5 WEEKS & COUNTING!

On one hand, I don't know where the the time has gone. On the other there have been times when I felt time stood still.

My Lung Transplant journey begin nearly 2 years ago on November 11, 2013. And now I am only 5 weeks away from the One Year Anniversary of my Lung Transplant.

I just received a letter from the Transplant Team with a long list of tests and doctor visits that I must schedule before or around my Transplant Anniversary Date. October will be a VERY busy month. I had to undergo all these tests before I was accepted for transplant, so it makes sense for them to want to repeat these tests and see where I am one year post transplant. 

Today I just got the results of some blood work I was waiting for and it was good news. Love getting good lab test results! There have been lots of blood tests in this transplant journey and so far most have been all good news. 

I am doing well and will be anxious for the results of all these tests I must have over the next 5 weeks. In November I will also have my one year Bronchoscopy. If all these tests go well, there will be good reason to celebrate.

That is my plan. From the day I got my transplant, I have been hoping to get to one year healthy with few issues and have a party with my family and friends to celebrate this major milestone. This has been a long and winding journey and the most challenging time of my life. But I have worked hard, done everything that was asked of me and am doing well. It hasn't been easy, but has been worth it. 

So the next 5 weeks will be filled with lots of tests and the hope I get all good results. I never mind getting tests. It's how we know what's going on. Is everything OK, or is there something we need to address? So I'm always on board with whatever testing the Transplant Team deems necessary. 

So bring it on! Let the testing begin. I have a One Year Anniversary Party to plan! 5 weeks to go!

Me, September 2015, 10 Months Post Transplant!

Me, September 20, 2015 - Finished the Respiratory Health Association's

Hike for Lung Health!

Check out my story on the Sept. 20, 2015 Hike for Lung Health

that appeared in the Sunday, Sept. 27, 2015 edition of the Lake County (IL) News Sun

http://www.chicagotribune.com/suburbs/lake-county-news-sun/news/ct-lns-lung-health-hike-st-0928-20150927-story.html

The Journey of a Lung Transplant Candidate Video

I DID IT!!

Yesterday was the Respiratory Health Association's Hike for Lung Health 3 Mile Walk, which I had signed up to do back in July. All along my younger brother had said he would walk with me to support me, motivate me and help me with water bottles, since I can't drink from the "community cups" along the course.

I have been training for months and fundraising like a madwoman! Wanted to win the #1 Individual Fundraiser spot. That's not going to happen but I'm #2 and pretty darn proud that I managed to raise over $2,600 for lung health, research and education!

Yesterday turned out to be extra special. This was to be a major accomplishment in my Lung Transplant Journey and I worked hard to be ready. But at the last minute my entire family told me they too were going to walk with me in yet another show of support, as they have done through this entire transplant journey. It made the day so special, fun and I felt so loved and supported.

The weather was spectacular which only added to make the day more special. I met a lot of wonderful people from the Respiratory Health Association and hope to help with their mission.

But as challenging as it was, I DID IT! I achieved my goal and completed the 3 Mile Walk, as did my entire family. What a great day! A year ago I was in a wheelchair on oxygen 24/7 waiting for my lung and couldn't even walk around my house. I got so deconditioned. Getting back in shape when you get that deconditioned, it's HARD work to regain your strength. This Walk was a motivator for me; something to work for.

I am proud of all I have accomplished. The work toward recovery is ongoing. I am not 100% yet and don't know when I will be, if I can ever can be "normal" again. But I will keep working hard on my rehab to regain as much strength as possible.

But I am so proud:  

I DID IT!

Video of Me & My Family Doing

The Hike for Lung Health!

MY JOURNEY: IT'S TIME TO DO THE HIKE!

Since my Lung Transplant on November 3, 2014, I have been working very hard to rehabilitate my body, which had become totally de-conditioned due to the lung disease I had gotten. It's a slow process, starting as soon as I woke up from my Transplant. The hospital gets you out of bed the very next day and sitting in a chair. Something so many take for granted, but following a year of not being able to walk due to shortness of breath and being on oxygen 24/7, getting out of the hospital bed on my own and sitting in a chair, was a big deal! Hard, but a big deal and I did it!

