one day at a time . . .

Feeling Awesome !!!

I can’t believe how I just abandoned this blog since transplant. The first year was a slow recovery and dealt with depression. Then I tried to activate the 2 step authorization on wordpress and it totally messed me up and I couldnt get in! I finally contacted support and got the whole thing deactivated. 

So, here I am, almost 2 years post transplant and I’m feeling amazing!! It’s just amazing how as time passes I just feel better and better. Yes I had 4 pneumonias in the last year as well as several bronchial tube dilations, but I’m crossing my fingers hoping for a good stretch of feeling great!

The CF walk is coming soon and this year our team is supporting CF as well as a new foundation; The Lung Transplant Foundation. Their mission is to fund research dedicated to chronic rejection, specifically BOS, as well as spreading awareness for organ donation. A CF cure would not benefit me now, but because of my connection and the fact that my son and some relatives are carriers, I cannot let it go. Chronic rejection is my demise now, so research in that direction is critical for me.

I hope to keep up with my posts. We shall see🙂

TYB 6.6.12 ♡donate life♡

Just Reminiscing

I thought I’d look back at past posts pre transplant. I’m amazed at how soon I forgot how sick I really was. I mean I realize I was at end stage lung disease, but the details of the med reactions, the level of breathing difficulty, the emotions I went through. Here I am, almost one year post transplant… I can breath… I don’t cough anymore… I have more control over my life… it’s just amazing.

I wish I could go and talk to myself pre transplant and tell myself that its going to be ok… you will breath like a normal person… you need the transplant or your life WILL end.

I’m still worried about rejection. I understand that barring any other complications, rejection will take my life. But look, I just had almost a year of life that I wouldn’t have had. Every day is a gift and more time with my family. I made it to the first statistic – 90% live to the first year.  Now for the next statistic – 50% live to 5 years. If you think of it that way, it’s pretty scary. I have to work on not thinking of myself as a statistic. I have transplanted friends   that have lived over 10 years, and the stats were worse at the time of their transplant.

I’m enjoying life… I have an 18 year old that drives  me crazy. And it’s all good.

My donor, Bernadette, saved my life and I am forever grateful.

Did you notice, I added a Part IV to my story.  Take a look. It’s above this post!

As time passes …

I know it’s been a while since my last post. It’s been rough. I’ve been on and off IVs and am now on the worst one ever, the polymyxin.  Started it Wednesday night after a little over a week on another IV med.

I did get a CALL for lungs on Wednesday, May 16th. It was a very bad breathing day for me. I woke up breathless, it was very scary. My husband had to get me the liquid o2 so I could put it up to 15L. It was a scary episode. And when the call came at 4pm, I just didn’t know how to feel. Just anxious I guess to get to the hospital. I was so short of breath, it was hard to change, and even just move.

When I got to the hospital I actually had to wait for a bed! Wait! What! Lungs can’t stay out of the body for very long! But what I hadn’t realized is that my donor hadn’t passed yet. It was a cardiac death, which means they were brain dead and the family decided to pull the plug. The “pulling” of the plug occurred much later. What happens in a cardiac death donor is they pull the plug, allow their heart to stop on it its own, the doctors CALL the death, then they get rehooked up and brought back to life to ensure the organs are still working and they now have time to harvest the organs.

I was in a room for a couple of hours, had my blood drawn and ekg. Then a call came in to the dr and they literally ran me in my wheelchair to the ex-ray floor. Literally running! I thought – this must mean it’s a go! I was the primary for the lungs! Then they ran me to the holding area and took more blood. After about another hour we were told that the lungs were no good and we simply went home. So I got the call at 4pm and was told it was not a go at about 10pm. All the family that had gathered at the hospital were disappointed, but for some reason, I was OK with it. I felt that I didn’t want any old lungs! And I still had so much to do in preparation for the Great Strides walk that was the following Sunday! We ended up raising over $50,000! Unbelievable! I had 89 team members at the walk. It was awesome, however I was declining.

Now, 5 days after the walk, and with this horrible medicine, I am now truly anxious for a suitable donor. I am so hoping I get the CALL this weekend. I am asking for prayers and prayer chains from anyone that can!

