At my last appointment, my transplant doctor put me back on a lower dose of Rapamune until I’m transplanted. I’m happy about this because he’s on the same page as me with the concern over all the diving around I had been doing with my lung numbers. He’s always on the same page.
A year ago I was at around 30-32 percent when I had my transplant evaluation. Since this was on the line, I really wasn’t sure if they’d evaluate me & have me wait or start talking listing immediately.
I knew my doctor & nurse practitioner well since I’d been seeing them since late 2010 early 2011 when I first had a visit with them, well before I needed the evaluation but just to get the overall general facts.
Now, fast forward a year. At my last appointment a month ago I was below 20 percent & I was feeling it. I was getting very concerned. So was my transplant doctor.
In the month or so I’ve been on the lower dose of Rapamune, I’ve rebounded back to 20 percent. Gone are the 5 point drops per visit I was having (sometimes even on my drug before listing). Which is great for a few reasons I’ll get into in a moment.
I’m not going to get better, but thankfully my decline can still be managed somewhat now, which was getting harder & harder to do so the past few months.
The medrol has helped too. Since they put me on that steroid, I’ve been avoiding the ER visits & my oxygen levels have stopped wobbling around so much thankfully.
Finally, my FVC (my other number used in scoring) started dropping a little. This number was always the last to drop or not move, no matter how many symptoms I took on or how crappy I’d feel, but that’s also why my score wasn’t moving as much overall as they had hoped.
I know it seems screwed up to say this but I feel relieved now. That number did need to budge & start dropping for me to continue moving up on the list. Thankfully it did. Seems a weird thing to be happy about but I am.
Now my score can move up again & hopefully that means I will start getting some more calls soon.
But luckily even with that number declining, I’m still not feeling the sheer & utter breathlessness I was last month.
Most people really have no idea just how bad things get. I don’t go around talking about it much because I know most people only mean to ask how I’m doing to just say “Hi” like they talk about the weather or another passing statement. I sometimes don’t have the energy to get into it either.
But the gory fact remains that some days I literally can’t talk much at all because I get too physically winded to do so.
Even on my good days, I get out to do some errands or stretch my legs for an hour or two at a time at most, generally only a half hour or 45 minutes. That’s it.
I have to make sure I have at least 2-3 tanks with me for that time since I’m on 8 liters for just walking around. That’s my day.
Even with starting rehab (which is helping) it’s hard to live like this. When it’s too hot or humid, I can’t go out at all because even with the oxygen it’s too much work for my lungs.
Though the Rapamune has been helping my fatigue some, they worked me pretty hard yesterday. I had a CT, a 6 minute walk, a breathing test, & my appointment.
I was ok on the way home but after I was home a few minutes I decided to watch a movie. 10 minutes in I fell asleep. I woke up around 10pm to take my night meds, eat some food, & then went back to bed again shortly after.
Now I’m up a little earlier but I still may sleep because I’m still exhausted just can’t sleep. I do sometimes get some periodic insomnia too.
There are a few friends that are good about checking on my friends & me and offering to do things with me which I appreciate.
I usually end up going out for a snack or something quick with them because I tire so easily.
I’d like to be able to go out to movies or improv shows but it’s just too hard to do that now.
Some people have told my family they they think my parents need to see me. I assure people there’s plenty of time for that later but right now it doesn’t make sense for several reasons.
The transplant is imminent & they’ll be out here for months during my recovery anyway.
Also, I’m the type of person if my family comes out I want to do things with them & show them things & right now I can’t. It wouldn’t be enjoyable for them or me. I’d feel guilty having them out but not be able to do anything with them. It would be a waste beyond it being too physically taxing right now.
But most people don’t actually understand this end of it because they aren’t living this with me.
I know they mean well but things like that are frustrating to hear because it doesn’t show much regard for my parents or me to have these “directives”.
I’m very fortunate my parents do what they do for me, have been supportive & have done what they can all along. They aren’t perfect but they don’t have to be. I love them regardless & they’re always there even though they are physically miles away. I’m not a perfect daughter either, but they don’t expect that of me. Our family works, period.
I’m fortunate I still have them around & I look forward to a day where we can do places & do things once I’m recovered. They’ve seen enough of me sick & things will get rough & ugly enough soon enough again.
Neither of us need to waste physical or mental energy feeling bad because of my unpredictable energy levels. I’d rather them gear up for when the time comes. They were out here when I needed them during my car accident which I was grateful for & which was the most important.
Perhaps I sound a bit angry, it’s just the assumptions of “what’s best” have to stop coming from people who are not living this because that’s emotional weight that’s being added to an already difficult situation.
It’s like telling a grieving family member how they “should” deal with the loss of their loved one. (No one welcomes that & everyone resents it.)
Instead I would like people to ask my friends and family who are caring for me how they are doing with this – buy them a cup of coffee or a treat and be there to listen instead of giving “advice.” But that takes time and a listening ear more than just talking at someone.
My transplant won’t be a magic wand & the recovery won’t be easy. But right now I’m not really living as much, so it’s the best chance I have at getting some of my life back.
I just don’t have time or energy or much patience for people who are not on this journey to support me, friends who are my backup caregivers, my friends I live with (who are my main support both caregiving & emotional & do help me take care of myself), or my other family on this journey to put in their two cents about how any of us “should be” handling this, although I know they mean well. They probably don’t realize what those judgements feel like. They can’t really because they aren’t living with what I’m living with right now.
Right now, I am very sick. There’s quite a bit I don’t put out here even in my blog for public consumption because although I am an open person, I still have things I’m quite sensitive & private about. How deep my struggle goes with this, is one.
I will share that with transplantees if they sincerely are scared themselves or want to ask or pre & post transplant friends to commiserate over something or pick their brains. Especially if we need to compare notes on certain situations from time to time but that’s it.
There’s still parts of me I keep to myself, like anyone.
We all need support, not “shoulds”…
I sometimes tire of answering questions but it’s not personal. It’s just because I’ve been asked that same question by 10 other people most likely.
The most common of which is “Have you had the surgery yet?”
Again, it’s not like an appendix or a gallbladder. Or something that is an emergency one & done. Nor is it something like a knee replacement that it can be scheduled ahead of time when I want it.
I only point this out because there are others on the list that have been waiting longer & in worse shape than I am that I do have concerns about them getting a transplant in time before they truly get too sick to be able to have one.
Those with antibody problems or other concerns that make it harder for them to be matched.
I don’t know how they do it but then again I do. The same way I do. There’s nothing inspirational about it, it just is.
I thankfully don’t have those issues with being overly difficult to match but I do have empathy for those situations because this life with end stage lung disease is not at all predictable. Or, by any means, remotely easy to live with even on a day-to-day basis.
I’m ready any day now to be on the other side of this journey, even though I know that too will be a lot tougher than most realize.
I’m just thankful that maybe finally some of this ugliness I’ve been dealing with for the past year is finally starting to level off again & the movement on the list continues to go in the right direction.
(The picture I used in the featured image picture was a picture I found in the public domain during a google image search & the one I used to kick off my blog on August 1st a year ago. I thought it impressive then, & still do now.)
Great article. Well written. Many good points. My situation is vastly different from yours. Nevertheless, I, too, get frustrated when well-intentioned people give directives. It does not help. I love the point of being sensitive to your caregivers, also. You have a long journey. More accurately, you are on a long journey. Hugs.
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Absolute truth: “We all need support, not ‘shoulds'”.