“What is normal?”by Angie
21 Feb 2026
11:02 am2
Today my mom goes home, and I have to take another step into whatever-normal-life-means. The moment she found out, she jumped on a plane and came. She hung out at the hospital, fed our cats, and once I was home she watched movies with me, got me playing games to get my brain active, cleaned my house, and drove me around to do errands and shopping. I know it was hard for my sisters to have her go away, so I am also grateful to them for supporting her in it.
The weird thing is, I’m kind of fine. At least, my deficits are indistinct and you probably won’t notice much different. Slight motor impairment on my left. A little difficulty typing and writing. The biggest difference is probably that finding words can be hard, so maybe I don’t talk quite as much. We’re not sure yet about me driving (the doctors didn’t give a specific time), but luckily that can wait. I have a follow-up with Dr. Lui, my cardiologist, on Monday and Jim wants to come with me to that anyway.
Every once in a while I have what they call “recrudescence.” It means that I have a recurrence of more distinct, problematic issues or symptoms. Yesterday, I suddenly thought that maybe I was walking funny. I couldn’t figure out why, or what exactly was wrong, or even for sure IF something was wrong. My leg sort of felt like when it’s gone to sleep – not the pins and needles, but the fact that it can’t hold you up quite right. Just as I was deciding that something was for sure wrong, it was gone. My leg felt totally normal. My walking felt totally normal. It was so strange. This recrudescence seems more significant when I’m tired. A few days ago, I was getting ready for bed and I sort of wound down and stopped and was staring at nothing. Jim asked what was the matter and I said I wasn’t sure what a normal person would do right then. I only vaguely remember it. Things like that happen.
But overall, I am fine. If my biggest challenge is that it took half an hour rather than 10 minutes to type this post, I can be very grateful for that. I am also grateful to have such such a wide and strong support network. You are all part of that, and your prayers, offers of help, and words of encouragement are a great comfort to us both. Thank you.
It’s a Rainy Day in Palo Altoby Jim
16 Feb 2026
12:02 pm1
On Saturday, one of the neurologists asked Angie to repeat back to her the phrase, “It’s a sunny day in Palo Alto.” It was a test to check for slurred speech and see the language processing centers are still working normally. I commented that it definitely wasn’t sunny, and he said, “Oh, yeah, well that phrase normally is accurate,” so he modified it and had her say it was a rainy day. She passed the test. Today is another rainy day in Palo Alto, and it’s really beautiful. Angie loves cloudy, rainy days, so she’s commented on how beautiful it is from our window many times today.
Well, none of the imaging was done yesterday, so they’re planning on doing it today. They have an echo, an MRI, and a CT scan they want to do and Angie is so special that they want to bring in all the teams to monitor her as they happen. The arrhythmia team doesn’t come in on the weekends (but apparently they come in on holidays), so we had to wait until today. The echo is planned for 12:30 and the MRI at 2:30. The CT scan probably can’t happen today, so they’ll keep us until tomorrow. (Update! The CT scan is done! After I wrote this paragraph transport showed up to take her away for the CT scan. The doctor from the congenital heart team came and said they put in the order first thing this morning to get the CT scan, which means we might get to go home tonight. Yay!)
This morning they did another pacer interrogation. Before the MRI they have to put her pacemaker into “safemode” but they will do that just before they start the procedure. It uses magnetic induction to communicate to the outside world (programming and reading for data), so understandably an MRI could potentially do bad things to a pacer. Obviously, this will be safe, but they will take all the necessary precautions.
They are doing the MRI so they can characterize the infarctions in her brain and see how old they are. With the CT scan of her head from Saturday, they don’t have the same resolution and it’s harder to see the age of the damage, but with the MRI, not only can the see them but they can tell how long they’ve been there. If they are all new from the procedure last week, it means the risk is lower that it’ll happen again spontaneously. If some are older, we may need to make some adjustments to her medication and take some other precautions. They don’t anticipate finding old ones, but they need to check just in case. They will scan her head to image her brain and her neck to image the vessels there.
Angie has some clots in her heart that have been there for a long time. A clot in the heart is called a thrombus (plural is thrombi). They formed because the anatomy of her heart has some areas or pockets where blood doesn’t flow as freely as most people, so a clot has formed. It isn’t necessarily dangerous so long as the clot stays where they are. This is why she’s been on blood thinning medication for years. The CT scan is looking for the thrombi in her heart to see if they have changed at all, if there are new ones, or if any are gone (dislodged, which would be the most worrisome).
The echo she’s getting is looking for the same thing as the CT scan. CT scans are x-rays (which are in the nanometer wavelength) and echoes are ultrasound (in the sub-millimeter wavelength). They do both because neither one has really great resolution, but together they help to see things a little better. X-rays are really good at looking at densities and ultrasound is really good at seeing function. X-ray is just a static image, but ultrasound can record movies, so they can see different things. Each team has a different preferred imaging method. From the echo they will also measure basic function and flow of her heart.
So, one down, two more to go. Echo is next, and the MRI should be done by 4 and that means there is a good chance we can come home tonight. Hopefully our next post will be from home letting you know the results of the tests. Thanks for tuning in.
