2 Lung Diseases and falling apart

Hello my name is Annie. I joined yesterday but gave up as when writing about my condition it allowed me to put Pulmonary Fibrosis, not my main lung disease hypersensitivity pneumonitis why is this? Also not sure which help site I belong to as a result of my lungs I have had Chronic Heart Failure 2 years ago. Also suffered a Heart Attack 4 weeks ago. I am 49 NEVER smoked although I am certain the doctors do not believe me about that. I do not know where to turn as lung docs only care about there bit,vthe same with heart docs. I also have diabetes and OSA, also mental health issues. Waiting for the rest of me to call apart. Anybody else dealing this dispear.

[HungryHufflepuff]

Hello and welcome 😊 I'm sorry to know you're having such a horrible time with your health. You can be a member at more than one group at Health Unlocked, there'll be one for cardiac problems too, but lots of people here also have heart issues of varying degrees so maybe you'll find support and advice here. It's a very friendly group to be in. It's beyond frustrating when doctors don't accept that a lung condition can be caused by something other than smoking. It doesn't help anything.

You should be able to list several conditions on your profile but it doesn't seem to accept or recognise them all. I don't understand how it works. Someone will be able to help you with that too.

All in all my reply is not very helpful but I just wanted to say hello. 🕊️

[Oshgosh]

Welcome to the forum.ihave more than 1 condition and am on more than 1 part of the forum.

I have found it useful,people are are very helpful.look after yourself.

[Hidden in reply to Oshgosh]

Thank you

[Hidden]

Thank you

[Hacienda]

Hi Annie, Welcome to the Forum. You have certainly been through the Mill Hun. I hope today you are feeling Better. You must have The Stamina & Will power to get through this Awful episode of your Life. Stay Strong Hun. We are here to Support you. Love n Hugs. XXX C.

[Ergendl]

Welcome to the group. Great to have you with us. I hope you find some tips here to make your challenging health journey a bit easier. I have certainly learnt so much through being a member.

[MoyB]

Welcome! Xx Moy

[katieoxo60]

Hello iowasds3110, welcome to the site. It is not nice to have these things when you have taken care and not smoked ect. You summed up treatment to a tee, each doctor has their own idea of whats best for an individual diagnosed disease. Like yourself I have more than one illness plus a disability. Each may be controllable in its own way but put together has a much harder impact on your individual ability to cope and maintain good health. One drug may be great for one illness but bad for another. I have always said their is a need for multidisciplinary teams who listen to the patient, not necessarily a mental health employee. You need to take care as you recently had a heart attack, which stress wont help. AS said you can join different groups for different problems although most of us have more than one illness ongoing. Hope you decide to stay and we can chat again some time. Take care and try to stay safe.

[Bingo88]

Welcome iowasds3110. Well you certainly have had a tough time of things Hopefully feel better this morning We are all here to support you in anyway we can The 9 dot symbol at the top left gives you the choice of all the different groups for Heart. Lungs. Health and wellbeing etc. So plenty to keep your mind off your problems And chat to people with the same conditions and exchange views Take care Brian

[Izb1]

Hi Annie and welcome to the site. One medical condition can cause others to develop and its important to find the right doctors to deal with this, but almost impossible to find. I have rheumatoid arthritis and with this disease comes lung, heart and eye problems, which have all developed with me. I find the more knowledge that you have the better you are equiped to deal with this and this site has helped me alot. So ask questions and find the answers and join as many sites as you need. Irene x

[Dedalus]

Hello and welcome Annie.

[2greys]

Hi and welcome. You are far from alone with having multiple conditions, I'm afraid it comes with the territory of having a chronic lung disease/s.

You can learn to live with them, by having a strong character, a determined willingness to make the best of what capabilities you have and change to a healthy lifestyle.

