I’ve rewritten this update a few times as the past month has been one of the most frustrating and stressful times in my cardiac history for a lot of reasons, but namely because there are still a few unknowns…

How do we move forward? Where do I receive cardiac care moving forward? When do we move forward with the next intervention?

As some of you know, the last admission to Hopkins was very traumatic which ended with Hopkins Cardiology trying to argue that all of my health issues were psychological. Let me just pause her to say, this made my therapist of three years very angry and her exact response was “what the ____?”. What I didn’t share after that admission was that Hopkins accused me of not taking my medication, lying about getting sick, told me that I was just hypersensitive and tried to document that I was an uncooperative patient. All because I declined for them to retry medication changes that we have tried in the past only to have to discontinue them for various reasons (usually side-effects).  They had me meet with Pain Management and a Psychiatrist, who thankfully, strongly disagreed with Cardiology. Followup appointments with my cardiologist were tense and ended with both of us frustrated and in disagreement on how to move forward. I may have hit end on one of the calls, before we were completely done, because well I was done. Just a little aside here and a little known fact, except for those who really know me, I can be very stubborn and when I believe something, I will dig my heals in. It is a trait that I shared with my grandmother and when I’m being really stubborn my mother will call me Rose. I have been invoking my sweet grandmother’s example with doctors lately, because I am the greatest expert on my body and I believe something is off with my heart.

All the tension with cardiology, comes back to the vomiting that was the reason for my admission to Hopkins in May. First, let me just say that Cleveland Clinic Cardiology, my local interventional cardiologist, my PCP, pain management and psych are all in agreement that the vomiting is of cardiac origin. Any exertion (climbing the stairs, walking around the house, etc) causes severe nausea and/or vomiting. The doctors believe the nausea is an anginal equivalent or another way the body indicates the heart is stressed. This happened 2.5 years ago, when my bypass grafts went down for the first time, I vomited for 5 months before we convinced cardiology to look at the grafts in a Cath. They added multiple stents and the vomiting stopped immediately. This is in the back of our minds.

Hopkins cardiology is arguing that the vomiting is not cardiac in origin and that it is ‘not their problem’. But in the same sentence, they were arguing that if I missed one dose of my plavix or aspirin because it doesn’t stay down, that I had to go back inpatient. They also said that they would not place me on a cardiac unit if I did go inpatient. My PCP refused to send me in unless it was to a cardiac unit. As you can imagine, its real fun being the go between when my doctors disagree.

While the rest of my ‘home team’ agrees that not keeping every medication dose down is risky, they did not agree with Hopkins that it needed to be managed inpatient at the time. Over the past 6 weeks, we have thrown every nausea medication we could at it, pulled back doses of other medications that could possibly be causing nausea to no avail. While we have slowed it down from vomiting anything I ate, we still have not stopped the vomiting.

Every day, before I even get out of bed, I take a nausea medication, wait 30-60 minutes, eat, wait another hour, take my morning meds, take more nausea meds, try to eat in the window they have kicked in, but by 3pm everyday, the nausea is very severe and at some point during the day causes vomiting. The timeline for the nausea onset correlates to when my morning cardiac meds start to wear off and the demand on my heart is worse.

I’ve had several telemedicine appointments and even saw my PCP in her office two weeks ago so that she could do an exam, EKG and labs. My EKG didn’t look great, but pretty close to my ‘normal’. We also did a covid test just to make sure it wasn’t Covid. Good news, it was negative.

At the appt with my PCP, we had a really good conversation with her. This conversation was probably a long time coming. The reality is that Hopkins, while they have maximized my medication therapy, really does not have anything left to offer me beyond a standard Cath and I am trying to find a solution besides going back to the Cath Lab every 2-3 months for another stent. By time time I recover from one Cath, we are going back in. It is no quality of life and we aren’t fixing the problem. Getting two cardiologists to agree on the next step is not easy. Even the two cardiologists who reviewed my case at Cleveland Clinic disagreed on what the next step should be…Chronic Total Occlusion (CTO) cath or redo bypass.

When my local cardiologist got the Cleveland Clinic report and we spoke about it on June 3, he strongly disagreed with the CTO Cath. Namely, because having taken me to the Cath Lab multiple times, he believes within 6 months I would have another blockage and we would be back to square one. My PCP and I talked about this and agreed we should pursue trying to find someone to redo the bypass. She reached out to a cardiologist colleague at Medstar who gave her the name of a cardiac surgeon.

