I'm so sorry I just can't shake this anxiety which has manifested its way into depression. I didn't mention it in yesterday's post because I sounded enough of a sad sack as it is.
I saw my GP yesterday who told me I'd brought on all of my diseases myself through my inability to address my anxiety. So I've brought on my liver cirrhosis [which I'm managing/accepted/doing everything I'm supposed to], brought on my mild pulmonary hypertension [which has has gone from mid - moderate down to mild], my lung sarcoidosis [which is not active - has left scarring though], and I've also brought on my COPD. [moderate].
One of the reasons I post so often is that I love my son so much, and to think I brought all of this on myself - he doesn't deserve this. I'm 55 and want to live to see his children. I know that I've halted my cirrhosis - there's a strong possibility that I can still live a full life with this. I'm seeing the Respiratory Specialist for the Pulmonary Hypertension and COPD in a few weeks. I start Pulmonary Rehab next week. I've also lined up some counselling sessions.
I'm doing everything I can to halt these conditions - I know I can halt the cirrhosis [and I know I'm on the way to doing this], yet COPD is a Progressive Disease. Yet I read of people, through sheer hard work, bring their FEV1 down a stage or two. eg/ moderate to mild. Does this mean it will still progress eventually, and we'll all end up on oxygen? Or can we keep it stable and live a full life and die of something else?
I'm so, so sorry for my constant posts - I've also called various helplines, who have been very good, but to tell you the truth, I get the most support from you lovely people. Thank you from the bottom of my heart.
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puddy68
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Hi puddy, l think your GP is a disgrace to speak to you like that! How awful. My husband Pete has sarcoidosis (not active at the moment), COPD (chronic bronchitis), heart disease and chronic back problems. He’s an ex-smoker but no doctor has ever said it’s his fault. He’s still here and watching our grandchildren grow.
Please do get help with your anxiety if you can. Yes COPD is progressive but you can live a good life with it. I have high controlled blood pressure and atrial fibrillation but last year had a cancer op. Hoping it never comes back but who knows. Life is full of ups and downs. Enjoy being with your son, nobody knows what’s around the corner.
Sassy need to tell you you are a gem on this forum ,even when you can't help or advise you are still there for everyone with your kind words that is help in its selfself ,good luck to you and Peter
Sassy need to tell you you are a gem on this forum ,even when you can't help or advise you are still there for everyone with your kind words that is help in its selfself ,good luck to you and Peter
Hi Puddy. I'm sorry your doctor was so rude. How awful to be blamed for your illnesses. I'm not an expert but I know someone who has lived with cirrhosis for almost ten years. Although there is no cure for cirrhosis , there are ways to manage the symptoms and any complications and slow its progression. On this site there is a liver forum too. Maybe you would like to join that as well.
As for your anxiety I urge you talk to a psychiatrist. Anxiety and depression are the best of friends and they always come hand in hand. People with chronic illness are often anxious. It is fairly common. Your lung function is at 50% or so if I remember correctly. I think with your determination you can live for a long time. Is the source of your anxiety purely health related or are there are other issues in your life that are causing you strife?
I don't want to leave my children either although they are both grown up and moved away. At the end of the day though it is futile for me to think about it but I do treasure every time we manage to meet up. No-one can tell us how long we'll live. So we live the best life we can under the circumstances. It took me a long time to get to grips with the unknown, but I'm still here with one shrinking lung and one transplanted one that could conk out anytime at will.
Keep writing when you need to. I think it's very therapeutic. xx 🍁🍂
Hi puffy. I do feel for you, you’re doing all the right things but your dr is a disgrace. He’s done nothing at all for your mental health. Life for everyone is full of ups and downs. Try and think of the positives.
I'm shocked at the doctor's attitude!!! An email to the surgery is needed and see a different doctor in the future. I'm glad you have some therapy sessions booked. They can help enormously, well, they helped me last year when anxiety hit me, out of the blue. I find it helpful to have fun things in my calendar to counteract the medical stuff. I love the theatre so we go as often as we can afford (Phantom of the Opera this evening! The RSC is my favourite and we are lucky enough to live closet o Stratford) but others on here enjoy painting, walking, photography, poetry, crafts etc. Good luck!
It'll take time to work on anxiety.has dr given u antidepressants that will help.he didn't need to be so harsh with you! Your still in prime of life.id take the bull by the horns - exercise at home,go for a cpl walks ea day,avoid people with viruses they can trigger infection, drink plenty of fluids; if u produce mucous, read up on aluk website on lung clearance techniques - these are the things that will enable you to keep as well and fit as possible, this will benefit yr physical + mental health.There is a technique for anxiety caused by thoughts creeping in.you tell them to STOP! as often as u need and distracting yrself thn helos
Hi Puddy - I am lucky I have a good GP, she never would say "I had brough my ailments on myself"
Your GP is an absolute disgrace talking to a patient like that.
Anxiety come when someone has multiple conditions, that's natural - I have moderate COPD, Heart Problems and cancer which seems to be treatable at the moment.
