Will
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Still think not getting vaccinated was a good choice?
Perhaps this could all have been avoided. -
ECMO requires major surgery.
My husband, who is the one registered to this site, was on the lung transplant list for 23 months. In a matter of days he went from having a mid-range LAS score to needing a transplant yesterday. When is CO2 levels became too high it was recommended that he be put on ECMO. It was an emergency situation, but we were assured this would buy him the time needed to get a transplant. Being on ECMO moves you to the top of the list. I got the call at work and by the time I got to the hospital, less than 20 minutes, he was on his way to surgery. He awoke from the ECMO procedure feeling great. Our spirit and hope had been renewed. It would just be a matter of days before transplant…or so we thought. We had spent 4 years waiting and hoping for this procedure. I return to the hospital the next day but my feeling great, upbeat husband is lying in the bed saying he just doesn’t feel well. I kept asking him to be more specific, thinking this would help the nurses. Finally his response was I feel like I’m dying. Within a matter of hours, his organs began shutting down. This procedure that was to be life saving, and giving him time for a transplant was now killing him. After a few days I was informed Bill was no longer a candidate for transplant, he was far to ill. With transplant no longer an option, I had to face the fact that the end had come.
My advice, before you agree to ECMO is to get all the facts. Do your research now, in case you have to make a quick decision. You read about Covid patients who were on ECMO for several months and are now doing great. That was not my experience. ECMO doesn’t have great percentages of good outcomes. My experience is that the procedure that was to be life-saving, was in fact life-ending. -
I can only speak for my family, but I did have genetic testing done, and it showed that I have “short” telomeres. There are only a few known genes identified with IPF, out of millions/billions…so they may find more down the road. I am guessing in my family we are susceptible to some sort of environmental trigger. My Fraternal Grandmother died of an “unknown” lung disease in the 1950’s. My dads brother died of IPF in the 1970’s. My dad died of IPF in 1988, his other brother had IPF when he died of a heart attach in the 1990’s. I was diagnosed with IPf in 2016 at the age of 58, and my sister was diagnosed with IPF in 2019. So yeah…it can run in the family. I am currently on the Lung Transplant list at Loyola Medical Center in Chicago….hoping for a new lease on life!