Sunday, July 27, 2014


"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 the present moment wisely and earnestly."

  - Buddha

"Up on the Roof" - James Taylor

Friday, July 25, 2014


It’s a long (to say the least) and winding road to becoming a Transplant Patient. I cannot believe August will be here next week and just since November, what I consider a short period of time,  I got so sick that I was told I needed a Lung Transplant or I was out of options.

So your doctor goes into overdrive trying to get you evaluated to see if the either of the only two hospitals where I live will even consider accepting me as a transplant candidate. It’s not enough to just NEED a transplant. Nope. You’ve got to EARN your spot and it isn’t easy. 

Thus begins the Ups & Downs of being a Transplant Patient. Months of trying to even get a proper diagnosis. Then realizing that I am facing life and death. Better buckle up; this is going to be a bumpy ride.

Already being on Disability for another incurable, painful, difficult to treat medical condition, I thought I had figured out how to navigate being a patient. Learned how to cope with chronic disease. This was a whole new deal.

Emotions run the gamut from the depths of being told you will die unless you get a lung transplant to tears of joy when the second hospital finally, finally says they will accept you for a transplant and you are now officially listed with UNOS for a Lung Transplant! 

The Transplant Teams are very honest about the journey you are about to take. Brutally honest. It’s scary. So there goes that roller coaster again. Can I please just get off and take a break? 

There are no breaks. There is always a test or doctor appointment, Rehab and more to deal with. But I am now part of a new community of others just like me. We are all waiting for a Transplant. I have had the pleasure of meeting other Lung Transplant Candidates and you feel a kinship. Just like I did when I was diagnosed with IC and began writing this Blog, being an IC Patient Advocate; we feel a connection to those facing the same thing we face. We are somehow connected.

We have been told to expect “false alarms” when it comes to having a transplant. We’ll get that call that we’ve been waiting for, go to the hospital, get prepped for surgery only to find at the last minute there is something unacceptable about the organ that was to be donated and the transplant is cancelled and we must be sent home. That just happened to a new Lung Transplant friend of mine. Talk about the Ups & Downs! All in one day! That’s rough!

Then there’s the nice man I met at Rehab who sat next to me working out during class. We chatted a little and my Mother and his Wife would have tea together while we were in class. I learned he’d been waiting 10 months for his Lung Transplant. I was absent from Rehab for 1 week for a procedure and when I returned, he wasn’t there. Could it be? YES! He got his transplant and that’s why he’s not at Rehab!

I hardly know him, but I was overjoyed for him and his family! I hope to hear how he is doing and get a good report. 

I have to have yet another test on Monday and a doctor appointment at two different locations. These are exhausting days for me but I will do what I must. I’m trying to learn to roll with the punches; it’s a work in progress.

Yes, there are many Ups and Downs in the life of a Transplant Patient. That’s true of many people with many illnesses. But the journey through Transplant it unique, I think.

We know there is a way save us, but can we get it in time? So we wait and we ride that roller coaster of Ups & Downs and hold on tight to our support team!

I never liked roller coasters or any rides at the amusement park. They make me sick. That’s nothing new. So you can imagine being on a roller coaster that is a Transplant Patient for someone like me is no small feat. But I’m working on it. I hate waiting, but wait I must. 

Buckle up, the roller coaster is ready to take off - again - and the Ups and Downs are ever present!

Sunday, July 20, 2014


Today is my Birthday. A milestone usually marked with lots of fun, celebration, cards, presents, party and friends and family.

This year for me it is different. Today is my 59th Birthday. I’m not telling you this searching for all those things I mentioned above that generally come with one’s birthday. 

No, it’s my Birthday and it’s a milestone that six months ago I wasn’t sure I would see. After being diagnosed with Idiopathic Bronchiolitis Obliterans back in February and told I needed a Lung Transplant or I was out of options, I wasn’t so sure I’d be here today.

I am. So I celebrate life. I celebrate being accepted for a Lung Transplant. I celebrate the love and support of everyone who is helping me on this journey.

Today is my Birthday. And I have everything; except the most important present of all - new lungs - that I could want for now. 

So I will celebrate my Birthday today with my family albeit very low key. And when I blow out that imaginary candle on my cake (no candles around me with my oxygen!) my quiet wish will be that I am here a year from now to celebrate turning 60 with a new set of lungs!

Close your eyes, blow out that imaginary candle and wish my wish comes true!

Friday, July 18, 2014


This was supposed to be a Blog about my IC illness, and it was until the beginning of this year. My journey through living with life altering IC has taken me places I didn't think I could go but we do what we must and try to move forward. Learning to live with chronic pain and illness isn't easy, but I was doing it. Even though I had to stop working because of my IC, I felt like I was handling it; doing what I needed to manage my disease and try to help others.

Well, clearly this Blog has morphed into the story of my lung disease. Being diagnosed with a rare disease that no one could figure out was life altering. My IC friends must be feeling neglected, but when something like this happens, the road takes a sharp turn and you can crash and burn, or you can follow the road and see where it leads.

When I was finally diagnosed with Bronchiolitis Obliterans and told I needed a Lung Transplant to survive I was beyond shocked! And my writing ground to a halt. This Blog was never intended to be about self-pity but a sharing of my journey, encouragement, and support.

