Personal Stories: Michael Kohler


I am a 54 year old dissection survivor such as yourself. I am also living proof that no good deed goes unpunished, I am a living organ donor (3-16-2001, kidney) who suffered a triple type A dissection on 9-21-2003. I am certain that the meds are what make us feel so tired and wasted after the least exertion although regurgitation in my aortic valve is a  definite contributor.
In my case I am just happy to be alive. The night it happened, I was in the shower when I felt a vertical burning pain down the length of my sternum. I thought it was a mild heart attack so I dried off, walked into the hall, called down to my wife to ask no questions and call the EMT's. I walked down stairs, took 2 ,aspirin and sat down to wait. Luckily the EMT's arrived within 5 minuets, immediately diagnosed it as a triple A, and transported me to Seton Hospital. The hospital was my wife's request and I thank God for it because it was possibly the only hospital with the experience required to save my life.
As it turned out I was the recipient of 5 miracles that night. The first was the EMT's rapid diagnosis, the second was my wife's request as to the hospital, third was that the doctor that was qualified to diagnosis a dissection just happened to be present, fourth, the right surgeon, who had performed 3 dissection surgeries that week was at a nearby hospital, and 5, there was an angel on my shoulder or the good Lord just did not want me at this time.
I was later informed by my surgeon that my odds of never making it to the hospital were 92%. When we took the EMT's out to dinner 6 months later they said that in their opinion I should have never made it to the hospital. I received 18 pints of blood during the surgery, which included 3 stents and  an aortic valve which was split along with the aorta.
I now suffer from a 50% reduction in renal function, really wacky blood pressure, significant regurgitation trough my aortic valve, frequent shortness of breath and fatigue. My doctor says to never pick up weights greater than 25 lbs. and take 3 naps a day. Since I am self employed (in a specialty stone wall business) and take care of a 100% disabled wife I found the doctors request interesting. In fact my wife was in a wheelchair and had been for 18 months when this when this occurred. In addition to this, we had just moved to a new home
and she had not met any of our new neighbors and didn't even have a house key yet!
As bad as this all seems things worked out very well, our next door neighbor came out when she heard the siren, and ended up spending 2 days with my wife at the hospital. She also saw that my wife had groceries until my wife, Wanda's, family arrived from out of state. Other neighbors also helped.
The amusing result of all my disaster is that I now enjoy people more than ever before and enjoy life greatly. However, I would like to look into the feasibility of replacing the aortic valve before it's to late. I understand that a leaky valve can lead to like threatening complications if not corrected.
By the way, my wife Wanda is a cancer survivor (bilateral nephrectomies from renal cell carcinoma 9/96) and was on dialysis for 4.5 years until she received one of my kidneys in 2003.
By the grace of God we are both survivors.
Michael Kohler


Update on his wife's condition:

I am sorry that it took so long to reply to your request to use my E-mail.  Certainly you may do so!  Your site has already helped me by answering several questions. We were in Houston for several days seeking a reason for my wife, Wanda's, inability to hold down food for the past 2 months.
Although her problem doesn't involve dissection it does involve problems with the medical community and diagnosis of medical conditions.  Wanda had been suffering both dysentery and vomiting for more than 2 months when her neurologist hospitalized her for tests. During her stay she was attended be 5 or 6 doctors, all specialists who, in the end, could find nothing wrong.  She was sent home after 7 days knowing  a lot about what was not wrong with her...and no clue to what was wrong.
Two weeks after her release, we asked her doctor to refer her to a gastroenterologist and that they look into her upper stomach. After a simple procedure lasting less than  15 minutes a ulcer was located that caused the problem.
The lesson that applies here, in my opinion, is that we must always think for ourselves and always maintain control over our own healthcare.
Again thanks for the is a Godsend.
P.S.: Are there any meetings or get together planed for dissection survivors ?


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