Hey y’all!

It’s been a long time since my last update. Life has been very busy, which is saying a lot since I’m still on lockdown thanks to a worldwide pandemic. #goodbyecovid. We don’t go anywhere besides the doctors so why is life so busy? Well let’s back up a little bit.

In addition to my chronic and daily migraines, About a month ago I started having some tummy troubles. Things were moving moving from each direction. I was trying everything I had to make it to a Botox appointment for my migraines, so at first I thought, okay…a stomach virus. I’m immune compromised..not surprising.

My team thought perhaps a stomach virus or c.diff returned. As I begged God, please God, no c.diff again, we ruled it out. However, because the stomach symptoms are COVID symptoms I had to get a Covid swab, per my transplant coordinator. You know how hard it is to find a Covid swab on a Saturday at 4pm. Driving around for 1.5 hours and 3 urgent cares later, I finally got swabbed! Thankfully it was negative.

So now what? Let’s just say I was calling into my transplant team every 1-2 days to report my bathroom habits and they kept saying “let’s watch it..let’s watch it”. Well, I had a terrible weekend a few weeks back and ended up in the hospital, getting fluids to rehydrate me while also trying not to put me into fluid overload (aka heart failure). Remember a few months back, my heart is still acclimating to my body and a little stiff and therefore very fluid sensitive. My body can’t overcome dehydration by itself anymore and cardiologists get a little itchy scratchy about dehydration because it can lead to abnormal rhythms, so hence I got stuck in the hospital. After waiting for 3 days to transfer to Hopkins, I cancelled the transfer. I’d rather be miserable with my bed and toilet thank you very much.

This has all continued on for weeks. I’ve either had to get labs or return to the ER for more fluids. This last time because my heart was beating irregularly and very fast. So finally, this week, we sent stool samples out. It’s 4 weeks later. To say, I’m madder than a hornet would be correct. My body feels tired and warn out and we still don’t know what’s going on.

The other night we drove up to Hopkins at midnight to get seen as I was not feeling well and the stomach issues were getting worse, only to wait 8 hours and never been seen. They were overwhelmed with Covid so I weighed the risk of waiting in a waiting room any longer, immune compromised, against my symptoms and went home.

While all this is going on, I’m also dealing with uncontrolled hypertension. As we like to say, transplant gets very territorial of their patients and doesn’t like anyone else messing with their patients meds. Well as I sit over here with really high BP, they aren’t getting anywhere. I’m about 30 seconds from emailing my other docs to get them to suggest something and getting transplant to think it was their idea. I’m pretty convincing on phone calls when I say “what do you think of starting…?”.

The other big thing right now is my blood sugars. We are trying to taper off my steroids by January 1. We previously tried and it failed so we have to do it gradually because I’ve been on them so long. They effect my sugar, so thanks to a new Endocrologist we’ve been trying to find the right insulin scale. I wear a continuous glucose monitor, which sends her my data in real time. Once a week she looks at it and we adjust the scale. This is in anticipation of switching me to an insulin pump in the near future. This is exciting because it will get my sugars in tighter range, which will help my triglycerides come down and in turn help my new heart.

I spend a lot of time on the phone with insurance, pharmacies, doctors offices, transplant team, labs, while also taking an online class this semester. All this has to fit in amongst late night ER visits, hospital stays, rest to recover from both and late nights not feeling well.

My team has always told me to “give it a year and you’ll feel your new normal”. They admitted last week it looks like it’s going to more like 18 months. I still have to do labs every 1-2 weeks, because things haven’t quite settled yet, but hopefully we will get there.

Do I feel better than before transplant? Absolutely yes.

Do we still have some kinks to work out? 100% yes!

Are we still on isolation? Yes, now even more so, because it’s flu season on top of Covid.

Our lives are completely different than pre-transplant. We both don’t get as much sleep, our heads are constantly asking the what if? question and we do a lot of coordinating of schedules.

They tell you the first year is the hardest and you’ll have hospital visits. They don’t tell you, you’ll deal with almost daily migraines and wake your mom up taking a hot shower or getting sick because those are the only things that help. They don’t tell you, you’ll need your mom to drive you to appointments because you won’t drive for so long, you lose all road confidence. They don’t tell you some days you’ll love your team and other days they literally make you scream! You’ll cry tears wishing for life pre transplant when the side effects are just too much, all while knowing in your head, without it, you wouldn’t be alive. You’ll lose friendships, because they just stop contacting you, because you aren’t able to come around. They never tell you, that your heart will break a million times over when it comes to a vaccine, because people you once trusted won’t get one, while for you it is a matter of life or death, and the more people vaccinated means I’m just a little bit safer. Do they not care? They won’t tell you that you will juggle more doctors than you can count and keeping everyone straight is a full time job. They won’t tell you about your donor so you find yourself wondering who they were or what they were like. No, they won’t tell you about your donor, but you’ll find yourself coming back to them on the light nights or the early mornings, with gratitude to have a heart still beating. They won’t tell you, you will find yourself holding your hand over your chest just to find a moments peace, feeling it’s still beating. Nope, they won’t tell you.

They’ll tell you that you will live, #becauseofjesusandadonor and because #hopewins.

Love, KG

P.S. Just a friendly reminder: your mask goes over your nose and mouth, 6 feet is 6 feet, not 1, 6. Wash your hands! And for all things holy, do not pull your mask off your face to sneeze or cough, that’s the point of the mask; to catch your germs!