I wanted to keep writing, but even doing this takes energy I rarely have. Deconditioning and side effects from medications make my hands tremble and shake which makes it difficult; medication side effects also now make it difficult to concentrate and have affected my short term memory some. It literally takes energy to sit up with my computer and actually write a Blog. Plus, it has been a journey to process this medical news and figure out how to handle it.

Three stays in the hospital and a trip to Mayo also interfered with posting. Then trying to get accepted for a Lung Transplant has been like preparing to climb Mt. Everest. The testing and demands made of Transplant Candidates is truly monumental. One hospital turned me down. I was running out of options. Finally being accepted by Loyola and getting that letter that says I am Officially listed in the UNOS system and given my Lung Allocation Score gave me hope.

Based on my most recent Pulmonary Function Test last Friday, my condition is continuing to worsen, but the good news is that increased my Lung Allocation Score which pushes me up the system and hopefully will mean I get my transplant sooner rather than later.

But I wait. I go to Rehab and keep my doctor appointments, which are key to making sure your UNOS score stays Active. I have a wonderful family that is supporting me and going out of their way to help me. I have wonderful friends who support me. All of you help me in ways big and small. I am fighting, but there are ups and downs. Medication side effects, being permanently attached to oxygen. It truly "takes a village" to get me anywhere. It's been a learning experience but we've kind of figured it out and are getting "systems" in place for all the different things I must deal with.

Calling the Fire Department, Police Department, Electric Company to let them know there is a person living in the house on 24/7 oxygen is recommended so in an emergency they know where to go first to help that person. Who knew?

I could go on. But this Blog that started out to Support my friends in the IC Community is now mostly focused on my battle to get a Lung Transplant. My IC isn't happy about this either which is another challenge I'm trying to deal with.

Yes, this Blog has had a Change of Tune I'd say.  I still want to share my journey and will do so whenever I can manage.

Most days, I feel a bit like Wile E. Coyote who never sees it coming!

Sunday, July 13, 2014


Today's quote really spoke to me; it is exactly how I am feeling. So I wanted to share it with everyone. I am doing this every day now. 

Courage is simply the willingness 
to be afraid and act anyway. 

- Robert Anthony

I Dreamed There Was No War - 
The Eagles

Sunday, July 6, 2014


I need a Lung Transplant. I’ve written about this before. But I have multiple other health challenges, so many that the only other hospital here where I live that does lung transplants turned me down.

If it weren’t for my personal Pulmonologist calling Loyola and never giving up fighting to get them to evaluate me, I wouldn’t be here. It was such a long, complicated, complex journey, but I was accepted and I am finally on the UNOS Transplant List! Now I have a chance. All I want is a chance. You have no chance if you can’t get on the list. So now that I’m on the list, at least I have a chance! No one could ask for more.

So one would think I sit at home waiting for the call to come. If only. The Transplant Team keeps you very busy. I haven’t written a Blog in so long because I haven’t felt up to it or had the energy. I am required to attend Pulmonary Rehab twice a week. What it takes to get me up, dressed, fed, and ready to go is no small feat. Everything takes twice as long now that my lungs are so bad. By the time all that is accomplished, I get to Rehab and get back home, settled in and have lunch, over half the day is gone and I’m exhausted. I almost always fall asleep at that point.

I’ve been required to attend several different Lung Transplant Education Classes, so add those to having to go to Rehab.

I just had surgery last Wednesday that the Transplant Team wanted. I have a swallowing dysfunction that causes me aspirate thin liquids. So since being diagnosed I’ve been adding that thickening powder to all my drinks. It works great. But the Transplant Team is very concerned about me aspirating into a newly transplanted lung. If I did that, the odds are high that I would kill the new lung and we don’t want that. So their work around was to put in a feeding tube. So I had that done last week. I am still recovering and it’s going slow, but moving in the right direction. Today is better than yesterday so I’ll take it. I have to see the surgeon who did it in two weeks.  It’s not in it’s final “form”. Right now I have a tube over a foot long, but in several months, once it becomes a real “part” of my body, they can shorten/remove the tube and I might even just have a cap. I look forward to that day. We have to flush the tube every day and clean it. Today I even took a shower! 

Having to have surgery when you are suffering from a life threatening lung disease is no small feat. It’s been rough going. But I’m glad it’s over and I’m recovering. I must see the surgeon in two weeks, so I must call to see about making that appointment. They never tell you that until after your surgery (on the Friday of the 4th of July weekend!), so I have to wait until Monday to call, and then you can never get in to see the doctor when the doctor tells you to come see him!

Getting a transplant isn’t easy. It shouldn’t be. But, boy, what I have been through to get to this point; well, honestly I feel by the time I get mine (thinking positively), I feel I will have earned it!

So, whatever I am asked to do, I will do. At least so far, I haven’t hit anything that would make me say - no, that’s too much and we’ve reached a place I no longer wish to go to. So far, I’m game for whatever they’ve thrown at me.

Don’t get me wrong. It’s all very scary, intimidating, overwhelming. I need to dig deep each time I am faced with another hurdle. So far I’ve managed to do that.

Now, I focus on recovering from this latest surgery to put in the feeding tube. I have Rehab to resume in about a week (per doctor’s orders, wants me to skip this week and even then resume slowly and with caution); a few more classes and keeping up with regularly scheduled doctor appointments.

No one ever said this would be easy!

Me in the hospital after my feeding tube surgery!