Category Archives: Rejection

The 3rd IVIG is done, and there are 3 more to go. I think Zayne learned the importance of drinking a lot of water prior to an IV poke. She refused to guzzle water the night before and the morning of the procedure; the IV insertion did not go well. On the positive front, there wasn’t a COVID test. Even though we were told that there wouldn’t be a COVID test, Zayne was stressing about it.

IVIG – what is it?
Intravenous immune globulin is a product made up of antibodies that can be given through a vein. Antibodies are proteins that your body makes to help fight infections. Each antibody made by your body is slightly different, because it fits like a lock and key to every foreign substance (such as a virus or a donor heart) that gets into your body. Since Zayne created antibodies to destroy her donor heart, all of her antibodies had to be wiped out (unfortunately, there isn’t a way to only target the wayward antibody). It is bad timing to have antibodies wiped out when there is a pandemic.

IVIG is prepared from the blood donated by thousands of people, to make a super-concentrated and very diverse collection of antibodies.

Only three more 6-hr monthly sessions needed. After IVIG is completed, then back to getting vaccinations (the first round landed Zayne in the ER and the dreaded COVID test). Zayne was only the 2nd kid at Children’s Hospital Colorado to undergo Eculizumab treatment for heart rejection. This is a chemotherapy drug that stops antibody production (need to stop all antibody production since the donor specific antibody cannot be targeted), and has a side effect of allowing meningococcal infections. After Zayne, there have been other kids to have this treatment, but Zayne was the only one that had a severe reaction to the first set of meningococcal vaccinations. She is not looking forward to the next set of vaccinations.

How is she doing?
Numbers are holding steady and not getting worse. Heart Echo and EKG show no change. Donor specific antibodies are dormant, resting heart rate is still in the 130s (occasionally high 120s), and BNP is below 1,000 ng/l for the first time since rejection. BNP is a protein that measures heart failure. Before rejection, her level was below 100. Zayne still gets out of breath, and has to ask me to slow down.

Other exciting news is getting a new, smaller pill box with removable sections. Zayne is doing great swallowing all pills with water. She is down to regular rejection meds, except for one. When she gets out of heart failure, then she can stop taking that extra medication.

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

We are chucking some meds and are down to only 7. Once stabilized, Zayne will only have 3 daily medications.

Thursday’s transplant clinic appointment shows no improvement since last week, but at least we didn’t see a decline. I was told that recovery could take a while. Also, blood work has stayed the same – once again, at least the bad numbers did not increase.

Zayne is already stressing over her heart catherization and next COVID test on June 8. This will be her 3rd COVID test (this test will be a 10 second swab far up her nose).
After the heart cath, she will have a 6 hr (maybe 4 hr?) Intravenous Immunoglobulin Therapy (IVIg) infusion to add antibodies to her system that were removed from other treatments. What is the source of the IVIg antibodies? The antibodies come from purified blood plasma donations (from people).

Today, we had an unexpected trip to the ER, but when is a trip to the emergency room expected? Zayne had more severe side effects from the vaccinations than is typical, but her high fever could be a result of an infection that has come about due to all of the treatments to suppress her immune system. Since the source of the fever isn’t know, we were asked to go to the ER ASAP.

Since hospital policy seems to change on a daily basis, Zayne was subjected another COVID test. On April 27, we were told that a COVID test was needed to be admitted to the hospital, but now a COVID test is needed just for showing up in the ER. This test was a little different – a squirt of saline and a tube stuck up her nose (as far as the swab method), but it was much quicker. My ear is still ringing from her screams. Unfortunately, Zayne will need the slower, 10 second swab on June 8 for her heart catherization.

For the good news of this post, Zayne’s PRA (panel-reactive antibody) for donor specific antibodies has gone down! We are stoked to hear that both PRA and BNP are going down.