After the Transplant Doctor Consultation

Last Friday started sunny and calm outside. Inside, another story.

Getting out of bed is very difficult most days. It takes a lot of energy and oxygen to get myself going. This morning I found myself in a coughing loop. The more I coughed, the lower my blood oxygen level dropped. Coughing is physically exhausting. After being unable to stop coughing, I switched from the concentrator to a tank of oxygen which gives me purer O2 and helps break the coughing loop. It worked, but I had used a lot of physical energy. I only have so much and I needed to save some for my meeting with a doctor from the transplant team at Toronto General Hospital.

The meeting started late because the video conferencing app Microsoft Teams didn’t work. [surprise, surprise; btw I hate MS Teams] We finally got the audio portion working, but the doctor could not see us. We could see her and we could hear each other.

The first 30 minutes or so was the doctor exploring my health history. I’m getting very good at telling that story. The latter part of the meeting was a thorough briefing by the doctor on the lung transplant, the risks, and the follow-up.

As we expected, my failure to meet the standard for the walking/breathing test combined with my age means I am unlikely to be approved for the transplant. The bottom line is, I am too sick, too weak, and not healthy enough to safely go through this major surgery. And if even if I made it through the procedure, I don’t know that I would be strong enough for the recovery period.

The doctor wants to try one more test. This would involve saturating my body with oxygen and the then doing the walking/breathing test again to see if there might be another way of approaching this. Again, I am not optimistic. In fact, this consultation helped me more clearly understand my situation and make some hard choices.

I have decided end any further attempts to get a lung transplant. I will soon be setting a date for MAiD. I still have a number of things to get done before that. I want to clean up, pre-pay, and otherwise put my affairs in the best order possible.

In other news, since early last week I have been receiving some support from palliative home care through Health PEI. I have had several visits from a nurse and a respiratory therapist. The nurse has been very helpful and has, with the support of my doctor, upped my meds to make my breathing easier and reduce the coughing. It has worked and until my body adjusts, I’m high AF several times a day.

Since I am not trying to become stronger or gain more stamina to have a lung transplant, I have also decided to pull out of the pulmonary rehab clinic. There is no point in me taking up space that could be used by someone who really could benefit from the clinic. I think if I need to use oxygen from a tank, I could use it for a wheelchair walk along the boardwalk and not for a trip to the clinic at UPEI.

At this point, I am aiming for early November for the MAiD procedure. But I am aware that I could have another sudden decline. I grow weaker every day and can’t get around anywhere nearly as well as just a few weeks ago. What I do know is that I do not want to live much longer like this. I can’t move around much. I’m being pushed and pulled on the walker. Everything is an effort from getting out of bed to brushing my teeth to having a sit-down shower to getting dressed to eating. And when my blood oxygen runs low and I’m gasping for breath and that feels awful.

It’s almost sunset Sunday as I stare out the window at the trees that were shredded by Fiona. Some of the remaining leaves have begun to turn red and gold.  The temperature is dropping and the forecast calls for a risk of frost overnight. I’m grateful we have power. I worry about the more than twenty thousand homes won’t have heat. We are still quite tired from our five days without power. I can only imagine what these folks are going through. I wish there was something magical we could do to instantly turn on the electricity.