First Time Sitting in a Chair!

Next comes your first walk after surgery. Of course, I was very weak and needed assistance, but every day, the nurses would come, get me out of bed and we would go for a walk and each day we would try to walk a little further than the day before. It's at this point, one thinks, I'm never going to be able to walk like I did before I got sick, but I kept fighting and following instructions and, while it was definitely baby steps, I was making progress.

First Walk!

After I was discharged, my rehab began at home, slowly guided by a great Physical Therapist. At first I had to lay on the bed to do the exercises he wanted me to do. Working my legs to get the muscles to re-awaken after going to sleep for so long. Then after several weeks, we got up and standing to do the exercises. I was clearly making progress, but it was not easy and I always needed a nap when we were done with our hour of exercise.

After about 8 weeks of at home physical therapy, I graduated to Out-Patient Pulmonary Rehab. I was required to go twice a week for 12 weeks with each session lasting an hour. The P.T.'s pushed me to work hard and do more each week. But I was the one that asked when I could start walking on the Treadmill. I was doing well on the machines they had me using, but I felt if I was to be able to really get back to walking, I needed to get on that treadmill. The therapists were pleased and helped me get started. I would use two machines on the days I went there and one was always the treadmill. The P.T.'s would have me increase the incline, speed and time I spent on it. I worked extremely hard and it was not easy. But I wanted this; to be able to return to walking, moving around on my own, was something I dreamed of when I was sick. So I worked as hard as I needed.

Walking on the Treadmill at Out Patient Rehab!

At the end of the 12 weeks of Out Patient Rehab, I was required to do a 6 minute walk. I had to do one at the beginning; they measure how far you can walk in 6 minutes. When I began my Out Patient Rehab after my Transplant, for my 6 Minute Walk, I was only able to walk 684 ft. That was a big improvement over what I could do before my Transplant. Following 12 weeks of Rehab, for my Graduation 6 Minute Walk, I was able to walk 1,337 ft.! A major improvement! I was discharged and told to keep working on my Rehab on my own, especially if I wanted to completely regain my strength and endurance.

I have been diligent in my working out since being discharged from Out Patient Rehab. I either walk outside on days where the weather is agreeable, or I use our community Fitness Center, using the Treadmill or Stationary Bike and doing hand weights every few days. I decided I wanted a goal to work toward and that's when I saw that the Respiratory Health Association was sponsoring their Annual Hike for Lung Health in Lincoln Park on September 20th. So back in July, I signed up to be a walker and my goal was to participate in their 3 Mile Walk. In addition I set up a Fundraising page and set about trying to raise as much money for the Respiratory Health Association, whose work to promote awareness and support programs to promote lung health is so important. So far I have raised over $2,600 and am currently the #2 Individual Fundraiser having been bumped from the #1 position just recently. 

I have been working hard to get ready for the Hike for Lung Health! Walking both outside and in our Fitness Center. Continuing to push myself and how far I was going and how fast I was walking. 

My First 2 Mile Walk Outside!

Doing Weights!

Finished My First 3 Mile Walk!

So today I am heading to the Treadmill to do my last training workout before the Hike for Lung Health on Sunday. I will rest my legs tomorrow and then head to Lincoln Park with my younger brother, who has agreed to be my "walking buddy", and some family to cheer me on as I cross the finish line! I am excited to participate in this important event to help raise awareness for Lung Health and the important work of the Respiratory Health Association. I am very excited that the Respiratory Health Association took an interest in my story and interviewed me and posted my story on their website Patient Stories page. Here's a link where you can read it.

http://www.lungchicago.org/news-human-interest/

Ready for the Hike for Lung Health!

