Washington Follow-Up Scheduled

Hello everyone! We haven't had much as far as an update to share with you so we've been pretty quiet. Patrick was still being shocked about every two weeks on the Tikosyn so he started a new medication called Mexiletine. The last time he spoke with his doctors he was told he hadn't been shocked in five weeks. So... good news...? It certainly sounds like good news. It's obvious that Patrick has the emotional energy of a squirrel on Redbull. His physical energy levels are less obvious in their decline, but they are quite a bit lower than what they should be for a 53-year-old man. This is all because of his heart function. A doctor who is NOT a cardiologist but who used to work with heart transplant patients told him that not being shocked in five weeks was a good thing. This doctor told him not to be surprised if the team in Washington want to put off the VT ablasion, and also the transplant. Basically, if this team thinks Patrick can eek out a few more years with this heart they will opt out of any major intervention. Why voluntarily perform a heart transplant, which is an extremely high risk surgery, on someone who can limp along with the heart he already has, possibly for several more years? Risk death, or live with a poor quality of life? The choice seems pretty clear. I guess I haven't updated because I didn't want to. I know how Patrick feels about all this. Lucky for you guys, the more verbose of this couple is the one holding down the fort on this little blog of ours. It's hard to go from, "His heart is dying; let's get this heart transplant ASAP," to, "Meh. He's doing okay." Patrick is a flip flopper and a half, and now his doctors are doing it, too; pulling one over on us - or at least that's how it feels to me sometimes. My brain can't process the changes, and my heart can't take the emotional bombardments inflicted with every check up. He flies down to Seattle on Thursday night and flies back Friday night after his appointment. And before anyone asks - No, he doesn't need a ride. We have all of that figured out (but we appreciate the offers!) I don't know how long after this appointment it will take to get results. We don't even really know what all is going to happen. We heard it was a meeting, and then we heard they are going to do some sort of "mapping" of his heart, and then we heard this will be a full-on evaluation for his heart transplant candidacy. So again, now you know as much as we do! I will update again probably this weekend, even if we don't have any results. I'm sure Patrick will have some experiences to share and some funny stories to tell. Let's hope he doesn't pretend to flat-line so the team of doctors finds him collapsed in a chair, eyes open and mouth wide. He has done that to so many ICD techs at FMH that he has had a couple walk in and ignore the fact that he's laying there, and they just go on to introduce themselves and inform him they fell for it once... I'm not sure U-Dub is ready for Patrick... ❤️😍🤣 ETA: Oh! I forgot to tell you he had been having angina after first starting the Mexiletine. He was told this is actually Forced Angina, a side effect of the medication. The medication actually gives him angina. But recently he has been having the real thing. Today we went for a walk at the Big Dipper and he had angina while walking. But other than that, no new symptoms or anything else to worry about ❤️

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.