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Also Read about How This Has Changed My Life

This is the story...

Let me just start by saying that I've been a Type I (insulin-dependent) diabetic since I was 10 years old. I'm currently on an insulin pump and pretty much have my bloodsugars "under control". That was nothing compared to what I'm going through now. After this, I believe I can handle anything!! (The lung problems I'm having are completely unrelated to my diabetes). Oh, and I've never smoked a day in my life. Go figure. So if you only have diabetes - don't complain. : ) And if you're a smoker - STOP!! Love your lungs...

So... I've had breathing problems for the last 2 years or more. It started with shortness of breath, and I just thought I was out of shape. I started going to doctors, and they thought it was just anxiety. Finally, when I was sick, they did a chest x-ray, but didn't see anything too unusual. They prescribed me an inhaler and some other medications to help. It didn't help.

I went to my primary care physician as the symptoms got worse. I had shortness of breath upon exertion... and it was all the time. I knew this wasn't anxiety. I convinced her that further testing needed to be done.

My family has a history of heart problems, so she wanted to rule that out first. She had me do a stress test to see how my heart muscle was functioning. I only lasted about 3 minutes on the treadmill, because I couldn't breathe and they had to stop the test early. But the cardiologist said my heart was fine, so he passed me on the test. Now, I know I'm not THAT out of shape... shouldn't that have thrown up a red flag?

So my doctor decided to order a pulmonary function test. The results came back that I had mild asthma and they put me on some more inhalers. They said anxiety probably made it worse. I was still not a believer. This was REALLY bad. I would get shortness of breath just walking across the room or even rolling over in bed.

She referred me to a pulmonologist. When I got there, they did a walk test on me to see what my oxygen saturation was. 98% is normal for someone of my age. Mine dropped down to 77%. The doctor freaked out and ordered an emergency CT scan. He thought I might have a blood clot, so they would just check me in to the hospital over night and put me on some blood thinners and I would be good as new!
Not the case.

After the CT scan, I went back up to the doctor's office (it was at the hospital). The moment after that changed my life forever. He called me into his office where he and the other doctor were looking at my results. The other doctor told me that I had pulmonary fibrosis and needed a lung transplant. I laughed. You're kidding, right? No. Not kidding.

My face turned white and I almost fell over. The nurse grabbed me and put me in a chair as shock set in... I started shaking... My mom was with me and I didn't see what happened to her, but it was about the same reaction. We both started to cry. They ordered oxygen to be delivered to my house by a Home Medical Equipment company.

Everything after that was kind of a whirl-wind. They put me in a wheelchair and my mom got my car to drive me home. Brian was working and I called him and told me to meet us at home because we needed to talk. I couldn't tell him over the phone.

The doctors gave me a referral to Shands Hospital in Gainesville, FL to get a second opinion and get on the lung transplant list. My mom explained it to Brian... I couldn't even speak. He spent the next several days calling and explaining it to family and friends. I called work and told them I wouldn't be in the next day... or ever again. I haven't looked back since then.

At Shands, I was actually diagnosed with an extremely rare lung disease called LAM (lymphangioleiomyomatosis) by Dr. Harman, the Chief of Pulmonology. She said it was "textbook LAM". The medical student that was working under her even asked her if she could keep a copy of my CT Scan, because she had never seen it in real life before. I obliged.

Here is a short video about emphysema, which is similar to what I'm going through, except my blockage is caused by cysts growing in my lungs - not from damage caused by smoking. Here is a picture of a LAM lung compared to a regular lung. Read the LAMHandbook.pdf for tons of more info.

LAM is so rare that most of my other specialized doctors haven't even heard of it. When I go to doctor's appointments, I find myself having to educate THEM on my disease. It makes it difficult, because you don't want anything else they're doing to interfere with the disease.

My doctor at Shands wanted me to do an experimental study, but I just wasn't ready to make that decision. Since LAM is so rare, there is very little known about the disease. There is no known treatment or cure. She said she wanted me to do the study, and then if that didn't work then we needed to talk about a lung transplant.

For the next several months, I went through pulmonary rehab, tried holistic healing methods and a lot of praying. I kept getting worse - and I finally had a mental break-down. I was ready to do something different.

I asked for a 'sign'. I wasn't sure what to do. The next day, I was shopping with my mom. I had my oxygen on and a gentleman approached me about it. Turns out, he had a lung transplant because of pulmonary fibrosis 12 years ago at Shands. His brother had one 3 years ago for the same thing. He and his wife were able to put me at ease about the whole thing. He said it was the best thing that he had ever done! He said there's no better feeling than taking that first REAL big breath after surgery. That made it all worth it for him. He was on the transplant list for 2 months and his brother was on for 5 months. We exchanged numbers and I will be in touch with him & his wife during the whole process. That was the sign I needed.

I'm just ready to be healthy again. I'm at the point where I'm on 6-7 lpm of oxygen 24/7 and portable oxygen isn't really convenient enough for me to go out... so I stay at home most of the time. I can't do anything too physical around the house, so it's hard to keep up with things. I get REALLY out of breath when I exert myself. It takes me several minutes to catch my breath again... all from walking across the room. But I do have to get strong again, and I'm trying to get on the treadmill for at least 5 minutes a day to help me get stronger for the surgery. I have also been doing yoga (one-on-one) to help with strength and mental relaxation.

I was put on the lung transplant list at Shands Hospital in Gainesville, FL on June 3, 2008. One of the best phone calls I have ever gotten (the next will be when I get the call for my new lungs). I have had a lot of trouble sleeping lately and my breathing has gotten more labored, so I just started taking xanax which has really helped. I don't like taking medications like that but I'll do whatever I have to do to get through this.

We have the car packed and ready to go for when I get the call. I have checklists and I'm pretty sure that I haven't left anything out. I'm 100% ready now.

I'm just doing everything I can to get ready for the surgery so I can have a quick recovery and can get back to my life. I owe it to my family and friends... and especially my loving husband who has stood by me through all of this. I couldn't do it without him. He is doing double-duty right now by going out and working to support us and then coming home and making dinner and cleaning up and taking care of me. I really think if anyone is the strong one - it's him. He is holding us together right now and I owe him a great vacation after I get better!

But, seriously, this is the best thing that has ever happened to me. I was so miserable before my diagnosis, life just wasn't right... and now I have a whole new lease on life and the things that used to bother me just don't anymore. I love my husband in ways I never thought I could... I'm genuinely happy and excited now about getting my new lungs. (Don't get me wrong... waiting as my health gets worse is very difficult... but that's my health... mentally I'm better than ever.) I feel like a totally different person than I was a year ago. I have also been able to meet some really amazing people because of this. I've made some friends for life. I have been able to see God bless my life in ways I never thought I could. I truly have something to live for now.

To read what else has happened with the lung transplant doctors, etc. Register for my CarePages website. You will get e-mail notifications whenever a new update is added. You can also read past updates to see what has been going on. The link should take you directly to my page after you register, if not - search for my CarePage name: abreathofhope.

I think it's the right decision and it's been a long road... with even further to go but I feel good about it. I know I can make it through this.

On June 3, 2008 I was put on the lung transplant list at Shands Hospital in Gainesville, FL. Please pray that I get my new lungs quickly!

Please keep me in your thoughts and prayers!

How This Has Changed My Life

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