As of 12:01 Friday morning, the team can start accepting calls for a new heart. Honestly, It’s an odd place to be..to know that out of someones great loss will come new life. There isn’t really a word to describe what I am feeling, other than grateful and in prayerful anticipation. A few people have asked some questions so I thought I would do tonights update in a longer blog post…

How does it work? When a donor’s heart becomes available the Cardiology transplant team will be called along with the cardiothoracic surgeon. The can say yes or no, based upon a variety of factors and should they say yes a Hopkins Cardiothoracic surgeon will go get the heart. The team then transports the heart back to Hopkins and final preparations for me for surgery begin (discontinuing blood thinners, fasting, final labs, etc. The quickest we could go to the OR is 4 hours (after blood thinners are stopped) or it can take several hours, even to the next day to go to the OR. At any time the team decides the heart is not a good fit, up until the point my heart is explanted, the team can decline the transplant. Afterwards, I will be moved to the Cardiovascular Surgical ICU and intubated and sedated for a few days. At the proper time, the team will start to wean sedation and meds. Then the hard work of recovery begins. They anticipate that I will be in the hospital for an additional 2-3 weeks after transplant.

Because this is my second time having a sternotomy, there is an increased risk of bleeding and likely scar tissue that the surgeon will have to work around. Please specifically pray for my safety and for the hands and wisdom of the surgeon.

What Happened? (the short version)

After the heart attacks in February and March, my heart and body was never the same. Even I knew I didn’t feel well but didn’t realize how sick I was. After the heart attack in July, my heart began to fail and once we arrived at Hopkins, the team saw just how sick my heart and body was. I was retaining fluid due to lack of blood flow perfusing to the kidneys and I was getting so sick, because of lack of blood flow to the gut. The longer I have been on the balloon pump, the team is seeing greater cardiac output and my gut and kidney are responding favorably and working properly. The nurses literally cheer for every #1/#2, because it means the body is getting the blood supply it needs and is able to function. Once the team realized how sick I was, the discussion turned from chest pain management to a very serious concern that if I was to go home, something catastrophic would happen.

My primary cardiologist was truly amazed and even commented to the team when he came by after the balloon pump was put in, that he has not seen me feel this good in years. While not an official vote on the transplant committee, his input was important to me, as he has walked through every twist and turn my case has taken, and our discussion that this was the next right step, ultimately helped me to accept transplant as a medical option. The teams have all commented that my case is extremely rare but they want to see me have the opportunity to not only survive but thrive, thus the transplant. The official diagnosis/criteria for transplant (ischemic cardiomypathy).

FAQs?

Are they accepted covid+ Hearts? No.

Can I receive a man or womans heart? Yes.

How long will we wait? Unknown, but the team does not anticipate very long.

How long is recovery? 2-3 weeks inpatient. Followed by close followups, right heart caths, labs, which start weekly then eventually get spaced out. Sternal Precautions for 3 months minimum.

Am I scared? We both have perfect peace about this and truthfully it is only because of the grace of God.

Am I nervous? Yes, but I also trust that God is with us.

Will it be hard? Probably one of the hardest things I will ever do in my life.

How do I feel about it? I’ve felt every emotion over the last two weeks and I have grieved the life that I thought I would have had at 32. But I also see the work of God in the past few months and weeks looking back.

Will this new heart have as many blockages? The answer is maybe yes, but hopefully no. They have already spoken to my primary cardiologist (i.e. Lipid specialist), about the post op regimen I will be on to protect the new heart. The hope is that with better plumbing (arteries), that we will not have the same issue.

How can you support us?

1. Prayers. Hands down the best.
2. There are several food restrictions due to the transplant, so we will be unable to accept any meals. However, gift cards to places like target, walmart, giant, instacart or amazon would be of tremendous help.
3. Please do not send gifts, flowers, etc to the hospital. Due to Covid precautions and ICU settings, they are unable to be placed in the room and it creates more work for the nurses.
4. Please check in and send messages, just know that it may not be responded to.
5. Continue to follow along & pray with and for us.

FYI on updates:

Once the team says yes, Mom obviously gets the first call from me. Then we will be letting family know and then eventually friends. I will likely post an update on facebook prior to surgery and then afterwards, Mom will be making the update on my facebook page until I am awake and able to do so.

Thank you for supporting, loving and praying for us. We are truly grateful for you standing with us in this season with prayerful anticipation.

Love, K.

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.