Hello Friends,

Today is officially one month home and its been a big day in our house. We moved back upstairs this afternoon after spending the last month living in our basement area. Mom gets the gold star for sleeping on our guest bed for a month so that she was close by. To be back upstairs already, is huge progress.

We’ve also been getting in our steps everyday. My cardiologist suggested starting to wear my apple watch again to track steps and heart rate and to give Mom my old one so that we could compete for steps. Apparently, I have a competitive streak in me after all. Let’s just say, I may or may not have walked up and down the hallway the other night to get a few more steps after she went to bed 🙂 No shame in my game.

We added my Aunt yesterday and its pretty cool that she can be in Alabama but that we are connected and can see each others steps. We are going to try doing an actual competition next week if anyone wants to join or share steps, that has an apple watch.

If you missed facebook, last weeks biopsy showed mild rejection. It is the same as the week prior and it does not show a cellular rejection but rather an inflammatory response to the new heart. As medication doses are being adjusted and stabilized, the team is not worried. We ask that you would join us in prayer that it improves or remains the same. We of course are praying for improvement.

For those wondering, I will continue to receive weekly labs and Right Heart Caths every two weeks, until we do not see rejection. The next one is on the 18th.

At each cath, 4-5 biopsies are obtained directly from the heart itself. They also check the filling and output pressures from the heart. My pressures have continued to improve each time as my heart settles in to its new home. After the biopsies are obtained, they are taken directly to the lab via one of the Cath Lab nurses and pathologists review the samples. Preliminary results come back within about 24 hours and then I am called by the Transplant NPs with the results. Level 1 or no rejection, we do nothing. Anything above that would likely require us to return to Baltimore for an inpatient stay for treatment and a re-do Biopsy. So basically, we hold our breath for 24 hours after each cath and wait for the results. They are not worried about the level of rejection and we do not treat it at this level, so we remain hopeful, things will continue to improve. They assure us that most patients experience level 1 rejection at some point.

My Transplant Coordinator (NP) has been doing this for over 30 years and so I only get nervous when she gets nervous, which was only once when my white blood count was 1.5 (normal is above 10) a few weeks ago. Everything she instructs me to do gets run by my Transplant Cardiologist.

A lot of time right now is devoted to telemedicine appts, insurance companies, pharmacy calls and communicating with my home health nurse , transplant team/coordinator, my general cardiologist and my PCP. Any new symptom, change in symptoms or even if I just ‘feel off’ has to be called in to the transplant team as they monitor for rejection and infection, especially in these first several months. Here is just a glimpse into my call log..not including emails, mychart messages, home phone calls..

Over the weekend, my blood pressure was not stable due to the switch in medications last week and it was causing me to feel short of breath, headaches, fatigued and at times nauseous. There are certain blood pressure parameters that I have to page the on call NP for and we hit them Monday Morning. It was so much back and forth on the phone and now we are re-running labs this week to ensure there is no infection or anything else brewing and the *new* home health nurse did pay a visit today to do an eval. Unfortunately, two attempts at labs were unsuccessful today, so we are trying again Thursday. My veins are tired and there are about two good ones left. I kid you not, two good veins.

After all the back and forth, we increased the BP Med and will see what labs show. We have to give the med a few days, but are we are all hoping that I just needed a higher dose. This is the new reality. Any change is a workup.

So while, we spent some time over the last week dealing with a few hiccups, we did enjoy some time outside on the back deck with the pups this weekend just chatting about life and enjoying the weather (bless you starbucks giftcard senders!). We are both truly grateful for the forward progress I am making, how well recovery is going and how well I feel.

The transplant team warned us both that in the weeks/months ahead, we will ride a tidal wave of various emotions. I’d say we both are slowly starting to work our way through the “did that really just happen?” phase, we find ourselves in right now. But we are also truly grateful and at peace knowing that this was the right call. I’ve started working on a post that will show the true magnitude of how God was working over the last few months and hope to share in the next week. Because #hopewins #becauseofjesusandadonor

Are we finding our new routine? Yes.

Is it a lot of work? Yes.

Would I do it all over again. Yes, in a heartbeat 🙂 #punintended