December 10th
We got to the hospital around 7:30 am. I went straight to get an EKG and then signed in for the Lab. After the short test I went over and my usual phlebotomist was there waiting for me. She is awesome at always finding my vein and gets the 14 tubes drawn before I even realize it. Although I think she wants my husband. She always asks about him... I am not sure how to feel about that. After that we went over to the admitting office to get the paper work down for my procedure. We then went over to the cafeteria to get breakfast. I technically am not suppose to eat but I started having chest pain so I ate a scoop of plain eggs and drank a little bit of orange juice with my morning medication and my pain pill. At this point I thought the food I had eaten would be out of my system before the procedure. They didn't have me scheduled until well after noon anyway. Before I could go back to see the doctor the transplant coordinator came to see me. She had some insurance papers for me to sign. She also let me know she had got a few more offers for hearts for me. I didn't really pay attention because I get tired of being told the "shoulda, coulda, woulda's that never happened". After checking my vitals we waited for Doctor Mountis. She came in shortly after and we spoke for a bit. She told me I had lost 6 pounds of fluid since the last time I had seen her. I think because I changed the way I eat "again" and mastered how to take the torsemide pills it has helped me keep the weight down. Then she said she wanted to know how I felt about everything and what I wanted to be different. She said she could tell I was unhappy with how the transplant team was running my case. So I was honest....
I have been with Cleveland for several years now. I have been waiting and waiting and waiting. I do everything they ask of me. To the point where I worry I will be kicked off the list if I screw up. I feel like I am still at the same place as when I started in 2010. Yes, I am a 1B status now but it makes no difference if I still have high antibodies. No matter what heart I get my body will fight the heart and the rejection rate is so high, lets face it I would die. It is incredibly frustrating to put a pause on your whole life to wait for something that hasn't come. I just want to be without pain, be able to move forward with my life and have a family. So yes being unhappy with current situation is an understatement. As far as what I want, I told her I want to feel as though I am a priority to Cleveland Clinic. I want them to come up with a plan and stick with it. I get tired of them telling me they will do something, admit me, keep me for days and then release me because they changed their minds. It takes a toll on me and my family. So this is what she had to say.....
She understood my feelings and concerns. There is a new drug that we had talked about with Doctor Lee. The medication is a medical trial. It has been used on cancer patients and has helped bring their antibodies down. So they are attempting to try it on heart patients as well to see if it will have the same effect on them. The medication has not been used at the Cleveland Clinic yet. It was studied by Doctor Starling and Doctor Sheesh who are cardiologist at CC and who are part of the transplant team. The Cedar Clinic in Los Angeles has used this drug and has a lot of success with it. The pharmacist for the transplant team came in and spoke with me about the medication. This is what I found out from her.
Bortezomib- used to treat multiple myeloma and lymphoma.
It is given by a doctor as a shot into a vein or into a fatty part of the skin. In my case it will be given right under the skin in my stomach or thigh area.
It is a weekly drug. I would go to the doctors and get the injection. Then they would test my blood and see if it is making a difference or not every 4th week.
Side effects are:
infection
a brain problem called PRES
nerve problems
bleeding easier
liver problems
loss of eyesight
stomach problems
seizures
heart failure
lung problems
Because of all these side effects they want me to start the medication in the hospital.
The pharmacist seemed most worried about the nerve problems, meaning loss of sensation in my hands, feet etc or a tingly feeling. Heart issues, which makes me think, does that mean my heart would get worse? Or am I safe since my heart is already bad? Infection because my immune system would be down. Liver and brain problems. But since I get my blood drawn weekly the liver thing does not worry me because we would know right away. The brain issue on the other hand makes me nervous. I am already forgetful...
I did however ask for the case studies. I want to look at all the information and make the best informed decision I can. So now it is just looking at all the information again. Speaking with my husband, family and friends and making a decision. Is this the best decision for me and my future. A lot to think about! This is not easy for me and very emotional. So I need all the support I can get.
Prayers are welcome and always help. I thank you all for being part of my journey. <3