The Beginning of the End - Part 1

September 28, 2020 is a day I won't forget. Looking back now, I see it as the beginning of the end.

Yes, G had been hospitalized in early August because of heart failure - but that was something we had dealt with occasionally after his transplant. He seemed at times to get to this tipping point of too much fluid and suddenly his heart and kidneys were really struggling. So at the end of July and early August when he was suddenly tolerating exercise less and having trouble going up the stairs and feeling exhausted from doing it - needing to catch his breath at the top of the landing - I was worried for sure but felt like the right tweaks - a change of medicine, consuming less salt and fluid - these things we could control would get him back on track.

It didn't.He went home from a day of IV diuretics discouraged because it didn't remove much fluid.

I remember now that a lot of times he felt the symptoms of having too much fluid on but doctors didn't believe him. The diuretics weren't working. He didn't present like most people. He had a large belly and swelling was only seen in his legs when it got REALLY bad. G was so frustrated and so discouraged. He felt like they didn't help him - and even worse that they didn't believe him.

After that he continued to be tired, napping frequently between meetings with work and having a hard time going up the stairs at night. Which was such a big change from the summer when every other night he would do P's bedtime books and go up and down the stairs at least twice.

September 28th, our coworkers came over to do a social distanced outdoor prayer time in our yard with G. I was inside with P working on homeschool and also waiting for the exterminator to come spray down out kitchen cabinets to help with the overflow of roaches from our neighbor's unit. The house was in chaos because I had the night before emptied out every kitchen cabinet and drawer in preparation.

G came inside from that meeting and said that his heart felt weird - like he was having extra beats in his neck. This happened from time to time so we didn't think too much of it. I encouraged him to take a nap and that he might be feeling better afterward. He laid down in his favorite spot where he could make his pillow "stack" and have his arm up on the ottoman. Every other position made it so hard for him to breathe. He napped there or relaxed there so often that the padding in that area of the carpet was worn down. It used to bother me. I wish it hadn't. Worn down carpet is a sign of life. I don't even notice it anymore. What do such stupid things seem to matter when someone is alive?

I woke him up from his nap because he needed to get upstairs for Zoom appointments for work. Usually I would help him with the laptop and charger and some of his drinks because it was hard for him to get upstairs carrying things. As he was going up the stairs ahead of me, he got so dizzy that he nearly collapsed and he went down on his hands and knees on the stairs with his head laying on the steps. I don't remember exactly what he said, only that he said he felt horrible. I think I ran and got the blood pressure cuff at that point - or maybe I helped him get down the stairs first. I know I was worried. I tended to push G because it felt like if I didn't, he would give up easily. But I remember that this time, something was obviously not okay.

However we got there, we eventually got him back to his favorite spot and laying down. He had trouble with low blood pressure from time to time that would make him incredibly dizzy. We had talked to doctors about this because he was on medication for high blood pressure. Without the medication, it was too high, but the medication made him feel completely awful. The doctor would rather G feel awful than have his blood pressure on the high side because that was taxing on his heart. But sometimes it got so low that he could only lay on the couch and wait for the muscle aches, pain in his bones, and dizziness to go away. He called it the "low blood pressure feeling" and when that happened, we would ignore doctors orders and hold the meds at least for a day. So that's what I thought we were dealing with - and I grabbed the blood pressure cuff.

His blood pressure was odd - I can't remember if it was low or high or a weird combination of the two, but the thing that was alarming was that his heart rate was 188. Of course that couldn't be we thought. There had been times lately when he would be doing his walking in the house (he was supposed to try to walk for 10 minutes a day and it was too hard outside with the weather and the steps and inclines) so he would do it inside. Every once in a while we would get these really high heart rate readings and we thought that the O2 finger tester was faulty. He wasn't doing that to check his heart rate so much as if his oxygen dropped anyway so we just kind of would blame the heart rate on the crappy pulse oximeter and ignore it. We had reported it to the lung doctor along with the O2 readings but his O2 wasn't dropping too much and so there wasn't a lot of concern.

We took his blood pressure again and the heart rate was still in the high 180s. G said it was being weird because we had taken it twice on one arm. So I grabbed the pulse oximeter - same thing. Well that stupid machine was cheap and we knew it didn't work well was our reasoning. Blood pressure again - same heart rate. Finally I decided to do my own BP and check the heart rate so we would know if it was really acting up. It wasn't. My reading was totally fine. Something was very wrong with G's heart.

To his dismay, I called the on-call heart transplant coordinator. G never wanted me to call them because he hated to be told to go to the hospital, but I don't remember him being very resistant this time. He felt awful and was probably a bit worried too. When I spoke with the coordinator, A, she told me that I had to call 911 and ask for an ambulance - that this was an emergency and something was wrong with his heart. She told me not to drive him myself - he needed ambulance transport. Immediately I was thrown into that calm panic - everything inside me was pounding and I had to make this happen. I went inside to tell G who was ticket. It was going to cost so much money and he felt like it was ridiculous. He just wanted a nap. But I was adamant and called 911.

P was outside playing with our neighbor at the time and so I frantically ran around the house packing G's backpack for the hospital (he wanted his tablet, I packed his phone, he wanted a water bottle, etc). I texted friends and family asking them to pray. At some point K texted me back and asked if she could come watch P so that I could go to the ER with G and I was so grateful. But it was COVID so I had to get everything ready for her to watch him outside - including hand sanitizer and masks and his lunch. G got up and went to the bathroom and I went outside and told P that "everything is okay but an ambulance is coming to take Daddy to the hospital because something is happening with his heart". How confusing and terrifying that must've been. I got P inside and soon G had refused to wait for the paramedics to come to the house - he didn't want to be wheeled around the condo complex in a wheelchair or on a gurney so the three of us extremely slowly began walking around to the parking lot - and we met the paramedics part way. I had been walking with G, holding onto his arm to keep him steady but now they took over - asking him questions and probably very surprised to see him walking.

They got him up to the ambulance and took him in and P and I didn't get to say goodbye. Lights were flashing, there was a firetruck there too, and it was all very sudden and overwhelming. We stood there until they drove away and I asked what to do. I was told to drive to the ER and let them know my husband had been taken by ambulance. Once they drove away, P and I rushed back to the house. K arrived to watch him. I quickly left, trying desperately not to break down emotionally in front of P. I got in my car and sobbed as I drove as quickly as I could to the hospital. I called my dad (or at least texted him) and some how let G's brothers know. It felt surreal.