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“A Journey to Remember !!!! “ Joanne’s story, COPD diagnosis, to transplant.

Posted Jan 17 2013 4:07pm

 

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We have been asking some of our friends for “Your Story.”  We are very happy that Joanne has become a member of the “Alliance,” and, is the first to share her story here.  It is in her own words.  It is filled with inspiration, gratitude, sage advice, gained from experience, and, a message of hope about living with a chronic condition.  She is living proof of why you should “NEVER,  NEVER, NEVER, GIVE UP.”

Moreover, why everyone should also be prepared to give the gift of life, and be an organ donor.

Thank you,  Joanne.  May the rest of your journey be long, and happy.

You can also find Joanne on Facebook, at:

  “A  Journey to Remember !!!! “

We all know what copd is right? ( Wrong.) You would think, that so many people would know that they have what we call,copd,  known as  (chronic obstructive pulmonary disease ). It is an umbrella term for emphysema,asthma,alpha-1.  Almost, anything pertaining to obstructive lung disease. It usually affects smoker’s, but,  it is affecting more than just smokers. I was a smoker also,40 years, way too long. Long story short, I started smoking at 12 yrs old, just to be cool .My Father realized I was a smoker when I got my 1st bout with bronchitis (14 yrs old).  My Dad said if he caught me smoking he’s making me eat the pack for dinner.  Knowing my Dad, yes, he would’ve :)

When I was in my 20’s, here came asthma, I was put on Ventolin inhaler.  I  rarely took it back then because it made me dizzy, nauseous, so,  only used it when needed.  At 37 doctors told me I had signs in my lung, and  I have emphysema. I thought the man was talking “stupid.”  I am 37 not 67, or  77 yrs old.  Little did I know he was smarter than me :) .  By 40 yrs old, I was copd still smoking.  I told everyone I CAN NEVER QUIT.. NEVER SAY NEVER!!!

My mother passed away, also, from copd , but quit smoking  in 2010.   Fifteen years after being diagnosed with copd she gets “small cell.{ (lung cancer).  This was in July, nobody knew she sick, not even her. My niece, Danielle took her to her pulmonary appointment, then,  calls me at work,  telling me “you need to come here gram is spittin up blood,” I go there ,told Doctors to do a CT scan  The doctorsaid “not necessary, yet.” Nobody spits up blood for no reason, I aim demanding a CT. (Still nothing).  July 5th, in the  e/r that night, the doctors asked my sisters ( Patricia and Alice) “…how long she had a lung tumor,”  while I’m outside smoking! When they came and asked me, in a way, I was shocked. But deep down, I kind of knew it.

My mom passed away August 4th, 2010 ( four weeks later)  That’s when I said, “.. Ok time to do something.”  I first went to BECOMEANEX.COM  to quit (actually foundthis site on accident looking for patches) This  is a website that is active with many great people, all there for the same thing. So, we encourage each other to “stay quit.” Proud to say. with their help,  I’m now 2 yrs and 3 months smoke free. I highly am recommending this website if you want a good, strong, quit . Tell them, “..,Jojo, from New York, sent you.  I still go in there to encourage the newbies.

Now, my copd was worsening. I now could not walk far, laugh hard, always coughing, morning, noon, and, night:  cough cough cough . Finally, I found the Doctor in  Manhattan, NYU Hospital,  Dr. SUZANNE GAROFANO :) This lady saved my life. I was in the hospital twice, 2 months apart, for exacerbations.  In the ICU, I got MRSA. What a place to get it, at the hospital.  It is normal, the hospitals are the germiest place.

Lungs are stiff & barely working!!!! 

Then here I am told I need a life saving surgery!!!!  A lung transplant.  Without thinking, I said “no way…”. I couldn’t see anyone in my chest tearing out a lung /lungs . But, I was disintegrating quickly.  I to pulmonary rehabilitation with a lung capacity of 33%. In “rehab,” and I still dropped from 33% capacity to 28 percent.. I was already “stage 4 copd” with end stage emphysema. So, here they ask me again, and since I had 4 children, a husband to live for, besides my Dad, Dotty, & my family,sisters friends.

