Now I'm scared!

Now I'm scared!

Well... finally met with a lung specialist. He advised me that I have chronic emphysema and may want to get on a lung transplant list. After a long walk it was determined my oxygen saturation levels dropped to 55. So he put me on oxygen level 3 mostly when active or moving about. I was so overwhelmed I didn't know what to ask him after all that. Transplant and carrying around an oxygen tank.???? I feel tired a lot but did realize it was that bad. So overwhelmed not sure what to think. Whew.. writing things down as they come for my next appointment in 6 weeks.

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  • Hello Cherrhea, that came as quite a shock for you. It's such a lot to take in but you will be able to carry on and get through this. Lots of people on here have emphysema and oxygen so hopefully they will offer help and advice soon.

    I just want to send hugs to you and urge you to be strong. Xxxx

  • Hi

    Ambulitory oxygen therapy is just another medicine we have to take, it will allow you more independence.

    The only question relating to oxygen are the type of equipment, cylinders comes with bag and trolley. Weight approx 3/4 kg

    Liquid oxygen requires place for Dewar main tank, comes with refillable flask weight 2.2/3.7kg depending on make.

    Portable concentrater comes with bag and trolley weighs approx 5kg.

    Some providers are starting to roll out the lighter concentrater weight approx 2.2kg.

    It depends on your needs and lifestyle as which equipment is more suitable.

    As for the transplant, that a decision for you and your family, after discussing all the facts with your consultant.

  • Hi 🍒 iv just been writing my bio as new on here & come across your post. I have copd for 10 years & only 49 & Fibromyalgia as well. I get scared as breathing is hard with this disease & get fatigue like yourself. I can't really help you with advice as no idea what stage copd I have & chest specialist removed me as I also have cat spores in my lungs & she didn't like that I wouldn't get rid of them as there my family so all I can say is be as strong as you can sweetheart love K4ttt ❤️

  • You will get a lot of advice on this site you have a lot to take in and I am sure your mind is in whirl please take time to adjust xxxx

  • Hello Cherrhea60 . I so, so understand that feeling. Oxygen tanks, tubing up your nose, not the best thought. But believe it or not, you get used to it. I did, pretty quickly. It's not so bad and you get a little less fatigued. I must say 55 is really a huge drop. I doubt I would be standing. So you definitely need the oxygen. I know it's overwhelming right now. But take it a day at a time.

    As for the transplant, I am glad you have that option. I too am apprehensive about it. Let's take it a day at a time.

    It's good you are writing down all you want to ask your doctor. Do let us know how things go.

    Sending you a gentle hug.

    Cas xx 🌹🌿🌹

  • Some great advice above. You are doing great - that is a lot to take in. You'll feel better once you we the improvement you get with oxygen. As for the transplant, there are others on here who can help. I would just like to send big hugs x

  • Greetings!

    Transplants come at the end of a long road, so considering it, isn't a bad idea. Oxygen is a lifeline and lifesaver so learn to love it because actually, you don't have a lot of choice. It all becomes second nature very quickly.

    Remember this, though: your diagnosis does not mean it's "The End". I've been hauling a cylinder around for ten years and I'm still getting up and out there.

    Please, please don't consult "Dr Google". It'll scare the pants off you for no reason. Ask here if you have questions. We are all patients, we walk this road and will tell it as it is.

    Be strong; come back and talk to us!

    Catnip

  • Thank you Catnip. My husband tells me the same thing. "Stop using the internet to diagnose your condition". It does take some getting use to. Up until now I was 100% healthy. I had to work at catching a cold. Lol

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