Over the past few months, with my health deteriorating I have been viewing my options for what might lay ahead.
When I learned I had inherited EDS, I realised any operation was going to be out of the question and when my tendon tore in 2011 I readily accepted that I would end up in a wheelchair in the near future. While my family was wondering how I would take not being able to go out on day trips, my phlegmatic approach worried them, but at the end of the day-I knew it would come to this and when it did, what was there to worry about http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
While not being able to travel further than Bristol is sad, as I had things I wished to do in Scarborough, which will never get done. It was not too serious and I soon learned to cope with my ever shrinking world.
My biggest shock came a few months ago; I went to the doctors complaining about a pain in my chest and he found a heart murmur-no biggie there-what followed was the horror as I learned that not only did I have a murmur but my heart was malformed-again inherited and the reason for the shortage of breath was not only caused by the severe bronchitis I contracted the week I got married, but was the result of a more serious and terminal illness which had gone undetected http://en.wikipedia.org/wiki/Hypertrophic_cardiomyopathy
One of the respite methods is a pacemaker inserted under the left clavicle, but there is a risk of infection with this operation and my EDS would increase this risk many times. If the foot specialist at Frenchay Hospital, Bristol, was not happy to operate on my tendon; which would have left scarring in the relatively safe area of the tendon, I cannot imagine the cardiologist considering a chest operation.
In my researches I came across ASA http://en.wikipedia.org/wiki/Alcohol_septal_ablation this involves injecting the heart with a controlled amount of alcohol to induce a controlled heart attack; this is a relatively new control method and has only been used since 1994, but increases the chance of success to over 50% growing to about 85% in several years.
I realise that there is a risk with this operation, but there is minimal invasive surgery; meaning less scarring and hence less chance of infection.
At this time, all I can see is buying myself a few years and perhaps ending up with an Oxygen cylinder-my worst fear was to become a burden to those around me and it appears it will happen.
Ironically, most of my mother's family lived well into their late 70's and many into late 80's; many were heavy smokers for many years and yet it would appear I might not live to 65, despite not being a heavy smoker and giving up many years ago http://uk.lifestyle.yahoo.com/quit-smoking-little-girl-124800633.html