COPD you can live a to old age, well I am proof of that.
If anxiety is turning into depression, you really need to get that sorted - if your GP practice is a group practice, go see another GP to get some help.
Anytime you feel like posting do so - That what this forum is all about.
Anxiety and depression are both treatable, get some help from another GP if possible or asked to be referred.
Try and be possitive and try and do things you like.
Hi puddy wow that's some Dr you saw he dosnt have the right to speak to you that way don't be afraid to put in a complaint against that Dr tell the surgery you want a complaint form ask to see a differant Dr they have no right to speak to patients that way I've had to do it myself I got a written apology I refuse to see that paticular Dr ever again you haven't brought on your illness yourself as for you being 50 percent your not doing so bad like they say excerises are important over a year ago I was 23percent that was a shock this group helped me alot I do light excerises at home daily unless like at the moment I've picked up some type of head cold bug which has knocked the stuffing out of me but im on the mend so hopefully I can restart excerises in a few days I don't say much on the group but they have been so helpful when I need advice .
Hey don't be so hard on yourself and your gp has an awful outlook to be telling you its your fault ,he is meant to help and reassure you. You sound like you are trying to overcome some of your issues and just be kinder to yourself .you do have a future to look forward to and keep as positive as you can 1 day at a time .sending you best wishes and better days ahead.🌹
nothing wrong with being on oxygen, I also use a mobility scooter to get about, both mean I can carry on. I go fishing, get out and about, I have Aspergillosis and emphysema(COPD) my FEV is about 25%. I don’t worry about the future I just take one day at a time and enjoy life. With progressive disease you can’t cure it (yet) so there is no point in getting upset and stressed about it. Concentrate on what you can do and enjoy time with your family.
I'm so sorry you're so sad. I'd send you a hug by airmail if I could. Sassy is right- your doctor is totally out of order. How does anyone give themselves sarcoidosis? I suppose your doctor would assume that nearly all lung diseases are self induced. You are doing all right in managing the cirrhosis and the hypertension- just remember that. You do need help with the anxiety- can you ask for a referral to a competent specialist? I have bronchiectasis, not COPD, but I have reached 83, which is not a bad age to reach. Gives your son plenty of time to provide you with a dozen grandchildren if he chooses to. I hope things look up and you are able to enjoy the lovely Australian spring as we sink down into our horrible English winter. Virtual hugs. Chris xxx
Sorry to hear you’re going through this. I have suffered with terrible anxiety this year to the point I couldn’t get out of the house. I have found that listening to lots of relaxation and anxiety podcasts have helped as well as breathing exercises. I have COPD, tachycardia and a blood disorder and illness can get you down but keep fighting and you’ll get there. Take care.
hi puddy firstly never ever apoligise to anyone over your health problems , secondly get rid of whoever told you that you have brought all your illnesses on by yourself that is utterly digraceful and well out of order by a doctor ..try to take each day good or bad as it comes you have every right to feel miserable like we all do sometimes but also we have good days sometimes very good days and each day gets better if you allow it ..it is so easy to get oneself in a depression and have anxiety also it is very hard to come out of it but believe me you can , it takes time your son will understand and that has a reason for you too believe in yourself ...l had cancer 12 yrs ago and again 3 yrs ago and the only way is up l am in remission and yes l have also been where you are but with the help of my loving family just like yours you will get there ..please take care and best wishes to you x
I’m so sorry to hear you’ve had to deal with such dreadful comments from your doctor as well as everything else. It sounds like you are doing your best to stem your ailments and support is what you need from your doctor, not negativity. Anxiety is crippling and perhaps you need help to bring it under control, rather than criticism for suffering from it. I would try to see a different doctor for a referral to get help with this. I really hope you get the support you need.
I’ve read a few of your posts previously and refrained from responding because you’ve had such helpful replies to which I can add little. However, I think there are some issues regarding a COPD diagnosis which have not been fully explained.
A diagnosis of COPD is given where your lung function is below 80% of the normal range for your gender/age; however, 5% of people will be outside the range and have perfectly normal lung function for them. It would be wrong of me to suggest that your lung function is “normal” for you if, as I recall, your lung function was around 60% (mine is 53%), but I simply want to point out that there is a large range of lung functions and associated symptoms (some people with “normal” lung function get COPD symptoms, and some with COPD get none).
There are two other issues which I think put this diagnosis in perspective. Firstly, there is a lot of redundancy in lungs and a good pair of lungs will last you till you’re 130. Since none of us expect to live that long, having limited lung function does not preclude us from having a long life. Secondly, all lungs deteriorate with age, regardless of the starting point. Most people with COPD will have been offered treatment to slow down that process; people without COPD will not have that benefit so, theoretically, those with naturally deteriorating lungs will do so at a quicker rate than those treated for COPD. But there is an enormous amount of individuality associated with COPD (as you’ve probably gleaned from the site); we are all on our own journey with this, as we are with everything else in our lives, it’s just that we share a common condition which we can all relate to and support each other along the way. I wish you well on your journey.
