Patrick went to Seattle last week for a follow-up, for tests the team didn't do in March when he was admitted for signs of infection. He had a Dexa scan and his 13th heart cath/biopsy.
He has NO rejection! And they are decreasing his Tacrolimus, which is his major anti-rejection medicine. He takes four milligrams in the morning and four at night, so now they are decreasing his nighttime dose to 3.5mg. It isn't a huge development, but it's better than 1) needing to increase it, or 2) keeping the original dose. His numbers looked to be a smidge high which means his immune system could be repressed unsafely, so without personally talking to the team myself, this is what I can infer by their decision to decrease his dose.
And this is while he is still on 25% of his original dose of Micophenolate, his other anti-rejection medication. The team is happy with what they see.
His white blood cell count is 5.5, which is wonderful for him.
His kidney function looks good.
His bone density looks good.
Why can't they fix his sense of humor?! While at Six Flags in Georgia, on the way out I was trailing behind the family taking photos. He stopped a security guard at the exit and said, “Excuse me, security guard? This lady groped me.”
The security guard was a wise man. He replied, “How'd you get so lucky?”
It's not as sweet as it sounds. The guard's parting words were, "I can't get any of them to grope me."
Lord, help me.
Due to his unexpected infection in March and his continued low dose of Micophenolate, Patrick is on the schedule for another biopsy in four months. While this had not been in the original plan, I can see the wisdom behind it. I wouldn't be against it if they wanted him to live in a bubble. I don't want anything to happen to him.
While we know things can turn on a dime for transplant recipients we are enjoying each day together. This summer we have gone on nature walks, gone swimming several times at the lake, enjoyed a vacation out of state, worked on our yard and improving our home, and lived as normal a life as we can while Patrick continues what feels like recovering from the heart transplant.
Not much of an update, but we are happy with his progress.
I can't tell you how many stories I've heard from Facebook groups I'm in, that make me feel so blessed that his journey has developed the way it has. There are people suffering from joint replacements, amputations, recurrent infections and rejection, and piss-poor quality of life. We were always told a heart transplant was trading one illness for another, but Patrick's is turning out to be an illness for which we are both profoundly grateful.
We went on our first family vacation that wasn't an Alaskan road trip fishing excursion.
Patrick has been blessed with countless visits to our shop from people who are thankful to see that he is still alive.
He was able to retrieve our 5-year-old after Samuel's second day of school, when the bus arrived at our driveway.
I asked him if he wanted to watch a movie tonight, just the two of us.
He got into water fights at the lake with our kids, without fearing his heart would act up.
We ate at the local Chinese restaurant and he felt no effects from the massive amounts of sodium they pack into their food.
I have no complaints about what happens in our bedroom…
It's the big things, and it's the little things. It's all things, really, that we are thankful for.
It's watching him tell tourists who come into the shop asking for the code to the bathroom, “You have to hold the keypad between your fingers, lean down, and say into it, ‘Rubber chicken.’”
Patrick has an amazing poker face.
That's not to say I don't occasionally imagine my hands around his neck, but for anyone who has known Patrick for any length of time, I'm sure you wouldn't begrudge me a moment or two of weakness.
Live every day like it's your last. Don't go to bed angry. Hug those who are dear to you. Tell them you love them. These aren't just empty platitudes. I've said it before - tomorrow isn't guaranteed.
Just think of the alternatives - your family dying in an accident on the highway; cancer taking away a loved one in weeks; even something like losing your sight, or your mobility, or, God forbid, your dignity.
Life is so precious.
Thanks again to everyone for your support, well wishes, and prayers. I don't mean to get sappy, but when faced with the threat of losing the most important person in my life and then being blessed with getting him back in such good health, I can't help but wish everyone - including myself - could see the blessings in our lives every moment of every day.
Until next time…
