Hello hello hello. I know you are patiently awaiting the results of the transplant evaluation. There was a whole lot of information of course and I will do the best I can to summarize it all. The entire team that saw her will have a conference tomorrow and go over her case, make a decision, and let us know what they decided in regards to heart vs heart/lung transplant. I am going to make posts in the order/day that they happened so that this one post isn’t too much to read.
Day 1
!. Echocardiogram and EKG-According to the cardiologist it was the same as the one she had in Detroit. Nothing concerning, nothing that was critical or urgent for them to act on.
2. Infectious Disease- This doctor wanted to make sure all of Kendall’s vaccines were up to date. Also she was adamant on Kendall getting another pneumococcal vaccine and HPV vaccine. She said that when you have a transplant, blood transfusions etc..there is a type of cancer that can develop if Epstein-Barr virus develops. Of course there is very detailed screening from donors for viruses and anything that could cause the recipient to reject the new organ. So boosters from certain viruses are crucial to help prevent rejection from the new organ. We also talked about the importance of living our lives but also keeping in mind that any way we can decrease the possibility of Kendall catching anything from another person should be in place such as avoiding large crowds, wearing masks and good hand washing for at least the first year after transplant.
3. Transplant Coordinator Consult- This is my go to person, point of contact if I have any questions or need to reach one of the doctors. She’s the person that updates us and keeps us aware of what is going on.
4. Cardiology Transplant Consult- Met with the Transplant cardiologist Dr. Zinn. One of the reasons we chose Pittsburgh was because Dr. Zinn use to work at Children’s hospital in Detroit. He was there when Kendall was born up until she was 4 years old and he still keeps in contact with the current doctors she has now. Seeing a familiar face was reassuring and helped us build trust with the other members of the team. He received all of the records from Detroit and also did his own physical assessments. We discussed everything about what to expect prior to, during, immediately after transplant and future. (it’s a lot. Very overwhelming).
The entire team(everyone mentioned above + surgeon, pulmonologist, physcologist, physical medicine and rehab department) meets every Tuesday. So the plan is that they will meet tomorrow and discuss pros/cons of transplant and make a decision and let us know.
The thing is, we met all the specialist but they don’t let you know one way or another their opinion or decision until after they all get together to consult with each other. I can appreciate that because we want everyone to be on the same page and come up with the best course of action and treatment.
They meet with each other tomorrow but we may or may not hear from them until the end of the week or later if they want more testing done before they make a decision.
xoxoxoxoxoxoxoxoxo
Bear with me as I translate this past week to you. There is way more but I can’t tell it all but I am doing my best to give you the highlights.
Love to all of you
Cewanda
#BeKendallStrong
#TeamKendallT
#KendallsWholeHeart