Well friends, I am back in the hospital. Mom dropped me off at the front door of Hopkins on Friday, after a telemedicine appointment with my cardiologist, Dr. M. He felt like I needed to be admitted…why? Well, we have to back up a few weeks.

After the last heart attack in mid July, I noticed I was retaining a lot of fluid. An echo was done when the symptoms started, which confirmed a mild loss of function in my heart. The fluid retention symptoms continued so in mid August, my cardiologist decided to put me back on a diuretic daily, which turned into the great fluid balance race…too much diuretics and I was becoming dehydrated, too little diuretic and I was retaining several pounds of fluid in a few days. I was doing telemedicine appts every 1-3 days, just trying to find the right dosing and medication to help with fluid retention.

Around August 23/24th, we had to decrease the diuretic from my normal dose, to give my kidneys a break, but it caused me to gained 5 pounds in two days. I called it into my cardiologist, who referred me to his colleagues in the Heart Failure Bridge Clinic at Hopkins, where I was seen by a NP. Dr. M wanted me to be evaluated in person to determine if we could manage symptoms in the outpatient setting or if we needed to admit me into the Hospital. At that appointment they decided to try a few more medications/adjustments and have close followup via telemedicine. Unfortunately, we just couldn’t find the right balance, so I was scheduled on 8/31, Monday, with one of the physicians in the Bridge Clinic to discuss more advanced therapies. Yet again, we tried one last medication adjustment.

Frustratingly so, over the past two weeks, along with the fluid issue my angina/chest pain has been ramping up and so was my nausea. I had a followup telemedince appt this past Wednesday, with my PCP and she felt we were approaching the line for needing to be admitted. Why? I send her a weekly symptom, BP, weight, etc log and she wasn’t loving what she was seeing. We agreed to see if the new medication that the Heart Failure Bridge Clinic doctor had just started, two days prior would provide any benefit. But I also had to agree to go to the ER if my symptoms changed “not one inch, one centimeter, Kristin”.

Friday morning, I was walking the dogs when I had severe chest pain and nausea. I came home, sat down for a few minutes, ate breakfast and took my morning meds, only to get sick about 15 minutes later. It was also 10 minutes before I was supposed to get on zoom with my Hopkins cardiologist, so I waited until our appt to see what he thought. I knew when he signed on, he would be very concerned and be sending me to the ED in for a cardiac workup. His rule is if I can’t keep my medications down, it is an automatic admission to the hospital. So here we are back on the PCCU.

Why such a change? While we originally thought the damage to the heart was minimal after the heart attack in July, it is worse than we thought. My heart has stiffened, impacting its ability to relax and causing me to go into heart failure.

I have what is known as Heart Failure with Preserved Ejection Fraction, also known as HFpEF. Of course, I have the medical zebra diagnosis of HFpEF. It is the less common diagnosis to its cousin, Heart Failure with Reduced Ejection Fraction, which is what most people are familiar with: leg swelling, shortness of breath, fatigue, etc.

They believe my HFpEF has been getting progressively worse over the last year and the last MI helped make it abundantly clear over the last 6 weeks, how sick my little heart is. The way HFpEF was described to me was that the vessels aren’t able to engage because the heart is stiff and the heart isn’t relaxing all the way, which causes fluid to accumulate almost like a stagnant pond. The heart then cant meet the demand to send the body oxygen rich blood, which causes symptoms…How does it present? Nausea, vomiting, fatigue, chest pain, shortness of breath….The cardiologist from the HFpEF clinic believes my symptoms back in may were also HFpEF. She was pretty frustrated to learn this had all been going on since my last admission in May at Hopkins.

Over the past month and specifically this past week, my case was presented to a multi-disciplinary team of Hopkins doctors and care providers to determine how we can best move forward. When I am ready to share what that next step will be, I will. For now, the most I am ready to share is that part of the reason for admitting me to the hospital, was also so that an extensive amount of testing can be done. That way doctors can move forward with what they believe is the right next step. Given the complexity of it, Hopkins is the best choice.

For this admission, I am assigned to the Heart Failure team instead of the Gen Cards team on the unit. This team has been so diligent about managing symptoms and getting all of the necessary testing scheduled. I have to say, this admission has been so much less stressful due their willingness to reach out to/coordinate and consult with my doctors up here and following their guidance. They have also decided that on Wednesday, I will be going back to the Cath Lab for a Right Heart Cath. So I will be here until at least Wednesday and a bunch of additional testing will be completed over the next few days.

Mom and I text back and forth and facetime to check in and I will do my best to keep you guys posted here on the blog. I am on a lot of medications and frequent vital checks so sleep is very interrupted and thus napping is a big priority over here. With that in mind, I would ask you to respect the boundary of not texting, emailing or calling unless you have heard from me first. Mom doesn’t even check in until she knows I am awake and I text first.

Thank you for following along with us.