A Room With a Viewby Jim
15 Feb 2026
10:02 am1

The ER nurse wasn’t kidding, the view from the 6th floor rooms isn’t half bad. The couch bed isn’t particularly comfortable and the WiFi in the room is a bit lacking, but I really can’t complain. They’ve been taking very good care of us.
So, there’s lots to cover. The plan is to keep her here for a couple days to run additional tests. They want to do an MRI, but they may not be able to. Her pacemaker was placed only a few years ago, so it’s actually compatible, but her leads are older and some of them were placed before they used MRI compliant hardware, so that might be a deal breaker.
We got a visit from the stroke team this morning, and Dr. Schwartz told us about the situation. He says they’d like to get the MRI because it would give them clearer imaging which should give them a better idea of how old the infarctions in her brain are so they can conclude whether they were induced by her procedure on Tuesday or if they’re older (or newer). They can also see the extent of the damage better with an MRI. The infarctions are located in her cerebellum, which is why some of her dexterity seems to be diminished and sometimes her words are hard to find. I think the neurologist said there was another one higher up, but it was really tiny. The biggest ones are in the cerebellum. Dr. Schwartz said that recovery prognosis is very good and he believes she’ll eventually be able to make a full recovery. He also brought up her status on the transplant list. She may not be eligible for a short time, since recovering from a stroke can make you less capable to recover from transplant, or it may make the transplant recovery more complicated because we’re compounding recoveries. Her location on the list is low enough that it probably won’t really be a factor, but he brought it up.
If they can do the MRI, they will probably wait until tomorrow, when the regular A team can do it because it’ll be a little more complicated than your regular MRI (instead of the weekend team). Also, I think they want some of the regular congenital heart team to be involved, and they won’t be in until tomorrow. If they can’t do the MRI, they’ll do another CT scan to see if they can see any change from the one they did yesterday. We’re actually really blessed because Angie has a CT scan from a year ago when she accidentally dropped a bottle on her head while she was at Target. She was there alone, and she was trying to get something from a high shelf and it fell and hit her on the head. After it happened (it made a lot of noise), people came and when they saw the blood (head wounds bleed a lot), an off-duty EMT came up and insisted that she go to the hospital. Because of that, we have a baseline CT scan to compare against. At the time, I never would have thought a bottle wound to the head would have been a blessing to be grateful for, but today, I see things differently.
We’re expecting a visit from the Electro Physiologist (EP) to interrogate her pacemaker to see if there are any abnormal rhythms or anything that might correspond to the infarctions to see if there could be some other explanation besides the procedure from Tuesday. Also, if there is an MRI coming up, apparently they need to change some settings to put the pacer into MRI mode so it won’t be affected by any interference during the scan. Also, during her EKG today (and I presume yesterday as well), they noticed that her pacemaker is pacer her differently than usual. Normally, it reads her atrium and paces her ventricle, but not it is pacing both atrium and ventricle. It is doing what it is designed to do, but it is a recent change that needs to be investigated. The EP will look at that.
We’ll also be visited by an occupational or physical therapist to do another evaluation (Angie is getting pretty good at touching people’s fingers and her nose) and to give her some exercises to do after going home to help recover her dexterity and so she can get her old handwriting back.
They did an ultrasound of her heart to look for any abnormalities, but it was done bedside in the ER, so they want to do a full echo with a team who specialize in that to look for any anomalies. I don’t know if they’ll use the weekend team or wait until Monday for that one.
We’ll also be visited by the cardiology and congenital cardiology teams. (I feel like Jacob Marley telling Scrooge who will be visiting tonight.) We’ve already been visited by a resident from the regular cardiology team, but I think the others will come to talk to her about what it means from the cardiology perspective. I’ll take notes again and report all the news as it comes.
Thanks for tuning in and thank you for your love and concern for us through this. We really appreciate it. Please feel free to leave a comment for Angie on this post, I’ll show them to her. Also, if you aren’t already subscribed, you can get email notifications when there is news.
