Zayne's Heart

It has been a while since the last post. No news is good news. Zayne recovery has been going really well. She is so much stronger and her heart is keeping her active and running around. Besides colds that last a while (she still has higher immunosuppression levels).

Milestones since her two month heart anniversary:

• Seven month new heart anniversary
• Nine year original heart anniversary
• Turned 14 year old
• Started 8th grade
• Dropped a bunch of meds to only 3 (it will stay at 3)

Zayne finally got permission to go to an outdoor pool. The day was freezing and I was wearing a fleece jacket and sitting out of the rain. The lifeguards were wearing hoodies, and Zayne was the only kid in the pool. We’ll go back on a warmer day (during the week) as soon as she is allowed. Yesterday, Zayne had an urgent heart cath to check for possible rejection. She had dropped a bunch of meds (5 of them), but we are adding two back. She will be on a very low dose steroid until she can start on a new (new to Zayne) immunosuppression drug in two months. Since the dose is low, she doesn’t need the gross mouth wash to prevent thrush, but she will take Pepcid to make sure she doesn’t get stomach upset. Depending on results that will come in next week, her next cath will be in 1 or 2 months.

Zayne looking smug: Right side heart cath (vein entry) are pretty quick these days. For the first time, Zayne opted out of pre-medicating, so she was fully awake until the laughing gas knocked her out. The cath is going through her neck which avoids the hated two hours of laying flat on her back. Since she wasn’t intubated and had less anesthesia, recovery was much quicker (Friday’s heart cath was only 7.5 hrs out of the day).

HopeKids sent Zayne to Casa Bonita to celebrate her new heart. She was thrilled and had a fantastic time watching the cliff divers, playing in the arcade, and enjoying all the restaurant has to offer. Masks were worn when there were crowds.

Riley, the cat, who can’t get a treat out of the cat treat container, turned on the bedroom touch lamp a few times around 4 am. I finally killed the flying insect that had him interested and he finally left the light alone. I could have unplugged the light, but that was more effort than just touching the lamp.

Five weeks ago, I would not have expected to be walking about Golden. Zayne has two modes: fast and stopped.  We walked up to Mother Cabrini’s Shrine in 11 minutes. A few months ago, it took her an hour to get to the top. She is starting to leave me in the dust, except that she is getting stitches that is forcing her to rest. Against my advice, she drank from the spring.

Tomorrow will be the start of the real cardiac rehab, but I’m not allowed to watch. Last week was evaluation. It is a good thing we are walking a bunch. Zayne is very frustrated, because she wants to climb things, swim, ride her scooter, and ride her new bike (which still needs to be purchased). She has outgrown her last bike that I purchased during her rejection episode 4 yrs ago. We can’t go shopping since she isn’t allowed to ride, yet.

We checked out the baby buffalo (and the large adults) at Denver’s Buffalo Herd. No one was close to the fence, but the calves are pretty cute. We went to a stocked private pond for some trout fishing. Zayne pulled in one, and I got two of them. I didn’t feel the need to hold the trout (I didn’t have my nitrile gloves with me), so I let the guide release the fish. Now, I recall why I used to put my rod down and run around to explore. Sometimes, I was lucky and came back to a fish on the line. I just don’t have the patience, and neither does Zayne.

We are few days late for the one month heartiversary, but close enough. Zayne is doing amazing and slowly putting on weight. She wanted to bake a cake to commemorate this occasion – she made the cake all by herself (following the directions on the box).

Cath results are good – her pressures are great. When I saw the pathology results come back as a 1R (mild acute cellular rejection), my heart sank. But it isn’t a concern since jumping between 0R and 1R is common (you can’t get rid of rejection 100%). We are still waiting for her AlloSure results. This special blood test will quantify the amount of donor heart DNA floating around in her blood stream. Donor DNA in blood is bad. We don’t expect to have high amounts, but it will be good to get a baseline. In the future, we may be able to use AlloSure to check on possible rejection instead of having a cath with a biopsy.

Breaking sternum restriction rules

Big Mac to gain weight.

First short hike

Zayne had her first right side cath on her new heart. The hospital called Tuesday afternoon to change the procedure from Friday to Wednesday. It was a really long day at the hospital, since the cath was scheduled for 1:30 pm, but we had to be at the hospital by 7:30 am for blood work. For the first time as out-patient, the cath was inserted into her neck – this means no mandatory 2-hr down time. We were able to leave much more quickly and Zayne has less restrictions (not that it matters too much since she is still on sternum restrictions). The doc said her new heart looks amazing and the pressures look like a normal heart. It is the first time in 4 hears that I received positive news from a heart cath. The transplant team was not expecting such good results just 3 weeks from the 10 hour surgery and the emergency that followed.

We still have to wait for the biopsy results to see if she is in rejection. Zayne has no signs of rejection, so if she is in rejection, it will be easier to treat. Stay tuned for the biopsy results. We’ll be going for blood work on Friday – if her immunosuppression levels look good then she can drop 3 meds.

It is good to be home. We still haven’t unpacked everything from the hospital stay, because we have to pack for another possible stay. Zayne has a right side heart cath on Friday, May 24.  Right side (vein) is safer than going to the left side (artery). The primary reason for this cath is to check for rejection by looking at heart biopsy samples under a microscope. Flows and pressure will be measures and calculated.

Once Zayne’s immunosuppression level for Tacrolimus have stabilized, she will be able to remove 3 meds from her regiment. These are the meds she takes every morning. Some meds are prescribed for up to 6 months post Transplant, and others will drop off as pain and heart function improve.