End stage lung disease is truly ugly. You are so limited. Coughing like crazy, breathless all the time, attached to an oxygen leash, and so many worried family and friends.

Please… Let this end soon… I need my new life to begin…

I can’t wait to take a deep breath… to run… to play with my niece without running out of breath… to show the world what I can do with the donated gift of new lungs…

one day..

I will..

Hopefully real soon…

As I wait for my call for transplant, it occurred to me that I will be entering a brand new world. I don’t ever want to forget where I came from. I fought to get to this point and in my “new” existence, I don’t ever want to give up either. By reminding myself of my struggles, it should help me fight…

So, here goes… Don’t ever forget…

  1. Waking up every morning assessing how my breathing and cough was
  2. Doing chest physical therapy every day 2-3 times daily – right after I wake up, sometimes during the day, and right before going to sleep
  3. All the nebulizers, mixing colistin, pulmozyme/tobi/cayston in the fridge, cleaning all the mouthpieces – ugh!
  4. The coughing that got so bad near the end that I couldn’t breath afterwards
  5. The enormous amount of mucus I coughed up
  6. The 24/7 oxygen – how fast the need climbed from 2L to 8L – the planning to ensure I had enough to go out with – making sure I had backup
  7. The breathlessness with every effort
  8. The inability to shower because standing in the shower made me breathless and I had to keep my oxygen on, so I had to resort to baths
  9. How the dependency to oxygen pretty much kept me confined to being home – it was just too much work getting out
  10. The twice a week pulmonary rehab with the older folks
  11. The constant concern from family members
  12. The limit on my son’s schedule – not being able to go see him on his track meets, take him places.
  13. The worry it all put on my son – he shouldn’t have to deal with a sick parent
  14. The constant hovering of my parents. I know it was all out of love, but it suffocated me at times.
  15. The stress on my husband – the only one actually watching the things I hide in public – the breathlessness, nasty coughing…
  16. Not being able to run.
  17. Sleeping with 6 pillows
  18. Not being able to lie flat on my back as it would trigger hemoptysis (bleeding from the lungs)
  19. Being transported in a wheel chair when going out
  20. Watching my pulmonary functions take a dive and not being able to anything about it
  21. Making the realization that I actually needed a double lung transplant

This is what I could come up with in about 15  minutes. I’m sure there are many more, but these are the highlights.

Looking forward to getting my newbies and finally being able to RUN !!!!!!!!!!!!!!!!!!!!!

Waiting for the call…

It’s only been 3 weeks since I’ve been listed, but it’s amazing how I just continue to decline. I’ve been on several different IVs for about 3 weeks now. I’ve been bumped up on the list for my blood type and I’m next in line for my size. I never thought I’d move up the list so fast, but I’m at the point where each day is such a struggle. Breathing has become so difficult. It’s so hard to just get out of the house for pulmonary rehab. I can remember when I used to say I don’t ever want to have to have a transplant. But, getting to this point, I understand that it’s now my only hope. I feel like a shell of a person, just surviving day to day waiting for the phone to ring. My quality of life really sucks.

I hope that call comes soon…

I hope I don’t reject…

I hope I live for many years and learn to enjoy the simple act of breathing…

I want to learn how to run… to move… to just be free…

I think of my unselfish donor daily. It’s weird waiting for someone to pass on, but I keep telling myself that they would have passed regardless of my need for a transplant. They we just unselfish enough to save the lives of several strangers while their family and friends are mourning their passing.

Until next time…

 

LISTED

It’s official…

As of 3pm today, 3-6-12, I have been listed for double lung transplant.

Started ivs yesterday. Just short of 2 weeks after finishing my last ivs.

Thus is how it will be until the surgery.

It’s wierd waiting for some innocent person that was generous enough to sign up as a donor, to pass on.

I told my son, who’s a runner, that after I get my new lungs I want him to teach and train me how to run. I really want to be able to run! That will be my first goal! Running… Seems so simple, but I haven’t been able to in many years…

* DONATE LIFE *

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