Monday, September 15, 2014


It's hard to find positives as I go through this Lung Transplant journey. Of course, the most important positive is that I was accepted as a transplant candidate so that's good.

But after that, it's hard for me to make a list of positive things. Of course, they're there if I stop and think about it. It's just very difficult to find them through the fog of pain, fear, shortness of breath, and the never ending waiting for THE call to come.

Well, I actually got very happy yesterday when I weighed myself. As many know who have ever been prescribed Prednisone, one of the lovely common side effects is weight gain. When you are given super high doses for extended periods of time, it really packs on the pounds. It didn't matter how hard I tried to stop the weight gain, it just kept coming. When I was in the hospital being evaluated to see if I would be accepted for a transplant, I met with the Transplant Dietitian. My instructions were to try to at least lose 10 lbs. By then I had been stepped down to the mandatory low dose of Prednisone required for all transplant candidates so I was told that should help make losing the weight easier. 

Being a compliant patient and wanting to do everything possible that I could so I would be accepted, I attacked the diet full force and have been working at it since I was discharged from the hospital back on May 3rd.

I am happy to report that I have now lost a grand total of 20.9 lbs.! I am so proud of myself. Being on this medication regimen, not able to exercise made it hard to accomplish this goal, but I did it. I called my Transplant Dietitian today to report in and she gave me an enthusiastic "atta girl!" She even told me to stop trying to lose weight and now I am supposed to work on maintaining my weight! WOW! That was good news! So there's another positive!

So I got that going for me. It does make doing the Rehab easier than when I started which is good. Another positive.

I got to see my Interstitial Cystitis doctor last week and get some much needed bladder treatment which was a big positive. My IC has had to take a back seat to my lung disease and I've just had to suffer through the pain. Even though it's very challenging I am going to resume doing at home treatments (bladder instillations). These are very helpful and while it takes a lot of energy for me to mix them up and administer them to myself, the relief is worth it. I'm going to give it a try and see if I can do these periodically. So that's a positive - well, for the time being.

My sister-in-law from California flew in over the weekend to visit me and that was a huge positive. My family is just rallying around me and showering me with support and love. I am truly blessed. The biggest positive of them all - family!

The list may not be long, but the positives are there. I have to focus on those to help get me through this most challenging of times. This waiting is SO hard, but wait I must. So in the meantime, I need to focus on the positives to help get me through.

The Positives.  They're there. I just have to look for them!

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