Thank you all so much, your prayers and love helped me through all of it. Well I went thru the cardiac Cath with flying colors and the 3 stents that I have are working well. The downside is, I am suddenly at 30% ejection fraction and now have a very weak heart. The Drs told me, "You are not a candidate for transplant with all the auto-immune things you have going on." and "A pacemaker will not help you, maybe a defibrillator would." "We have done all we can do, there is nothing more to be done." and that was it. My family freaked and so did I. I licked my wounds for a few days and howled at the moon lol. Then we decided to get a second opinion and I transferred to Shands in Gainesville.
They were fantastic. While they agreed with the assessment of my hearts weakness, they did say there were drugs that could help and I now have a Cardiac Failure Dr. They said something I found extremely interesting, "Your Mastocytosis is attacking your heart." We had to come to agreement that I need drugs that are contraindicated with Masto and I have risks on either side; Masto or Heart. Right now I have my Masto more controlled and my risk is critical with my heart, so I am taking the drugs.
I know we want to see our Mast Cell Disease in more positive terms but I think we need to realize that EVERYTHING we go through; i.e. illnesses and traumas will reflect our Masto too because Mast cells rush in to help (that is their job) and they are like a bad dinner guest who doesn't leave. We need to know this to help protect ourselves.
We need to realize that;
1)We will never be able to give blood.
2)We will never be a candidate for any transplant
3)We cannot be organ donors.
Treat yourself with love and take many laugh breaks. Again, thank you all so much for your love, it is irreplaceable
Ramona
xoxoxo