Treadmill

Posted on March 10, 2012 by NikkisNewLungs

So I had mentioned earlier today my ribs were bothering me. I’m on the treadmill and it’s a challenge. Exercise is SO important while waiting for a transplant.  I walk 2 miles almost everyday. The thing is exercise makes me cough. Coughing is so crucial for me. I have to get the junk out of my lungs somehow. But….when you have ribs that are hurting it is not easy. It helps if I support them with my hand but even breathing in hurts tonight. I may have some pain but I’m still walking!

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Wiped Out

Posted on March 9, 2012 by NikkisNewLungs

I’m exhausted! The trip to Fargo was unbelievable! I am so happy I was feeling well enough to make the trip. I have lost a bit of my energy lately and will not jeopardize my health if life begins to be too busy. I knew it was going to use a lot of my energy but I also knew I could take it a little easier the next couple of days. Not only did it wipe me out but I have other issues bothering me.

Back in November, the week of Thanksgiving I was sitting crouched over in a chair and I coughed pretty hard and felt some pain. That night I really felt pain. At 3 in the morning I said to Travis I think I have a collapsed lung it hurt so bad. Turns out I cracked a couple of ribs. Actually with all the hard coughing I do it’s unbelievable it hasn’t happened before. They were bugging me before the trip so who knows if the the car ride, the bed at the hotel, or just something I did aggravated them more. I can actually feel them crunch. It is very weird. One of the reasons they have not completely healed is because of all the coughing I have to do. I have heard from a couple of people that have had lung transplants that some of the worst pain comes from the cracking of the ribs they must due during surgery. Apparently I wanted a preview!

Another issue that I have had in the past is vertigo. That too has decided to reappear. It was caused from a CF drug called Tobramycin. It caused severe vestibular disease. When it first occurred it was awful. I was so dizzy (no need to insert blonde jokes). I couldn’t have my eyes open, and if I closed my eyes it felt like I was spinning right off the bed. With all the illness issues I have endured Vertigo was definitely one of the most debilitating. I wasn’t able to drive for almost a year. My family stated calling me Daisy as in the movie “Driving Miss Daisy”. I finally went to the balance center and found exercises to re-train my brain. I have not done them in quite a while so maybe some of this is my fault. Looks like I am adding those exercises back into my routine. I look at the letter “B” on a post-it note taped to the wall. Then shake my head while trying to keep the “B” in focus. Doesn’t take long but one more thing I have to do.

On another note. If you live in the Twin Cities area tomorrow 3/10/12, I will be on KSTP channel 5 on the morning news cast speaking with LifeSource about organ donation. From what I understand it will be airing between 8:30 & 9:00a.m.

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Traveling

Posted on March 8, 2012 by NikkisNewLungs

It takes a little extra effort to travel not only with CF but while being on the transplant list but it is possible. You can’t travel or live too far if you are currently active on the list. You have about a 3 hour radius. You need to contact your transplant coordinator, notify them you will be out of the immediate area, and make sure you are available at all times whether it is a land line or cell phone. There have been only a couple of times where that has prevented me from going somewhere. Although cell phone towers are expanding there are still some areas that I cannot receive service. I was suppose to stay at a friend’s cabin in northern Minnesota but could not get a signal on my phone so we had to leave and stay somewhere else. Just part of the deal.

I was lucky enough to travel to Fargo yesterday for 1 night only. Once in a while, if it’s for a short time and my coordinator approves it I can go a little further then 3 hours. I mean a little, 3.5 hours. There was a special showing at the Fargo film festival “The Power of Two”. An inspiring documentary featuring twin sisters living with CF that have both received double lung transplants. I feel so fortunate I was able to attend.

Packing is another thing even if it is just for an overnight as you can see in the photos above. I have many medications, devices, tubing, cleaning supplies, accessories, and oxygen tanks that have to be counted for. Forgetting one thing can be enough to have to turn around and come home. I have come up with a checklist which is very helpful. I also have to make sure all my equipment is working properly. Another thing I have to consider while using oxygen is that I have enough with me. Being stranded by weather, car troubles, or staying longer than anticipated are all things to think about.

I don’t travel lightly (or far) with all my equipment and it takes extra effort to prepare but it is possible. I feel while waiting for “the call” I can’t put my life on hold. As long as I am feeling well enough to get out a little I darn well will!

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Welcome!

Posted on March 7, 2012 by NikkisNewLungs

I’m starting this blog to simply share my story. To educate about living with cystic fibrosis while waiting for a double lung transplant. I’m hoping that it will encourage and comfort others while waiting on a transplant list. Life still must go on as normal as possible while waiting for a call that an organ has come available.

I will be sharing the trials and triumphs of trying to stay healthy before transplant. I will also post pictures and videos of my life while anticipating my new lungs. I’m an honest and open person and talk from the heart.

As you read this blog please understand a few things. As I speak about my daily life I am not looking for sympathy, I’m not looking for pity, & I don’t want anyone to feel bad. I am only sharing what I go through on a daily basis. Everyone has challenges some of us just have a few more. I hope you enjoy experiencing my journey while waiting for “the call.”

~Nikki

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