Hello!
There has been so much going on I thought I would update everyone.
First I got an email from my doctor at Cleveland Clinic and they sent my case to Cedar Sinai in California to be reviewed. I was told through the grapevine that because my case was very complex, they were trying to see if someone else could handle it. The way I understand it is they are pursuing cases that they know will be a success and because my case is difficult they were seeing if another clinic would be a good fit for me at this time. Also, the clinic in California does more cases with high antibodies so this might be a good thing. They are still searching for a good match for me at Cleveland I am still be shopped around. At first I was pretty upset but now I am just letting God take control. If I am meant to be transplanted at Cleveland then I will be. Dewon and I are also looking into all possibilities and staying hopeful.
I also have been having some breathing problems lately. I have been to the emergency room a lot lately due to not being able to catch my breath. It has been very scary for me. The first time I was home with my siblings and friends came over to help but I just panicked. My lips were turning blue and Dewon wasn't there, which just made things worse. He really is my rock. Once they gave me some oxygen and my friend calmed me down things got better. The second time I was at home alone and I couldn't reach Dewon on the phone and finally called an ambulance. I felt so embarrassed. The EMT's were amazing though and got me some oxygen and talked me through it. It has really been freaking me out. Like I have said before I deal with chest pain and dizziness so much better than all of this. Not being able to breathe is one of the scariest things ever.
With all of this going on I have been pretty stressed and anxious. So I have been trying to stay busy as much as possible. I just feel like it's all too much at once and I am going to have a break down if I don't stay positive and active. So I am planning my birthday trip with Dewon to New York to see family and have our first real vacation together. The good news is I have had little actual heart problems. My siblings also came to visit and I was able to go to Six flags with them. That in it's self was a miracle. I was able to enjoy the day with them, and thank goodness I was approved for a wheelchair.
So that's it. Thanks for the continued support and prayers.
everyone waits for a miracle to happen in their life but I choose to make my own miracles with my health, family and life
Tuesday, July 29, 2014
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.
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.
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