Need some hope

[Beefull8]

I was recently diagnosed with moderate lung restriction and obstruction. I’m still waiting to see a pulmonologist and I’m afraid they’ll tell me I only have so many years to live. I’m a young mother with two little kids and terrified this will get worse. Could you please share any hopeful stories to help me get through this difficult time?

[strongmouse]

Hello, sorry to hear how you're feeling. Yes any illness is frightening and it is good that you have a referral to a lung specialist. The most important thing is to be as well informed as possible about what is wrong with you and what you can do. Does your doctor think that your lung obstruction is from asthma or from a different type of lung condition? There are different causes of lung restriction and obstruction and some are very manageable with the right treatment.

Do you have long to wait before your appointment with the pulmonologist? If so I would phone your GP to ask for more information and possibly ask to be seen earlier as you are concerned and becoming anxious. It is very easy to read things on-line and imagine we have the worse possible thing! If your doctor thought you had something very serious and life threatening then he / she would refer you urgently.

If the doctor reassures you, then take one day at a time and remember that with good treatment and management many illnesses like asthma are not usually life threatening. Many people on here have had asthma for a very long time (I was first diagnosed in 2004).

Make the most of each and everyday with your beautiful children. Everyday is a gift, a special day to be grateful for all that we have. None of knows the future. After you have done everything possible to be well, to find the best treatment available, then today lived as well as possible is the best gift you can give to your family.

[Beefull8 in reply to strongmouse]

Thank you! I was diagnosed with both moderate lung restriction and obstruction which I think isn’t common. The tech and allergist seemed bewildered and concerned that I failed all the pulmonary test and response is not normal for my age. I’m hoping this could be due to the virus that I caught which seemed to trigger it. It’s true reading online makes me scared. I keep seeing that it could be irreversible. When I did spirometer test my inhaler did help a little. Problem is I already have hyperthyroidism and do my allergist is hesitant about giving me certain meds. I still need a cat scan but my cardiologist says my heart is healthy. Thank you for reminding me that my doctors did not see an urgency in doing anything including scheduling pulmonologist so hopefully they don’t see it as scary as I see it. I often feel like I can’t breathe st night and when trying to sleep but when I’m out of my house I almost feel normal. Wanted to hear stories of people doing well despite a diagnosis. I want to be around and healthy to watch my babies grow up.

[hypercat54]

Hi no one can tell you how long you have to live but I would guess it's many years yet. What sort of moderate lung obstruction? Is this copd? emphysema? x

[Beefull8 in reply to hypercat54]

I haven’t been given an actual diagnosis except that I have asthma and something else causing restriction. I know asthma can be reversible but I’m not sure about the restriction. I think I scored about 66 percent and 50 percent on the pulmonary tests so not well.

[Gillmace]

Be positive (although it’s hard) you have everything to live for and have been referred to to right place . No medical advice - sorry but hug hugs and encouragement to make everyday count as much as possible

Good luck

[Jandm]

As mentioned before, lots of us are managing with the right treatment. Interesting that you feel more restrictive symptoms at home! Maybe you could have a look at household products/cleaners etc that might be exacerbating your condition. Perhaps it could be your pillows or bedding etc etc. There are lots of triggers in the home that can be rectified if you find out what they are, and any information you can give to your pulmonologist could help in designing a treatment program for you.

Good luck 😃

[Beefull8 in reply to Jandm]

Thank you! We had a recent toilet spill and immediately had people come and clean it and prevent mold. But I think with the mix of dust and potentially mold I was triggered and suddenly wound up with asthma. I’ve since bought an air purifier, plants and threw away furniture that could possibly have mold on it. It seems to be helping a little but I still feel best when I’m in nature. I’ve just been recently diagnosed and I’m just overwhelmed. We had to cancel our annual family trip and I can’t imagine feeling comfortable on a plane again.

[Beefull8 in reply to Beefull8]

Oh and funny you mention cleaners! I’ve always been into being healthy so use my own homemade cleaners and soaps prior to this and eat healthy.

[TJRN1959]

Interesting that you asked for other people's positive stories. Surely the one positive story you really want to hear is your own. Having children makes you feel very vulnerable, especially when you're not feeling so good yourself. But let's look at the facts. You're part-way through the diagnostic process, and your doctors are beginning to build a picture. Clearly there is some physiological process going on, and in time the medics will get to the root cause. Yes, it can be frustratingly slow, and at times you can feel very isolated. You say that when you're out of the house you feel much better. Can I hazard a guess that things seem at their worst when you're alone and have time to be thinking about it all?

A few steps you could take:

1. Review all the medications that you're taking, especially anything that's not related to asthma or breathing difficulty. It may be that your experiencing unwanted side effects from another medication. You'll need to do your own research, but the information is out there. Ignore whacky websites, stick to the ones that are from official and professional bodies such as the MHRA, the FDA, or reputable organisations. Go talk with your Pharmacist if you turn up any potential drug concerns.

2. Try "Mindfulness". Meditation works - and you don't need to wear orange pyjamas or be a hippy to get the benefit! Loads of really good stuff is available on the web, but again, stick to the serious sites, avoid anything tacky or whacky.

3. Write down all your worries, read it through, and re-write it, then make an extended appointment with your GP and talk it all through.

4. Get in touch with Asthma UK. Their nurses are fantastic. You can ring them through normal office hours. They really listen, and you'll learn a lot.

All the above has helped me enormously. I'm 59 and have had asthma all my life. In recent months it has become worse. Once or twice I've even really thought that my time was up. But it isn't. Doing all of the above has enabled me to take control again. I still have difficult times, but now I'm in charge.

You wanted a positive story? Well this is my mine.

So now go out there and create your own!

Good luck!

[Beefull8 in reply to TJRN1959]

Wow thank you so much! I really appreciate your kind and thoughtful words. Reading it does give me hope. I do feel like this is an opportunity to live the life I have better. It’s making me appreciate my kids more and to take moments to enjoy the little things like breathing :). Thank you again! I’m actually have thyroid disease and am on meds for that. This could also contribute to my symptoms definitely makes me anxious and my heart races from it. I know mindfulness helps. I do think nature is healing. I read somewhere that magnesium and ocean water helps asthmatics. It’s the reason why epsom salt baths help me to even when I’m at home. Thank you again and I hope your asthma improves as well.

[Suzsugarbaker]

My pulmonary dr said test results do NOT indicate function. She has a 72 year old woman with score of 20 who plays tennis everyday. The scores are more predictable that without right care, you might be more susceptible to exacerbations or pneumonia during your like so seek the right treatment.

[Beefull8 in reply to Suzsugarbaker]

That’s interesting! So she said the test are just for helping you find the right treatment? Thanks for your feedback!