Some of you are probably asking…what about Cleveland? The reality is that Cleveland Clinic is 6 hours away and Medstar is just about an hour away so for long term care, it just makes more sense. My PCP brought up the idea of moving care to Medstar at my last appointment, but didn’t push it, giving mom and I the opportunity to  talk and think it through. With a case as complicated and unique as mine, we don’t just switch doctors willy nilly. Doctors are added and removed from my team with a lot of thought, consideration and after making sure they can be a team player. The convo with my PCP about looping in Medstar was two weeks ago…

Fast forward to last week…Tuesday night I had a severe episode of chest pain, vomiting and burping (my usual cardiac symptom when trouble is brewing…women have some weird symptoms). I have a home EKG device, Kardia 6L, so I took the EKG and emailed it to my PCP Wednesday for her to look at during our weekly telemedicine appointment that afternoon. I have seen enough of my EKGs to know that it didn’t look great. She agreed, but wanted me to repeat an EKG in her office Thursday to confirm it was accurate. Because I was not having active chest pain, the EKG Thursday looked more like the one she had taken two weeks ago.

She and I texted back and forth on Thursday, after she received the EKG from her office (it was her day off, but she was still in close communication with me to come up with a game plan). She had forwarned me that if it looked like the one from Tuesday, she was sending me to the ER.  We’ve also learned over the last 5 years, that doctors who review my EKGs but aren’t familiar with my case, tend to overreact and immediately send me to an ER, so it was just easier if she reviewed it.

After looking at the office EKG and determining I didn’t need to rush to an ER, she asked me if I had given any more thought to Medstar. Mom and I had decided that it was worth having them review my case. I reached out to Medstar Thursday around noon and by Friday afternoon, they had all my records from Hopkins, Cleveland & my local cardiologist at their office. The amount of doctors offices that I had to call to make that happen is probably a world record. I was also able to get an appointment with the interventional cardiologist at Medstar, that my PCP had reached out to during my appointment with her….

Back to where we were, after the EKG situation was settled last Thursday, I had reached out to my local cardiologists office, Dr. K, to get his notes sent to Medstar. The nurse was having a hard time finding the note where he originally suggested that we needed to consider the re-do bypass. Dr. K has over 30 years of experience as an interventional cardiologist and is very aggressive in the Cath Lab, so he does not take suggesting surgery lightly. Because the nurse couldn’t find the note and given the recent worsening of symptoms, he suggested speaking to Dr. K via telemedicine on Friday. He’s usually booked out 3 months at least, so an appointment the next day in of itself is a miracle.

This past Friday, he and I spoke for a good 20-30 minutes about the worsening of symptoms. He was concerned when I explained the very minimal level of exertion that induces severe symptoms and that it felt similar to when I’ve needed stents in the past. Such a change in symptoms requires some type of action on the part of the cardiologist, so we talked it through..do we try another medication change? Does he take me back to the cath lab immediately? Do we wait and see if symptoms improve? If he does another cath and it shows a small blockage does he stent it? If it’s a big blockage, does he touch it or pull me off the table and send me to Medstar for surgery? Does Covid complicate the timeline? Do we let Medstar do the Cath and if it indicates the next step is re-do bypass right now, we are already there with surgeons who actually do the surgery? Not every cardiac surgeon does re-do bypass procedures, so we have to keep that in mind. So many unknowns. Dr. K does not make the decision to take me back to the Cath Lab lightly, so for him to bring it up is a big deal.

We ultimately decided that I would retry a medication for chest pain, Ranexa, for a few days at the smallest dose. We had tried it 3 other times in the past 5 years, but it had to be discontinued due to a prolonged QT(c). Dr K instructed me that if it works, that I would need to come into the office this week to get a repeat EKG to recheck the QT(c) and increase the dose if it is still in normal range. Prolonged QT(c) can be very dangerous so they watch it closely, as I like to hover on the longer side of normal. He wanted to try Ranexa for two reasons: so he could say he had completely maximized medication therapy and in the hopes that Ranexa would bandaid the situation a little longer before needing a Cath. Given the continued worsening of symptoms, Dr. K and I were in agreement in the end, that while we were originally on a 3 month timeline to get established with Medstar, that my symptoms and my heart may force us to play our hand a lot sooner and probably in the next few weeks.

