If you’re looking for something to do this coming Saturday, October 4th, the Breathe Easy Music Festival benefiting Cystic Fibrosis is an excellent choice! The event is being held at Mill City Nights downtown Minneapolis, with local headliner Chris Hawkey and National headliner Sister Hazel. There are two stages and fifteen different bands! There is plenty of time to catch some of your favorite music since the event runs from 4:00 p.m. to midnight. I spoke at this event in 2012. I am honored to be asked again to talk a few minutes about living with CF. Not sure on the exact time I’m speaking but I will let you know. If you would like more detailed information about the full band and acoustic band lineup, or to look at the online auction, here is a link to the website Breathe Easy Music Festival

Me speaking at Breathe Easy Music Festival in 2012

Last week I had my annual studies. It is not too different than the usual lung function tests (PFT’S), X-Ray, blood work, and doctor’s appointment. They add a lot more tests to the blood work and every two years I have a Dexa scan. This year I was due for my scan. A Dexa scan is sort of like a X-Ray that measures bone mineral density checking for osteoporosis. Instead of standing, you lay down while the scanner passes over you. You don’t feel a thing and it doesn’t take long.

Picture of a Dexa Scan

This cough I have been complaining about turned into a productive cough meaning, I have been coughing up sputum again. I’m having flashbacks of the “old days” with my old lungs. This last Friday I started doing some antibiotics with a nebulizer. Before I “smoke” my antibiotic, I start with Albuterol to open up the airways. People would always ask if I had side effects from doing Albuterol four times a day. I never used to. The funny thing is now that my body is not used to inhaling it on a regular basis, I sure feel it! I was trying to hold a piece of paper immediately following a treatment. My hand was shaking so badly I had to set the paper down. I’m taking it twice a day and in about two hours the shakiness wears off.

“smoking” my neb

Unfortunately, my PFT’s have declined. I was concerned about that with the cough I have been experiencing. My doctor didn’t seem to be too worried. My doctor also checked for something called RSV (Respiratory Syncytial Virus) a virus of the respiratory tract that causes wheezing. Luckily, yesterday, that came back negative.

The longer term plan was to wait for the RSV results. Thank goodness it was negative. Now I am to start taking a bump in steroids a.k.a. Prednisone. The reason we had to get the results back from the RSV test first is because a higher dose of Prednisone can weaken your immune system. I was going to need every bit of fighting power in my body if I had the virus. I was to return in one week and repeat my lung functions.

Today, I did repeat those tests. My PFT’s dropped again! I’m not a happy girl. This is the first time since my new lungs that I have had a significant drop in lung function. I will have to wait until tomorrow to see what the next move is. I started Prednisone this morning, maybe we will give that a chance to work before any drastic measures are taken.

This last weekend, Travis and I spent some quality windshield time together. He had to travel for work and I decided to tag along. We started with a four and a half hour drive to Grand Rapids & Bemidji, MN on Friday. Saturday we drove another eight and a half hours to Amberg, WI and on Sunday, a couple of hours on to Green Bay, WI.

We are Minnesota Vikings fans through and through, but since we were in the area we decided to go to the Green Bay Packers vs. New York J.E.T.S, Jets, Jets, Jets football game. To clarify, we did not cheer for green and gold! After the game we drove another half an hour to Appleton, WI. Monday, Travis had a meeting then I dropped him off at the Appleton airport. He flew to Ohio & West Virgina for more work (he is a busy man). I drove another four hours home.

We were very fortunate along our travels to stay with friends. It is always more exciting to spend time with people you know and haven’t seen in a while than to stay in a hotel room. Thanks to John, Dave & Annette, and the Thomas family!

Before our travels, I embraced a new milestone. My latest milestone was the amount of luggage I need to bring with me when traveling. The last time I posted a picture of my luggage was on March 8th, 2012. That picture showed everything I needed to bring for one overnight. I forgot there was actually more back then. I also had a bag full of oxygen tanks.

March 12, 2012

This is all I had to carry with me for four days! Without all the equipment and oxygen I used to have to lug around, I was able to bring one bag for clothes and one bag for my medication, blood pressure machine, thermometer, etc. Two little bags! Another reason I am so grateful to my donor to be breathing with new lungs.

September 12, 2014

Speaking of lungs, I have a health update. I have been coughing for a couple of weeks. We started an antibiotic this last Friday. Something I have not experienced since my transplant, I have been wheezing. I have to admit, I don’t like it. It concerns me. Fortunately, I have a doctors appointment tomorrow. I have a feeling my lung function may have dropped since my last check up. I will keep you posted.

Oh, and I tested positive for CMV (Cytomegalovirus) again. CMV can be a big problem. As long as we catch it in a timely manner, it is actually a good thing. Every time I am positive, I am building antibodies. Maybe someday I will have grown enough antibodies to ward off the virus on my own. Luckily, I have not felt any symptoms yet.

An easier explanation for you to understand this may be, once you have had the chicken pox you have antibodies towards chicken pox. Most likely you will not get chicken pox again because your body has built the antibodies against the virus. That is what I am wanting to happen with CMV.