Catheterization at Lucile Packardby Jim
10 Feb 2026
11:02 am4
Hello! It’s been a while and we have some catching up to do here, but first things first: Angie is going in for a routine catheterization today. We’re currently waiting to finish up with the nurse to get her all ready to go. We’re at the children’s hospital for the cath, which always makes it nice. Not that the adult hospital doesn’t treat you well, but the level of care and attention is just different at a children’s hospital.
Angie is scheduled for the second cath of the day, so it shouldn’t be much longer before she’s ready to go in. The doctors said there is a chance she’ll be staying overnight, but probably not. After you have a cath, they require that you lie flat for 4 hours. It’s kinda boring, but we can handle that. We should be done in time that we could come home after that, but if they want to observe her afterwards, we brought an overnight bag for Angie.
We’re hoping that the results are just “about the same” as last time about 16 months ago. If they are, we’ll be staying the course, if not, we’ll have to discuss some other options. Thanks for tuning in and for your support and prayers. We’ll post once more today if everything goes well after its all done. We’ll (hopefully) post an update about how things are going on the transplant list in a few days to catch you up how things have been in the last 12 months or so.
First Darzalex Infusionby Angie
17 Nov 2024
8:11 pm0
Yesterday, we spent five hours at the Stanford Infusion Center so I could receive my first Darzalex Faspro infusion. It is a targeted monoclonal antibody that they hope will manipulate my bone marrow to eliminate some of the problematic antibodies that make it hard for me to get a transplant match…I think. There was a lot of information to process. This is just a few steps past experimental for someone with my condition; it’s usually used for patients with multiple myeloma.
It’s actually a slow-push subcutaneous injection, meaning they put a sort of mini IV into my little belly folds and push the medicine slowly over about 5 minutes. Then I have to stay in the room to be observed; this first time they required 4 hours of observation, but I’ll be doing this every week and the future appointments will only need one hour of observation.
There are a lot of possible allergic reactions and side effects, both from the Darzalex itself and from the pre- and post-treatment medicines they have to give me, but luckily things went really well and we’re pretty confident that we can move forward with this. Really well with regards to how I tolerated the treatment; we won’t know for another month or more if it will make a difference for me. If it improves my chances of getting a match even a little, it should be worth it.
Transplant List Activated ✅by Angie
26 Oct 2024
1:10 pm4
Yesterday, it became official: I am now active on the organ list for a heart+liver transplant.
We just spent three weeks in Hawaii visiting the Carlsons. It was truly magical to have so much mental and emotional time to feel normal – three weeks in which all this transplant stuff just disappeared. It felt like living in a dream. But reality set in the day we arrived home when the transplant coordinator called to notify me that the cardiac team had just met and submitted their approval. That was last Friday; the liver team met on Wednesday with the same result. On Thursday, Jim and I both met with Dr. Lui (my cardiologist and main doctor in all this). It was an unexpectedly emotional conversation. I am so grateful to have Dr. Lui and all the amazing people at Stanford helping me through this process.
It’s unlikely that anything will change anytime soon. I technically have to be ready to take the call at any time, but I am going to be very, very difficult to match. There are some antibody-cancelling therapies they plan to try that may help a little. Still, we’re looking at months or even years waiting on the list, rather than weeks.
Sorry I haven’t kept up with posting the nitty gritty details of appointments and tests it has taken to get here, but there was just too much. Next up is multiple rounds of additional vaccines that I need to fortify my immune system response to disease before they give me a bunch of stuff to inhibit my immune response to foreign tissue.
Thank you for following along in this difficult journey ahead of us. We appreciate your continued support and love. As usual, we’ll continue posting here to keep you all informed as things develop.
A Day of Training & Testingby Angie
4 Sep 2024
4:09 pm1
Today was a long day at Stanford. Jim took off work to join me for trainings with the Clara (cardiac transplant coordinator), Tiffany (a transplant social worker), and Christina (a pre-transplant dietician). Everyone has been super kind and considerate. Last time we did this, I felt like I was at the bottom of a waterfall; this time around, I felt almost like I was interviewing for a job. They need to know that we are (as Clara charmingly put it:) “In it to win it” – meaning that we are emotionally and mentally prepared and are willing to be compliant in the recovery process and beyond. They also want us to know and accept the worst-case scenarios before going in. Since we did the evaluation five years ago, a lot of the information was already familiar, but there were a few surprises. My family will balk, but I was crestfallen to learn that post-transplant I will have to give up raw sushi – and Jim was even wearing his sushi socks today! Good thing I also love tempura rolls.
I took a “Frailty Test,” which sounds a lot fancier than it actually was. They checked my grip strength (26kg thank-you-very-much) and balance and tolerance of quickly standing and sitting over and over again. Then we went to the phlebotomy lab and had a whole bunch of blood drawn. I’m glad I was already done with the frailty test, because I felt a little woozy after that. But then we got some amazing Greek food that perked me right up.
The last several weeks have been full of paperwork, as well as routine care appointments to be sure I’m overall as healthy as possible: PCP physical, dental checkup, eye exam, mammogram, women’s health stuff, PFTs (perfusion tests to check out my lungs), ultrasound of my extremities, hep-b vaccine, abdominal CT scan…etc. Now we’re focusing on transplant-specific stuff. Last week, I met with my hepatologist and also one of the liver transplant surgeons; tomorrow, I meet with the cardiac transplant surgeon. This Friday I’m going to Lucile Packard (the children’s side of Stanford) for a pre-op before my catheterization there on September 16th.
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!