Also of importance was that while Hopkins was very dismissive that there could be an issue with the stents Dr. K had just placed in February, Dr. K disagreed. He said that this is the exact window of time where he would expect an issue like re-narrowing, especially in someone with a case like mine. A cath provides the surgeon with the up to the minute level of restenosis and a guide on how to move forward surgically, so no matter what we decide, surgery or just another Cath/stent, another Cath is around the corner.

This week, I will be heading into DC for an appointment with the interventional cardiologist from Medstar that my PCP had reached out to. The reality is that Dr. K is likely to retire sometime in the next couple years and that my case is beyond our local hospitals capabilities. Even if they work in tandem with my local team for now, adding someone from Medstar now so that they can become acquainted with my case is important in the long term. When the time comes to completely transition to them, it would already be  an established relationship.

Medstar offers a couple benefits: the expertise and advanced procedures of academic medical institutions and a more local option than Hopkins, while still having experts just as knowledgable of complicated cases.  Truthfully, we were connected to the Chief of Cardiology at Georgetown in the fall to review my case and he agreed that re-do bypass was an option or transplant down the road.

If we have a good experience at Medstar and they handle my case appropriately, it provides us with a local option. As you can imagine none of my team loves the fact that even on the best days on the beltway, Hopkins is at least 90 minutes away. Time is muscle in cardiology and therefore every minute counts. 90 minutes isn’t great when you are having a heart attack. Hopkins would still be a part of the team if they can play nicely in the sandbox with others. The reality is that I have a lipid disorder and I see one of the top lipid specialists in the country and am enrolled in a trial there, so they would still need to be part of my care.

Really, we don’t know how the next few weeks will play out. Will the medication work? Will I stop getting sick? When and where will we do the next Cath? Will it be another stent with the reality that we are going back in 3-6 months for another blockage? Will we have to wait for it get worse so that surgery is the next best option?

Why not just do the surgery now? The surgery is kind of like the CTO Cath in that you get the most benefit from it once the vein grafts are down again, because then you are restoring flow, rather than just creating another pathway. Its major surgery so they usually want to do it for more than one vessel. We might have to have the same approach we were going to have with Cleveland….be sick enough that another intervention is needed, but not sick enough that the blockage is to the point where it should be fixed immediately.

To sum up the current state of affairs with us girls:

• Mom is nailing it as my resident nurse, cooking up whatever sounds good to me. If you know her, then you know the kitchen is her least favorite room in the house. I’m really grateful she puts aside her lack of interest in cooking, just for me. She is also still working from home, as it looks like her company will continue to do so for the foreseeable future. I’m happy to report that we’ve survived without any roommate fights. We just sometimes go to our respective corners of the house for a little change of scenery besides each other’s faces. Kidding…maybe?
• I vomit at least once a day, am dealing with worsening chest pain and trying to figure out how we are going to move forward. I spend most of my day managing nausea/vomiting, medications and coordinating with various doctors offices. I have a few good hours in the morning and then the afternoon and evenings are the worst. I spend a lot of time reading, doing puzzles and watching every episode of Hometown on HGTV.
• The pups, Finley and Gracie, have gotten used to the fact that we are around all the time. They benefit from my ability to keep crackers down and come running at the sound of the crackers opening. They make us laugh and they keep me company. Gracie also notifies us each day at 5:15 that it is time for her dinner, and it might be our favorite part of the day. Finley continues to be perturbed that we want to use one of the blankets on the bed, which happens to be her favorite napping spot.
• COVID: We are on strict isolation except for doctor appointments. My team had ordered some non cardiac testing in the next few weeks, but have cancelled them due to the current resurge in cases of Covid-19. Once my doctor lifted the no outside food rule while the medical community learned more about how the virus spread, during the first few months, we should have never learned about UberEats, Grubhub or Instacart. We have also survived off of Walmart contact-free pickup and a few good people who have consistently reached out to pick things up for us.
• My doctors, this week, have extended our strict isolation at least until about Labor day, so I will be writing another post this week about practical ways that you can help us during this time. I hope it will also equip you to help others around you that are also under isolation, such as the immune comprised, the older population and those with underlying health conditions. As you return to/establish a new normal, don’t forget that some of us are still stuck at home.
• Basically, as per usual, things are very much left, right, up, down, now backwards, skip three times, twirl in a circle and see where you land with my health. As we know more, we will share how things are going. Please continue to pray for my doctors wisdom and our discernment of the next steps.