April 4th Appointment

So I am a little behind with posting about this appointment but here is goes.... Short Sweet and Simple :)

Wednesday April 3rd was like any other travel day for me. I woke up and Dewon and I got to the airport early in the morning. After a pretty easy flight we got to Cleveland. The only thing I remember about this flight was that I really noticed how much I was retaining. We got to the hotel and I rested. Room service and a movie later I was in bed for the night.

Thursday April 4th was suppose to be an easy day. Only a few appointments and we were suppose to be out of there by noon. After labs and an ekg we went to see Dr. Varma my doctor for my ICD. He is always easy and very brief. He let me know that everything looked good and that he would be keeping me on my medication (tikosyn). This medication keeps me from having irregular heart beats. There was some question about taking me off the tikosyn but he decided against it, 'why change something that we already know works' kind of decision. So after we got out of there we went to see Dr. Mountis. And if you follow my blog you know that she is my transplant doctor. She told me what I already knew, which was I was retaining a lot. She increased a medication and told me to call her and let her know if the slight change helped or not. After leaving her office I started to not feel good. I though I was just tired so we went straight back to the hotel so I could rest. After a few hours I told Dewon it was really hard for me to breathe and that I had some pain. So he ran me a hot bath and gave me some pain and anxiety medication hoping I would feel better after my bath. Well an hour later it was just getting worse. So Dewon put me in a wheel chair late at night and walked me to the ER. Well if you don't know the Cleveland Clinic lay out let me tell you the experience we had. All the doors were locked so we could not get back into the main hospital so we had to go around the whole building. Meanwhile it is freezing and poor Dewon is pushing me probably 3 blocks down to get to the ER. We got lost once and almost gave up several times. Not fun at all! So we get to the ER and I get right in to the back. They rush me through triage and then put me in a room. Well this is when it goes down hill. We sat in the ER for about an hour. They did not hook me up to any monitor or oxygen. We watched nurse after nurse pass by and then finally after asking, waving and pleading a doctor came in and took care of everything. I love Cleveland Clinic but they need to get the ER staff together. Anyways, I was instantly admitted and brought up to the heart unit. They started on IV drugs to get the fluid off. 40 of lasix at 1am in the morning is a pain in the rear. Especially when you are tired and worn out. They also gave me Dilaudid for the pain. After they gave me the medication I started dry heaving so they gave me something for nausea too. After 3 am I finally settled and fell asleep. It had been a long day.

Friday and Saturday April 5th & 6th Nothing exciting happened I had more pain which called for more dilaudid and nausea medication.  Plus more IV lasix to get the fluid off my lungs that I had retained. I pretty much stayed in the bed and was hooked up to the oxygen most of the day. I did have a few moments when I felt better but then I would get real tired and back to bed I went. Also I was sick most of the time so food was just not an option and probably made things worse for me.

Sunday April 7th I started to feel better. My weight was still not going down but I did get a good amount of fluid off my lungs. I got a visit from my coordinator who had some paper work for me to sign. Every year I have to re sign paper work so that my insurance can be billed for the transplant and all my end of life documents can be filled for the day I get the call for transplant. She also told Dewon and I that she had a few phone calls for a possible heart match to me but every time there was something that stopped me from getting it. When she told me I got sad. Either the donor was too old for me or because of my antibodies I could not receive the heart. In my mind I was perfectly find thinking there were no hearts for me yet but knowing they had calls and I could have had one some how broke me. I tell myself I don't want any heart. I want the perfect heart for me and that is why I have been waiting so long but in that instant I was angry and completely broken. I strive to be strong and optimistic and look for positives in my situation but I am human and sometimes I just can't be that. I am so glad I have my husband who held me like a baby while I cried that night, without him I don't know where I would be. I have been waiting since the doctors in Florida told me I would need a new heart for almost 5 years now but only 3 years at Cleveland. July of 2008, The day that changed everything for me.

Monday April 8th The docs came in and told me they would be releasing me. I hadn't had pain within the last 24 hours and I had lost a lot of fluid so they were happy with sending me home with some lab orders and medication tweaking  So sometime after noon they finally came around and discharged me. I think Dewon was more excited then I was because he practically ran back to the hotel with me in the wheel chair. We both climbed in bed and caught up on sleep. We flew out the next day and were back in Virginia on the 9th. Home Sweet Home!!