Sunday, July 24, 2016


We all have our daily struggles, some more than others. While I am happy that my lung is doing well, I am struggling with other issues that are making enjoying my transplant difficult. I look for inspiration where I can to help keep me fighting. Sometimes it's a simple quote, other times something more. Today's quote just spoke to me and I hope it speaks to you. 

I have much for which to be thankful, so even though I have my struggles, I keep on going. 

"I'm Alive" - Celine Dion

Wednesday, July 20, 2016


Today was my 61st Birthday! Most women don't like to brag about their age, but when I got sick with  a rare lung disease, vanity kind of went out the window.

I am here thanks to the ultimate #GiftofLife I received in Nov. 2014 and so today I got to celebrate my Birthday with my family. When I was sick these little things were all I thought about and all I wanted more of. Time with my family.

Today, we did not have a fancy party; I didn't want everyone in the kitchen all night long. We had a simple dinner at my request and we got to spend quality time together. It was so wonderful. The family that couldn't be there called to send their birthday wishes.

I got so many wonderful birthday wishes on Facebook and it meant so much to me, that no matter how long it takes, I'll write a personal thank you to each. These are the important things in life to me. Connecting with family and friends, near and far. 

Thanks to the lung donation I received, I am still here. Something that at one point was not certain. So today was the best day. I relaxed, spent time with those I love the most and it made me so happy.

Throughout the evening, I had moments where I thought of my organ donor and family and gave silent thanks for the gift they have so selflessly given to me and my family. Without their support of organ donation, this celebration would not have taken place. I do not take it for granted. Sunday we will go celebrate one of my nephew's college graduation party. Being there with all my family for celebrations like this or just getting any time together is what means the most to me. I am forever grateful to have gotten my lung and that I am here say that I am proud to be 61!

Blowing Out the Candle on My 61st Birthday Cake!

"Forever Young" - Bob Dylan

Sunday, July 3, 2016


I haven't posted in a while. I've had my challenges and didn't want to put up a post that sounded all negative. But nobody said this (being a transplant patient) would be easy.

The good news is my lung is doing well. I'll be going on July 19th for my quarterly transplant check up. They'll give me a good going over and make sure everything is going as it is supposed to.

But I've been having my struggles. Mainly having to do with exercising and trying to regain my strength. I have been working and exercising 4-5 days a week for 18 months and feel I am not making the progress I should. I've been experiencing significant pain in my legs and I would never recover from a workout as one should. The pain got so excruciating that it was keeping me awake at night until 4am and I could not sleep. Walking around the house even felt wobbly. 

The last straw was a 3 mile walk I went on one day and I have never felt so bad as I did that day. My legs felt like they were going to give out on me and I did almost collapse a few times; I was so short of breath I had to stop 6 times, even going to my brother and sister-in-law's house looking for a ride home. Sadly no one was home (I thought it was Saturday thanks to med-head when it was Friday so everyone was at work). I sat on their porch in the shade for a little bit and started out again for home. 

It was the worst walk of my life, pre or post transplant. I have never had an experience like that. I almost sat down on the grass in one of our parks and would have stayed there until I could find someone to drive me home. But I wobbled my way to our house and made it home. 

I had a good drink of water, took a shower (holding myself up by the grab bar) and then took a nap for several hours. By then I knew it was time to contact my Transplant Nurse Coordinator. We had a long conversation about my situation. Every transplant patient is different. Some recover their strength back quicker than others and others never return to where they were prior to transplant. It appears (and they want me to accept this may be my situation) that I am not ever going to be the way I was prior to getting sick. 

My Coordinator said it's possible having only one lung can have an impact on STRENUOUS activity like exercise. Not all do, but it's possible and it makes sense to me. They can't really say 100%. Also my legs may never be the same. I was told what I've been doing is more than most and they know how hard I've been working, which they feel has been a good thing. But at this point the suggestion was to BACK OFF, SLOW DOWN, and CUT MY DISTANCE. 

So that's what I've been doing. It took almost a week for the pain from that last 3 mile walk to subside. I've cut my distance, going less than 1 mile instead of always shooting for 3 miles. Today I walked .68 miles in 18 minutes. 

I will admit to being very frustrated by these physical challenges. It would be so easy to just say "it's too hard, I can't do it and I give up". I've felt like that several times. But I know what it's like to be completely de-conditioned from a year of being sick while I waited for my lung. You lose your muscle conditioning SO fast and I don't want to ever be like that again. So I pick myself up, lace up my walking shoes and off I go for shorter, slower walks. It's good for me and if it goes as I would like, I MAY be able to make progress and go a bit further and a little faster. I can't push it, but I'm hopeful. 

I am so lucky to have gotten my lung transplant and that things are going well. I am here and will be celebrating my birthday in a few weeks. 

Today is my 20 month Transplant Anniversary; a day worth marking and for giving thanks for the Gift of Life. The least I can do is honor that gift and, even if things get hard and challenging sometimes, always remember the gift I was given and the promise I made to do everything I could to care for that gift.

So if that means, adjusting my mind set and goals, then that's what I'll do. I promised never to give up and so I persevere. 

Sometimes it's hard, but then nobody said it would be would be easy!

"Fight Song" - Rachel Platten

Friday, May 13, 2016


My blog a few weeks ago was about the memorial Candle Lighting Service my hospital holds every year to honor organ donors and their families.

I had a picture of me holding my donor's first name at the ceremony taken and I wrote another letter and sent it through the complex and secret process to the donor family. Just like I had to do when I wrote them the first time. I hoped they would like to see this photo of me honoring their son at this very special service. I want them to know how much his gift means to me and my family.

These communications, due to privacy and the delicate nature of transplant, move slowly. And the family can turn down receipt of the letter. So you never really know if they've received it, but choose not to communicate with you; whether they turned down receiving it; whether it hasn't arrived yet.

I am so hopeful this will be meaningful to my donor's family and that they got it and are deciding whether to get in touch with me.

And so I wait to hear. 

I understand it may be too painful for them to reach out to me. I would very much like to meet them. Their letter to me said they were very interested in meeting the recipients. I filled out the release with my information so they could contact me. But they also have to fill one out and I was told they have not yet done so.

And so I wait.

Maybe they're just not ready. I can understand that. But if they reached out I think they might find someone who is so grateful it would give them some measure of peace. I hope so. I really hope they get this letter and picture and it gets them thinking about connecting with me. I have to respect whatever they decide, but I so want to thank them in person.

And so I wait.

If I do hear back, you can be sure I'll write a Blog post about it! My fingers are crossed and even if I don't hear from them, I pay tribute to their son every single day.

This sits on my dresser in my room so I can remember
every day the gift I was given.

"Forever Young" - Bob Dylan

Sunday, May 8, 2016


It's Mother's Day! I want to wish my wonderful Mother a very Happy Mother's Day! She has done SO very much for me as I struggled first through a chronic illness called IC and then through the scariest time of my life called Lung Transplant! She truly is my "sainted mother" and I am so blessed to have her. So this Blog is a tribute to the very best Mom anyone could have! I am so grateful! HAPPY MOTHER'S DAY, MOM!

To My Mother by Robert Louis Stevenson
You too, my mother, read my rhymes 
For love of unforgotten times, 
And you may chance to hear once more 
The little feet along the floor.

Mom and Me Just Home from the Hospital!
Taking Care of Me While I Waited for My Transplant

One Again Supporting Me;  Both of Us at the Finish of the
Hike for Lung Health Post Transplant

"In My Daughter's Eyes" - Martina McBride

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)