I thought about it, and was recommended to New York’s, Columbia Pressbytarian Hospital . I met the transplant team.  I was a good candidate.  I went through all the testing , Dr. Saha & Genivive, my Transplant Coordinator, are the best.  They are not kidding that “amazing things are happening there :) ”  At this point I am down to a lung capacity of 25% but ,still healthy enough, even though I lost all my ability to function at a  normal life level.

Waiting to be listed!!

How many copder’s were able to shower comfortably?.. Not me, I was so out of breathe. Now, I’m on 02, even tho my stats were good, 90-93  saturation.  If I were walking upstairs, it would go to 80-85.   Pursed lip breathing, always working to get my air up there . I used to say “omg I can’t breathe at all,  but my numbers are good!”  That is the way it is with us copder’s.  My Doctor just said to me, two weeks ago, “..you have no idea how sick you really were.” But, I think I did, because I had “seen it in my face.” My coloring, to me, was gray looking.  I started a “bucket List, started planning,  “just in case.”

Then came the point I would walk one step at a time up stairs,  got there, and cried.  I said, “God do what you have to do, I can’t take this anymore. It really is like suffocating to death, wide awake, and you know it. So, it’s time to get up and do something.  I started to research copd.  I learn how drinking warm water a few times a day to release inflammation in your respiratory tract, so you can feel “more open”  You can even put a lemon if, you want.  I learned in the early stages rehab, that it will help slow the process down, because, it can be aggressive in late stage, like it was with me.

So, now 2011, I was put on 02 at 3 liters ,can’t use high numbers with copd, as you can bring on c02 which it did.  Again, in ICU. At this time, i was so weak, depressed, trying to stay strong, and never give up.  I found a copd website, made a ton of friends, all copders some good, some not so good. a lot of CF’s, also,vwho I grew very fond of, as well as, Joanne S, FROM FLIGHT FOR LIFE, a transplant page.  I gotta say, I made a lot of good friends there.

I AM STILL WAITING :) BUT CLOSE

Day by day, I was getting stronger, smarter, more positive.  This lady was not going anyplace, anytime soon, I had things to do, people to see, and, a life I wanted back.  It is bad when you cannot grate cheese because you can’t breathe. Cannot clean because, no air, plus the cleaning materials with the odor of bleach, which is a definite  “no-no” for your lungs. I just wanted an active life , I was nebulizing, using inhalers,  Advair, and Spiriva, They worked for me, if I didn’t have them, I had a bad day .Everyone is different, what worked for me may not  work for you.  Call your doctor whenever you think your meds may not be working.  Always better to be  safe,  than sorry. Always ask questions have a pen and paper ready, if you are like me by the time you get out of the office.  You forgot what he/she said because you were thinking too much on the copd  that you now have.

The other day a guy in a Facebook COPD page, asked a question about inhalers. He had just stopped them, because,  he thought it was a cure.   What he really didn’t know was is “there is no cure for copd.” It is  the third leading cause of death in the United States. Quit smoking, and you can slow the progress. Exercise, in the early stages, and give yourself a shot . Copd  is very scary. You never no one minute to the next.. I always said copd is cancer without the cancer.

On the list…
.
“Well, the big day is here.” I was at home, with my sister Alice,   I got the phone call from my Coordinator, “.. you are now listed as of today at 1:30 pm :) ) That was May 16th. I asked,   “How?”  I know people have waited years.  They said, more like 6 months, to, a year, “we have a lack of donors.”  May 22 2012, they called called to say,  “I am now on the list”….yeaaaa!
Five days later, I got my 1st call but it was “dry,“ means “no good,’  Got another “dry” call three days later.  Finally, June 25, 2012, 7:30 p.m, I got another call.  Wow, what a process.. blood x-rays, the waiting to know if you are “going” is the hardest part. Then, at 4:30 a.m., got a call by now, all the excitement is all gone : )  And, when they said you are 3rdd on the list  it means there are two people ahead of you, you are 3rd in line. If the first two are not matches, then the lungs are yours… ohh great. .

