Well folks, we hit the 100 days Post Op mark a few weeks ago and I can both hardly believe its been that long and at the same time it feels like yesterday. Over the last few weeks my mind has shifted from ‘the heart’ to ‘my heart’. While my donor will always be a part of me and I thank them/their family every day for this gift, it was important for my own healing to accept the heart as ‘my heart’.

My medical team, including Transplant, warned me/explained that the first 3 months would be hard…surgery recovery & that it would take a while for the body to adjust to all the new medications. Think you go in on 20+ meds and you come out of the hospital with 20+ meds, all different ones. Antivirals, antifungals, aspirin, anticoagulants, BP Meds, GI meds, insulin, steroids, anti rejection meds and so much more. Then all your specialists want to restart all of the meds they prescribed and the list keeps growing. We are currently sitting at 21 meds/daily + 9/as needed and two specialists want to re-start 2 more daily meds. My poor PCP has to be the one to get everyone’s notes, make sense of what everyone is suggesting and identify what has to be started, what can wait, what is more pressing.

Speaking of which, last time I wrote, my Blood Pressure (BP) was being stubborn and it still is. I had a telemedicine appt with my General Cardiologist on Friday and he didn’t like the BPs. Then on Wednesday, I had an appt with my PCP, who didn’t love them either. They both share the belief with my case that we go low and slow with any med changes for me and they are the two physicians I trust the most to make decisions on my case. The transplant team has had me calling in and speaking to one of the NPs everyday to monitor my BP and post covid recovery, but they are still learning my case.

I’ve learned while I am organized and in touch with my providers a lot out of necessity, sometimes its easier if they speak provider to provider. So, after a lot of back and forth between my PCP, my general cardiologist and the transplant team, I asked my Cardiologist to call my PCP to discuss the options. I was literally reporting the same information/vitals to 3 different providers, but no one wanted to be the one to make the decision on how to treat the hypertension. . Within 24 hours, my PCP and cardiologist had spoken and come up with a game plan, we are just waiting for Transplant to approve the medication.

I also had an appointment with endo this week to followup to Diabetes management and the good ol’ steroids still wrecking havoc on my blood sugars. We are still trying to get the afternoon sugar spike from the steroids under control, but we are making progress. He wants to move quickly to get the sugars under better control as high sugars can weaken my already compromised immune system. However, my PCP was not a huge fan of his plan and so she modified it after we spoke yesterday and basically said “slow way down, he’s going to bottom you out”. She also doesn’t want to start another medication, Jardiance, right now while I am on an antibiotic as it could make me more prone to an infection. While yes, it should be restarted, not right now.

Tomorrow, I have a telemedicine appt with my Pulmonologist at the request of my PCP to get his input on an asthma med that was stopped post transplant as well as follow-up to Covid as I had pneumonia.

I also had some labs redrawn this am as my tacrolimus level (anti-rejection med) came back low last week during my Right Heart Cath/Biopsy. We had to increase the dose, which means we also had to redraw labs this week. Thankfully, my favorite local phlebotomist was working today and was able to get them, even if it took two sticks.

Speaking of last weeks Cath/Biopsy, it showed zero rejection!!! This was huge. The team expressed inpatient that they really had no data about how Covid would impact the heart, but that any infection increased my risk of rejection. To say we were anxious for the results would be an understatement. Pathology took all day to read the samples so we didn’t get the call until late Friday and when we did, we were both filled with tears. A big victory. They were also happy to see that my labs looked the best they have post transplant. My kidney function went from its very worst during my Covid admission to the best we’ve seen it post transplant with my lipid panel was ‘perfect’ and all my other labs besides the tacro were right in range.

We also had a few smaller victories this week: My Cath showed my heart is functioning well enough without diuretics, that we got to stop lasix! Yay!! I also completed my last dose of 3 months of an anti-viral!! This med made me nauseous every night so I am so happy its done!

So if you lost track I had a therapy appointment, a right heart cath/biopsy, echo, General cardiology, Endocrinology, PCP, pulmonology, labs, and daily phone calls with the transplant NPs all within the last 10 days. Life right now is lots of telemedicine appointments, phone calls to offices, insurance companies and pharmacies. 100 days later after transplant and I’m learning so much of this life is management: symptoms, doctors, prescriptions, etc. We’ve gotten into our rhythm over here and every day we thank God for this gift, but it is not easy.

We keep getting the same questions so I thought I’d answer the top 10:

1. Do you know anything about your donor? No, Hopkins generally does not give out this information and I am not ready yet to reach out to the family, which is how I would learn more about my donor.
2. How would you contact the family? A professional organization works with your transplant center as a conduit for any communications/letters.
3. Can you get Covid again? Technically yes, they aren’t sure how long the antibodies or to what extent they provide immunity in transplant patients. We just continue to isolate and report any new symptoms.
4. Would you still test positive? Yes, likely. They believe for about the next 90 days, I would continue to test positive.
5. Will you get the vaccine? Yes, if the transplant team decides they would like their patients to receive the vaccine, then give it to me. I will roll up my sleeve now. But, I strongly believe our healthcare workers and older population should get the vaccine first.
6. Can we see you now that you’ve had covid? Sadly, no. We would have been asked to isolate for the first 12 months post transplant, covid or not. But we’d love to see you on zoom 🙂
7. What will life look like for you when you are off of isolation? Well, we will ask any potential visitors if they have been sick or around anyone sick, wash their hands when they arrive and take their temperature before coming. A fever is a no go.
8. Can we cook you a meal? While we are grateful for the offer, no, its simply just really complicated. I have several food allergies and many foods/spices have to be avoided due to medication interactions. We also have specific instructions on how food can be prepared, stored, thawed, cooked due to the high risk of food borne illnesses, etc. Mom is only one person, so it would be wasteful for her to receive a meal, but if you know its her favorite dish you make, Im sure she’d accept a plate on the porch. 🙂
9. What precautions do you have to take? So many, but the big ones are: wash your hands frequently, change toothbrushes and sheets anytime I’m sick, wipe down high touch areas often with disinfectant, isolate from others, no going inside anywhere except a doctors office and shower upon returning home, wipe down any contents of packages that are delivered and wash hands immediately after, cardboard remains outside for 2-3 days, any outside food gets transferred to a new dish- wash hands and reheat and of course wear a darn mask.
10. Hows your mama? Besides being a Bad***, she is doing well. She’s working from home and I think its done both of us good that she has been able to remain close by during these first several months post transplant. Her post-covid cough has gotten much better and her fatigue too. We’ve learned to take it slow on the days we need to and do things we enjoy on the good days. She has made huge sacrifices for my safety and for that I am forever grateful, so thank you to everyone who continues to remain in touch with her and check in on her too.

Well, thats it for now. Congrats on getting to the end.

-KG