669 Days!

Posted on April 5, 2012 by NikkisNewLungs

I have been active on the transplant list for 669 days! Hard to imagine it was going to take this long. Although I’m happy I am maintaining my health, the wait seems to be endless.  There are not enough registered donors to help myself and others waiting for organs. I was at a driver’s education class tonight with my buddy Bill talking about the importance of organ donation. You should see the faces on the people when we tell them one donor can save or enhance up to 60 lives! Also when they find out age and most health conditions don’t prevent someone from being a donor. Bill and I are doing our best so that those applying for their driver’s license can make an informed decision about checking the “donor document of gift” box on the their application.

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Vest Machine’s

Posted on April 5, 2012 by NikkisNewLungs

I have seen the progress in technology throughout the years with my vest machine. When I was sixteen and first started using the machine it weighed 110 pounds and looked like this:

It came up to my waist and was difficult to move. A couple years later the newer model was available weighing 35 pounds. What a glorious day when that arrived on my door step. It actually weighed less then I did! Being able to travel on a plane or spend a night away from home was a dream to a lot of CF patients but was now possible. This machine looks like:

These days therapy machines look like an old boombox and only weigh 17 pounds. Advancements sure have made life with CF easier and more convenient!

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Spring Allergies

Posted on April 3, 2012 by NikkisNewLungs

As much as everyone is enjoying the unseasonably early spring like weather in Minnesota those that suffer from spring allergies are struggling. I love spring when everything is blooming and trees are turning green but for me it causes difficulty. A lot of CF people have more issues with allergies because of our sinuses. When I have a stuffy nose because of irritation from a cold or allergies all the extra fluid that builds up drains into my lungs causing an environment for infection. I have noticed the last couple of days I have become a little more congested and also have an increase in what I cough up. Looks like I will have to add more nasal irrigation (like a neti pot) to my daily routine. I already do it twice a day but adding one or two more to try and keep the pollen out of my sinuses may be what prevents me from getting really sick. Even those without CF talk about being congested this time of year and although allergies are inevitable I can do my best to help control them. Good luck my fellow allergy sufferers!

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National Donate Life Month

Posted on April 2, 2012 by NikkisNewLungs

April is National Donate Life Month! I am always asked “what can I do to help?”. You can talk with your family, friends, or co-workers about the importance of organ donation. Including myself there are over 1800 people in Minnesota, North and South Dakota waiting for an organ and over 113,000 nation wide on a waiting list. Why are so many waiting? There are not enough registered organ donors!

In January I joined LifeSource staff, volunteer’s, and Kare11 news to answer questions about organ donation at a phone bank. Email me if you have any questions: nikkisnewlungs@gmail.com

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Feed My Starving Children

Posted on April 1, 2012 by NikkisNewLungs

I had a great weekend. Friday we had a wedding reception for friends that were married in Mexico a few weeks ago. A Minnesota celebration with friends and family that couldn’t attend the wedding. I stayed out longer then I had anticipated and was happy I was able to. It was so nice to spend time with so many of our friends.

Saturday a big group of friends volunteered at Feed My Starving Children  We had so much fun working together packing meals for hungry children in Nicaragua. Together our group packed and paid for over 11,644 meals. Way to go team! Thank you Ben for organizing and this making this happen!

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Blood Clot

Posted on March 31, 2012 by NikkisNewLungs

I was looking at old pictures tonight. I came across photos from one of my blood clots. In October 2009 I had a port-a-cath (or port for short) in my arm. A port is an implantable device under the skin used for the delivery of I.V. medication or blood draws. I was noticing that once in a while my hand and arm would turn purple, not for very long but enough that it was bothering me. It felt like I had a rubber band around my arm. After some time it started to get worse. The thing was everytime I was near a doctor my arm was just fine. I tried to figure out what would trigger it but couldn’t. It got to a point we had to make a of trip to the emergency room. When we arrived the E.R. doctor finally saw the purple hue I was talking about. He ordered some tests, but everything came back normal so they sent me home. Another week passed, my arm started to turn purple more often and for a longer period of time. I demanded they do some further investigating. Your arm shouldn’t turn that color without an explanation. The next morning I had an appointment. I’m laying on the table looking at the monitor as they inject dye into my my vein. Are you kidding me? The flow just stopped! Change of plan for my day, I ended up having an angioplasty. They thread up a device with a balloon at the end. Then blow up the balloon with the intent to stretch the vein enough to have blood flow again. They pumped up the balloon three times and then re-checked with the dye. YAHOOO it worked!

