First Cold Update

So, funny story...

The transplant coordinator called me this morning.

I had told all of you that I have been avoiding calling her. Why ask questions to which I really didn't want to know the answer?

I had written her an email this morning (my preferred communication method) asking if we should be monitoring his oxygen levels with our oxymeter. I knew the answer, but I suppose I wanted reassurance that the things I'm doing in my role as caregiver are the correct responses to what has been happening.

In the phone call she said yes, and took it even further to say we should be monitoring it at rest and after activity.

I also asked in the email at what point he should be going to the ER and she said if his oxygen drops below 94 or 95.

His oxygen levels are important because they are a vital marker of heart function. If his oxygen is high his heart is likely functioning very well and helping to oxygenate his body adequately. But if his oxygen levels are down there could be a problem with his heart function and he would need to fly to Washington to be further evaluated for diagnosis and treatment.

I even told her, "I have been avoiding calling you because all of this stuff is very heavy." I didn't have to say more. She knows, as her job includes being the middle-woman between very capable doctors and at times very worried patients and their families.

We spoke a bit about Patrick's current illness since that is what my email was in regards to, but before she got off the phone I said the words I really didn't want to ask - "Do you have a minute? I have some questions I would like to ask you."

Here are the answers in a format that, while retelling them, I won't end up worrying myself anymore than I already have been over the last few weeks.

Yes, Patrick's blood tests showed an increase level of Donor Specific Antibodies, or DSAs. These are present when Patrick's body creates antibodies to fight off the foreign body - the donor heart.

His levels were 4,800 at one point, and then 4,300. I do not know the dates of these tests. The last two antibody monitoring tests listed in his chart are for March 2024 and August 2024, but I thought he had one done in early October.

Regardless, what is important is that the coordinator said these results came out of nowhere - from a negative, or 0, result, to 4,800 and the 4,300. Because they happened suddenly, his provider wrote the order for the IVIG infusion.

Patrick did labs yesterday but we won't know the results of the antibody monitoring for a couple days.

And actually, about the test results - his WBC was 6.5, which sounds high. It's within the normal range for a non-transplant, healthy individual. I only checked that after I spoke with the coordinator, so I haven't asked her about it. The previous infusion paired with his current cold makes me confused about that WBC level and how it is outside of what seems to be Patrick's normal range.

A transplant recipient can live with low antibody counts, as long as they are stable. For heart transplant recipients it is also important that they don't have any effects on their heart function. This stability may be due to medication, or a natural balance created by the recipient's body. So again, Patrick's suddenly high DSA counts were alarming. However, she also told me she has patients who are upwards of 20,000 on their DSA counts. What makes Patrick's concerning is that he is still in the 6-months-to-2-years window where they want to set up recipients for success and monitor these things diligently.

Patrick has DSA. Does this mean he is in Antibody Mediated Rejection? This is another question I didn't want to know the answer to, thanks to Google and the widespread availability of medical knowledge I know nothing about but have little reservations to trying to understand.

"De-novo DSA have threefold increased risk of mortality."

And also, this little gem - "AMR is a major factor in reduced long-term survival after heart transplant."

I don't like you, Google.

I know, I know. Don't Google medical stuff. And yes, I know. Each recipient's journey is different, and just because Patrick has DSA and AMR right now doesn't mean we won't make it to our 45th wedding anniversary, or that he won't see 30 years with Andrew's heart.

And yes, we are still eternally grateful for Andrew, for his family, for the UW team and the providers that have led us to where we are today. Patrick always says, "If I died today, the heart transplant will still have been worth the time I've had since receiving it."

But it's hard. I spilled my guts to all of you in the last post. I dread bad news, but have grown extremely adept at handling it over the last nearly two decades. Every day it's a new challenge, but also every day it's a new blessing.

Well, doing the dishes isn't a blessing in my eyes, but being able to listen to a podcast while zoning out washing pots and pans... It's the small things, right?

We have no idea what the future will bring. We don't know if I'll be dress shopping in 2050 for a vow renewal in 2051 for our 45th anniversary. We don't know if Patrick will live to see our kids graduate high school, or marry, or have kids, or have amazing careers. We just don't know, but neither do any of you. And in that we can have solidarity - that today is a day to be thankful for.

Find reasons to smile today. And if you see me, I could use a hug.

I will update soon.

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.