June- Quick visit, I saw the dentist who had to check and make sure I had no infections. Gyno appointment for annual check and also to make sure I have no infections or disease. Both appointments where quick and I am happy to say I am disease and infection free, yay me! Last was the appointment with Doctor Mountis. It was also quick, she said I was retaining still and increased my my toresimide dose. We went home the next day.. Sweet and simple. Just the way we like it.
July- I seen Doctor Lee this visit because Doctor Mountis was out having a baby. He was a bit concerned with how low my energy was and how bad I was feeling. So he scheduled me for a heart cath for that afternoon. The doctor who was doing the procedure did not want to give me any anxiety medication, even though Dewon and I both told him I would be a mess in the cath lab without it. So we get to the cath lab and I started to panic, like we said, and he finally decided to give me some iv medication. It was still a disaster because the resident who was actually doing the cath didn't know what he was doing. He got the cath wire stuck on my pacemaker wires inside my chest. Which caused my heart to race so I was panicking. Then he had to place a second tube through my neck because he got the other one stuck. So of course I was freaking out and crying. I yelled at the guy too, I just don't think he should be doing my procedure if he does not know what to do correctly. So they then tell me my pressures are really high so they will be admitting me. By this time I was hysterical because the resident was trying to close and twist off the cath and couldn't do it so the doctor had to come do it. It was not a good experience! We went up to the ICU that night. I don't really remember much about that night, the sedation kicked in and I slept all night.
The next morning we woke to the doctors checking my pressures. They said they were amazed because my pressures had went back down to normal range for me. They chalked it up to anxiety that caused my pressures to rise. So they said the next day they would take the cath out and send me down to a step down unit. They also gave me a couple of doses of iv lasix. So the night consisted of a lot of potty brakes and Yahtzee. The next morning the nurse took the cath out and I went to the unit down stairs. We got to walk around finally so Dewon took me to the rooftop and to the gift shop. I get antsy when I have to be in bed for days. It stinks that you can not be out of bed for more than thirty minutes a day with the cath in. After that we just sat around until the docs came in that evening. They spoke with me about discharge in the morning and went over medication. The coordinator came in too and told me the same story as always, They have had calls for hearts for me but they are not good matches for me. It's always that they are too old, too big of a donor or that my antibodies keep me from getting them. It's usually because of the antibodies and that I would reject the heart. I now just get frustrated when they tell me this. It is heart braking and I have been waiting for so long :(. The next morning I was discharged and we went home....
August- This visit was a little different. My brother n law BJ went with me. Dewon was in school so I had went home for the few months he was gone. It was a lot of fun though.. He keeps me laughing and is so much like myself. We seen Doctor Lee again. Dr. Mountis was still on leave. He did an exam and then we had a serious talk about my future. I am normally so nervous and I make sure I do everything they say because I fear I will be dropped and then no one will want to transplant me. Plus I know without transplant I have no future just a death sentence. But something came over me and I told him exactly how I felt. I have been waiting for a transplant for five years at two different clinic. Three of the years with them and I have not progressed besides moving from a 2 status to a 1B. Although I am happy about this it does not change the fact that I am still not much closer to a heart. Because of my antibodies my heart will reject 96% of the new hearts. This is a reality I don't share much and try to stay optimistic about. The reality is its a one in a million chance they will actually find me a good enough match without addressing the antibody problem. Dr. Lee understood this and my frustration. With tears in my eyes I told him I know I have to get worse before things will get better but I also don't want my husband to come home to a dead wife either. So he said he would bring up my concerns with the board and call me within the week. I felt like someone finally understood and was trying to help instead of just saying what I wanted to hear.
Doctor Lee did call me. He stated that the board did not find it necessary to address the antibodies right now. They wanted to wait for Doctor Mountis to get back and reevaluate my case. He sounded defeated, I could tell he wanted to get me in and start.....something........
My appointment for September was canceled. Doctor Mountis had a family emergency so I was rescheduled for when she returns. No date has been set yet. However the coordinator reassured me that we would be meeting with Mountis and one of the heads of the board, Dr Stearling, to discuss my case.
There is a new medication that is out that will help decrease the antibodies that is also less invasive. I hope to learn more about this at the next appointment. We shall see.......