A Romantic Overnight Stay at the Most Expensive Resort in the Areaby Jim
14 Feb 2026
9:02 pm0
Well, what could be more fitting for Valentine’s Day than an overnight stay at the most expensive place we’ve ever been? Fortunately, we’re not paying. The service here has been very friendly. The food, well, it’s just okay. They gave us a room up to the 6th floor. We have a private bathroom and a nice flat panel TV. It also has an unlimited supply of oxygen from a port on the wall, so convenient! Amenities-wise, we can’t complain. There’s a couch bed for me, so I can stay with her.
They must not have gotten everything sorted out for the MRI tonight, so we’ll do it tomorrow. Angie’s never had one, but they assure us that her new pacemaker is compatible with MRIs. I think the one she had installed as a kid probably wasn’t, but now they are. The neurologist said that the MRI isn’t mandatory, but it would help to get some more precise images to see what’s going on.
Angie is in good spirits and according to the doctor, things shouldn’t get worse from here. The neurologist said that this type of thing is not uncommon after a surgery like she had earlier this week. They think something must have knocked loose a bunch of very small blood clots that made their way to her brain. We’re very lucky that they did only a little damage and we’re also very lucky that we caught it. With some effort, they think she can probably recover, but it may take time.
I’ll keep this blog posted with any new developments or news as it comes. Thanks for your thoughts, prayers, support, and love. It really means a lot to us.
We’re Backby Jim
14 Feb 2026
4:02 pm3
And we’re back in the hospital today. On our drive to our temple shift this morning, I asked Angie how she was doing and she said, “I feel like I have lost some brain cells.” Just last night I noted in my personal journal that something didn’t seem right, and when Angie responded in this way, I insisted that she call someone at the hospital. Over the last few days I had observed a few very small things, but in aggregate it was enough for me to notice and be a little concerned. So when she said what she did, I knew something was wrong. We got ahold of someone from the hospital and they told us we should come in to the emergency room here at Stanford.
We got here a few hours ago and they started with a CT scan. Comparing it to a previous scan, they saw some abnormalities and believe she had a mild stroke, probably induced by the catheterization she had on Tuesday. They are planning on taking her back for an MRI shortly. Her motor function is still good and strong, and she doesn’t have any slurred speech. She has some slight decrease in dexterity in her left hand, but it is minor. The most telling symptom we noticed was that yesterday she was trying to write a postcard and was struggling with some uncharacteristic mistakes and she felt her handwriting wasn’t as clean as it usually is.
They want to do a bunch more tests and make sure to rule out any other possible cause. Unfortunately, catheterizations always carry a risk like this, so it probably was what caused it. Fortunately, they seem to be optimistic that she may be able to recover and regain some or most of her lost skill, especially since her symptoms are so mild. The biggest thing now is to make sure there isn’t something else that might cause another stroke in the future.
I will post more when we know more. Thank you for your love and concern and prayers on our behalf.
All Doneby Jim
10 Feb 2026
8:02 pm0
Sorry for the late post. We’re home now and Angie is sleeping. This procedure made her REALLY sleepy. The procedure went well and the doctor said “her numbers look good,” which was what we were hoping for. We still need to hear from her main cardiologist, but I don’t think there are going to be any surprises.
The doctor also said he saw one of her collateral vessels had grown a bit so they coiled it off. I wasn’t sure exactly what that meant, but he went on to explain that sometimes blood vessels try to find their own way around an obstruction or path of resistance, but they can become places where blood gets stuck and doesn’t flow properly. They can coil them off using the catheter to prevent it from being a problem for her circulation.
Unfortunately, as she was waking up in recovery, she complained about some very strong shoulder pain. The nurse thought maybe it was due to positioning during the procedure, but as she started waking up more, it was clear that it was more than just a sore shoulder. They sent us up to the floor to a room while we waited for the rest of her 4 hours of lying flat. The nurse could see Angie was in a lot of pain, so she ordered something a little stronger. That helped a bit, but I think it made Angie really sleepy. We order her some dinner and she spent a few hours resting and then we came home.
When I told the doctor about the pain, he said that sometimes when they coil off a collateral it can cause referred pain elsewhere in the body, especially when it is close to the lung tissue. He said she’ll be in pain for a couple days, but that it should go away. They sent us home with some pain medication for a couple days to help her be comfortable.
Thanks for reading and thanks for your love and concern for us!
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.