Marfan Syndrome, or any mutated gene mimicking this condition is, simply put, a devistating connective tissue disorder. The following provides an in depth explaination of this disease which is Paul is, and has been, experiencing.
In 2014 Paul also experienced a spontaneous rupture of his left psoas muscle which caused a large blood clot to compress his femoral nerve. This caused permanent neuropathy and muscle weakness of his left leg rendering him legally disabled and a fall risk; he has in fact fallen numerous times in the years since but has managed to hide this fact from many who know him.
Fast forward to the present. Paul has now had 5 surgeries within 5 weeks time. His initial surgery of 2017 was on the 3rd of July. This was a type iii hybrid aortic repair with TEVAR graft. Surgeries 2 & 3 were for posterior heart bleeds. Surgery 4 was for subclavian aneurysm bleed repair; previously not present. Surgery 5 was for a bleeding seroma at the site of incision where the right bypass tubing had been at. It was so large it compressed his lymph nodes and caused immense edema of his right arm. Between all the surgeries he also had a cerebellum aneurysm that ruptured along with mini strokes in the area of the bleed. Thank God the bleeding resolved itself without surgery. Amazingly, he seems to have circumvented the many issues related to this type of brain bleed. However, his current prognosis is new neuropathy of his left hand and enhanced permanent disability; although the full extent has yet to be determined. The known component is that he will now require a handicap accessible bathroom with a, flush to the floor, walk in shower now as well as safety railings, non slip tile and any unforseen accommodations.
With medical bills now beginning to be received, currently at the sum of $31,000, it will be impossible to fund the handicap accessible bathroom on our own.
For this type of bathroom renovation to be realized he needs the help of friends, family, friends of friends, neighbors, and anyone who can help contribute. The estimated cost will be $30,000 for renovations.
Paul is currently in a rehabilitation center and is expected to remain as inpatient for a minimum of one month; though his physical and occupational therapists believe it will be a longer duration.
It is my hope to have renovations underway prior to Paul's return home. Please help make this a reality for him!
- Mary Pockey
- Robin Hoelscher
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