Observations, Thoughts, and Knowledge!

I have been on this site for a few years and I very rarely post largely due to the fact that when I have I feel that I become attacked due to the opinion I have. I have a medical back ground as I was a registered nurse prior to being diagnosed with IPF. I worked in a nursing home with the elderly many of whom had respiratory diagnosis of COPD and a few with IPF. One can have obstructive (COPD), retrictive (IPF), or a combination of the two. I was diagnosed with primary IPF in the form of UIP, and secondary COPD in the form of DIP, so I have combination with IPF far more prominent. The advice I was given was this: "Don't become dependent on; antibiotics, inhalers, steriods, or oxygen. Don't allow yourself to be treated as a patient with COPD". I read all the information I could find on my primary diagnosis and I then understood why the doctor that diagnosed me gave me 3 to 5 years to live, because the only treatment is a lung transplant which I would never consider because it can give you a couple more years or you could reject the lungs and die anyway. Also people diagnosed with IPF in the younger years of their life tend to have a more progressive form of the disease. A certainty in all lung disease is that it is terminal whether it be from heart failure or respiratory failure. From experience as a nurse I can definitively say what treatment works for one patient will not necessarily work for another. I have chosen to be very firm in my treatment since my diagnosis I research every medication my doctor wants me to try in regards to my lung disease and I take into consideration all medication and how they affect my lung function. I exercise my lungs daily with my incentive spirometer, I have a pulse oximeter that I used to learn how to pace myself when I walk to keep my oxygen saturation above 93%, and I keep my tachycardia under control. I was prescribed oxygen in 2014 to be used during activity like household chores, showering, walking, well basically any thing where I exert myself. I primarily use it when I shop with my daughter and have used it when I came down with pneumonia. As soon as the medication kicked in I stopped using it.

I have other diagnoses as well fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, psoriasis, chronic pain mainly thoracic region, several herniated disc through out my cervical and thoracic spine, anxiety, depression, and tachycardia. I came on this site to find people of like minds, to read their stories, to learn what I could from other people, to give what knowledge I have from my experience, to sympathize and empathize with those suffering from lung disease, and to remind people you are your best advocate when it comes to your health.

Since my diagnosis in 2010 I have had bronchitis twice and pneumonia once, and was antibiotics twice once for the pneumonia and once for diverticulitis. During flu season I wear a mask for my protection in public places. When I get sick and its with my lungs I have it verified by chest xray and by white blood cell count. I don't want to take antibiotics unnecessarily. I have an albuterol inhaler I have used minimally on days when I become very wheezy. I'm beating the odds I feel because my symptoms began two years before my diagnosis so to me every day is a gift...my doctors have learned that with me they can't gloss over information that I will research. I will read all the information on a drug prescribed, I will ask the hard questions of them.

We are each uniquely different what works for one won't necessarily work for someone else, everyone has their own path to follow, but sharing ones knowledge may help just one person then everyone who can should. Knowledge about your diseases and how each of them affect the other is the best way to ensure you are in control of your disease and can be your best own advocate. Wishing only the best to everyone...

63 Replies

oldestnewest
  • Hi Docmel. Thank you so much for your post. I have got to say that although i read every word you wrote the bit that got me the most was your first sentence about you not posting because you feel attacked due to the opinion you have........i doubt for one minute your alone in that and its not ok not in any way.

    There are certain members who cant just accept someones views or opinions because they just want to be right and just cant stop themselves from butting in or bossing people around........

    Instead of staying quiet and not posting we should be able to reply to someone and say you are rude .

    I hope i have never made you feel that way and if i did i hope you will tell me so i can put that right..........we all have something to say its all important and im really pleased you have posted this and i hope anyone who feels the way you do will take your lead and post because there are many names i do not see anymore. x

  • Good grief !!

  • Thank you for sharing. Good luck and keep,on breathin!!

  • Hi Docmel, you've got a lot on your plate, health wise. I have several other complaints besides my COPD too. Undifferentiated tissue disease, Arthralgia, Fibromyalgia, IBS, osteoporosis and Sinitis/ post nasal drip, Depression/Anxiety.

    Of them all, the Fibro is the one that is ruining my quality of life. The pain is relentless and I dread the day the others catch it up.

    Don't let others keep you from posting, why should we miss out on your expertise through them.

    I hope you reconsider and start joining in more, we've lost so many lovely, knowledgeable people already. xx

  • My fibro is becoming more of a problem I'm currently trying to find a balance to not over do it yet still be active. Thanks for all the kindness .

  • Interesting and comprehensive post. A little difficult to wade through. Please don't be offended, but could you please try to split future posts into paragraphs please?

    I am sure there are people here with some of the conditions you suffer from. I have been diagnosed with emphysema, diabetes 2, meniere's disease and arthritis. Plus complications of diabetes.

    Medication for some is what keeps them going. I was terribly ill for months until I went to see the Doctor. Usually, I avoid them like the plague. He has pescribed Metformin which is beginning to work and lanzoprole, I recently had black hairy tongue. The medication from the Doctor didn't work. Live yoghurt and pineapple did work.

  • Why does docmel have to be told her post was a little difficult to wade through. And don't be offended but""" Some people just write what is on there mind at that particular moment.

  • I agree, this is the sort of comment that puts me off posting. This isn't an English Grammar site for goodness sake.

    I get bored 'wading' through pet pictures but I appreciate others really enjoy them so I wouldn't dream of asking people to change their posts.

  • Please note, I said nothing about grammar. Docmel's grammar is fine. All I am asking is for her to use the return key more often. You don't have to wade through pet posts from me or the other pet lovers. Or indeed the garden and wildlife posts.

