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!

We Have A Plan

I have been waiting to give an update on the actual transplant list but there hasn't been any new developments, so I will list here what we know so far (spoiler alert: it's not much). 1) We haven't received any paperwork yet. We have heard just getting the paperwork/application can take one to six months. 2) When we do, apparently they will need character references. We don't know how many, but for those interested, Patrick will be conducting interviews and there will be an application packet due... Just kidding. But seriously, flex those muscles because we may be calling on some of you 🥰 3) We have been hearing that they always deny you the first time. I don't know if this means the second application will take another six months. When I know more I will put another update here. But we're almost guaranteed a denial the first time around. 4) Once approved, Patrick will be moving to Seattle. It's the only way to guarantee his spot on the list should a heart become available. Alaska is simply too far away to count on purchasing a ticket and flying out in the very short window allowed when a donor heart is waiting. If Patrick is still in AK they WILL give it to someone else. That's all we know, folks. I wish it wasn't so up in the air; so uncertain. I wish there was a guarantee Patrick will make it to the list. But we never know what the future holds for us. Until then, your prays and positive thoughts are appreciated!

More Of My Thoughts

* I wrote this yesterday but forgot to post it - Just more of my thoughts * We were writing down all of the "episodes" Patrick was experiencing. We thought this might help his doctors, but instead they gave him a communicator that sends daily reports to their system so they can check in and see how he's doing. Plus it turned out they were mostly instances where his ICD kicked in to correct abnormal rhythms rather than large defibrillator shocks to correct what Patrick calls "widow-makers." Both of us are struggling mentally with what's going on. Patrick says at times he feels like he could hike five miles through the snow. He feels healthy, like a normal 53 year old who is ready to enjoy the second half of his life. But he says it's upsetting that moments later that feeling can be taken away and he's reminded his heart is dying. There are times when I can forget what we are facing, and I organize a family craft night or we go shopping - yes, all six of us - and we play Marco Polo in Fred Meyer. Then there are other times where I wonder if I'll be able to afford the house when he's gone, or how I'll handle the girls crying and saying they miss their dad, or how to tell people kindly that no, I don't want to start dating. We have had so many conversations that a couple should never have to have, that it's disturbing, funny, and just plain sad. I tell Patrick I'll sell his favorite guns with OBO stickers on them. He says he'll come back to haunt me if I date anyone not worthy of me. Over the years he has built up some inventory so I can, "keep the shop running for a while." I don't want to think about what life will be like without him, but on the other hand I have to. I don't have a choice. I'm not entirely joking when I say with a laugh, "I'll have to rent the Carlson Center for his funeral," because those are worries I am having to have now, when he's sitting beside me, or having coffee with me, or while I watch him play with our kids. The truth is that I don't know how much time he has. God willing, he'll make it to the heart transplant and I'll have another twenty years with him, or more. We'll celebrate our 34th wedding anniversary in 2040. But if God wants a warrior and takes him before I'm ready, I need to be prepared. Patrick knows this. This morning we were talking about what will happen when he moves on to the other side. "I'm just trying to make light of the situation," he said. Then he listed several people I'm not allowed to date after he dies. 😆