TOF - Tiredness

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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TOF - Tiredness

Postby MartinD » Tue Jul 08, 2014 11:20 am


I am new to the forum & i am looking for advice / support with my condition.

I have had numerous procedures for TOF since my birth in 1978.

1978 - 2 Shunt operations
1981 - Full Repair Surgery
1987 - Mechanical Pulmonary Valve Implanted
1997 - Bacterial Endocarditis
1997 - Pulmonary valve Replaced
2010 - Pulmonary valve replacement - Pigs Valve implanted.

I have always had a very positive outlook on all aspects of my condition whilst enjoying life to the full. However, over the last few months i have started to notice i am becoming more & more tired. I seem to have had a continuous flow of chest / viral infections.

I have discussed this with my consultant & will be going through an Exercise Test & right Heart Catheter in the coming weeks. Which has left me feeling fairly low.

I am just looking to see if anyone else has gone through a similar time.

Many Thanks
Posts: 1
Joined: Tue Jul 08, 2014 10:55 am

Re: TOF - Tiredness

Postby Forlyd » Thu Jul 10, 2014 8:56 pm

Hello Martin,
I started on the same journey as you, many years before you were born. I did not have the normal three heart faults which are classed as Tof, I had four faults ! Parents were told I would probably die before aged 12. I had my 66th. Birthday last week !
I have not had your mechanical Pulmonary Valve, but have had the Piggy valve put in 39 years ago. It's still going strong but my Tricuspid Valve developed a severe leak. I cannot have any more surgery because of recovery problems after general anesthesia. BUT I have not given up. Yes, like you I get very tired for no reason and my ability to walk is really rubbish. But these are the things you must accept as part of a Tof's life. We are fortunate to be alive ! Yes Martin ALIVE, not waiting for the next thing to go wrong. Don't get depressed. Depression will knock you off your perch long before the Tof's will ! We accept we are all different, but the meds and surgery now are so improved from my days over 60 years ago, that almost anything is possible. So cheer up Martin, I want you to stay around. I might just need you to push my wheelchair in a couple of years time !!!
Hope all goes well.
Love from Old Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Posts: 231
Joined: Mon Feb 09, 2009 2:04 pm
Location: Newcastle-upon-Tyne

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