Sorry but I do not agree that people with health lungs who are naturally deteriorating due to age will have worse lungs than someone with COPD, because we are on inhalers. I’m young with this disease - on full does thriple therapy & my 75 year mother has great pair of lungs & can out walk me by miles.
Yes, I remember taking a 97 year old back to her care home, and she outran me! But, for clarification, I’m not saying that someone with healthy lungs will have worse lungs than someone with COPD (by definition, that cannot be the case); what I am saying is that the rate of deterioration will be reduced by treatment. If you treat someone without COPD in the same way, their rate of lung deterioration will also be reduced, but there would be little point as their lungs would outlive them in any case. Since a diagnosis of COPD occurs below 80% of the “normal” range, and that range is 80-120%, it is very unlikely that anyone treated for COPD would ever “catch up” with those with healthy lungs, whose lung deterioration may be marginally faster due to lack of treatment, but who started from a better position in the first place.
I thought COPD was diagnosed as your FEV1/FEV being under 0.70? Forgive me but I might be being silly but I don’t entirely understand the argument. I would have through the lung health of a healthy individual is in no way comparable to someone who has COPD. Maybe akin to comparing a premier league side to a non-league side. I’m relatively young with this disease & any 60 year old with ‘normal’ lungs & reasonable health, can run rings around me.
I’m sure you’re absolutely right about the FEV1/FVC ratio, but I think respiratory consultants look at other factors gleaned from spirometry in determining a COPD diagnosis. I’ve used the figure for lung function where the 95 percentile range is 80-120% for any given gender/age, so even people with so-called “healthy” lungs have quite a significant range of lung function! However, anything below 80 is potentially a problem, except for those few people for whom it is perfectly normal. Even within the diagnosis of COPD there is an enormous range from mild to severe, so it’s not simply a case of good versus bad lungs - it’s a very wide spectrum of lung function.
Even using your FEV1/FVC figure of 0.7, I think you would agree that someone with a ratio of 0.71 doesn’t really have significantly better lungs than one with a ratio of 0.69. But the whole point of a diagnosis of COPD (as with a diagnosis of anything) is to decide on the most appropriate treatment, and an FEV1/FVC figure of 0.7 is as good a place as any to start. A COPD diagnosis is not about distinguishing between people with “good” and “bad” lungs, it’s about improving an individual’s lung function so they can have a better quality and longer life than they would have had if the poorer lung function had not been identified.
I appreciate pulmonary media is incredibly confusing. My FEV1/FVC ratio is at 80% but my lungs are completely buggered. My RV is quite high so he is just saying mild obstruction for now. They won’t say COPD yet but it’s clear as day. I’ve literally turned elderly over night (there were some issues before but very livable with & I was highly active) I really don’t know how people live for two decades with this disease. I’m about 6 months in and I already want out!
hi Puddy68, bless you your Doctor should hold their head in shame, that was a disgusting thing to say to you !!
Pulmonary Rehab is amazing the respiratory team will help you in so many ways & can refer you to specialists if need be. It will lift you spirits & you will meet others with similar problems. Take care 🥰
same post time and time again. Before everyone slags off the poor dodoctor Please read through all this persons postposts going back months with the same questions so maybe she driving her GP mad . This person posts the same questions on every media site you can think off. Before anyone can help her she really needs to listen to her doctor and start trying to help herself.
To be fair, being newly diagnosed with this horrible disease could send the most resilient man into a suicidal depressive mess. Especially if one particular virus means you’re not nearly as active as before / with air trapping / breathlessness . It’s a monumental change. She may need meds but they don’t suit everyone. And let’s me fair soo many GP’s very poor in the Uk/ireland, and presumably Aus too.
This isn’t a place for ranting at other members, it’s a support forum. Of course puddy posts repetitive questions, that’s a huge feature of health anxiety. She can’t help it, & I’m amazed you don’t understand that.
I have very serious lung problems but by nature am a positive person & able to take each day as it comes. Well, lucky me, and lucky you if you can do the same! But we’ve all had different life experiences which affect our ability to cope with what comes our way. If life’s been kind to us & we feel loved & supported, we’re more resilient. Others take to drinking, smoking, overeating etc, which gives them other problems to deal with. I understand doctors get frustrated - they’re only human after all - but “first do no harm” is their guiding principle & this gp has done the opposite. Making her feel guilty & lowering her self esteem won’t help puddy’s mental health.
I remember you criticising before, and would politely suggest you resist the temptation to attack others. If posts annoy you, just scroll on by.
COPD is determined by your FEV1/FVC although lots of other numbers are also important (RV/DLCO etc). This number needs to be below .70 so just double check what yours is (I assume .50 from what your saying). I’m not sure whether increasing your FEV1 will change your COPD category. Also you can work hard as you can & then one virus will destroy all your work. Avoid viruses like the plague. If you’re determined to slow this wretched disease down you might want to think about become an avoid mask wearer. There’s a long covid sub Reddit & they’re are avid mask wearers. Might be worth a look. IMO avid hand washing is utterly overrated.
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