Marfan Syndrome

[Patrick]

I understand that this is not totally on topic here; however, I do feel the need to express myself among friends.

The Marfan Syndrome which has caused my incontinence has attacked my heart. My surgeon told me that I was not a candidate for the cardiac surgery which I had hoped would be a silver bullet. He said that I would not survive that surgery, and would risk dying on the table. So, there is not much else that can be done. Although I'm not yet a hospice patient, my doctors are giving me palliative care rather than trying to treat or cure the situation. I can feel myself getting weaker by the day, and wonder just how many days are left for me.

I shall contribute as much as I can, for as long as I can. Here I feel that I am among friends, as nowhere else, and am grateful to all of you.

[wayne]

I am very sorry to read that Patrick! I've very much enjoyed reading your posts and encouragement here. It sounds hollow but I hope that you treat every new day as a gift, and continue as best as life permits.

[CityGardener]

You can count me as one of the "among friends". ALWAYS ALWAYS ALWAYS enjoy reading your contributions, and will look forward to them for as long as you keep making them.

[JDinVirginia]

Hang in there as long as you can Patrick.

--John

[Patrick]

Thank you. I shall work to avoid being a burden on this site; however, incontinence is not the worry it once was for me. Again, I deeply appreciate the friendships I have here.

[Patrick]

Update:

Ten days ago, my cardiologist's office called and told me that they did not want me any longer as a patient; they had done everything contemporary medical technology made available to them, and I was not to call and request another appointment. When I asked my primary care physician to pick up the slack, she agreed. Then, three days later, my cardiologist's office called and asked me to schedule an appointment. I guess my primary care physician did something to cause this reversal. As a side note, although incontinence is unrelated to cardiac issues, the act of washing and changing can make me breathless, needing to rest for thirty minutes.

[ILuvLA]

Dear Patrick. First, sorry I missed your original post. And while I do not have Marfan’s, a side of my family (cousins) do have it for the past 3 generations. So I have a very tiny glimpse of what it can mean.

I sure am sorry for what you are going through. It is not a road easily traveled. Please feel free to vent away on this forum and keep us updated. And praying for a miracle.

Blessings, ILuvLA

[Patrick]

I am grateful for all your expressions of concern and support. I regret that what follows may read like "The Perils of Pauline," but here goes.

My cardiologist contradicted his staff; he told me that there was always hope. He is familiar with a cardiac surgical team at a nearby university medical center, and he felt sure they would take me. I doubt that my medical insurance will approve, but I have not given up all hope. My cardiologist has more than an academic interest in my situation, because he lost his left lower leg to bone cancer years ago. I have the highest regard for him, and am curious about the calls that his staff made to me that indicated they wanted nothing more to do with my case. I guess somebody got chewed out.

Again, thanks for your support for this off-topic issue.