How to cope with a life limiting condition.

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How to cope with a life limiting condition.

Postby Epgibbons » Tue Aug 01, 2017 10:35 pm

Hi all,
Sorry if this is not a suitable forum for such a topic but having found it tonight and found an affinity with the people on it I thought I would give it a go.

I received a heart transplant back in 1990. It was fine until a few years ago when it developed a tricuspid valve failure.This overworked the kidney which was already underpar due to the anti-rejection drugs available at the time. I developed CKD 2years ago, had to retire early (I am 53) and went first onto heamo using a tesio line ( a fistula is not possible due to my heart) and now PD for a year.

The topic I want to raise is how to cope with knowing your life is soon over; fear of the end and not being there for your family ( I have 3 children and a devoted wife). My body seems to have problem after problem. I am a Christian and have faith in God that all will be well in the end, but I still find myself welling up with tears. Does anyone have advice?
Heart transplant in 1990, CKD started 2015, Heamodyalisis for 6 months, APDfor 18 months.
Epgibbons
 
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Re: How to cope with a life limiting condition.

Postby AmandaClare » Wed Aug 02, 2017 10:44 am

Hi Epgibbons

I just wanted to say that I'm sorry you've had such a difficult time. But you are still here, against the odds!

I have one young son and I worry so much that I won't see him through to adulthood because of my illness and all the possible complications and side-effects.

I wonder if you could access a counsellor or minister via your church or the hospital to talk things through?

Other than that I don't have any advice to offer, just wanted to wish you all the best.

Amanda x
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: How to cope with a life limiting condition.

Postby Epgibbons » Wed Aug 02, 2017 10:51 am

Thanks Amanda, a simple reply such as yours helps a lot
Heart transplant in 1990, CKD started 2015, Heamodyalisis for 6 months, APDfor 18 months.
Epgibbons
 
Posts: 13
Joined: Tue Aug 01, 2017 8:07 pm
Location: Abingdon, Oxfordshire, UK

Re: How to cope with a life limiting condition.

Postby karnene » Thu Aug 03, 2017 8:59 am

I'm sorry you are going through such a difficult time. I've been a dialysis nurse for the past 7 years in the uk. We have a renal counsellor who visits the patients regularly. I'm wondering if this would be available to you. I really hope you get the support you need.
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Re: How to cope with a life limiting condition.

Postby wagolynn » Thu Aug 03, 2017 7:05 pm

Epgibbons wrote:Hi all,

I received a heart transplant back in 1990. It was fine until a few years ago when it developed a tricuspid valve failure.This overworked the kidney which was already underpar due to the anti-rejection drugs available at the time. I developed CKD 2years ago, had to retire early (I am 53) and went first onto heamo using a tesio line ( a fistula is not possible due to my heart) and now PD for a year.


RE fistula, I had my fistula created whilst using local anaesthetic without any problems, has this been considered?

The teiso line cannot give an adequate blood flow rate to give effective treatment, absolute minimum Kt/v, (an indicator of the amount of waste products removed from your blood during treatment) is 1.2 the latest recommendation is 1.4 currently I am getting a Kt/v of 1.5 but I am on ultrafiltration dialysis. Comparing blood results before and after treatment UreaRR should be greater than 65% (another way of measuring the rate of toxin removal)

PD can give high Kt/v values under the right conditions.

Best wishes.
wagolynn
 
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Re: How to cope with a life limiting condition.

Postby Epgibbons » Thu Aug 03, 2017 9:10 pm

Thanks wagolynn
Heart transplant in 1990, CKD started 2015, Heamodyalisis for 6 months, APDfor 18 months.
Epgibbons
 
Posts: 13
Joined: Tue Aug 01, 2017 8:07 pm
Location: Abingdon, Oxfordshire, UK

Re: How to cope with a life limiting condition.

Postby JMan » Sat Aug 05, 2017 4:08 pm

Its sometimes difficult to hold a faith when problems are so intimate within yourself 'for want of a better description'

You need to remember your are not on this journey alone. Counselling can be a great help, as your talking to someone neutral, and qualified who can listen.

Sometimes you need to concentrate on looking after yourself.

Stay strong, good luck..
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Re: How to cope with a life limiting condition.

Postby Epgibbons » Sat Aug 05, 2017 5:03 pm

cheers jman
Heart transplant in 1990, CKD started 2015, Heamodyalisis for 6 months, APDfor 18 months.
Epgibbons
 
Posts: 13
Joined: Tue Aug 01, 2017 8:07 pm
Location: Abingdon, Oxfordshire, UK


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