Interstitial Cystitis & Lung Transplant: My Life Battling Disabling Illness: THE THINGS I'VE DREAMED OF DOING!

Ever since I was diagnosed with Idiopathic Bronchiolitis Obliterans and told I needed a Lung Transplant to survive, my life changed forever. I needed oxygen 24/7 just to breathe, a Bipap machine to sleep at night, a wheelchair to get around and, of course, that Lung Transplant.

My life, as most transplant patients will tell you, became very "small". I couldn't do anything without assistance and I was either at home listening to the humming of the oxygen machine that was keeping me breathing, or at the doctor, or in the hospital.

During this time, something that happens not just to transplant patients, but many patients with chronic disease (like my Interstitial Cystitis and other chronic diseases). We discover what we can no longer do. There was already a rather long list since getting IC of what I could no longer do: ski, bike, hike, go to the movies or theater, travel, among others. My IC "sisters" and others suffering from chronic illness understand this.

But now, with this new debilitating disease, it was threatening to do more than just curtail my activities, it was going to take my life unless I got that transplant. I long ago mourned and moved on over how having IC has changed my life and accepted my new limitations. I learned what I could and could not do and dealt with it. But this was a whole new ballgame.

I wanted to live and so I chose to fight. To fight to be accepted as a candidate for a lung transplant in the hopes that it would come in time and I would get my life back. Fear is something that I had never lived with and now I had to find a way to cope with the fear I might not get my transplant in time. I cannot describe how that feels; other patients waiting for their transplant do, but I believe it's a small "club" that truly get it, although I do believe people are understanding and can empathize.

Regardless, as I went through this process, I dreamed of what I might do if I ever did get that lung. They were dreams for sure. As the clock ticked and the call didn't come, and time was running out, it became harder and harder to stay strong. But I kept going to Rehab and never lost that glimmer of hope that my turn would come.

Today, March 3, 2015 is my 4 month "anniversary" of my lung transplant. While there have been and are still, bumps in the road to recovery, I am doing well. The doctors are very pleased and keep telling me how well I am doing for a lung transplant patient at this stage of recovery. I have begun to dream of the things I dreamed of while waiting for my transplant. I am still limited by my IC. It's like that old joke about the patient who asks the doctor if he'll be able to play the violin after his surgery and the doctor says yes only to have the patient tell the doctor that would be amazing since he couldn't play before the surgery. I have no expectations of being able to do things that my IC had already restricted me from doing.

But when a miracle - which I believe this is - like a lung transplant saves your life, one's perspective changes a great deal. At least mine did. I have different dreams now. When I was sitting in a wheelchair, having lost all conditioning to the point I could not stand unassisted, dreams change. Often you hear about transplant patients setting huge goals for themselves after their transplant: climbing mountains, running marathons and so forth. I do not have such lofty dreams and goals. Mine are much simpler.

Dream #1: I just wanted to be able to sleep laying down - as opposed to having to sit up - without the need for the Bipap machine and all the noise the oxygen machine made. Peace and quiet and the comfort of my bed. One's bed should be a refuge where we go for sleep and to rejuvenate. While I was sick, it was most definitely NOT that. Dream #1 has come true! I can sleep laying down, in peace and quiet and my bed is once again a place of refuge and rest and comfort. It is such a pleasure to sleep (even when my IC bladder wakes me up, I am able to fall back asleep). And I am enjoying even making my bed each morning when I get up.

Dream #2: To be able to just get up and walk without assistance. Becoming deconditioned happens SO fast, but it takes SO long to get one's strength back. But I dreamed of it happening. Dream #2 is coming true! It has taken A LOT of hard work, which is ongoing, going to Rehab, doing my exercises at home, but I can get up and walk around on my own. I am moving about the house more and more; even going downstairs and making my own breakfast and lunch so Mom doesn't have to wait on me hand and foot anymore! Today I even went outside and walked around our Cul de Sac! It's not far, but it's a first and a big accomplishment for me! This is a work in progress, but progress is being made and so the dream is coming true!

Dream #3: To be able to take a "normal" shower, standing up without assistance. To wash (and dry) my hair like I used to. There is nothing so wonderful as standing in a hot shower and letting the water cascade over your body. There is a reason people have been going to hot springs for hundreds of years; the healing power of hot water is well known. Dream #3 has come true! To be able to wash my own hair while standing in the shower, enjoying the hot water is so soothing. Showering has never been such a luxury, but I am enjoying it so much!

Dream #4: Wear "normal" clothes again. First, the massive doses of Prednisone had caused me to gain nearly 30 lbs. and even my underwear was straining at the seams. NOTHING I owned fit; nothing. Yet, I felt it a waste of money to buy new clothes. Family and even friends took over got me some very nice "warm up" style outfits to wear. I had to stop wearing a bra as it was already so hard to breathe, when I attempted to put it on, my breathing became even more labored. So bye, bye bra (I know - too much info, but it's the truth). I still can't wear one because of the surgical incision and the wound that refuses to heal. It would hit me in all the wrong places that are not yet completely healed so that's on hold for now. But I have lost ALL the Prednisone weight and my super nice Nike warm up fits again and that's my go to outfit for doctor and hospital visits. So Dream #4 is coming true and a work in progress! I did treat myself to some new workout clothes for Rehab and that felt really good. I feel very close to trying on some of my "regular" clothes to see how they feel. Up until now, I have needed loose fitting, comfy clothes. But I am about to see how it feels to put on a pair of blue jeans. I think if I show up in the doctor's office in real clothes, they won't recognize me! I can't wait for that to happen.

Dream #5: To go to the hair dresser - at her salon - and get my hair cut and styled. While I was sick, she came to my house and chopped my hair short because I could not take care of it. Dream #5 has come true! I recently went to the salon and she cut and styled my hair. I felt so pampered and it feels so great to have my hair styled again and feel like a "normal" person. I've decided to stop coloring my hair, but I don't even mind the gray. I'm actually getting a lot of compliments, which I'll gladly accept. I love my new hair cut and will keep it ship shape going forward. Little things that make us women happy.

Dream #6: To go shopping. Dream #6 has come true! As previously mentioned, I've gone shopping with my Mom for some new workout clothes and shoes! That was so much fun. Yes, I was quite tired when we got home, but I couldn't believe I was able to walk around the store for nearly 2 hours, try things on and just shop like I used to! What fun that was!

Dream #6A: To go grocery shopping: Mission Accomplished today! For the first time since my transplant, I went to the grocery store with my Mom, got my own cart and went up and down every single aisle in the entire store and got what I wanted! That's a LOT of walking for me at this point so it's a major accomplishment on this day!

There are some other dreams I have that I will write about. Some have yet to come true, but I plan on making them a reality. The very fact that I am 4 months post transplant was a dream I wasn't sure I'd ever see and yet, here we are. Six months is a dream and the biggest dream is one year! Making it to one year is a really big deal in lung transplant, so that is a dream. If I make it - and I plan to - that will be my "Re-Birthday" and we will be having a big party to celebrate. But that is down the road and for now, it's on my dream list.

I don't need to climb a mountain, run a marathon (heck I did that years ago; the marathon that is!). My dreams and goals are much simpler, but I still have things I am dreaming of doing. I plan on making them happen!