Actually, as I write this, it isn’t one year post transplant. It’s 13 months post transplant! WooHoo! And the best part is I’m not tardy posting because I’ve been at medical appointments or too tired. I haven’t posted because I’ve been too busy! Really busy, with my old fashioned normal stuff!!! I’ve felt more like myself in the past three weeks than I have in a long time.
My legs are still a problem, but they are improving. I’m still having trouble with stairs and inclines, but more from a leg standpoint than a breathing standpoint. Mind you, if the old legs would work I might get out of breath, but when you’re moving very carefully, it isn’t very cardio-vascular.
These past few weeks I achieved some big personal milestones – big to me anyway. I attended the 26th Annual HPS Network Conference. My dad called to ask how the conference went. I’m embarrassed to say that before my little brain could process all the great things that happened at conference, my very first thought was – it was fabulous! I was there!
It killed me to miss it two years in a row. My biggest disappointment for the weekend is that I didn’t get to spend as much time with members and friends I don’t know very well or who were new. But whatever happened, or didn’t go right, the fact remains, I was there and that was big for me.
It was my first trip outside of the Washington DC metro area. (I did go to Baltimore at Thanksgiving, but that is still pretty close.) I was very worried about how my legs would do walking all over the hotel for several days. They did awesome!
My second big little personal milestone was I got to attend Super Pet Expo. If you know me at all, you know I’m the crazy dog lady. Finley isn’t just my pet, my helper, my partner or my lifeline (as he has been over the years saving my rear on more than once). He’s my little boy. This show is run by someone I knew back when I worked for EXPO magazine. When I moved here, I saw all the ads for it etc. and thought it would be fun to go. The first year I had a schedule conflict. The next two years I wasn’t well enough to go. Or, to be more exact, I was worried about going that far and not being able to take enough oxygen with me.
This year I was worried about my legs holding out for the event, but after my New York Conference trip, I had more confidence to attempt it. You can always sit down if you have to after all.
I invited my niece to go with me. We had a ball! I got to spend some quality time with her, which I haven’t been able to do as much as I would like these past few years. The show could have been filled with nothing and I would have been thrilled just because I made it there and walked around for four hours.
Now that my medications have somewhat stabilized, and my weight has stabilized (I’ve gained and lost 50 pounds three times in the last 12 months from water retention and medications), my goals are to get stronger and lose weight (again!). Of course my weight didn’t stabilize at the lower end of my yoyo…..
One of my nurses told me that when they were able to get the Prednisone lowered enough, the weight would be easy to lose. I told her the universe just doesn’t work that way for me. Grin! I’m still on prednisone (may be forever), but my dose is much lower than it was most of the last year. And, of course, even when I’m eating and exercising like I should, every ounce is a hard-won thing. Lots of patients lose weight as they get sicker. I lost weight too, but not because I was sick. I was working like hell for every single pound documenting everything that went in my mouth, going to pulmonary rehab etc. I will confess that the three weeks before this past week were a total junk food carb fest. When I get super busy I just don’t eat as well. Nowdays, when I eat out, there are more “healthy” foods than ever, but now that I have to avoid some things because of the bacteria risk because I’m immune suppressed, sometimes the best option for me isn’t the always the best healthy eating choice. I’ve eaten more hamburgers out while traveling than I ever would have, mostly because I can often give cooking instructions, or adequately check that the meat is really well cooked. I’ve tried ordering grilled chicken a few times, but have sometimes had chicken I wasn’t 100 percent sure was really cooked enough for me – as in dry and super well done.
Weight has always been a battle for me, even when I was a kid. The good thing about being “in training” for my transplant is that for the first time I had access to real medical experts who were able to figure out what works for me. It wasn’t some diet industry scheme or “lifestyle” that really is in fact a diet. It was a dietician who worked with me to try several different things (instead of pushing one program and then blaming me when it didn’t work) and physical and respiratory therapists who worked with me on exercise that was appropriate for my level of fitness (or lack thereof) and my specific medical issues. It was the first time I’ve ever had long-term success in the weight loss department (thus so frustrating to have put weight back on post transplant). The up side is that now I know I can do it. And, I know a lot better what works for me. So, now it’s a matter of plodding along, following my plan etc.
It feels so good to be doing more of my normal things and to see some progress. Sometimes in this journey you can get stuck for months and you start to wonder if this is as good as it’s going to get, or if you are ever really going to see more improvement.
I wouldn’t say my breathing is “normal” by any stretch. But, I would say it is good enough for most things I want to do. And who knows…..the future is yet to be written.
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