Planning For Washington

Patrick received a call from the University of Washington on Sunday while we were at church. The woman he spoke with said he has been scheduled for March 6th, but she gave no other information. On Monday we called Dr. Shah's office to tell him how far out the appointment was scheduled for, and we have not heard back from him. Yesterday we called the University. We asked that the cardiologist's office call us with some more information because all we had was a date. Today I received a call from a nurse who works for the cardiologist who would be performing Patrick's ablasion procedure. She called because she had received our request, but unfortunately was in the process of receiving Patrick's records and didn't have a lot she could tell us. The appointment for March 6 is the meeting and initial evaluation with the doctor, Dr. Akoum. She said they would discuss Patrick's health, his records, and the time frame and procedure(s) Dr. Akoum would recommend based on Patrick's records and charts. Basically March 6 will be fly-down, fly-back. Nothing will be happening after that appointment because they schedule procedures so far out - two months, to be exact. Unless it is determined that Patrick is in dire need of this procedure and needs to be referred to a different provider who can get him in earlier, Patrick is looking at early May to get the ablasion procedure done. I've said this time and time again - I don't know how I feel about this. So now you all know what we know ❤️ which isn't much. But we understand these things take time. Until then we will be strong and courageous!

Our Unique Life

I like to think we're a normal family, but some days I feel like we're anything but normal. This really hit home today. Patrick told me a couple days ago that there's a chance the team of doctors in Seattle will decide his heart isn't well enough to do the ablation procedure so they will skip to getting him on the heart transplant list. I hadn't thought of that, and it's scary. Here are some of my other thoughts today: I met Patrick when he was 38. I am now 35. We have been together for 15 years. You do the math. Our oldest child has autism and has largely shaped what type of family we are - basically we can laugh at anything. What other options are there? We had three beautiful girls, and seven years later decided to try for (and got!!) our beautiful baby boy. Our kitchen is downstairs and our living room is upstairs. (I know that's not really about us but hey, even our house is quirky). Today I asked Patrick if he had anything sentimental he wanted to pass along to his kids if he dies. We aren't sitting on huge retirement accounts and he doesn't have life insurance, so we agreed on what could be sold and what could be held for all of his kids to inherit (Pew-pew) We also created a list on my phone of songs he wants played in a photo montage at his celebration of life. I refuse to play AC/DC. I told him if he dies I'm getting another dog and Blue and the new dog can have Patrick's side of the bed. His reply was, "Well, I'm not dying, then." He hates dog hair. Maybe someday I'll rant and yell that we shouldn't have to have thoughts like these; that we shouldn't have to discuss this stuff for another twenty or thirty years. But for now it's okay. It is what it is. We have had a really great 15 years, and if that's all I get, that's all I get. But that celebration of life is going to be epic.

VT Ablation

Patrick called me yesterday after his appointment and said, “I’ve got bad news, worse news, and maybe some good news. Which one do you want first?” I told him none of it. He thought I was joking and told me anyway. The bad news was that the Tikosyn didn’t work as well as the cardiologist had hoped, and that the VT ablasion was back on the table. This time around Dr. Shah was recommending Patrick get it done. The worse news (according to Patrick) was that Dr. Shah was recommending he skip all Alaska heart centers and get the ablation done at the University of Washington in Seattle. The last thing Patrick wants to do is go to Seattle for anything. He doesn’t want to leave his family. But the good news, the “silver lining,” is that if he gets the ablation done at U-Dub (I heard a nurse call it that on the phone and thought it was funny), and if the ablation doesn’t work (which I’m assuming they will know right away), the University will “take responsibility” for him and get him on the transplant list. They will essentially just keep him there and do what needs to be done. First there is a new medication to try, which the cardiologist is calling a back-up med for the Tikosyn. If it works we will hold off on the procedure and continue working on getting the transplant packet. But if it doesn’t decrease the amount of VTs Patrick’s heart is having after two weeks, Dr. Shah says Patrick won’t last five years without a successful ablation procedure. A successful ablation doesn't take the heart transplant off the table. It just means the transplant would be postponed. Dr. Shah is confidant with the ablation and eventual heart transplant (maybe around age 60) that Patrick could see 80 years old because the rest of his body is so healthy. The doctor said he knows the Seattle doctors and wants to send Patrick there. He was disappointed the Tikosyn didn’t work as well as he had hoped. But there are other options - just ones we hadn’t anticipated pursuing. He told us once that he didn’t want to use ablation on Patrick because the risk of stroke and death was too high due to the multiple spots on Patrick's heart needing the procedure. But yesterday he said there is greater risk of death with a heart transplant. The difference is that the payoff with a transplant is miles above that of VT ablation. Dr. Shah does not sugar coat. We like that. We have about four weeks - two weeks to use the new medication and if it doesn’t work, two more weeks to get an appointment set up in Seattle and to make arrangements for that eventuality. This is where we are now in this journey. It’s scary but we’re doing this together - that whole “til death do you part” thing. We take it very seriously. When you’re given the opportunity to live with your best friend every days, it's not something you should take for granted. Thank you for your continued prayers and positive thoughts!