WE HAVE A PLAN

Since getting the call on Monday that the Transplant Team at The University of Chicago Medicine Duchossois Center for Advanced Medicine (DCAM) was denying me the recommended Lung Transplant I was told I needed, it’s been a very emotional and scary time. 

I saw the doctor at The University of Chicago Medicine Duchossois Center for Advanced Medicine (DCAM) again on Wednesday. It was a good meeting with the doctor. He is not giving up on me and has a plan with meds that he wants to put me on in an attempt to STABILIZE me. That's the word of the day "Stabilize"! They want to stop the decline and just get me stabilized for now; that's the biggest concern. I gave him all the reports from Mayo and he and the Mayo doctor were on the same page; he had no disagreement with anything Mayo did.  That said, he believes this medication tweaking will be helpful. So, we're not throwing out the whole Mayo plan, just tweaking. Adding a new Drug, keeping me on most of the rest and just changing dosing a bit. It’s an aggressive plan, medication wise.

The Transplant doctor doesn't know if we can "heal" the damage that's been done yet. His first concern is to stabilize me as I said. He said he will be very satisfied if we can stop the decline, get me stabilized and have no further damage. He said your body can adapt and even though it might be a VERY, VERY "new normal" you'd be surprised what you can live with so he doesn't want me to give up. I did say, well, what if this plan doesn't work. He said,"then I go to Plan B". He has plans; I like that. He's SO kind and caring, yet I can tell he's brilliant. I feel lucky to have been sent there. He wants me to call in a week to report in (unless something bad happens first) and I have another appointment to see him in 4 weeks. He will be doing periodic testing to see how things are going and if we are getting me stabilized.

Being diagnosed with Interstitial Cystitis 12 years ago, learning to live with chronic pain and ending up on disability shook my world. Or so I thought. That changed everything for me and I’ve done all I can to become an activist fighting to raise awareness about such a little known and poorly understood disease. This new crisis has not helped my IC one little bit. My IC is very angry that it has to take a back seat to my lungs. It is screaming at me and my pain is worse than ever. I have no options right now; I must cope and manage it as best I can. 

Now, after this new - and truly rare and mysterious - illness has hit me, I am in shock that this is where I am. How did I get here? We likely will never know. It’s a one in a million chance this would have happened. But it did. Two rare diseases; how did I get so lucky! 

This is a whole new level of shifting my expectations that is really hard. Not being able to breathe - that’s scary. Not being able to get a proper diagnosis, while I continued to get seriously worse - that’s scary. Laying on the floor gasping for air unable to speak for help - that’s scary. Heck this is just plain scary. 

My family is rallying around and surrounding me with their love and support and help and encouragement. I am blessed to have them. Friends are flocking to offer help and support, bringing us meals, offering to drive me to doctor appointments, offering prayers. We are truly blessed with so many wonderful people, family and friends in our lives. I knew this was so, but when you see it in action when you really need it, it just brings tears to your eyes.

So we have a plan. We need it to work. My mantra these days is simple: “STABILIZE”. I keep repeating it to myself, over and over:  “STABILIZE ME; STABILIZE ME; STABILIZE ME.” 

WHERE DO WE GO FROM HERE?

I Blogged last week about meeting with the Lung Transplant Doctor to discuss my lung disease and viability for a transplant. He said I was a very complex case and would need to meet with his entire team to discuss whether or not I would be a candidate for transplant and he would call me after that meeting.

Monday of this week the call came. The doctor and his team had met and discussed my case and I will not be getting a transplant. They do not feel I am a good candidate because of my complex medical history and so will not recommend me for a transplant.

What to do with this news? I cried because when doctors tell you that your lungs are in such bad shape you should be on the transplant list, you kind of figure it's pretty bad or they wouldn't suggest it. Now, it's not like I was all excited about the possibility of actually having a transplant! I too could not see how I could get through the process given the many challenges of my medical condition and allergies to medications. But when you are told this is what you "should" be doing and then are told: but we we're not going to give it to you. Well, it's hard to hear and pretty scary.

My Mother held me in her arms while I cried. The doctor isn't giving up on me. That's good news. He's a transplant doctor and I would not have been surprised one little bit if, since they won't do a transplant, he just washed his hands of me. He's a surgeon; he operates. Why would he still be involved in my care? But he told me he would still try to help and I have an appointment today to consult with him again about other options for treating this disease. He says he has suggestions and ideas.

I don't know what to expect. I know it will involve medication(s). I don't know how bad this is especially given I cannot have a transplant. I have questions. So, we're heading out shortly for the 2 hour drive back to the at The University of Chicago Medicine Duchossois Center for Advanced Medicine (DCAM) to listen to what the doctor has to say and see: Where Do We Go From Here.

Bronchiolitis Obliterans with Air Trapping

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold.  They believe that when something's suffered damage and has a history it becomes more beautiful.  ~Barbara Bloom

*** *** ***

I like this quote and want to try to view myself in this way. Heck, if this is so, I must be 24 carat gold at this point.  But the point, for me, as I work my way through this latest hurdle, is to try to stay focused on the now and not spend a lot of time thinking long term down the road. That's the hardest part for me. I will keep trying. 

"May it Be" - Enya

FINALLY: THE RIGHT DIAGNOSIS!

It's been a long and twisty journey to get to this place. Over 90 days of suffering and getting no answers. After Mayo Clinic last week & yesterday at The University of Chicago Medicine Duchossois Center for Advanced Medicine (DCAM) - Finally a diagnosis: Bronchiolitis Obliterans (Drug Induced). A long process has begun but at least we know what we're dealing with. And I'm FINALLY getting oxygen!

