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Pulmonary Langerhans Cell Histiocytosis
Rare (Interstitial Lung Disease)
https://www.histio.org/page.aspx?pid=383

3/31/2015 Respiratory Failure Sats 79%
4/06/2015 Open Lung Biopsy
4/09/2015 Recovery (Complications Re-incubated).
4/16/2015 Released from Hospital,with 24/7 Oxygen. Sats 97% 2% Oxygen @ Rest 3% w/exertion.

On 4/01/2015 My X rays turned up many issues; Scar tissue and holes along with dark spots. I had to have a lung biopsy to be sure what was going on…a routine procedure I was told, not for me, I was revived twice during the procedure and ended up in ICU. I didn’t know what happen, apparently my lungs are of tissue paper and purple, I couldn’t leave until I was stable…I had no clue that I may not be going home, but I assumed all this was normal for a lung biopsy so I didn’t worry….I was taken off the machines and went into respiratory failure once again, the feeling of having a lung collapse was excruciating to say the least, I grabbed the doctor’s shirt and demanded re-incubation! Whilst on my 7th day in.(I was told a 3 day stay for this routine procedure) I was there 14 total.

At home, I am on a 50 ft tube from my nose cannula to a machine in which I can get around but when I go out I use a 3LB cylinder type tank of Oxygen, on a little two wheeled handled pole, Doctors would like me to have a double lung transplant, why I am now legally disabled and on SSD. However, considering the shape of my lungs, I do not think I may make it off the table!

So I believe in quality not quantity, so this will be long and slow. Best case scenario with new lungs; Live another year or 5 (Which requires you in and out of the hospital on anti- rejection medications) IF the new lungs are not rejected, no real guarantees! So a one time shot there. Some have done great for 5-15 yrs, (but my case is the worst they have seen, 5 yrs is pushing it). Others like me, who refuse, my live up to 2-5. I have made my choice.

Current CO2 Stats 97% with tube. Then there is the matter of your heart, it has to work harder also when you can’t breath normally, which is my current issue this year, CHF, Left Ventricle.

Now being oxygen dependent… Adjusting has been a real drag. So many doctor appointments and frustration, I have become a hermit, depression and anxiety have taken over.

2016
So far…. I am at 3% Oxygen dependent usage @ rest and 4% @ Exertion. This disease is Progressive and is cancer -like, However it is very s l o w. I have been taking steroids vitamin D Zoloft Xanax Prilosec and lasix as well as aldectone (water pill 2). I play on the computer and watch movies. I do some stretching and nap a few hours a day, walking distances are limited, on a good day I can shop but have to sit every other isle, the motorized chair is awesome but not in reaching. I feel useless and lost if I overthink my situation, otherwise I try to do things I have put off while always working…however I miss the social aspect to no end…

I hope I am in the right place to chat, as I am sure COPD isn’t any more fun.

Thanks for reading,

Blessings, Rene’

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Christina Mattoni-Brashear moderator
    3 years ago

    Hello Rene’ —

    Thank you so much for reaching out and sharing your story with us! We’re so sorry to hear of all you’re experiencing, and completely understand missing the social aspect of life that you were accustomed to – you’re not alone here.

    The focus in our community is on COPD, but it sounds as though some of your experiences are similar and we are so glad you found us. Please stop back and let us know how you’re doing, or if you need support – we’ll be thinking of you!

    Take care,
    -Christina (COPD.net Team)

  • Leon Lebowitz, BA, RRT moderator
    3 years ago

    Hi RockinRene65 and welcome. You are most certainly in the right place to share your experiences with COPD and we are so glad that you found us!
    We are all about all things COPD and welcome your continued participation on our website.
    You may also want to visit our Facebook page where there are many like minded community members who share their stories and support throughout each day. You can find it here: https://www.facebook.com/copddotnet/

    Please know that you are always welcome here.
    Warm regards,
    Leon (site moderator)

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