Monthly Archives: June 2020

June 29, 2020 marks the 5th anniversary of Zayne’s heart transplant surgery. This year, the celebration seems dampened by the rejection episode. For the first time, I didn’t bake a cake because she told me that she didn’t want one (we just had a “pill” celebration cake, and I would end up eating most of it). She wanted to celebrate by going back to the Wild Animal Sanctuary after today’s transplant clinic appointment.

Results from today’s heart transplant clinic appointment: no change, everything is the same. However, another medication bites the dust – Lasix was stopped on Friday, and isn’t needed anymore since Zayne is the same as last week. Down to 4 meds.

Another week of the same or slightly better results. We’ll take it. Her echo show very slight improvement, BNP managed to go down from the unexpected high a couple of weeks ago (still a little higher than the lowest number after rejection). No nasty donor specific antibodies – we want to keep those at zero.

Last week, we went to visit the Wild Animal Sanctuary It was our first public outing that didn’t involve the hospital (besides walks and bike rides). We went on a cold, rainy week day – perfect for us! It was empty, and the animals were active. Zayne loved it.

Recovery is going slowly, but it is going. We’re hoping that last week’s high BNP (measures heart failure) is an anomaly, because all other indicators are the same or improving. We’ll get PRA (antibodies) and BNP next Monday (oh no, that means a vein poke).

Zayne attempted to eat the sidewalk (bike fall), and it looks like she only has some sore teeth. I told her “next time, turn your head”.

Medical News

• Aspirin has been stopped
• Magnesium is stopped for now – the team is researching different types of magnesium with less side effects.
• Switched from Tacro liquid to capsule (levels have been stable, so the change was allowed)
• Dropping down to 1 hospital appointment every week
• Every other week vein poke
• Next cath in 1 year

Today was a mixed bag. Besides the terror of another COVID test (the 3rd in 6 weeks), the cath seemed to go well. Pressures in Zayne’s heart have gone down from April 27, 2020, but they are still high. For the first time, they were able to use intra-vascular ultrasound (IVUS) and fractional flow reserve (FFR) into her coronary artery. Flow rate was good, and there was NO gunk/plaque could be found along her arterial walls (the doc had only seen this in one other transplant patient).

Unfortunately, the BNP (indicates heart failure) has gone up instead of continuing a downward trend. There was talk of spending the night, but without having the pathology report or antibody result, they can’t treat or have a plan of action. Right now, it us unknown why the BNP has gone up.

The future is unclear, and we may be back in the hospital. Most likely discomfort and pain for Zayne will continue with additional IVs and venous blood draws from non-complying veins.

It has been a long day – we left the house at 5 am and returned at 7 pm. The 6 hour IVIG extended hospital time into the evening. Hopefully, this infusion will add some helpful antibodies.

“Why do I need another COVID test” and “I’m scared of the COVID test” is repeated multiple times every day. Zayne was supposed to have the test on Saturday, but she asked to have it the day of the catherization (we’ll need to be at the hospital at 6 am Monday so they have time to process the test). We’ll probably need to go even earlier, because there will be a lot of stalling and crying.

Two heating pads on both arms, a special light, and they still can’t draw blood without multiple pokes and lots of painful ‘needle searching for vein’. Apparently, Zayne doesn’t have good veins for blood draws. The successful poke was in her hand – which Zayne finds to be more painful.

Zayne is not liking the hospital anymore, because hospital = pain.

Results from Thursday (June 4, 2020) clinic visit was good. Heat rate is still “down” in the 120s and no change on echo. Donor specific antibodies have not increased (we’ll find out more after the results from her biopsy on Monday). Platelets are a little too high, and Magnesium too low; aspirin has been added to the med list and Magnesium increased.

We’ll go for a bike ride this weekend to help her get her mind off of Monday. Today, Zayne seems to be eating a little more and she her stamina is slowly improving.

We baked a cake for Zayne’s Pill Party. We had a party to celebrate Zayne being able to swallow pills (the white circles represent pills, and the 0 candle means no more liquids). A huge achievement! Once she is only on regular meds, I can stock pile a small supply. Living month to month with liquids that expire and cannot be stockpiled is scary. The world of travel is starting to open up, if we don’t consider the pandemic, eating issues, and rejection.

Zayne had more energy on Sunday, and today’s transplant clinic had some good news – heart rate is down to the 120s, blood pressure was the lowest level in a month, gallop was not easy to hear, and EKG looked better. Echo still doesn’t show improvement, but I hope it is just lagging behind.

Zayne doesn’t feel like eating much, which is worrisome considering how much she ate prior to rejection.

Zayne is not looking foward to June 8 – COVID, Cath, and IVIG