Before my one year lungiversary I dropped off a letter at LifeSource. Because the gift of life is an anonymous donation, LifeSource is the mediator who puts me in connection with my donor family. I sent my condolences and also expressed my gratitude for the second chance of life I have received. I explained how their loved one’s legacy lives on and listed many of the things I am now able to do. I included the fact that everyday I put my hand on my chest, take a deep breath, and thank my donor. I hope someday I hear from them and will be able to thank them in person. This was the second letter I have sent my donor family.

Before I headed off to LifeSource, my mom stopped by and surprised me with a gift for my donor family. She had knit a wrap for the family. LifeSource has a program called Wrapped in Hugs. It provides homemade knit wraps to donor families at the time of their loved one’s donation. She also knit another wrap for a grieving family that will be in need of comfort. Thank you mom, you spent many hours making these touching gifts. If you or someone you know is interested in knitting or crocheting a wrap for a family in need of some love, here is the link to the website Wrapped in Hugs

I LOVE CARTWHEELS! I have not been able to do a cartwheel in a very long time. I wanted to save the moment for my lungiversary. It was about ten minutes before midnight on the 27th when I remembered I wanted to do this. It’s a little dark but here is a quick video of my first cartwheel since my transplant. Trust me, I will be doing many more cartwheels!

One year and a day after my transplant I was able to do something I never would have had the energy to do the last several years. We hosted a party. A group of our girlfriends get together every month and we usually choose a different restaurant where we all meet. This party idea was hatched in July when we were headed to Lobster Night at the restaurant Lord Fletcher’s. That was the day the boat broke down on the way there. Six of us girls were on our way to meet a few others when we ended up being stranded in the middle of the lake for an hour and a half. We knew we weren’t going to make it to Fletcher’s to meet up with the other girls so while we were drifting, we decided I would be the host in August and we would have a lobster boil.

Since this was going to be a big deal flying in live lobster in coolers, we decided we should probably include the guys too. We had a good old fashioned lobster boil with 41 live Maine lobsters, red potatoes, Minnesota corn on the cob, polish sausage from Koshar’s sausage kitchen, cole slaw, corn bread, and we included a couple of cakes to celebrate Travis’ 40th and my 1st year with new lungs.

We got some cute decorations that included lobster traps and fish netting. It started with lobster races and it ended with good times!

Today, I celebrate one year with my new lungs. It is hard to believe a whole year has passed since my transplant. 365 days ago at this exact time, I was lying on an operating room table with one diseased, worn out lung. My other lung had been removed from my chest and replaced with a new, healthy lung. Within a few hours, the second new lung would be transplanted and with it would come an entire new lease on life.

I am so grateful to my donor who selflessly gave the gift of life to someone they never met. I am blessed to have the love of my life encouraging me and supporting me though this journey. Wow, has it ever been an amazing adventure so far. That comment also pertains to all of you, my family and friends who have been by my side.

I want to thank everyone following this blog and my journey through life. Your words of encouragement have helped me in a way you will never know. Thank you for your continued support. Thank you for your comments, text messages, emails, etc.

A year has passed and I am now running up stairs, carrying groceries, dancing, hula hooping, riding a bike, golfing, entertaining at our house, walking our dog, exercising, and enjoying life. This is all possible because of the generous donation of a very special individual that I think of every day. I continue to put my hand on my chest, take a deep breath, and thank my donor daily for the greatest gift of all -the gift of life.

My gratitude towards my donor for this second chance at life is immeasurable. Could you please do something for me today. Please take a moment to think about my donor and their family today. As I am celebrating a milestone, there is a family that is grieving. Thank you.

Each day is a gift. Cherish it. I do!

We went to the State Fair on Thursday night. It was the first time in seven years that I didn’t have to lug around an oxygen tank. The last couple of years Travis had to carry my bag because we had to carry such a large tank in order to have enough air for me to walk around for a couple of hours. This also meant I was tethered to his hip, literally. It was liberating to just walk around amongst the crowd without worrying about my oxygen tubing getting caught on something or someone.

For the first time in years I climbed the 102 stairs to the top of the Giant Slide without stopping! I didn’t have to stop to breathe and let the people walking behind us pass by. I walked all the up to the top in one shot.We even saw a couple of Turkey’s!We have had a great time celebrating Travis’ 40th birthday. It started with dinner on Wednesday night with family, the State Fair on Thursday, and last night was “date night”. We pulled into the parking lot of an industrial building and he asked “what are we doing”? I surprised him with a night consisting of dinner on site with a personal defense, flashlight defense, and personal handgun fundamentals class. Yes, I know I am the romantic type 🙂 Nothing like getting yelled at to hand over your wallet and shooting guns to celebrate turning 40. I’d say we did pretty good, both Travis and I shot directly in the center!

Sweetheart, congratulations on turning twenty with an extra twenty years of experience!

What a lot of special wishes
This 40th birthday message brings.
Wishes for a day that’s filled
With the very best of things.
And for a year that sees
Your fondest hopes come true.
And every wish is warmly meant
Because it’s meant for you.

