Angie & Jim

Good News, We’re Headed Home!by Jim

All scans and imaging is now done and Angie is back in the room. She’s a little tired, but in good spirits. The first thing she told me was, “Why didn’t you warn me that MRIs are so loud?!” I remember thinking the same thing after mine.

Grace Oppenheim, the nurse practitioner from the neurology team that did the MRI this afternoon, came in to give us the news that the MRI looked good. They could see that the infarctions were not hemorrhagic, they are ischemic, which is good news. She didn’t see any evidence that they will convert to hemorrhagic and turn into a secondary bleed, which is always a risk. So that’s good to hear.

She also said that all the infarctions look about the same age and they are less than a week old. Apparently once they get over 30 days, they can’t tell how old they are, but all of the ones from the CT scan are new. They did say they saw a couple tiny old ones, but they were not really anything to be worried about. They’re pretty confident that the “shower of clots” happened at the same time and is probably from the catheterization. What they can’t tell is where they came from. It could have been the procedure or it could have come from the thrombi. We’ll never know. The good part is everything they saw in the MRI was what they expected. Another really good thing about this MRI is that now Angie has a baseline in case we need to do another MRI in the future.

The most important thing Grace said was that there will be no lasting deficits, no higher risk for bleeding in the future, no reason to delay her place on the transplant list, and no major change to medications. I asked about prognosis for recovery and she told us she believes Angie can expect to be back to normal in a month. She said from the neurology team’s perspective, she’s good to go home. We need cardiology’s green light before we’re discharged.

Only a few minutes after Grace left, Alison Leibold, nurse practitioner from the congenital cardiology team, stopped by with the official word, we’re going home! Yay! She gave us the rundown on the CT scan and echo. They did a CT scan of her body from neck to pelvis to take a closer look at her thrombi (clots) and see if there is anything else going on. They said her ventricular thrombus they’ve been watching is about the same as in 2024. It’s bigger than it was a few years ago, but not enough to be concerned. Angie’s target anticoagulation level is 2-2.5 (INR), but they’re thinking of putting it back to 2-3. She had some GI bleeds back in 2012, which is why they went to a lower INR, but they think now with the risk of stroke, they want to go back to the more typical 2-3. There is a risk of another GI bleed, but between that and a stroke, we’d take the GI bleed. However, she hasn’t had any problems with it since 2012, so they don’t think it’ll be an issue. Dr. Lui, Angie’s main cardiologist, will have the final say.

Alison also said that the CT scan also showed some minor clots that made their way into Angie’s kidneys. She said her kidney function still appears to be good, but they did catch some of the “shower” that happened last week. Alison also talked about the source of the infarctions, which they don’t know if it is from the occluded collaterals in her catheterization or if it is from her ventricular thrombus. Regardless, they want to make a small adjustment to her anticoagulation medication, but besides that, probably nothing else will change. She’ll be meeting with her primary cardiologist, Dr. Lui, next week instead of just the nurse practitioner like she was scheduled before all this happened. Alison also said the echo looked good: function was good and valves were good.

So, we’ve learned the hard way that you’re not going home until they take out the IV and order transport. Working on discharge papers doesn’t mean anything until after you are actually discharged. I will post this when we’re on our way out so we don’t have a false alarm. So if you’re reading this, we’re headed home.

Thank you so much for following along. We truly appreciate all your love and prayers and support during this time.

A Room With a Viewby Jim

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

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.

All Doneby Jim

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!

On Our Way Homeby Jim

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.