Wednesday, July 1, 2015


It's been a long two years years. Since developing a rare lung disease that took way too long to diagnose, finding out I needed a lung transplant, being put on the transplant waiting list and waiting and waiting for my lung to come, never knowing if it would. Finally, I was blessed to get THE call that there was a lung for me and I had my transplant.

While I am blessed and grateful every single day for the precious gift I was given, it has been a very long and painful journey. Not just the pain and trauma of a major surgery like a lung transplant, although it is definitely NOT for sissies, let me tell you. But due to my lung disease and this recovery period, my IC had to take a back seat. Since my surgery, I have finally been able to see my IC doctor and I got an instillation at that visit. Aaaaahhhhhh! It had been so long I'd forgotten what it felt like for the pain in my bladder to be relieved, even for a little while.

I know in the IC community, our treatments all vary. There is no one treatment that works for all, but for me it has always been an instillation cocktail. It is, for me, my miracle treatment. To not get it for nearly two years has been an added challenge to this whole process. It just made dealing with the transplant pain even harder. 

Being required to go through Rehab and exercise didn't help my bladder either. Walking on the treadmill, sitting on the bike, lifting weights; all of those just made my bladder scream at me even more. 

Before I got this lung disease, I was doing instillations at home, but when I was in a wheel chair and on oxygen, I didn't have the strength to mix it up and give it to myself. I also couldn't get to the doctor to get a treatment, as it took three people, and every tank of oxygen I had to get to the doctor's office, make it through the appointment and then home again. After one attempt and nearly running out of oxygen before we got home, we realized it was not practical to try to get to his office for a treatment. 

Well, as my recovery has progressed and my exercise and Rehab has helped me begin to regain my strength and energy, I have thought about the possibility of of re-starting my instillations at home. I was beginning to feel stronger and that I might be ready to give it a go.

Today was that day. I went to the basement, found the boxes with my instillation supplies, gathered what I needed and carried them up two flights of stairs (I'm counting that as part of today's workout - LOL!). I mixed up my cocktail; it was like riding a bike. It all came back to me in an instant. I mixed up my cocktail; catheterized myself to drain my bladder and pushed the instillation. What wonderful relief! To have that pain go away, even if it's for just a few hours (we'll have to see how it goes), was nothing short of wonderful. 

I am still feeling the positive effects of the instillation and it's been 3 hours! That's very good and if I can remain comfortable for a few more hours, I will be so happy. I'm already happy. I can't wait until I see my IC doctor in a few weeks and give him the good news. He'll be so happy for me. He has felt so helpless as I went through this lung disease and then my transplant; all he wanted to do was anything he could to help my IC and he couldn't. Now he can and he's so happy I got my transplant and am recovering well (let's pray that continues).

Today has been a good day and getting some much needed relief from my IC is part of what makes it a good day. My bladder is calming down and that's less pain than I had before I gave myself that instillation. It's a good day!

Instillation Cocktails from ICA Website:

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