[Chalky2 in reply to 2greys]

Very well said

[NannyNooNoo]

Hello and welcome from me too. I have a couple of conditions, as does my OH. Like you, he has heart and lung conditions, and we also find that the heart team don’t liaise with the respiratory team - it’s very frustrating! They’re not very keen either, when we try to encourage some joined up thinking - all the more frustrating as it was the heart meds that caused the lung problem; add in that there’s 2 hospitals involved ............... even his GP pulls her hair out! Anyhow, there’s lots of support on HU, and some very valuable information/experiences. Take care

[Carnival567]

I too have what they cheerfully call multiple co-morbidities. I was born with heart disease and had surgery aged 17, which left me with difficult to control hypertension. I had a stroke aged 49. I developed atrial fibrillation at 62, which is now permanent, although I have had 11 cardioversions and one catheter ablation. I was diagnosed with bronchiectasis 8 years ago, probably caused by childhood whooping cough, and 6 years ago with obliterative bronchiolitis caused by the drug given me for the atrial fibrillation, and now stopped, but I have pulmonary fibrosis. I also have heart failure and severe pulmonary hypertension. I was recently diagnosed with type 2 diabetes. Like you I have never smoked, am not overweight and don’t drink much. I agree with you about the doctors, the cardiologist tends to blame my lungs for the breathlessness, while the lung doctor blames my heart condition. Even one of the doctors in A & E said he wished there was a cardio thoracic specialist available who could take an over view., I also have depression. The difference between us is that I am 77. I don’t know what advice I can give you, except to take the treatment offered conscientiously, eat a sensible diet and take what exercise you can. Other than that you might find counselling helpful, especially with mental health problems, and try to do what you can and not mourn the things you cannot with love and blessings x

[Beth1949]

Having lung issues is bad enough without adding heart issues and diabetes. It is enough to make anyone depressed.

I see by your tag name, do you live in Iowa? I live on the north side of Des Moines. I moved here 4 yrs ago.

Since I retired 5 yrs ago (less stress now) and moving to Iowa (with better air quality) and having a specialist that knows how to treat Bronchiectasis (which I've had for over 30 yrs), I have felt better these last few years than I had in decades.

Also, I had a stem cell treatment 4.5 yrs ago. They take a small amount of bone morrow and blood from me. And re-inject the stem cell back into me. Theory is that the stem cells go to areas of the body that are damaged (the lungs) and repair the area.

So talk to your specialist, find out what is NOT working for you and try alternatives (it took several different combo of meds to get it right for me).

Also, you may want to try alternatives to prescribed meds. Essential oils, certain vitamins or minerals, do certain foods make things worse (allergies), or environment (air quality). Exercise, even if it just walking around the house.

Good luck, Beth

[Hidden in reply to Beth1949]

Hiya Beth

No I live in England just outside of Birmingham, West Midlands. The IOWASDS actually stands for Isle of Wight My name Annie S and my husband's intials. I don't know why but I thought this was a UK site. Great friends across the ocean. Thank you for taking the time to respond 😊

[Karenanne61]

Hi and welcome!

[Exocist]

Annie.

You are a legend. Thought I have health issues. .and still very young.

stay positive and strong. This group is magnificent. And I will pray

for you.!!!😁

Exorcist.

[Caspiana]

Hello Annie, 👋

I have a myriad of autoimmune issues that caused my lungs to fail. As a consequence, it was decided I was really at the end of life stage. For years I just tackled each medical problem as it reared its ugly head. Admittedly, very tiring and at times I just want to roll over and give up. And honestly, sometimes I do😣. I let myself give up for a day or two and then get up again. I had a transplant almost a year ago, I am doing well but it is not without it's own issues. My point being that it is very natural to feel like you've had enough. So, I and everyone here completely understand how you feel. You have been given some really good, uplifting advice here. I hope you will come back soon. It really helps to talk with others who understand. I

Sending warm wishes,

Cas xx 🍀🐞🌱

[Hidden]

Thank you to all that have sent me good vibes. Thankyou all for responding.😁