I don’t really know where to begin with this update, but most of you have been with me through all of the challenges this past year with DH’s health. It’s actually shocking to his doctors that he’s still alive, but I’ve always said that only God knows when he’s ready for you.
Jerry is still on the Heart Transplant list, but is continuing to hang in there. Both of us are frustrated beyond belief with the various doctors. So here’s the latest.
On March 11th, Jerry had an appointment with the head of the Transplant Hospital. At the time, Dr. Copeland told Jerry that he could tell that he was going downhill rapidly and that he wanted Jerry to make an appointment with his cardiologist, Dr. Peek, for the following week. Dr. Copeland also told Jerry that he should plan to be in Tucson in the UMC Hospital (Transplant Hospital) the week of March 22nd. Dr. Copeland planned on doing an IV drip medication on Jerry and then implanting a Left Ventricle Assist Device (LVAD). We used to think of these as the “artificial hearts”.
To me that’s a big deal and I needed a lot more information. I did research on the internet and came up with a number of questions.
On March 19th, I flew to Phoenix to go with Jerry to his appoint with Dr. Peek. Dr. Peek told us that he couldn’t believe that Dr. Copeland wanted to do the IV drip considering the side effects of the drug which, in his opinion, are contra indicated for Jerry’s condition. Dr. Peek ran a printout of Jerry’s pacemaker which records a beat-by-beat history of Jerry’s heart, and the printout showed that Jerry hadn’t had any “episodes”, so Dr. Peek was very cautious about implanting an LVAD. He emailed Dr. Copeland and sent him copies of various tests including the pacemaker printout.
On March 22nd, we were expecting UMC to call with a specific date and time to be at the hospital and also to address the various questions that Dr. Peek raised. INSTEAD – UMC called and told us that Dr. Copeland had gone to France on vacation and would not be back until April 5th. An appointment was scheduled for Jerry on April 8th, and he was again told to bring his suitcase and be prepared to check into the hospital.
I emailed Jerry’s Transplant Coordinator (Sue) with a number of very general questions about the procedure and also asking for specific dates/plans as I need to coordinate taking FMLA to help with his recovery. She was very rude in her response and told me that she didn’t have any specific info and that she wasn’t going to discuss Jerry’s medical condition with me.
In the meantime, Jerry’s GP, Dr. Ned, has also gotten involved and is in agreement with Dr. Peek.
So we’ve been patiently waiting for April 8th to meet with Dr. Copeland to see what’s going to happen.
Yesterday Jerry received a call from UMC to go over his medications prior to his visit for today. Well, a couple of things happened during the call. First, they were very upset over one of the meds that Dr. Ned had recently prescribed. Second, Jerry told them that he hadn’t received any info regarding the data and questions from Dr. Peek. This was the 3rd time he had discussed this with UMC. They said that they didn’t recall receiving anything from Dr. Peek (however we were still in his office when he sent the email). Third, Jerry told them that he couldn’t just have the surgery done on the “spur of the moment” because he didn’t have any support in Tucson without me or his daughter making arrangements. At that point, the clerk told him that they would have to take him off of the Transplant List. He blew up and demanded to talk to her Supervisor. After talking to the Supervisor, his appointment for today was cancelled and rescheduled for April 21st.
Jerry’s BFF knows someone that has a LVAD which he has successfully had for 3 years. His surgery was done at Mayo in Scottsdale which would be much easier as Jerry has caretakers in Phoenix. So during all of the waiting for the last few weeks, Jerry called Mayo and got more info from one of their Coordinators than we have this entire past year from UMC.
So he is meeting with Mayo next week to discuss the possibility of their taking over his case. Dr. Peek says that he has never had luck working with Mayo, but at this point, we haven’t felt good about working with UMC.
Jerry is in tears and upset beyond belief and I feel helpless because I can’t seem to get any answers either. Also, all of these challenges which continue to upset DH, are extremely stressful and bad for his heart. Sometimes I think doctors just try to make things worse and don’t think about the patient at all.