A Change of Heart

New to This Mommy’s Heart? Check out my story from the beginning here – My PPCM Story

As soon as I woke up after having the heart transplant, I felt very fragile. Yes, I was recovering from having a total artificial heart removed from my body and replaced with a new heart but that wasn’t it. What made me feel the most fragile was whenever I would have any visitors to my room they would always have masks on. There was medical staff that I met post-transplant that I couldn’t pick out of a line-up because I only ever saw half their face.

For the most part, all transplant hospitals have their patients follow these types of rules. The reason behind these rules lies in the immunosuppression medication that I will be taking for the rest of my life. These medications keep our bodies from fighting off the newly transplanted organ. The bad thing is that if we get sick, it can get really bad, really fast. All of this is a balancing act for my doctors. Too little immunosuppressive medication and my body rejects my heart. Too much immunosuppressive medication and I get sick and possibly die from something as simple as a cold.

Germ Factories

If you have kids or are around them a decent amount, you know that they are little germ factories. Toddlers especially want to touch and lick everything plus they have no manners when it comes to coughing or sneezing. They will literally walk right up to you and sneeze directly in your face.

Feeling so delicate gave me anxiety about being around my kids. This is what led me to not see them for several days even after I woke up. I missed them terribly. Finally, after being awake from ECMO for four days, I went to go see them.

I met them in the lobby where they had been coming and hanging out most days. Everything was a little off with the encounter but it was a great first step towards getting them back in my life. I had fought for this life so I could be their mommy.

My infant was sleeping so she didn’t know what was going on but my toddler was a little standoffish. Reasonable because I was all masked up, wearing gloves and had tubes coming out of me. I was finally able to get him to come over and stand by me while I held his tablet.

I wanted to hold my babies and squeeze them and kiss them but I still felt so uncomfortable in my post-transplant state. So delicate.

Despite my discomfort, I kept pushing through and I went to see them in the lobby again the next day.

Awkward hands. Still not sure how to be comfortable outside of my hospital room.

The following day, PT came and took me for my first walk outside in over two months (the last time being when I was walking into Madigan when I was experiencing shortness of breath). My husband and son joined us for the walk. I so enjoyed breathing in the fresh air while getting to watch my toddler run around and get all of his wiggles out.

Right then something changed. I wasn’t thinking about whatever germs my kids could give me. At that moment I was only thinking about how much I loved my little babies, how much I loved being their mommy and knowing that the only place I wanted to be was as close to them as possible.

From then on they always had a place in my room.

Checking Boxes

Over the next week, a lot of what was going on was just checking things off lists so I could go home.

PT and OT signed off for my husband to start caring for me more. He could now take me on walks, help me to the bathroom and assist with showers. From that day on he either helped me shower or gave me a CHG bath every day in the hospital. He also packed my driveline sites twice a day. This is true love.

**Graphic Image Warning**

TAH Driveline Sites
Holes where my drivelines used to be. Twice a day these were packed until they slowly closed up. So painful.

I worked with PT and OT daily. The plan was for me to go to inpatient rehab and continue to build my strength after discharge.

Every day the nurses would quiz me on all of the new medication I would be taking. My husband picked up on everything quickly but it took me some time. I was leaving the hospital with 20 new medications equaling 57 pills a day. Most of these pills would eventually go away but several will be taken for life.

Pill Box
Post Heart Transplant Pill Box

Since I no longer had the total artificial heart, I was finally able to get an MRI to see what kind of stroke I’d had. Like I mentioned in my initial post about the stroke, at the start they had thought it was a TIA (transient ischemic attack a.k.a. mini-stroke), I had actually had a bilateral stroke. Since the cause of the stroke was most certainly due to the total artificial heart that I no longer had, this wasn’t considered something that should be an issue for me in the future.

I’m Coming Home

Although the plan had been for me to go to inpatient rehab, issues with the referral and insurance were slowing everything down. I was getting antsy to leave the hospital because I was progressing so well. I was given in-room independence, could walk with anyone in my family, walked multiple laps a day and could do stairs. With all of this, both OT and PT agreed that I was well enough to go home without the inpatient rehab. The plan would be for in-home PT to come and work with me soon after I got home. That was just fine with me as long as I was out of the hospital.

I was so scared to try the stairs

The only big things that happened the remainder of my hospital stay were another right heart cath/biopsy and sniff test. The right heart cath and biopsy showed good pressures and no rejection again 🙂

When the doctors were doing rounds, they noticed that air didn’t seem to be passing into my right lung as well as my left. A sniff test was ordered and completed my last day in the hospital.

The sniff test is a little hard to explain but pretty straightforward I guess. For the test, I had to stand on a platform with an upright board behind me that I rested against. They would then just ask me to sniff and while taking images of my diaphragm. The board behind me would move and whatever position it ended up in they would ask me to sniff again. Completely painless.

They told me that my left side was working great, but my right side was not moving well at all. They didn’t know if it was completely paralyzed or just weakened, but my nerve was damaged during one of my surgeries. It could take a year or longer for it to potentially remedy itself. Ultimately, unless it was causing me huge issues, it was doubtful they would do another sniff test in the future. Either it would get better or it wouldn’t.

Remember when everyone was wondering why I was breathing so fast after they took me off ECMO the second time? This would be th reason.

Show Me To The Exit

Finally, it was time. My husband got all of my medication from the pharmacy and packed the truck. The nurse removed my last line and they told me I could go. Before we left, my husband wheeled me around to the different floors I had been on while in the hospital. We took this time to say our goodbyes and thank everyone we saw for taking care of me.

Sometimes while laying in my hospital bed, it felt like this day would never come but just like that…

I was home.

2,474 thoughts on “A Change of Heart”

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