Well I made it through another very busy week. I'm still experiencing the usual symptoms as well as my feet and ankle pain but I continue pushing through. The doctors finally prescribed me some pain medication for the pain and it's helping a little.
I finally received the results from my Cardiopulmonary stress test. I knew I didn't do well and that was confirmed. The provider explained that my heart is not acclimating to exercise and they are concerned about CAV or cardiac allograft vasculopathy which causes the blood vessels supplying blood to the heart muscle itself to become narrowed and eventually blocked. It is a result of your immune system affecting the transplanted heart. I will be having a Cardiac PET scan next month to view the vessels. During the test they will give me medication to induce stress on my heart to simulate exercise and asses the heart function. As you can imagine I'm extremely scared about this news and super anxious about the PET scan, especially the results.
Tuesday we went to Boston for a Neurology consult because of my feet and ankle pain. The providers are thinking that I have Tacrolimus induced neuropathy. The Neurologist wasn't sure. He wanted to do further evaluation with bloodwork and a nerve conduction study and an EMG or electromyography. This is scheduled for April 2nd. With a neurology follow up appointment in June.
Wednesday David took me to Cooley Dickinson for my blood work. They drew 10 vials. I had orders from 3 different providers and I had to be stuck 3 times to get all the blood. Honestly it was comical!!
Thursday my Aunt Kathleen brought me to my ultrasound. That went well and quick.
Today I don't have any appointments so I'm spending some much needed time with my sister.
It's so important to have a support system when you are going through health issues whether physical or emotional. I'm so thankful that I have a the most incredible support from friends and family. I love you all so much and I couldn't get through this without you!!
Each 💔 beat matters
KellyAnn
Keep on keeping on and remembering you have GREAT people in your corner♥️♥️♥️♥️
Yikes! Lots of stuff going on there! The good thing is that you have a team of the best doctors in the world ! I believe that they are doing their best to figure this out for you …. Except for that ass that you had … So prayers are needed as well love you KellyAnn ❤️