Marfan Syndrome

[Patrick]

29/7/24

I'm baack.

I had a five hour cardiac procedure at a university hospital, which, treats Marfan patients at the rate of 2-4 admissions per week, on average., on 18 June. Our AB/DL folks are titillated, amused by incontinence; I am not. With twelve cardiac sensors wired to various parts of my body, two IV lines with piggybacks, my world swimming crazily on the hallucinations caused by anesthesia, two perky young nurses announced, "We're here to change your diaper." I was not amused. After a week in the surgical hospital, I was sent home, but had to return to drain two quarts of fluid from my left lung, and a third hospitalization to stabilize my heart rate. I am back, re-learning how to walk and submitting to cardiac rehabilitation each week.

I thank everyone here for their support and prayers. Here I feel among friends who know the difficulties incontinence throws at us, as nowhere else. I hope I can resume contributing as my health permits.

[wayne]

That's what I hate most about AB/DL, as it gets exposure out there. That's what the younger generation will "know", not the genuine IC issues.

That sounds like a horror show, but glad to hear that you're on the mend!

[Paul Henry]

Welcome back Patrick what an ordeal you have had.
I hope you have a speedy recovery without any further complications.
Get well soon.

Paul Henry

[Patrick]

Thank you for your expressions of support and concern. I am starting cardiac recovery physical therapy. So far my ability to walk is improving, and the facility does have a room where diaper changing can be done in private. I had to explain Tumarkins to the therapist, which promises to complicate recovery. Since arriving home, I have been wearing BetterDry, which seem satisfactory. The tabs have only been defective several times I cannot wait to to resume wearing washables. Again, thank you.

[justej]

Welcome back Patrick!!!
So glad to see you are up to posting and that PT is going well.
Betterdry seem to be a crapshoot these days in my opinion.

Again, so happy to hear everything went ok.

[Patrick]

One frustrating side effect of my cardiac surgery was that my hands became numb. This has made incontinence management difficult. My primary care physician explained that, in the procedure I had, the patient is spread on his back, arms and legs extended, wrists strapped down tightly, for the duration of the procedure, which in my case, lasted five hours. After my caregivers left, I became pretty much on my own; however, making my hands operate cloth diapers and safety pins and the tapes on disposables has been a real challenge. It has given me a new appreciation for folks whose disabilities involve more than incontinence.