The photo on the left shows where the blood flow stopped, left of the finger. The photo on the right shows normal blood flow again. Thank goodness we did more investigating. I don’t want to think about problems that I could’ve had. We ended up taking out the port. I ended up with another port later on but that story can be another night.

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The Power of Two

Posted on March 29, 2012 by NikkisNewLungs

Isabel Stenzel Byrnes, myself, & Anabel Stenzel

A few weeks ago I traveled to Fargo. I was able to attend a viewing at the Fargo film Festival about a documentary called The Power of Two The story is about twin sisters that both have cystic fibrosis and also both received double lung transplants. I was fortunate enough to meet both of the sisters, Isabel (Isa) and Anabel (Ana), along with some of the film crew. Isa and Ana are two of the kindest, most inspiring people I’ve ever met. Their story is of hope. Not only for those living with cystic fibrosis, but to those waiting for transplants. The documentary also compares the donation system between the United States and Japan. It was beautifully choreographed and has been receiving awards all around the world.

I was overwhelmed by Isa and Ana’s generosity. In between the morning and evening viewings of the film there was a lunch and panel discussion. The panel included the film crew, a Fargo CF doctor, Fargo CF patient who has also received lungs, Susan from LifeSource, and a Fargo liver and kidney surgeon. Isa and Ana asked if I would join the discussion as well, I couldn’t believe they wanted me to take part. The discussion was fabulous and at this point I could hardly wait for the 7:00 viewing. The film was beautifully choreographed and blew my expectations away. I can’t wait for the wide release on cable/satellite and digital broadband on June 5th!

After the viewing I thanked Isa and Ana. I wanted to buy their book but good news for them, they sold out! My copy just arrived in the mail a couple of days ago. Both of them signed it with very sweet words. I am hoping there will be a viewing here in Minneapolis in the near future. I will keep you posted if that is the case.

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Cough Up Blood

Posted on March 28, 2012 by NikkisNewLungs

I will never forget the first time I coughed up blood. I was about nineteen years old. That was back when I was figure skating. As a matter of fact it happened while I was skating. It was the year when Mariucci Ice Arena made its debut on the University of Minnesota campus. We were skating a show for all the major sponsors and contributors. In middle of our program I tasted something funny. Soon to realize I had so much fluid in my mouth I had to spit. I was shocked to see blood on the ice. I thought maybe it was a bloody nose so somehow I found the right move to swing my arm across my nose but there was no blood. I was coughing more and having to spit more when it hit me, it was coming from my lungs. I was starting to get a little scared but as in show business “The show must go on”! I told my skating partner “keep going”! We finished our program and as we were taking our bow I was pointing to my family to meet me backstage. That was when I freaked out. My parents calmed me down and we headed to the hospital. I learned having a chronic lung disease this may happen from time to time. Today was a day I had that funny taste in my mouth. I cough up blood about once a month now. Unfortunately it is something I have come accustom to. The good news is I don’t need to get scared, I understand what is happening. I no longer skate so I have changed my thinking to “the day must go on”!

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65 Roses

Posted on March 27, 2012 by NikkisNewLungs

“65 Roses” is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year-old son, Richard, listened closely to his mother as she made each call.

Weiss Brothers Then
The Weiss brothers, Richard, 5; Arthur, 7 and
Anthony, 16 months.

After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, “What am I working for, Richard?” He answered, “You are working for 65 Roses.” Mary was speechless.

He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.”

Since 1965, the term “65 Roses” has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The “65 Roses” story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.

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Car Wash

Posted on March 26, 2012 by NikkisNewLungs

Just when I think my ribs are feeling a little better I do something silly. I have a bag of oxygen tanks I carry in the back of my car at all times. Today I decided I would have my car thoroughly cleaned and washed. I wanted to remove everything. I thought my body was strong enough to lift the bag of tanks, boy was I wrong! I should know by now not to push things. Tonight when I cough I get zingers. That’s the only way I can explain it, a zing of pain. It prevented me from finishing my hour on the treadmill. I have learned my lesson, I still need to take it easy and allow my cracked ribs to heal completely.

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