A Few Updatesby Jim
6 Aug 2024
3:08 pm0
1: Angie met with the oncologist today for the final word on her biopsy results. The short answer: Benign! They are calling it a Myelolipoma, which is “a rare, benign tumor made up of mature adipose tissue and some hematopoietic elements” …i.e, a little blob of fat cells encompassing some bone-marrow-wanna-be cells that think they’re supposed to be making new blood. Our bodies are weird.
2: As many of you know, we have officially started a new transplant evaluation, so the months ahead are going to be packed with appointments. A few family members expressed an interest in following all the details of the process, but we don’t want to inundate anyone who just wants to stay abreast of major or emergent medical issues. Thus, we’re starting a new category in this blog: “Transplant Process“. If you want to read about all the doctor visits, trainings, meetings, tests, and procedures along the way, you can keep an eye on this category. Otherwise, stick with just the “Hospital Updates” entries.
3: We have also received requests from loved ones who want to visit us, especially once we are no longer allowed to travel. Whitney asked that we put together a calendar indicating when we (and our guest room) are available. If you want access to that calendar, let us know and we’ll send you a link.
Transplant Coordinatorsby Angie
6 Aug 2024
3:08 pm1
Transplant – especially a dual-organ transplant – requires coordination between over a dozen different specialists and departments. Good programs have coordinators that work with the patient to keep the whole process on track. Last week I had a long chat with Claire, my Cardiac Transplant Coordinator. We talked through what I can expect appointments-wise over the next few months. She referred me to Jess, the Cardiac Transplant Scheduler, to actually get everything on the books.
Today I had a delightful conversation with Heather, my designated Transplant Coordinator with Cigna, my health insurance. Honestly, I’ve been putting off returning her calls for almost two weeks because my past experience with insurance-assigned health coordinators, nurses, and advocates has been quite disappointing: I consistently know more than they do about my health issues, but they just plow through their set scripts anyway. I thought this would be one more unhelpful person trying to be helpful. I’m happy I was wrong. Heather called to talk me through my insurance coverage for this huge undertaking, and how it will evolve through the four “zones” of transplant: Evaluation (where I am now), on the list, in the hospital, and post-discharge recovery (Cigna has fancier names for them, but that’s the gist). She also talked through some of the resources and support programs that Cigna can offer if we struggle to meet the financial demands of transplant at any point along the road. In addition to lots of good information, she also asked very sensible questions and listened to my answers – so refreshing!
On Our Way Homeby Jim
3 Jul 2024
1:07 pm0
It’s standard procedure to make sure a patient is able to sit, then stand, then walk to the bathroom before they’re willing to discharge you. Well, I’m happy to report that Angie passed her sitting/standing/walking test with flying colors and they are letting us go home today! No overnight stay, yay! (This hotel is a little pricey for our taste, anyway.) We’ll get our discharge instructions and prescription and we should be home in a couple hours. We’ll probably hit some commuter traffic, but it shouldn’t be too bad. Thanks for following along today. We’ll have more news soon with results from the biopsy and other transplant news coming in the next few weeks. If you want to be notified, you can sign up for email notifications of new posts.
Successful Surgeryby Jim
3 Jul 2024
8:07 am1
The doctor just called and let me know that the surgery was successful and the new pacemaker has been installed. Angie is in recovery and I should be able to go back and see her in about 90 minutes. Mom and I are up on the roof garden enjoying a little fresh air while we wait. Mom brought a little puzzle she’s showing me, which is a fun distraction.
Pacemaker Replacementby Jim
3 Jul 2024
4:07 am0
Good morning! We’re here at the hospital bright and early for Angie’s second surgery in two weeks. The one good thing about having to report to the hospital at 5 AM is that there is no traffic, even heading into Silicon Valley. Today’s surgery is a little more involved than last time, but still shouldn’t be too bad. Her battery has been running low, so they wanted to replace her pacemaker. It usually lasts several years, and she’s had this one for a while, so it’s time. She’s 100% pacemaker dependent, so we can’t let the battery die. They’ve been monitoring it for a while to be sure she’s safe.
We haven’t received the results from the biopsy from last week yet, but I’ll post here when we do. They originally told her that she would need to stay overnight for observation even though this surgery today is usually a same-day surgery. Then at her pre-op appointment yesterday they said they might let her go home today if everything is looking good. Well, they asked her if she would prefer to stay at the hospital or go home instead. She pointed out that she always sleeps better when she doesn’t have an IV in her arm, so she’d prefer to go home. So, we’re hoping for a speedy recovery and a quick discharge today. If not, it should be early tomorrow at the latest.
Back Home and Recoveringby Jim
25 Jun 2024
1:06 pm2
The procedure went fine and we’re back home now. She’s on the couch and watching some All Creatures Great & Small. Should just be a couple days recovery. Angie has another surgery in a couple weeks, so we’ll be posting again soon. Thanks!
Quick Procedureby Jim
25 Jun 2024
5:06 am0
Angie is in for another biopsy today. It should be a relatively quick procedure. We had to arrive really early again today, leaving the house at 4:30 AM. Not long ago, I believe during a CT scan, they found a mass near her spine. Before proceeding with her transplant evaluation, her doctors wanted to biopsy the mass to make sure it is benign. So, here we are. They just took Angie back to get her IV, and I should get to see her before they start the procedure. I’ll post here again when we know more.