Sunday, February 16, 2014


Where do I begin. My emotions are all over the map. Shock, scared, angry, not me, seriously?; and this is not what I had in mind - at all! And really, me? Seriously?

This really has been a journey. What began 12 years ago with a diagnosis of Interstitial Cystitis and several associated conditions that put me on Disability has morphed into a whole new level of health care I never thought I’d find myself in. No one does. No one thinks they will hear the words I heard this week at The Mayo Clinic, but there I was sitting there hearing words that evoke all the above emotions and more.

I wrote back in December when I was in the hospital for 8 days about this new health issue involving my lungs. After all the time in the hospital, the doctors ended up deciding it was Adult Onset Asthma and I was released from the hospital with what we believed were the appropriate treatments.

Unfortunately, none of the treatments were helping and I wasn’t getting better. In fact I was getting worse. Medication changes, referrals to other specialists; more medication changes. Nothing. The coughing, wheezing and shortness of breath continued to get worse and worse.

Now it’s been 90 days of this and it’s time to get serious. So, when my Pulmonologist here tells me he has a colleague at the Mayo Clinic in Rochester, MN and he has discussed my case with him and they believe I should make the trip to consult with the doctor at Mayo, I guess that’s what you do next.

So, plans are hurriedly made, brothers rally around to accompany me and we fly off to Rochester and to Mayo. They are so organized and I cannot express how impressed I am with everything single thing about Mayo. The facility is a beautiful and comforting environment to be in if you are sick. Every single person we came in contact with was the best of the best in every way. There is a reason they have the reputation they have and I found it held up in every way.

I spent the first half of the day going from test to test. It went like clockwork; smooth as silk and at every step along the way I encountered pleasant, helpful and kind people. It was a long morning and I was glad when the testing portion of the program was over and we could go back to the hotel and rest up and finally have some food before I was to meet with the doctor.

This is the beauty of the Mayo system. If I had done all these tests here at home it would have taken over a week to get them all scheduled, likely all on different days and then my doctor would have to wait for the reports. When time came for my appointment with the Mayo Pulmonologist, not only did he have all my tests, labs and scans from Chicago but all the testing I had done that morning at Mayo. It’s an amazingly efficient system. 

Finally I get to meet the man I came to see. The Mayo Clinic doctor who I’m hoping is going to give me the answers. Well, he had answers all right, but they were not at all what I was expecting. 

He’s a wonderful doctor; the kind you always hope for. Kind, caring, listens to your questions. No question is too stupid and he spent 3 hours reviewing my tests and showing me my test results and CT scans.

He explained that my lungs are getting worse rapidly. He showed me on the computer how each test that I have had shows the progression of my symptoms and I could actually see on the computer that they were worse now than in December and worse yet again than even 3 weeks ago. (Oh and we discovered I DO have 3 cracked ribs from all the coughing! No wonder I'm in so much pain!)

The doctor says we don't really know why this is happening. Because we have ruled out pretty much everything, the Mayo doctor told me we were down to two causes: this was either Idiopathic (medical speak for we just don’t know why) or it was likely the result of damage from medication(s)! In fact he told me to discontinue two of them immediately.

I have a new and major meds regimen that I have already started. The doctor was forthright - my back is against the wall and we are really at a life threatening situation as I am deteriorating rapidly and they have to stop it NOW! If we can't stop the deterioration, I will need a lung transplant! 

Are you talking to me, doctor? Transplant? I came hoping to find out that I wasn’t crazy and I really was as sick as I felt and they’d be able to tell me what it was, prescribe treatment and I would go home and get better.

It was worth the trip for sure. I cannot say enough about the doctor. But the message was clear. We have to hope that this massive drug regimen will work. The doctor said if we see even a 10% improvement over a few weeks, he would feel we are going in the right direction and would continue with the treatment. But if we don't start to see this getting better, then that's not good and I’d be facing a lung transplant.

The doctor from Mayo even gave me his card and said I could call him anytime and he would call me back within 24 hours! He even called me while I was traveling home. He wanted to know how I was doing and if I had gotten back to Chicago. GREAT doctor!

So my journey to Mayo was not at all what I expected, but I believe it was well worth the trip. We finally have answers and know how serious this really is. 

I am hoping & praying these meds will do what we need. A lung transplant really isn't on my "bucket list"! But my doctor here in Chicago spoke to me after I returned from Mayo. He had spoken with his colleague at Mayo and we discussed the seriousness of my condition. He told me he is going to begin the process of making phone calls to the two Chicago area hospitals that do this: University of Chicago and Loyola Medical Center to begin the transplant evaluation process. This is real. We will speak again on Monday and review how I am doing at this time. Decisions have to be made; can I manage at home right now to start with.

I wanted to share my Journey to Mayo and what is happening as I always do on my Blog with the intention of education, sharing my journeys through my health struggles, but this is not intended as a pity party.

Am I scared? I’d be lying if I said I wasn’t. I want to maintain a positive attitude and believe in the wonders of pharmaceutical therapy. This still hasn’t set in and I’m processing a lot of new information.

Trying not to think down the road to the worse case scenario is the biggest challenge. Staying focused on today, taking my meds and doing what I am supposed to do is what I must try to focus on. One of the first things I did upon returning from Mayo was to make an appointment with my Psychologist for next week. I think we have a lot to talk about!

This will be a fight in so many ways. Physically, emotionally. Trying to stay positive. 

When I began my journey to Mayo I asked my wonderful brothers to help take pictures of my journey and I have made it into a little video to help me try to stay positive and strong. I hope you like it.

"Brave" - Josh Groban

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