Saturday, April 30, 2016


To honor the final day of #NationalDonateLifeMonth, I wanted to put in writing my gratitude to the donor who saved my life. It makes me sad that someone had to die so that I might live. But, if I could write or talk to him, this is what I would want to say.

Dear Trevor;

You don't know me and I didn't ever get the pleasure of meeting you. But we are forever connected because you were the kind of generous individual that wanted to be an organ donor. Sadly, for your family, you became the organ donor you wanted to be, should something ever happen.

I was blessed to receive one of your lungs on Nov. 3, 2014. I had a single right lung transplant that saved my life thanks to you.  I have exchanged letters with your family and let them know how grateful I am for their support of your decision to be an organ donor. 

They wrote back and that's how I know your name, Trevor. I carry it with me every single day. Every day that I wake up, take a deep breath, I think of you. Every time I go workout, even though it is very challenging, I think of you. Every time I get hugged by a member of my wonderful family, I think of you.  If it weren't for you, none of those things would be possible. My family and I are now, and forever will be, grateful beyond words.

I was so sick, my lungs giving out on me so rapidly that if I didn't get my transplant when I did, my outcome would not have been happy. For that I am forever grateful to you.

I was and am so grateful for the Gift of Life the lung I received has given me. I have recovered very well. I was discharged from the hospital only 8 days post transplant, which is amazing! My Transplant Team tells me that I am, and I quote: “doing GREAT!” I have not needed any oxygen at all since my transplant, so being able to be free of the oxygen machine and the Bipap is a wonderful feeling. When I watched the oxygen machine being taken from the house I cried. Again, tears of joy at not having to be tied to an oxygen machine anymore! I can sleep laying down again. These are not huge things, but they are what I dreamed of when I was sick. My dreams are simple. To be able to regain my strength and go for a walk outside again and enjoy nature. I have done this. Just going up and down the stairs and making my own meals and not having to have my mother wait on me hand and foot is wonderful. To take a real shower, without assistance. Small things that are often taken for granted but that I am beyond grateful to be able to do again.

I promised the Transplant Team that if I got a lung, I would do everything they asked of me and do everything in my power to take care of this most precious gift that you gave to me, and I am an extremely compliant patient. I believe they would tell you that I am. I think since you made the ultimate sacrifice so that I might live, it is my responsibility to do everything I am supposed to in order to care for this precious gift you gave to me.

I wish you could actually read this and know how grateful my family and I are for the Gift of Life you and your family gave to me. Your generosity and willingness to help others in such a profound way will never be forgotten and we will honor your gift on each anniversary of my surgery. We will take time to think of you and your family and the gift you gave to me and what it has meant for my family. 

With deepest gratitude,


"Kind & Generous" - Natalie Merchant

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)

Thursday, April 21, 2016


April is National Donate Life Month to bring awareness to the need for more people to sign up to be organ donors. As of today there are 120,969 people waiting for a life saving transplant, so this annual effort at raising awareness and getting more people to become donors is so important.

There are many activities going on all month long across the country and it's wonderful to see so many people involved in different events to help raise awareness.

This week, my hospital (Loyola University Medical Center) has an information table set up where individuals could stop, ask questions, sign up as a donor. I volunteered to work the table for a bit on Tuesday and it was the most rewarding experience I've had in a very long time. The table was staffed with all volunteers but of those, I was the only Lung Transplant recipient. While I was there a man in a wheel chair on oxygen and with his wife and daughter came to the table. He was SO thankful to be able to talk to a lung transplant recipient who has been through it, who also had the same procedure he is going to have. His wife was crying as we hugged and she thanked me for talking to them. Thanking me! I should be thanking them! It was a wonderful moment.

Me Volunteering at the #NationalDonateLife #organdonation sign up table.

Today was our Annual Candle Lighting Ceremony held each year during this month in memory and thanksgiving to those who have given life to others through organ donation. 

This year, I wanted to do something special to honor my donor and donor family at the Candle Lighting.  I have written to my donor family and received a letter in reply from them last year, so I now know the first name of my organ donor. I contacted UNOS and requested someone take a picture of my donor's name from the Wall of Names at the UNOS National Donor Memorial Gardens at their corporate headquarters in Richmond, Virginia. I framed the picture of his name and took it with me to the Candle Lighting Ceremony to honor him and his family for giving me the ultimate Gift of Life.

Photo of my Donor's Name from the National Donor Memorial

This was the 25th Annual Candle Lighting at Loyola and it's always a very moving and emotional event. Tonight's highlight was the first speaker and Special Honoree, Dr. Susan Hou. Dr. Hou is believed to be the only transplant physician in history to be both an organ donor and organ recipient. To hear her speak was very special and moving. And she's still going strong. 

Dr. Susan Hou Speaking

I feel that once you have a transplant, you are part of a very special family. I feel a kinship with other recipients and we share our stories with each other and all of us talks about our donor and donor family. The medical staff treats us all like family, readily giving hugs to all of their patients. It's a special group of people.

Me and my Amazing Nurse Practitioner Erin!

To me, the most moving part of the program is the actual Candle Lighting! The ceremony begins with any transplant recipient, persons waiting for a transplant or family members of donors light a candle in memory for all those that have given life to others through organ donation. As I walked up toward the altar to take my candle, I carried my donor's name with me, lit my candle and added it to the other candles, I touched my donor's name in his memory and to honor him and his family. 

This was a very special evening for me and, I am sure, for everyone in attendance. While I don't need reminding that someone gave me the ultimate Gift of Life, it is appropriate that we take time every year - for 25 years now - to set aside a day where we make sure to honor our donors and donor families who made the ultimate sacrifice so we could live.

Candle Lighting Ceremony Video

The depth of my gratitude to my donor and donor family is immeasurable. I also want to acknowledge the Loyola Medical Team who worked tirelessly to save my life and continue to make sure all goes well. 

This poem was in the Ceremony Program and it touched me, so I want to share it to honor all organ donors and their families.

A limb has fallen from the family tree.
I keep hearing a voice that says, "Grieve not for me.
Remember the best times, the laughter, the song.
The good life I lived while I was strong.
Continue my heritage, I'm counting on you.
Keep smiling and surely the sun will shine through.
My mind is at ease, my soul is at rest.
Remembering all, how I truly was blessed.
Continue traditions, no matter how small.
Go on with your life, don't worry about falls.
I miss you all dearly, so keep up your chin.
Until the day comes we're together again.

Sunday, April 3, 2016


April is National Donate Life Month where those of us in the Transplant Community pay tribute to those who have given the Gift of Life through Organ, Eye and Tissue donation.

This video is to honor my organ donor along with all those who have given the Gift of Life. 

Give the Gift of Hope

Every 10 minutes, someone is added to the National Transplant Waiting List. As of today, there are 121,235 people waiting for a life saving transplant. On average, 22 people die each day while waiting for a transplant. One organ donor can save 8 lives. You can learn more at the Donate Life America website.

"Tears in Heaven" - Eric Clapton