April 24th 2014 appointment

April 24th-

 I had my appointments with Doctor Mountis and regular follow up tests done. When I saw the doc she immediately noticed how bad I had gotten. I guess they didn't believe me when I told them I thought I was retaining too much and now having pain in my abdomen where my liver is located. She did a test and stated that my liver was enlarged and that she was going to put in for a CT and for me to see one of the liver specialist because it could be cardiac cirrhosis. We went back to the hotel after my appointment and called the family, this was the worse case situation and what we were fearing the whole time.. The plan was for me to come into the hospital the next day and have my swan cath and then get admitted from there.
April 25th-
Went to the cath lab, I was a little anxious but had some meds to help with that. A new doctor was doing the procedure so I felt super anxious that she would not know that I need someone to talk me through the procedure. To my surprise she had read my chart and walked me through the whole thing. It was the first time I felt comfortable and didn't want to punch the doctor when they stuck me in the neck. After, she told me I was retaining quit a bit and my pressures were high. So they got Dewon and off to the ICU I went.
We spent several days in the ICU where they gave me potassium, nipride and lasix through the cath line. Their goal was to get my pressures down and to get some of the fluid off my heart. In the mean time they scheduled my CT. The test was quick, but waiting for the results felt like years. In the mean time the transplant team came down and talk to us. They said there was some scaring on my liver but I had to wait for the specialist to come and give me the plan of attack and decide if I needed a biopsy. They also made us aware that if it was cardiac cirrhosis that would make me a double organ transplant and I would have to be reevaluated. I looked over at Dewon in tears and could see the anger in his eyes. See, the cause of my scared liver was all of  the fluid retention and we kept telling them I was getting worse. After the docs left we just sat there and had a good cry. This situation is already so stressful. adding more to the mix and even the possibility of the clinic not wanting to transplant me anymore just made our reality too much to bare.
Thank heavens the liver specialist came in later that night and told us there is some scaring but not enough for them to take any action right now. I would have to be followed by them though to make sure things didn't get worse. This news let us finally breathe again....
A few days later we went to a step down unit and was later discharged.

This appointment was one of the hardest for us. I think Dewon and I are both use to dealing with heart issues. Liver issues are a new thing, something we are not familiar with and something scary. I have to be really careful and try my best to keep the fluid retention down to a minimum. The more fluid retention means heart failure which equals more scaring and in turn means cardiac cirrhosis at some point. Heart transplant is already a lot to deal with I don't need to add to the stress.