How Did We Get Here

When Mark was waiting on his first transplant he enjoyed regularly hearing his doctors mention how young and healthy he was. In reality, the only reason he was having kidney trouble at all was because of how long he had been diabetic combined with less than ideal medical care when he was fairly young. The new string of specialists when he needed his first transplant reassured us regularly of the likelihood of a positive outcome.

We were expecting at least 20 years of normal kidney function.

In 2018, I was diagnosed with cancer. We would spend more weeks in the hospital that year for Mark than for me. The week I was diagnosed, Mark woke up unable to breathe. He was coughing, short of breath, and had a low-grade fever. A cold is not a big deal for us. We’d been through some stuff.

He started turning blue, his face and lips, his fingers, he was gasping for breath. He’d been fighting me to not go to the doctor and telling me he thought he just had a cold. I called and talked to one of his nurses and they gave me a list of things to watch for. It was getting late, he had long met the list, but he just kept hoping he was going to start to feel better. Mark kept asking me to give him just a bit longer to try to sleep and feel better.

I admit I allowed him to negotiate. Who knows why. Around 1:00 am I woke up to him throwing up and gasping for breath. He was on fire. I pressed him again that we needed to go in. He did not ask to wait till morning as I expected, and agreed to go to the ER.

He was able to get into the car by himself, but was much worse just in the time it took for us to get to the ER, 10 minutes away. There was no parking close. I told him I was dropping him by the ramp, he needed to walk to the bench, and wait for me to help him check in. He got out of the car and I flew to a parking spot.

As I rounded the corner I realized he was hanging on to the rail with both arms, he was bent over at the waist, and gasping for breath. I grabbed one of his arms and slung it over my shoulder directing him to keep going, and holding as much of him up as I was able. The last steps to the doors seemed like they took forever. When the doors opened I saw a wheelchair and practically dropped him in it.

They did a chest Xray and called it pneumonia. They would pump him full of steroids and antibiotics and he would feel better. A month or two would go by and it would happen again.

And again…

And again…

By the 5th or 6th week long(minimum) trip, so many labs, countless tests and cultures, chest X-Rays, and still no answers, one of his doctors decided we need to do a bronchoscopy to figure this out. We finally had an answer, kind of. He had Diffuse Alveolar Hemorrhage(DAH). Basically, his lungs were bleeding, and that looks a lot like pneumonia on a chest X-Ray. None of the doctors could agree on an exact cause but made some adjustments to some medicines, and it seemed to finally clear up.

Unfortunately, the DAH caused some permanent scarring in the lower lobe of one of his lungs. When we questioned his transplant doctors about this at the time, they encouraged us it shouldn’t have any effect on his ability to breathe or quality of life. The scarring was minimal. This was probably very true under normal circumstances. This was just 2 years before covid started popping up, and,,,

Only 4 years before covid would put him in a coma.

Any guess when some minor lung issues might matter? You guessed it! When an immuno-suppressed man comes into contact with something like covid. Covid caused such a similar reaction in Mark to the DAH. He was gasping for breath, his lips were blue, all of it. We at least knew a few tricks to manage some of his symptoms now. It just wasn’t enough.

We went on an adventure to the ER at the recommendation of the transplant department, and they were overrun. Then they kicked me out– because covid. He had no one to advocate for him, and has trouble remembering his medical protocols and advocating for himself when he is sicker(I literally keep a binder of all of his info). They started giving him IV fluids against my recommendation. His body couldn’t process the fluid and his breathing got worse.

Having covid caused him to experience an acute kidney injury to his donated kidney. His labs were out of control and not getting better. His breathing and labs were getting worse by the day and he was in respiratory failure. The doctor called to tell me they needed to put him into a coma. Then my Marky called. He called to tell me what was going on, between gasps, to tell me he loved me, and to tell me goodbye, just in case. We recorded a video of him for our girls and said goodbye one more time.