Breathing. . .It’s A Good Thing!

When I first started this blog I mentioned in my profile that I was a double lung transplant recipient.  That’s true!  I have been breathing with new lungs for just over 6 years now.

It’s hard to believe that 7 years ago I was dying.  I was on oxygen 24/7. Living in those days was really not living, it was existing the best way I could.  I was attached to an oxygen concentrator ~ that is a machine that manufacturers oxygen from room air and pumps it through the concentrator to either my tubing and lungs or to my portable oxygen tank so I could leave the house.  This way I could drive, go to pulmonary rehab classes, shopping, etc.  At least I wasn’t completely homebound.  The tubing that attached to the concentrator itself was 50 ft. long and enabled me to move through the house, from the 2nd floor to the basement.  I joked to my family and friends that I had a new “leash on life”, literally!

Living from day to day was difficult.  It took so much energy to just go upstairs to go to the bathroom and taking a shower ~ forget it!!!  I had to wear my oxygen in the shower and move slowly.  I don’t think the average person realizes how much energy it takes to take a shower. . .I was very shocked.

I was suffering from emphysema with an asthma component and my lungs by the time of transplant were only functioning at 20%.  The diagnosis came at a young age in my opinion, I was only 48.

As time goes by I will have much to say about this experience which continues to this day.  Just because I had a transplant does not mean that I no longer have to look after myself, on the contrary, there are many things I have to do in order to stay as healthy as I can.

At the beginning, right after transplant and after I got home (I was home 6 weeks after transplant) I had to come back to the hospital for bloodwork.  This bloodwork was done to keep a check on my “levels”.  Taking the anti-rejection medication Prograf, my Prograf level must stay between 8 – 10, if it goes too high they cut my Prograf dose, if too low they add more.  Every other month I had to have a bronchoscopy to check for infections, rejection and MRSA which I happened to get in my lungs while a patient, proably in ICU.  If they found the MRSA was active I had to have a PICC line installed so I could go home on IV antibotics.  This happened about 6 times over  the first 2 years post-transplant.

I must say how very happy I was and still am to be able to breathe without assistance and to be able to chase my 3 yr old grandson around the dining room table. . .who can measure that delight???

I can virtually walk, talk and chew gum all at the same time!!!  hahaha  BUT, to get serious for a while, I hope that if you are smoking that you will find a way to quit.  I know, I know, I heard it too from so many people but I just wasn’t ready or did not want to just because someone else said I should.  I’m like that.  Tell me to do one thing and I’ll turn around and do the opposite just because.  I didn’t want to quit, I liked smoking too much, but when I couldn’t breathe it became even tougher to quit. . .figure that?

I will never forget my lung dr’s comment about 2 or 3 years before transplant, “Sandy we’ve done everything we can for you.  We’ve maxed you out on your meds, that’s all we have for you.  I believe that if you don’t have a transplant you won’t live to see 60”.  I was in my early 50’s when he said that.  He explained that I wasn’t quite sick enough to consider or work toward transplant but that he would let me know.  How very strange to hear that you won’t live beyond the next decade.  I didn’t cry, I just felt weird. . .I can’t even explain it.  Perhaps I was just numb to the info.

I got the call at the end of 2004, I should contact UPMC Presbyterian about an evaluation for a lung transplant. . .

to be continued. . .

(Please visit my new blog www.breathingitsagoodthing.wordpress.com which is new as of today, 1/16/12 – will be offering more information on Lung Transplantation)

10 thoughts on “Breathing. . .It’s A Good Thing!

  1. sandy!! beautiful blog and sounds very much like me! iam pre transplant right now, i have stage 4 copd with end emphysema 😦 i can relate to the smoking part of it all. iam also with caring bridge if ur interested,writing bout my little journey on my waiting reli helps me plus i do alot of talking about quitting smoking, i began smoking at 12 yrs old, I was just about in my 30s when my dr told me to quit but do e listin, well i didnt, at 44 they told me about copd, but i was still good, never thought id be where iam today, iam not listed yet, iam 23% lung function and just spent 3 wks in nyu in the city for copd exactabation, was in icu 6 days, iam with n.y columbia presbytarin. still to healthy but sick enough to wait it out. anyway ,i enjoyed ur posts. keep writing, its great. looking forward to reading more!! xoxo joanne. http://www.caringbridge.org/visit/joanneiuliucci.

