Retirement Planning - To save or not to save

A place for GUCH Patients and their families to exchange experiences and gain support. So please feel free to ask any questions you may have.

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Retirement Planning - To save or not to save

Postby Meeks » Thu Dec 17, 2015 5:37 am

Hi all,

Please pardon the morbidity of the topic but I have reached the point of practicality with my condition. Having transitioned from CHD miracle child to 27 year old adult GUCH I am having a hard time figuring out how to go about retirement planning.

I have TOF. I have two corrective surgeries before the age of 5 and will need a new pulmonary valve before I can have kids. I try to "adult" as well as I can but it has recently hit me that I may be vigorously saving for golden years I won't be around to see.

Does anyone have advice on this patter? What are other folks doing? I presently invest 20% of my gross income annually. I suppose I'm looking for a GUCH accountant or financial planner hahaha
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Re: Retirement Planning - To save or not to save

Postby James G » Tue Jan 05, 2016 11:18 pm

To be honest I found out i had tof february last year after i broke my ankle and queried the blood thinners i was on, as far as i knew i had a basic hole in the heart which i grew up to accept was fixed then the doctor told i had a bit more than that and had tof and had been missed off the check ups for 25 years so i was booked for echos and other tests just last september i was told i had a rh ventricular volume of 200 should be in its 70's so i was put through the needs to be operated on quick list and october had my operation for pulmonary valve (Piggy one), Since then my checkups have been good they told me that the enlargement is slightly gone down. i've been off work prior and since this as having the odd pain and to be honest the worry has now giving me major anxiety problems where i'm giving myself palpations through worrying, although my many checkups since being told that i had tof and since the operation i was never told about a shortened life expectancy and was wondering have they not told me this cos i worry and also should i be asking the question or those of us on here whether we can retire early if this is the case, i don't want to work upto the last few years and not enjoy what i could have had, any ideas or is life expectancy different with certain TOFs??
James G
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Joined: Tue Jan 05, 2016 2:20 pm

Re: Retirement Planning - To save or not to save

Postby Tricky Dicky » Thu Jan 07, 2016 3:15 pm

Many ToF live to a ripe old age, see this webinar on Aging with Tetralogy of Fallot

Are you an adult living with Tetralogy of Fallot (TOF), the most common form of cyanotic (blue) congenital heart disease? Did you know that repairs for TOF patients have been available since the mid 50’s; but many adults with repaired TOF develop new cardiac problems as they grow older? These include leaking pulmonary valves, rhythm problems, and heart failure. Despite this, many TOF patients lead full and productive lives, bear children, and live to old age. As an adult with TOF, you don’t want to miss this webinar. Dr. Bill Davidson, ACHD cardiologist, will talk about new options for diagnosis, surgical/interventional treatment, and medical management of the operated Tetralogy of Fallot patient
Tricky Dicky
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Location: Camberley

Re: Retirement Planning - To save or not to save

Postby Alexldn » Thu Feb 11, 2016 6:59 pm

I've also been thinking about this.

So far my thoughts are:
- in most pensions the value is not lost if I'm not around to spend it , so family will benefit even if I dont - who knows how many dependents you'll have in future?
- if you don't save until you approach retirement the benefits ie growth is less
- who knows how long we will be around - you will probably need the money when you retire so stopping saving doesn't seem risk free

I guess a financial advisor may have ideas about more easily accessible saving plans - but then you won't get the tax benefits (I'm not a financial advisor- maybe worth asking one?

Good luck - its easy to take a negative view - although I've had the same thoughts as you
Alex - TGA (Mustard procedure) and associated other issues
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Re: Retirement Planning - To save or not to save

Postby dsbarnes26 » Wed Jun 22, 2016 1:48 pm

Really interesting question! I am 39 with an unrepaired Single ventricle. I know my life expectancy will not be same as other people, however, i still save into my pension. I am married with a 9 year old daughter, and as you say, they will get the pension pot when the inevitable happens. Unlike other people I can't get life insurance without paying a ridiculously high premium so its my way of providing some money for them in the future.
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Re: Retirement Planning - To save or not to save

Postby Skwerg » Fri Feb 24, 2017 4:41 pm

I'm 46 and had to retire early due to my ToF. By being in a pension scheme through my workplace I was able to access a (small) pension when I had to give up work, So investing for the future is still a big yes I think. I've always approached life as if I'm going to make it to 100, if nothing else to keep a positive mind-set. Part of that has been doing what I'd do if I didn't have my condition, such as pensions, looking for a partner, eating nice food and taking a little exercise. But I don't run for buses.
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