Cincinnati PH Phourm

Last night I had the opportunity to speak at the PH Phourm in Cincinnati. I was very impressed with the turnout. It was great and the doctor and nurse who spoke did a great job.

I was a bit nervous since this was my first time telling my story. It was a lot easier than I thought. I knew I was in a room full of people who understood what I was going through. I hope that I was able to help someone in some way. Having being dx almost 10 yrs ago gives people hope.

It wasnt until later in the evening that I had some drama. While I was at the meeting I was very hot and was a little short of breath. I thought that it was just cause I was a bit nervous about speaking. On the way home I was still really hot. We dropped my son and husband off at home then we headed to Walmart to do grocery shopping.

My daughter and I got to Walmart and thank goodness they had the electric carts available. I was riding through the store and noticed that I was starting to get a little dizzy. I thought what is going on. As I was walking out of the store I thought that I should check my pump to make sure it was working. I looked at it and it was not even on!!! I had done a medicine change before we left for the meeting. I was in a hurry cause I always double check my pump to make sure I have it on. I did that at 4pm and it was 11pm. I had been without my Remodulin for 7 hours.

I called the nurse at Accredo and talked to her. I came home and got ready for bed and put on my oxygen. I knew being without the drug for that time that I was going to have some side effects. Yes I was having a very bad headache. Then today the diarrhea started. I was not surprised. I did email my doctor and told her what had happened.

About a year and a half ago I had a crack in my line. I could not even sit up without almost passing out. Then I was getting some of the drug but not all. This time I was not getting anything at all and was doing pretty well. My SOB wasnt bad. My doc said that that is showing her that my heart is getting better. That is really good news for us. I do have an echo scheduled for the end of this month.

I have been losing weight again. I know that losing the weight is helping me a lot. I just thank God that he was watching over me during this time. I am still amazed that I was able to speak last night and not get so SOB or even pass out!! Praise God!!