Doing the lifelong daily dance with Marfan Syndrome. Since it's a relatively unfamiliar disorder in the present day medical community, I am constant in experimenting and learning various methods/lifestyle changes to allow me to conduct as 'normal' of a life as possible. With Gods grace, I'm still here to share and learn.... (more)
Try to minimize and/or omit boxed or processed foods containing harmful chemicals including petroleum derivatives.
Constant surveillance of stress levels with a conscious effort to SIMPLIFY. Interjected with humor and an appreciating for the gift of life, it is apparent that there is a lot to that.... (more)
The array of manifestations of Marfans.
* Collasped arches in feet
* Pectum something or another (indented chest)
* Reoccurring hernia's
* Intolerance to excercise
Still, I don't have all the problematic symptoms that other "Marf's" have to deal with... (more)
Having Marfan Syndrome, a genetic mutation of the fibrillin gene which is responsible for basically all connective tissue integrity for both muscoskeletal and vascular. I can not recommend cataract surgery only on personal experience. My eye operated on has an astigmatism and loose skin covering. (also marfans) I'm in to my 6th week now and it's like looking through a plastic bag. Apparently my eye skin is so loose it is not allowing proper positioning of the new lens as well as creating a starry fog. End result, my vision is a tad better than it was for distance, close vision is worse. Corrective lens for my glasses (2nd one now) help very little so I am coping with walking, reading and basically doing everything I need my eyes for. No fun I tell you and I'm getting cranky from making the decision to chance it in the first place. I can't go back in time. If you have, or know someone with Marfan Syndrome please have a thorough discussion with your eye doctor prior to cataract surgery to make sure he/she is willing to research the extensive complications that may result. (retinal detachment is a biggie) If he/she is not learned with Marfans, reconsider who will do the surgery as there are a host of complications and side effects that are married to this disorder. The tilted operating table alone is a risk to heart/aneurysm/scoliosis issues by creating added pressure on the heart (low blood pressure folks may pass out) and a stretching of the spine which exasperates the scoliosis. Cataract surgery for most people is fairly routine and wonderful outcomes are to be had. However those of us that live with a variety of afflictions must take control over their health and do the research first! At very least, insist your doctor does or find another who will.
Having Marfan Syndrome, a genetic mutation of the fibrillin gene which is responsible for basically all connective tissue integrity for both muscoskeletal and vascular. I can not recommend cataract...... (more)
Since I'm typing that I have tried it, this is proof it works. I was cut and opened up like an oyster, thank goodness they didn't shuck me! Hat's off to Dr. Alexander Shepard at Henry Ford / Detroit. Because I am a 'Marf' (Marfan Syndrome) my body has an array of malformations and goofy factors that Dr. Shepard and his team had to work around. After 2 weeks of extensive testings the operation was a go.
12 - 14 hours in surgery, a graft was set within the bulk of my decending aorta. (approx 16"?)
Was out of it for 8 days and another 2 months before I was set free to go home.
Almost 1 1/2 years to heal up abd now it's 3 1/2 years later.
Upon hospital admission my descending aorta was approx. 7.4cm and now it's somewhere around 2.8cm on average. A combo of high blood pressure meds (cozaar & atenelol) for 2 years the just the cozaar/generic losartan of 1 pill a day along with an asperin was my only medication. This combo has helped Marf kids avoid the dance I and other Marfs dance.
Now trying Hawthorn syrup to keep the trend in my favor, and with Gods grace and mercy I'll be walking on this side of the dirt and appreciating this gift of Life.
A note to any Doctors - If your patient have any sort of scoliosis, listen to their complaints of not being able to lay flat on their backs. If surgury allows, give them necessary propping up and at least in Post Op DO NOT allow them to recoup flat on their backs if their surgery doesn't mandate that. Although it may be a good form of pain transference, it will create a painful and terrible obstacle in the healing process. My spine went from about 44º off kilter to 66º in less than 1 year to which it remains today. That was my worst memory of the AAA repair aside from the nurse in post op tied me down flat when I wrote to him my scoliosis was driving me crazy. (was on breathing machine and couldn't talk) I still want to clean that nurses clock.
Since I'm typing that I have tried it, this is proof it works. I was cut and opened up like an oyster, thank goodness they didn't shuck me! Hat's off to Dr. Alexander Shepard at Henry Ford /...... (more)
After recognizing that the bulk of pharmaceuticals are made from petrochemicals I am attempting to switch to nature made. Just started hawthorn syrup in hopes future aneurysms will be controlled. Now it's looking to the future to see if this helps or not.
After recognizing that the bulk of pharmaceuticals are made from petrochemicals I am attempting to switch to nature made. Just started hawthorn syrup in hopes future aneurysms will be controlled. Now...... (more)
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