Math is coming back to haunt me. Numbers are invading my life. I’m in to my third month of waiting. I have another appointment at the end of the month & I’ll have some decisions to make then based on what’s been transpiring.
Last Wednesday, I felt off. It seemed at first like it was just something I ate or my stomach acting up.
I reported it, but I wasn’t having changes in my oxygen levels, just my stamina. There was one day I could barely talk I was so winded, but my levels were fine.
I remember telling a few friends it did feel like someone was trying to stick a plastic bag over my head it was just that much work to breathe or talk. Thankfully it didn’t linger for more than a day.
Then that cleared up in time for a birthday party this past weekend with a few friends of mine (they have birthdays after mine but we like celebrating them all together).
I had a good day Saturday & the activity that day made up for the fact that I was short on exercise. But my stamina was good then.
I had plenty of time to recover on Sunday but figured I’d do a quick 15 minutes on the bike to keep on track.
I noticed about 8 minutes in I was dipping a little with my oxygen levels, so I boosted my settings on my Niov accordingly.
I’ve been reporting all these changes to my transplant team as they’ve been happening. I didn’t want to go in to see them yet because I had a checkup last Tuesday with my local lung doctor & things were fine. I was feeling ok.
When I started reporting the changes, the nurse practitioner answering my messages on the patient portal told me to keep her posted in case they wanted to see me or thought my stamina was really decreasing, because I might need rehab.
That freaked me out because it automatically took me back to my car accident & the nursing home. The rehab team was great but the rehab was tough for me then. Plus, the whole nursing home experience made it that much worse.
I kept calm though but decided I needed to start testing some more mundane things too just to see if other things were changing.
I hadn’t tried doing a small load of laundry with the Niov & a small tank. So I did. After I finished (in which I took plenty of breaks in between) I tested. Too low.
So now, I had to tell my bestie yesterday I have to put the kibosh on that.
That was one of the last things I held out doing for myself because that’s how I quantify the quality of life changes. When it becomes too taxing for “x” or “y” thing.
Then yesterday I woke up at 91. Once I knew I had to adjust up on my Niov device I knew things were coming. It’s been happening that way this past year.
A week or two before my appointment I feel a change. I have to adjust my flows accordingly. They test me. I show more drops or decline in one or more tests. Another month or two goes by, we hit the repeat button.
As I decline, I go up a liter or so every 4-6 weeks. Last month I was sleeping on 5 liters. 91 is my cut off for sleep because I could dip lower at night as I’m sleeping and not know it. I knew I needed to boost to six, but was it just for sleep or for what else?
I took a shower (which I do with 5 liters of oxygen too). I tested after I came back to my room. Lower than 90. So I switched everything over (my humidifier bottle & cannulas to high flow tubing).
I wanted a few extra things on hand until I was set with my new supplier. So a few weeks ago, I had ordered some high flow supplies just in case. Which now I’m glad I did that.
Six liters is the cut-off between high & low flow oxygen. So now I’m at 6 liters for rest & moderate activity. Usually that correlates to about double that number for exercise or heavy activity if you just simply go by normal flow of a tank or machine to compare.
The only plus side is I’m hoping it will boost my score enough that they’ll start pushing for me harder to be moved up & I’ll start to get calls. I’m going to squawk harder definitely (not that I haven’t been. I just believe in squeaky wheel theory.)
A year ago, if someone told me I’d be at 6 liters with minimal activity or rest I would have shook my head in disbelief.
I know some transplant recipients have told me there were certain numbers that were very hard for them to accept. This one is for me.
I’ve got good support, but I’ll have some decisions to make at my next appointment.
One of them might be moving into the transplant house until the transplant happens if we all feel like I might need a bit of therapy to keep me built up enough.
That way I can do that there which might make more sense at this point.
I also think it would benefit me to do that in an environment that might have a better chance of me meeting people closer to my age & going through the same thing.
But in the interim (after my oxygen delivery today), I’m going to keep monitoring things & see what happens. (Start gathering more intel for the appointment.)
I knew once they pulled me off the Rapamune I was going to tank. I did my best to prepare & brace myself for it. But it’s definitely here & happening.
Numbers are everything! And they are nothing. But medicine thrives on numbers at all times. Percentages, up, down, lab tests, height, weight, chest cavity size, allocation score …….. hang in there, and I hope you can move up the list. ~ D
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I’m so sorry you are doing so poorly! I send you so much love and hope for a call soon. 💓💟
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