    • Joanne, boy can I appreciate where you are sitting right now! It brings me back to my days living in slow motion, trying to move forward and yet falling back a step or two.

      I would love to keep hearing from you and I plan to visit Caring Bridge and follow your journey. You have my prayers and encouragement. I was @ 20% lung function when I got my new lungs.

      Are you on O2? I’m not sure if you said this, but are you still smoking? I did for a while even though I knew it could kill me. The most difficult thing a person has to do, but once it’s done you can shout out loud “I DID IT, YOU CAN’T HAVE ME ANYMORE!!!”

      Nice hearing from you.
      Lots of love and hope,
      Sandy O

  2. hi sandy, jus read ur message on my caring bridge lol. iam laughing b/c i met you in f/b tx page i came here and been telling people for months ,how nobody really takes copd emphysema seriously enough, i was thinkin of ways to get wawarness out and found you here,lol so i set up at page, only when i tell u iam soo computer stupid lmao omgg so iam lookin threw urs and iam like wow i luv her stuff, its so cool lmao but!! i set up my own page here, of corse ill give u the link, i was lookin for u cant find you, and i wrote one thing so far but as far as more thats it im stuck .. lmao i see ur page is different then mine, im guessing there all different right, now can u please tell me , if i do and that ll be tonight, a post, does that become another page or is another page for something completly diferent. seee what i mean,i see u post things from f/b do u go threw ur pics for each post iam assuming , i cant be that stupid heheh nd u have a calender how did u do that lolol
    as for me smoking, i quit 491 days ago :)) i was 44 wen i was told to quit i had copd i smoked 9 more yrs, how stupid was that one.i quit nov 1st 2010. for lung cancer awarness , in memory of my mother who just recently passed away from that 3 mo b4 that. crazy right, but iam thankful for everyday right now, and thank u for sharing ur story,/stories.. your giving me alot of inspiration.where i been unsure, ur a hereo :))) stay strong sandy.. you was 20% iam 23% they figure i have another yr b4 being listed, im with new york pressbyatrian. ok sooo heres the web….. wordpress.comjoannesjourneyforlungs. if this dont work, its on my facebook page.. well u have a great day, xoxo joanne.ohh look wen i did my info i think itll go right to u ,niceee see u live and learn something new everyday heheh

    • Joanne, thanks for the good words! You are a smart woman for sure. It took me a while to be able to navigate this blogosphere myself.

      When you want to add a new post, put your cursor over the name of your blog in the upper left corner and you will see a drop down menu. Move your cursor over the word “new” then another menu comes out, click on post and a page will come up where you can post your new post. Also, if you put your cursor on New Post on the top right of your blog you can add your new writing that way.

      Good luck, I will toddle over and read yours after dinner.

      Take good care friend and I’ll be in touch!

      Sandy O

  3. Hi There Sandy!! yes ,As you see, i been a busy girl .I loved your response today in my c/b. Thank you very much. I know exactly what you mean by attitude is graditude. It sure is. I had to deal with the fact that altho i been there b/4 to the transplant6 team,the hosp had no record of me. So i had to start over 😦 To tell you the truth, i was feeling so sick, that everything was borthering me. ohh & moody is not the word LMAO but I been down this road b4 with the preds, but iys really bad thses days lol,If i could,id run away from me also LMAO
    well, I got an appt for may 8th for a cardio stress on the bike, 6min. walk & pft . ohh god, Its the bike thing iam not to happy with.but i gota do it,then ill no more of whats going on, Im noticing changes within myself also, feet swellon,hands, fast heart rate, just little things,so iam trying to stay on top of them if i can. The acid thing yeaa, but i think its from all the nebs. now my stomach is bothring me.It has been I just never mentioned it b/c i thought it was due to meds nd all, iam on probitotics and acid stuff (famotidine) 20mgs.
    well thank you for sharing all your great wisdom & knowledge with me. your words me so much to me. I would go on but iam goin to write in my c/b also and my wordpress too so dont need to read it 3 xs lmao. hope youhave a wonderful day.:))

  4. Thanks Jenny. Yes, smoking was the cause of my emphysema, but I gotta tell you, as though you don’t already know this, how hard it can be. One of the things that makes me crazy are those holier-than-thou former smokers. I don’t ever want to be that.

    I wish you all the best with this, it is so worth it.

    Many blessings and graces to you,
    Sandy O

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