The Lung Transplant doctor yesterday was all one could ask for - caring, kind, brilliant, determined, concerned for my well being. This was a very small first step in the process. He promised to help me "one way or another" so that is reassuring. He listened and asked lots of questions about IC; I think he was impressed with my knowledge on the subject and the fact that I am and educated patient and that I came so prepared with all the information he needed when he asked for it.

I have a lot to process, as I keep saying, but it is true. This is rare and you never think you're the one it's going to happen to. But here I am.

But - Finally - the right diagnosis! No matter the news, to me, just to know that the doctors (the best in the world) have told me this is not in my head. I am very sick and this is very serious. Well, there is a kind of relief in knowing that. 

Now, we take it one step at a time and see what he recommends. The doctor will be meeting on Monday with his entire team to discuss my case, which he says is extremely complicated and complex. I will hear from him after that about their conclusions.

Until then, I can't wait for my oxygen to get here and I wait. I've never been good at waiting, but wait I must. More to follow.

MY JOURNEY TO MAYO!

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

I'M GOING TO MAYO!

Today it's 3 Months since this Pulmonary illness hit me. I have spent 8 days in the hospital, been referred to several specialists, had test after test - some repeated more than a few times. Everything keeps coming back negative. Every treatment we have tried doesn't help and 3 months into this, I am as miserable today as I was when it started. I am no better today than I was when I was admitted to the hospital. I am no better today than I was when I was discharged from the hospital. My symptoms are just as bad as ever and my body is breaking down. My family is very concerned, as are my doctors.

At the encouragement and suggestion of my Pulmonologist, I am heading up to Rochester, MN to the Mayo Clinic for some testing and to see a doctor that he knows and is friends with. My lab tests and scans have all been sent and my testing schedule and appointment with the Mayo doctor is all set.

This was very short notice, just getting the call on Friday and having to try to coordinate all the logistics and who would accompany me. Normally my sainted Mother would be coming with me. But she has broken foot and none of us thinks it's a good idea for her to travel. So, my wonderful family is really stepping up to the plate. Two of my brothers are taking time off from work to accompany me and assist with this very difficult trip for me.

So, tomorrow I'm heading up to Rochester, Minnesota to Mayo. Wednesday are all my tests and my appointment with the doctor. The plan as it stands now is to fly home on Thursday afternoon. Let's hope the plan works out. 

I have nothing to lose and hopefully, finally, answers and a treatment plan that will get me well. I am taking my iPad so I hope to find time to post updates. 

If you read yesterday's Blog post you know it was my usual Sunday Inspiration Quote and Song, but it was a special dedication to my family. This is why I made that special dedication. My whole family has really rallied around me, gone out of their way to help and support me. And for two of my brothers to take time off from work to accompany me means the world to me. I am grateful to my entire family beyond words.

"When Trouble Comes,

It's Your Family that Supports You"

Guy Lafleur

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

Today's Inspirational Quote and Song for the day are a very special dedication to my family. The love, support and amazing generosity they have shown me as I struggle with so many health issues, just makes me feel so grateful. While I hope this inspires everyone, this is for my family, who mean everything to me!

"HOME" - Phillip Phillips

SO MANY IC STUDIES!

I see so many posts all the time about how we need more research to better understand IC, find better treatments and even, one day a cure.

But, I am so excited to see so many Studies happening more and more often. The ICA often posts notices about Studies that are looking for patients as well as Grant Awards looking for researchers to submit proposals to study IC. 

This should all be taken as an exciting time for those of us struggling with IC. More studies and more research grants means more opportunities to unlock the mysteries of IC. I know a lot of you often want to help everyone in the IC Community by participating in studies when you hear of them and I commend anyone who does so! You are true heroes to participate in a study where you have no idea if it well help you or not! Patients who volunteer to participate in studies deserve our thanks and deep gratitude for wanting to do what they can to help us all!

I often read posts by patients who are frustrated because they don't qualify or live close enough to participate in a study. But don't be frustrated. I thank everyone who wants to participate in a study but if you can't participate in the study, no need to be disappointed or upset. The study will get enough participants; they always do. The work will go on, so even if you can't participate, I encourage everyone to just be excited whenever you see a notice about a study. If you want to see if you can participate, that's great. But if you don't qualify, the study will still go on and we will one day learn the results and, hopefully, unlock whatever mystery that study was investigating.

Recently, the ICA posted this link to a study; a clinical trial aimed at easing bladder pain caused by interstitial cystitis (also known as painful bladder syndrome) is now underway. Learn more about how you can get involved by visiting:

www.BladderPainStudy.com/ICGal.htm 

For anyone that is interested in the many studies be conducted on IC, here's a link to the ICA website page on IC Research:

http://www.ichelp.org/page.aspx?pid=568

One of the other important studies that is well underway is the MAPP (Multidisciplinary Approach to the Study of Chronic Pelvic Pain). This is a significant study and here's a link where you can read about the latest on this important study.

http://www.ichelp.org/page.aspx?pid=747

I could go on, but just to see so much research activity is so encouraging to me. The more studies the better. There is so much to learn about IC and I am encouraged by the work the ICA is doing to lobby Congress for research funding and to see so many studies seeking volunteers to study IC! 

The ICA Lobbying on Capitol Hill

To anyone who is or has participated in an IC study, I thank you on behalf of IC patients everywhere. This is how we will discover and unlock the mysteries of IC! The answer is out there and all these studies give me hope for our future!

INSPIRATIONAL QUOTE & SONG FOR THE DAY!

“The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live in the present moment 

wisely and earnestly.”

Buddha

"Fire & Rain" - James Taylor