Wednesday, April 27, 2016


This Blog, as many know, started after I was diagnosed with Interstitial Cystitis. If you're new to my blog, you may ask "What Is Interstitial Cystitis (IC)"? 

Well, Interstitial Cystitis, or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency and urgency.

IC may also be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain. You can read more about these different names for IC on the ICA website:

While everyone with IC is different, some patients, like me, have such severe cases where traditional treatments don't help and we end up on Disability. I can't take pain medication so my options are limited. I usually get bladder instillations at my doctor's office and I have to self-catheterize due to retention. This was challenging enough all alone; I had to sell my home and move in with my parents where I still live.

Then out of the blue in Nov. 2013 I came down with a cough and an illness no one could diagnose. I was in and out of the hospital over the course of 3 months. That's when I was advised to make the trip to the Mayo Clinic to get a diagnosis. My brothers really came through and two of them escorted me and pushed me around in the wheel chair that by then I needed.

By the time all the testing was done and I met with the doctor I was given a diagnosis: Idiopathic Bronchiolitis Obliterans. WHAT the heck is that I wanted to know. What I was told next changed my life forever. The doctor explained the disease and told me I would need a Lung Transplant if I was to survive. We were all very quiet and shocked to say the least. I know I was a "deer in the headlights".

Eventually I was accepted for transplant and listed with UNOS. It took about 5 months from being listed until I got THE CALL that they had a lung for me. I have done well since transplant and my lung has allowed me to breathe and enjoy life.

With that said, being a transplant recipient is a lifelong situation requiring I take about 20 different medications and about 35 pills every day. With that come a lot of side effects that can be very challenging.

Having both IC and being a Lung Transplant Recipient do not exactly go well together. Since transplant I have had to work very hard at physical rehab, which my IC does not like. But if I am to regain my strength post transplant I must work out, which is challenging enough by itself. But then my IC goes into a flare from the exercise and I'm miserable from that.

In addition, being a transplant patient means I will be on anti-rejection medication for the rest of my life which means I am immunocompromised and must be very careful about exposure to germs and follow strict guidelines to avoid catching things. Even doing all I can, I can still get things that I might not otherwise if I were not immunocompromised.

Due to my IC retention problem, I have to self-catheterize which can be challenging for healthy people, exposing them to the possibility of a UTI. Well, now that I am immunocompromised, I have had 5 back to back UTI's, which for an IC patient is making a bad situation even worse. I'm concerned that a trend has started and that I will be battling chronic UTI's. I hope this isn't the case, but it certainly could turn out this way.

Those are just a few examples of how these two diseases don't get along and make life post transplant more challenging. I'm learning to cope with all the side effects and problems that pop up from being on so much strong medication. It isn't easy, but I keep going. I listen to my body and if I need a break, I take it. Other days, I persevere and go do my workout. 

It's a learning curve trying to make sure I am following all the guidelines I've been given, looking out for signs of other medication problems - am I sick? is it just allergies? why do I have that cough? 

Thank heaven we are assigned a Transplant Nurse Coordinator who has the patience of a saint and answers all my questions, no matter how minor. She reassures me when I need it and tells me when something needs changing. Aside from my family, without my amazing medical team, I could not do this!

I'd rather not have to deal with all this; who would want multiple medical conditions? But this is my life and the Challenges of Multiple Illnesses. I will deal with whatever is thrown my way!

"One Dream" - Sarah McLachlan
(This was written for the 2010 Winter Olympics
but I Find It So Inspirational)

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