But,000 I had a good feeling, this time  Sure enough, 4:30 pm on a Thursday, June 28th, 2012, I was wheeled in the o/r.  We all were laughing. I asked them if “we can have music on?” They said, “of course, we can put on the oldies, but goodies,… lolol..  My surgeon came in, Dr Brecetta , great man, a great surgeon, and, so handsome… lolol…  I gave him a thumbs up” told him:  “knock me out, and, let’s roll.”  I prayed to God, and, a Hail Mary, to keep me safe  and allow my Mom to watch over me, and guide the hands of the surgeon :) I was not afraid at all. So I went with my gut , it was great, 6.5 hours in the o/r….

Received the gift of life, June 28th, 2012…

Woke up in ICU. Wanted the vent out asap. They removed it at 1130 a.m.  They thought I would need to go back on.  But, I am taking control, and concentrating on breathing, because,  I wasn’t going back on the vent :)  At 2 p.m.  my daughter, sons, hubby was all there.  I got out of bed sat in a chair, and ate pudding :) I was in a lot of pain received.  I had received one lung, as the right lung in the donor had spots on it. They didn’t know what it was.  It was not cancer. But, they did not chance it either.  So, I have one good,healthy lung. and, one copd lung.  They would have wanted me to get the right lung, because my right lung is really shot down.  Also, the right lung has 3 lobes,  the left, has 2 lobes.  In my condition, one is better than none :)

Long story short, I was home in 12 days.  I started to walk around the house, weights on the ankles. Strong legs make strong lungs.  I did physical therapy four times a week.  Let me state here, that my lung capacity was 17%, and;as of, Tuesday, January 8th ,2013, I am proud to say:

“ I am now up to 74% :)

I have encountered many obstacles, but, I got passed them all , thank God. Rejections, infections, low blood level, need a 5 hour  iv treatment to just boost my energy, a little. I am now on immune suppressants,on loads of other  meds, mainly rejection meds, like Progratf, Cellcept,Dapsone, “preds,”  Valcyte, and more.  So, I fundraise.  Even though I have good insurance, the co pays get you when you are on this amount of meds,  So  I am fundraising on the Brooklyn Bridge, selling tee shirts, my daughter Nicole, is making up. Raffle tickets, and doing a 3k,  I am so excited to do this  Born, and raised in Brooklyn, ride the bridge all the time, but, never walked on it, That was 1st on my Bucket List, and April 14th, at 1 pm, I will be there, meeting a goal,  and, making a check, off the bucket list.

If you have COPD, make the lifestyle changes, watch your meds, sleep good, and; if you’re getting a cold, seek medical attention asap. A few things to remember, drink the warm water 3 times a day.  If you feel to sob, seek medical attention; take “baby steps,” as you will get there faster.  Don’t look at life expectancy, just know what to do when an emergency and remember to live as much as you can slowly.

If you always think about dying your chance to live will pass you by.  Today, so far I am so very thankful for my 2nd chance.  I am living, breathing, and happy.  I thank, and think,of my donor every day.  So everyone breathe easy and livestrong.  Being positive brings out positive things.

Thank you all for allowing me to share my story.. “thank you”…

Thank you to my husband Jimmy,my kids, Mike, James, Nicole, and Vincent.  Also, my Dad, and Dotty, thanks for everything; and, all the support, to my sisters, Patricia, and Alice, my friends  Doris, Delly, Chris, and, Roy, Rea, Lee, and my “cuzin,” Charlotte Ann, for supporting me through it all. And, to all my family, and friends, I couldn’t have done it without you, all.  I had a great support system, and it is important to have a great support system.  Almost forgot, my sister-in-laws, Lou and Patty. Thank you, too.

 

 


Joanne Stingo Iuliucci

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