Tiredness and Fatigue - Tetralogy of Fallot

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Tiredness and Fatigue - Tetralogy of Fallot

Postby ScottyBHP » Mon Oct 31, 2016 8:52 pm

Hi all

My name is Scott, I am 26 years old and was born with Tetralogy of Fallot.

Since birth I have had a number of procedures at the Birmingham Childrens Hospital, and at the Queen Elizabeth Hospitral Birmingham.

These procedures include:

- Right subclavian shunt (1990)
- Left subclavian shunt (1990)
- Open heart surgery to close the VSD, shunts and enlarge the right ventricular outflow and pulmonary artery (1993)
- Open heart surgery to replace the pulmonary valve and enlarge the pulmonary artery (2002)
- Radiofrequency ablation and implantation of a multisite pacemaker (2008)
- Transcatheter pulmonary valve replacement (2009)
- Implantation of an ICD (2015)

As a child I was mostly unaware of my heart condition and was able to play carefree with friends, with routine hospital appointments being the only real reminder of my condition.

However at the age of 26, and with growing responsibility in my life, I find myself increasingly aware of my heart condition and the limitations it imposes.

I work full time and find myself struglling with tiredness and fatigue on a daily basis. I have never spoken to anyone else with TOF and so find myself asking "is this level of tiredness normal for my condition" or "am I just looking for an excuse for laziness". I often ask myself "what is feels like to be normal" whilst wondering if my level of tiredness is "different" or "worse" than that of a fit and healthy 26 year old. I find being unable to quantify the "real life" extent of my heart condition extremely difficult to deal with.

I have endless questions on how other people with TOF manage with day to day life:

- Do you work full time?
- Do you work part time?
- How do you manage with working and running a household?
- How do you manage with working and having a family?
- Do you ever consider yourself to be lazy?

I would love to hear from anybody with Tetralogy of Fallot who would be willing to share their thoughts, feelings and anxieties on these types of issues, and who may be able to help me put a "real life" perspective on my own heart condition.

Thanks in advance.

Scott
ScottyBHP
 
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Joined: Mon Oct 31, 2016 7:17 pm
Location: Leamington Spa

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