It's been a long, challenging journey from Lung Transplant Surgery, through Rehab and Recovery. I am not 100% back to "normal". I don't know if I ever will be, but I continue to work hard and fight to get my strength back. I have made huge strides and am proud of what I have accomplished. So, this Sunday, September 20th at 10AM (Central Time) I will set off on the 3 Mile course of the Hike for Lung Health. Please cheer me on from wherever you are! I'll take all the encouragement I can get. My goal is to finish the walk in less than 60 minutes. If I do that, I will truly have achieved something at 10 1/2 months Post Transplant that I would not have thought possible a year ago! Here's to achieving that goal! I will post about how things went after the Walk! 

Wish me luck!

My YouTube Video: 

Lung Transplant: From Surgery to Rehab & Recovery

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

Struggling with multiple health conditions and then, very shockingly, finding out I needed a Lung Transplant to live, it would be so easy to just lay in bed and cry. But I didn't want to be that person. I chose to fight and that's why this quote speaks to me so deeply. It isn't always easy, but I have a choice on how to deal with all the struggles that I have been dealt. I make a choice every single day, and I choose to fight and feel blessed that I got my life saving transplant and so much more. I hope it inspires others to make a choice to find those things in your life for which to be all of these things.

"I Won't Back Down" - Tom Petty

(Tom Petty wrote this when he was sick.)

10 MONTH ANNIVERSARY!

WOW! I cannot believe it is September already. The year is flying by and yet at the same time it's hard to believe we are here as some days and weeks seemed to drag.

But today is yet one more important Milestone for me. Today is the 10 Month Anniversary of my life saving Lung Transplant! 10 months since I was given the ultimate Gift of Life! I am still here and doing quite well.

The Transplant Team is happy with how I am doing and I am making progress every day. It's very hard work recovering from a Lung Transplant, but it's worth the effort. A year ago, sitting in a wheel chair, on oxygen 24/7, needing a Bipap to sleep at night (if I could); having to try to sleep sitting up. I  am so blessed to be here.

As many of you know, I am so grateful that I got my Lung Transplant, I have committed to participating in the Respiratory Health Association Hike for Lung Health on September 20th; in just a few weeks. It's a 3 Mile Walk. That may not seem like much to healthy folks who exercise and walk regularly. But it was hard even before my Transplant due to my bladder disease, IC. I have no choice post transplant, however; as I am required to exercise and walk to rehabilitate myself. If you don't promise to do this, they won't give you your transplant. They don't want to waste a perfectly good Lung on a "couch potato" when it could save someone willing to take care of such a precious gift.

I told my Transplant Team that if I was to get a lung, I would do everything they told me to in order to take care of myself and my lung. Someone gave the ultimate Gift of Life to me and I do not take that for granted. So I am walking and preparing for the 3 Mile Hike for Lung Health!

I will have one more Bronchoscopy on my one year anniversary and then I've been told I don't have to have them anymore unless there is something suspect going on. I don't know how often I'll have to see the Transplant team going forward after that as well. A conversation I plan on having in October when I see them.

In the meantime, every month that I can check off the calendar is a good thing for a Lung Transplant patient. Making it to 1 year is a BIG deal in Lung Transplant, as lungs do not have the success rates that all other organs do. So I am happy to be doing as well as I am. 

I have written to my donor family (anonymously through a complex process) to thank them for this precious gift. I finally received a letter back from my donor's family telling me about my donor and saying they hoped to meet the recipients. I filled out the paperwork/release form and had it forwarded to the donor family so they now have my information and I hope to hear from them at some point. I would love to meet them and tell them face to face what their gift means to me and my family.

So today is an important day to me. I mark each anniversary as I reach it, as it is an accomplishment that no one knew that I'd ever make. 

So 10 Months ago today, I was in the ICU after having a Single Right Lung Transplant. Today I am working hard exercising and walking all over the house, running errands, visiting with friends and being with family.

It's a great thing! Happy Anniversary to me!

"I'm Alive" - Kenny Chesney