no answers...

I have to somehow learn to adapt to a new phase. I will find a way. But it's tough.
A bitter pill to swallow.

 

[Michael Murphy]

I am sorry to hear that the transplant door has shut on you.  But you are getting married next year and that gives you something to look forward too.  As for the future in the next 5 to 10 years the base technology may make thing possible that can't be done today.  I have read other posts you have written the positive energy you put out is clearly visible in the way you respond to others.  Try for a second opinion another doctor may have a different view of your future. I hope things get better you deserve better.

[malibu1]

That really sucks.  I am so sorry. Indeed a bitter pill.

[jeannea]

I'm sorry. That must be very hard.

[obsidianom]

SORRY.   The one thing I can offer is that in the coming years dialysis may change as new machines and wearable kidneys are close to being ready. It will get better. Hope you can do home hemo now.

[willowtreewren]

I second what Obsidianom said. The world of dialysis is changing. I hope it gets better for you. I know that holding out hope is a wonderful refuge for the soul, but you will find a new normal.

 

Aleta

[MooseMom]

What a crappy piece of news.

What exactly did your cardiologist say to you? 

[MaryJoe]

I'm sorry you've had this disappointing turn. I know your naturally optimistic outlook will return soon, but I also know this is a hard change to face. I'm glad you have supportive and loving family to help you through this.

 

[okarol]

What a crappy piece of news.

What exactly did your cardiologist say to you?

I was wondering the same thing.
So sorry about this. But I am always one for getting another opinion.
{{{big HUGS}}} 

[noahvale]

^

[cassandra]

I'm sorry to hear that Sugar, but look to the new developments, and your friends, and fam etc. you'll feel better soon, get on with home hemo (a change is as

good as a rest) 

I keep telling that to myself

Lots of love, Cas

   
   
     

[Sugarlump]

Basically (the short version!) when I contracted an MRSA infection in hospital December 2012, it affected my nervous system and my heart. I started to have attacks of pericarditus (fluid around the heart) pneumonia (three times) and breathing difficulties, including a minor heart attack. Although I have recovered in some areas, the strain on my heart meant it has become enlarged and the left ventricule doesn't pump as well as it should and the valves leak.
Although my symptoms are minor now, and I have stabilised quite well, my heart remains at only about 30% on the left side. My body may repair itself which it can do but the cardiologist said it very unlikely to ever repair enough to withstand the stress of a very major operation. I have found if I exercise hard at all I can have a relapse afterwards when I feel quite poorly for an hour.
I understand (in theory) that I wouldn't pass the stress ECG test (20 minutes fast walking on treadmill) and that to operate on me and waste a precious kidney if I died during the op wouldn't be fair but I would like to think I might get stronger. Or miraculously recover!
I am having another echocardiogram but he was pretty pessimistic and although the final say would be the transplant surgeon, because I had antibody problems with my last transplant, it would not be straightfoward regardless of my heart situation. The odds are, basically, stacked against me heavily.

I am a very positive person (once I get my head round things) and I have a very supportive and understanding partner and good friends. We are about to start home haemo which will give me back some control over my life. We do manage to travel with a lot of organisation beforehand. And I am heaps better than I was (if not as before December 2012) if not fully independent.

When my kidneys first failed in 2005, I had this plan (in my innocence of life with ESRF!) that I would do dialysis for two years (and finish my degree) then have a transplant, six months off to recover then back to work in Environmental Science and everything would be hunky dory!!! Nothing could be further from the truth!
Yes I got my degree (studying during dialysis) and then a transplant Feb 2008 ... but I caught CMV and the transplant failed after three months. So it was back to dialysis and yes, another almost perfect match kidney came along. I was doing really well (I got to fly to America and met Chris and Moosemum) I hired a personal trainer and got fit and I met Drew, my partner. Twelve months on (which is usually the point you can relax) I had serious antibody issues with one tiny tiny gene and it failed, despite them throwing the kitchen sink at it in treatment...
So back on dialysis with the possibility of a live donor op (for antibody removal first) and then wham I catch MRSA and I never really recovered. And all because the hospital omitted to give me antibiotic cover when removing a dialysis line and replacing it...

Do I feel unlucky? Yes
Will I let it beat me? No
I intend to live my life as full as I can for as long as I have left. 

My motto is don't wait until tomorrow, do it today and never let other people tell you No you can't do that...

[jeannea]

Sugarlump, you are very strong. I hope you do well on dialysis and feel able to live your life.

[BobN]

Sugarlump, so sorry about your news.  But you sound strong and mentally tough.  And you always have your family here at IHD.

Keep your chin up kiddo.

[SooMK]

So sorry Sugarlump. Sometimes it just astounds me the burdens people must bear. Attitude trumps all and it's clear you have that. There's always that period of time when you are just reeling after bad news hits. It's like you have to spend time processing it in order to accept it before you can move on. I wish you all the best.

[Charlie B53]

.............I have found if I exercise hard at all I can have a relapse afterwards when I feel quite poorly for an hour.
................

My motto is don't wait until tomorrow, do it today and never let other people tell you No you can't do that...

Reduce the intensity of your exercise.  But never give up.  Over time your heart WILL gain strength.  Keep at it, then repeat the echo every other year to map youor progress.

Maybe by then they will learn how to 'grow' kidneys.  I'm expecting them to, just hope I'm still around when they do.

Have Faith in yourself, never let the Bast2345 get you down.

[kristina]

Hello Sugar,
I agree with what Charlie has already said.
And please don't forget that there are many clever doctors constantly researching to find better medical treatments...
... I have just found out that many of the treatments available for me right now were not even available two years ago...
... who knows what will be medically available tomorrow?
Best wishes and good luck from Kristina.

[okarol]

  Love ya Sugarlump!! 

[kristina]

Good luck Sugarlump !!!
And best wishes from Kristina.

[JW77]

Oh Sugar!

I've danced the devil with the cardiologists a couple of times, the last with fluid overload and murmurings of a valve replacement.. I was CRAPPING MYSELF, big time..  What IS IT with the left ventricle and cardiologists anyway? Eh?


This has happened to me twice, and each time removing the fluid has eased off the stress on the heart. Near normal valves. 


Hope that the heart can work miracles.. But I'm on dialysis, for a long long while, after 3 tx, meningitis, cancer, I've got more anitbodies than the you can shake a stick at!.. 4th kidney, very unlikely and I'm not on the list, by choice at the moment.

Apart from walking and kiting, I've found Qui Gong (pronounced chi gung, or Chi Kung) very helpful.. Softer than Tai Chi, I take classes at the local library. Its a very good form of exercise and easy on the body:)

Don't let the b88stards grind ya down!

To quote the Cat Empire 

"But you're the same as you and I'm the same as me
And hopefully we can find ways to let us be reasonably fine,
Reasonably fine, at least to let my music shine "

[Sugarlump]

Hi been a bit poorly since Boxing Day. Caught a wretched cold and cough, and the cough is lingering.
My body feels so tired, even standing up for short times really exhausts me.
I am hoping and praying it's just a slow recovery to the cold rather than further heart problems.

I so want to go out for a walk with the dogs, but it feels like I am walking in treacle.
Have found a rehabilitation gym nearby that has sitting down work out machines. Thought I might give that a try.
I can't do a lot with my arms because of fistula but if I could strengthen my leg muscles up it will be a start.

[kristina]

I am very sorry Sugarlump that you are not feeling well and I send you many "get well soon" wishes.
Please make sure that you have recovered from the cold and cough, before you venture into the gym nearby.
And please take great care ! I send you my best wishes,
Kristina.