Happy 40th Birthday. I love you!

My primary physician told me that if my sinus surgery wasn’t an urgent necessity, he would like to give me a break from surgeries for a little while to allow my body to heal. I had an appointment to see my ENT (ear, nose, & throat) doctor last week to find out if I really needed the sinus surgery. Well, I have great news to report. Unless I start becoming symptomatic, I don’t need to have the surgery for a while! Also, It must be my new lungs because normally when the air has a high pollen count, I am miserable. This year I haven’t noticed any allergies.

I have been just as busy as the last time I posted. I am not complaining. I am thrilled to have enough energy to see friends I haven’t seen in a long time, attend a birthday party, and go to the play Evita this last week.

Since my latest surgery in June I have not spoken at a drivers education class about the importance of organ, tissue, and eye donation. Tonight I was able to do just that. It is one of my favorite things to do.

The last couple of months have been rough but I am thrilled to have spent eleven months breathing with new lungs. On July 27, I took a deeper breath then I had on June 27. My lungs are not finished fully expanding. I am looking forward to reaching full capacity.

I have the use of both my arms again! Last week my doctor gave me the all clear to remove my sling and start using my right arm again. I had an ultra sound to see if the blood clots in my arm are still lingering. No word on the results yet. If I had to guess, I would say they are still there. I still have a weird feeling in my right arm when I move it around a lot.

I apologize it has been a while since my last update. My life is so different this summer compared to the last number of years. To put it simply….I can breathe! No oxygen tubes holding me back, no treatments, and I have energy!

This last week was jam packed with fun. Sunday through Tuesday I was thrilled to have extended family stay with us (10 people to be exact) as we celebrated Brady joining the Army. We are so proud of him as he volunteered to serve our country. He will be training to be a Combat Engineer. We were honored to have spent time with him before he flew off to basic training. On Tuesday, my cousin David, Michelle, and my twin nephews Liam and Henry drove in from Winnipeg for a family vacation. The boys are almost seven years old. The last time I saw them was five years ago. They have grown up so much. We went to the Mall of America and ate lunch at the Rainforest Cafe and spent some time at the Sea Life Aquarium. The next day we visited the Children’s Museum. Thursday we took them on their very first boat ride and they even got to Captain the boat. After the boat ride we enjoyed dinner on the deck with my mom, dad, brother, Dana, Lauren, and the Canadians.  I also squeezed in some girl time. Thanks to Captain Travis, he drove the girls to dinner. Well, after the boat over heated and stalled in the middle of the lake. We were floating towards shore but the engine cooled and the boat re started. He got us all to land safely. Phew, no wonder I was exhausted on Friday. I’m getting tired writing about everything I have done this last week. I also spent a night out with Dana, enjoyed some time by the fire and then, my brother surprised us all with personalized Coca Cola bottles. I’m sure it took some searching to find all of our names. I’m enjoying breathing, living, loving life.

Travis has started calling me Nemo. Every time we are near water either on the dock or going for a boat ride with friends he tells me not to fall in the water because he doesn’t want to fish me out. The good news is if I were to fall in, I wouldn’t go far. Because my arm is still in a sling, I would only be able to swim in circles!

I am doing SO much better! Last Tuesday I finally came around. I don’t need pain medication anymore and I finally feel like myself again. Besides not using my right arm, I am doing very well. Since I have been feeling better, I have been taking full advantage. On the fourth of July we took a little boat cruise with Shane & Danielle, stopped at the neighbors for a party, then watched fireworks from the lake. I have gone out with some girlfriends, been taking Rosie for walks, and since Lauren is still staying with us, we have had her friends sleep over.

Me & Danielle

Dana & me

Swamp Monsters Lauren & Maddy

Love these girls!

We celebrated Rosie turning 10 years old on 7/11. She had the best birthday a dog could have (she isn’t spoiled at all). We went for a walk were she chased squirrels, had a little swim in the lake, and a car ride to get a chewy bone. After a great afternoon, we took her out on the town. We brought her back to her Irish roots to an Irish restaurant, Jake O’Conners, were she enjoyed some cheese from the cheese plate. Then walked down for ice cream so she could enjoy a pup cup, and topped the night off at the Excelsior Brewery getting tons of attention from all the patrons. LUCKY DOG!

Our fabulous city was chosen to host the All Star Baseball Game. We were fortunate enough to attend the only party the Major League Baseball Association hosts. It didn’t start until 10:00pm this last Sunday. We weren’t sure what to expect. Turns out we had a free concert from rock stars B.O.B and Nelly. A great time was had with a large group of our friends. Although getting home at 4:00am made Monday a little slower then usual.

Kathy & me

Today, I had a check up with my lung doctor. I was shockingly surprised to find my lung functions were slightly better then my last doctor’s appointment. I figured after laying around so much after my surgeries I would have lost some ground. Before, with my old lungs, if I had not been active for even a week I would have been so congested. That congestion may have turned into another hospital stay. Another reason I am so grateful to my donor for my new lungs.

Have a wonderful weekend!