First Cold After Heart Transplant

Two updates in one. I wrote the first update yesterday, and have an update from today following. Thank you for being here!

Monday, 11/4/24 - I would like to start off this blog post with a request.

Please pray for Patrick. He has his first cold since getting the transplant and its hitting him hard, for reasons I will explain in a moment. He and I sat up last night after he came to bed because he was coughing so hard he was throwing up and having a hard time breathing. After the fits pass his breathing calms, but it was enough for him to ask sheepishly, "Brings back memories?" as I rubbed his back and held the small trash can on his lap.

After his body had calmed and he was able to lay back down and not sound like he was on death's door, I had a hard time sleeping for so many reasons.

But first I'll explain why this cold is hitting him so hard.

I am not clear on the exact details and I have questions I have been planning on asking his transplant coordinator. Not all of them are questions I'm sure I want answers to. His labwork showed Donor Specific Antibodies, which either mean he may go into, or is in, a form of rejection called Antibody Mediated Rejection. I'm not sure my mind could handle the latter so I have avoided calling for weeks. There is a medical journal article online that states, "De-novo DSA have threefold increased risk of mortality." 

That's not the bedtime lullaby I was hoping for. 

Also, "AMR is a major factor in reduced long-term survival after heart transplant."

Yay.

After getting the results of that labwork he was instructed to receive an IVIG (intravenous immunoglobulin) infusion at FMH on October 9th that would bring down his immune system in an attempt to mediate the risk of rejection. He was told it could make a person feel sick and weak, but he wasn't prepared for the horrible side effects. 

The infusion lasted from 9am until 1pm, when he returned to the shop. During the infusion he felt fine, but after an hour he was feeling exhausted, at two hours he was shaking, at three hours he had nausea, and at four hours he was in so much pain he came home. His body, his bones, and his joints felt like the worst Covid symptoms one could imagine. It hurt to move - "Like I had just rolled down a mountain." And every inch of skin felt like he was three inches from a fire, but underneath he was frozen - cold and uncomfortable. 

When I tell you that was the worst day for us since before the transplant... It was awful. Full on PTSD flashbacks and fear. 

The day after, he was feeling better but any movement caused him to be out of breath. He still is not fully recovered from the infusion, which makes sense knowing how greatly it affects the bone marrow. When the foundation of the human body doesn't feel good, nothing feels good. 

And in reference to the cold, for the purposes of explaining how well we isolate Patrick when colds are going through the house, this is cold Number 6 that he finally caught. Yes, six colds have gone through the house since the start of the school year and this is the first one Patrick has caught. It just so happens to coincide with the infusion, which has made a regular common cold hit him like a bus. Of course the worry is that it will affect his heart.

Last night was awful. His coughing was horrendous. Without him knowing, I saw on the end of the bed for about ten minutes because there was no way I was going to be able to get back to sleep. I also wanted to be ready to spring into action should he need me, which he did. After ten minutes of coughing he asked me for the little bedroom trash can, and I then sat with him and comforted him while he threw up and heaved.

When he finally did calm I wasn't able to fall back to sleep for a long time because of the thoughts running through my mind. With that fear of his heart being affected, of course I thought of what would happen if he died. What a terrible thought to have, but it is one we both have had all too often. 

How could I function without him? With four kids? A kindergartner and a young adult with special needs? The 17-year-old would have to get her license or she would be forced to drop out of the one public school course she takes. She would have to be home when the others got off the school bus because I would either have to run the shop full time or get a full time job, and I wouldn't be able to afford childcare. What would I do if the lift station pump went out? Our lower oven heating element just started sparking and caught on fire, luckily under Patrick's watch. What if I had been cooking and had left the room? I managed to switch out the elements by myself but still, what if the house burned down? What if Blue, our golden retriever, was in the house and died? Or the kids? Without Patrick, who's left to save me from myself when I make silly mistakes or dumb decisions? Where would I be left without my other half? How could I live? How could we ever be happy without his presence?

The mind can run wild when given a little bit of fuel, and I had a lot of fuel last night. My next thought was, "Oh, God. He doesn't have a defibrillator." Through his c-pap mask I couldn't quite hear regular breaths because the machine is so loud. I stopped, all thoughts ceasing as I listened for the telltale inhale and exhale, or any rhythmic pattern I could make out beneath the sound of the c-pap machine that would signify Patrick was breathing.

Because if he wasn't he no longer has a defibrillator in his chest - his portable paramedic team. If his heart stopped...

I know CPR. I'm trained. 

That doesn't mean I relish the idea of breaking his sternum while performing chest compressions, knowing the love of my life is dying.

All normal thoughts, I assure you, when you have been through what we have been through.

The last three weeks have been tough. As I said before, we are on the sixth cold to come through our house since the start of the school year mid-August. I have had at least three of them, our 5-year-old has had all of them (since I am pretty sure his kindergarten class is the source), and the other kids have had them in varying degrees and instances. But until now we have been able to keep Patrick safe. I don't know what the implications are for a person with a heart transplant to have a cold.

We are asking for prayer and positive thoughts, for healing for Patrick and a reprieve from these illnesses for our household. 

Our pantry is well stocked with cough medicine, Nyquil, cough drops and throat lozenges, and Cloroseptic spray - none of which Patrick is willing or able to take. 

This is going to be a long winter.

Tuesday, 11/5/24 - An update to the update.

Patrick went to a clinic yesterday to be seen by a doctor. His hope was that his illness was... bacterial? Viral? I can't remember which one gets antibiotics.

It wasn't the case, and instead he was referred to the emergency department at the local hospital, FMH. His chest x-ray at the clinic had revealed a spot on his lung that was concerning, and a visit to the emergency room left him with a diagnosis of pleural effusion. This means he has a build up of fluid in the pleural space outside the surface of his lungs, inside his chest wall. The recommended procedure to alleviate symptoms is Thoracentesis, which is where a provider inserts a tube between the ribs on the side of the abdomen to drain the fluid.

Patrick chose not to have the procedure done in the emergency room and has a referral to Radiology, where they may be a bit more specialized in the procedure. While he is at such high risk of infection he doesn't want to take any chances.

With that being said, last night was terrible. The majority of the night was much like the previous ones where he coughed a lot, couldn't really wear his c-pap mask, and pretty much kept me awake most of the night.

Last night he woke up gasping for air.

I can't even begin to describe how awful that sounds, waking up to it. It gives me chills as I write about it.

He only gasped twice and quickly settled afterwards, breathing in a way that I could tell his body had calmed and he was able to drift back to sleep. As soon as he gasped I had reached over our son and grabbed Patrick's arm, probably a little too hard, as though knowing I was there would help him. I think it did. I hope it did.

I don't know what today will bring, but I am praying he recovers from this cold and that it doesn't affect his heart. I'm praying the rejection goes away and we can go back to the 30-years-hopeful state we were in.

I will update when I know more. But in the meantime, please keep Patrick in your thoughts and prayers.

Update To The Update

I spoke too soon.

Patrick received a call a couple days ago about a test result from the Seattle trip. It was his transplant coordinator saying a certain number was too high so they wanted to bring his Mycophenolate dose back up to where it was, 1,000mg per day. He is experiencing a rejection. They aren’t too worried about it, but since he is still within the “new” category of heart transplants less than two years out, its better to manage it with medication than to wait and see how it plays out.

I wish I knew more about it. Patrick fielded that call and relayed his usual 5% retained information back to me. I may ask him to call the coordinator to have her explain it again so I can understand more. Apparently the Tacrolimus and Mycophenolate work to protect against rejection but in different ways, so they are keeping with the plan to lower the Tacrolimus, while increasing the Mycophenolate.

I may just refer to them as Tac and Myc from now on. Tack and Mike. That saves me some headache trying to type words I am not familiar with.

In my previous post I mentioned living every day like it is your last. We had a situation yesterday that put the fear of God into everyone in our van.

We were driving home from town and were on the 40 MPH road by our house. Patrick had begun to slow down and had his blinker on to turn left into our road, had turned the wheel, and the van had just begun to move in that direction when a large crew cab Dodge pickup BLEW past us on the left, quite obviously going faster than the speed limit.

They say your life will flash before your eyes in moments when you come close to death. Patrick was driving, behind him sat our 18-year-old with special needs, and behind her sat our 16-year-old. In that moment I knew he could have killed them instantly, and injured or killed myself, our 5-year-old, and our 13-year-old.

Everyone I care most about on this earth were in that van last night, and it could have ended horribly. I remember the air pressure shaking the van as the driver sped past, and as Patrick realized what was happening the exact split-second he needed to.

Patrick gave chase, as I knew he would, and we pulled into the dump behind the guy as he had his doors open while parked next to a dumpster. Patrick rolled down his window, and the young man immediately approached. He looked to be late 20’s, maybe early 30’s. He was shaking, and I was mad.

If you knew you nearly killed a family, why would you not stop? There is something going on in that man’s heart that I don’t like, based on that act alone.

He did apologize profusely after Patrick rather calmly stated he almost killed our entire family. He explained something about being cut off and getting mad at the other driver, and then speeding out of anger, which is when he passed us.

Hot headed. I think that’s probably a good term for him. His road rage attitude nearly ended everything for us.

Luckily, he and Patrick spoke and the man apologized again and again, even once directly to me, rather genuinely.

But… Damn. That was scary.

And I had the opportunity to kindly remind Patrick he needs to be aware of traffic both in front of him and behind him (which is something he has always bragged about doing…)

So, you never know. Hug your loved ones today.

I’ll update the blog again when we know more. If we do call the transplant coordinator and I find out more about Patrick’s rejection situation I will definitely post an update. Until then I will keep reminding Patrick to TAKE NOTES.

Living The Good Life

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…