    At no point did I say I was bored. I said I struggled with large pieces of text.

  • Thank you for the feed back I could have broke it all down better but once I got started it sort of just all came out...word diarrhea some might say. I will try in the future to think things through better. 😎

  • Thank you so much Docmel. I have been having some problems lately which my doctor informed me were due to medication I was taking, (Sodium Valproate and Venlafaxine).

    My concentration is poor and I have been worrying in case it was dementia. He said I mustn't stop taking the medication as that could be hazardous. I would like to come off them though.

  • Never stop taking medication without research and going over the pros and cons of stopping them with your doctor. I will typically research and email my doctor's. The nurse many times is the one who responds.

  • Tip:

    I suffer from 'word diarrhea' all the time and when I do, I simply go back through the pile of words, find a place that seems likely to start a new paragraph, place the stylus in front of the first word of the would be new paragraph, hit 'Enter' once (..or twice for extra 'white space') and "VOILA" !!! A more legible document appears !!!

    Try it..., you'll like it...

  • It's a "Print" fact that 'white space', that space created when paragraphs are used more often, make the reading quite a bit easier and more enjoyable. It's something editors, etc. have used for decades to make otherwise dry, humorless tomes a bit more 'digestible'.

    It's not a 'mean' criticism to suggest something that is ultimately helpful to the writer and makes reading their creation a bit easier and I'm sure it's meant only in the best of terms.

  • Thank you very much, Dmactds. you explained things so clearly. My brain is a bit befuddled at the moment, due to side effects of new medication.

  • Love your pet posts. They make me smile when I am feeling a bit down. Once I have figured out how to down load shots there will be no stopping me.

    All the best

    Malinka

  • Do you have a smartphone or ipad? I find it much easier to upload from my laptop, next to impossible from my tablet or smartphone.

  • No, just have normal Samsung mobile and laptop. I do manage to upload onto facebook and screen savers etc. Problems seem to start with new laptop and when I changed from 'Windows 7 to 8. Now am dreading the new '10'. Hopefully when my wonderful nephew is in town he can help.

  • I was trying to explain that some of us have visual problems and find it hard to read through big chunks of text. It has been a problem for me for some time.

    If I wasn't very interested in what docmel had to say, I would not have asked. Is it really so bad to ask for clarification? I am hoping to hear more from Docmel.

    A person with medical knowledge will know exactly why I have problems reading big chunks of text. I didn't feel it necessary to bore the rest of you with the details.

  • Totally understand...I sometimes have to reread things several times to make sure I understand.

  • Oh for goodness sake, what is up with you all !!

    Nobody Told anyone to do anything.

    Everyone is looking to criticise every little remark.

    I'm fed up with all the petty squabbles.

    Lighten up

    Velvet xx

  • I'm so glad you posted that, thank you. You are very knowledgeable and I'm sure I'm not alone in hoping you feel able to post more often.

    I copied and pasted this from your post:

    "Don't become dependent on; antibiotics, inhalers, steriods, or oxygen. Don't allow yourself to be treated as a patient with COPD".

    One after my own heart. Thank You

  • Thats a good point scanny and it was something the nurse said to me when i first came out of hospital.

  • Hello Mandy, I don't think we've spoken before, nice to meet you.

    I think that is good advice.

    Take care x

  • I doubt it will make much difference but one must try x

  • We must, we must.

  • I read your posting with interest. I noticed you wear a face mask during flu season. One thing you could also consider is some,thing I do these days. Basically before I eat I use hand gel. Since doing that I have noted (& posted about this) I have far fewer serious exacerbations plus far fewer colds etc.

    Is something I swear by now!

  • I have face mask and hand gel too. Door handles in particular are riddled with germs.

  • I am so sorry you feel this hun but in the 3 posts you have posted in 15 months I can't see anywhere where anyone has attacked you, unless you changed your name because of it.

    I am however, really pleased you are posting. I would think with your medical background you will have a lot to offer. I look forward to seeing more of your posts.

    I absolutely agree we have to be our own advocates.

    With good wishes

    cx

  • Reading the comments about being attacked, I am wondering if people can get ultrasensitive?? I could be wrong but think it pays to keep quiet at times instead of over reaction but then I am a tough old bird. Where's the SMILEY button X

  • I don't think there are any emoticons. You have had to be tough but less of the 'old'. As an aside and without hijacking docmel's post I hope you are ok.

    cx

  • I must be missing the attacks, as I haven't really seen any. I hope that continues! Keep breathing everyone!! :)

  • Docmel we all have stuff like shyness or even social phobias

    depending on the situation just as in other situations we feel better.

    IMHO.

    But we owe to ourselves to struggle against. You dud thatand i was glad to read your post.

    Do you think it is useful to not use the inhalers ? Could you say why?

  • I think they can be helpful depending on what type of lung disease you have. I chose to not use inhalers designed for obstructive lung disease. I try for my pulmonologist but if I notice no difference when using my incentive spirometer within 14 days I quit as most like Spiriva or Advair are quite costly. Best of luck.

  • Hope Up, please don't stop taking your inhalers without talking to your doctor. I don't know what condition you have but if involves shortness of breath, inhalers are invaluable. There's a big difference between overusing something and taking what has been prescribed for you.

  • I only have a albuterol inhaler. I tried Spiriva and Advair noticed no difference talked with my doctor and quit using them. My exact diagnosis is Usual Interstitial Pneumonia found in seven biopsies taken from my lung and lymph nodes around my sternum. I also have disqaumative interstitial pneumonia. The UIP is restrictive and more prominent in my tissues. DIP is obstructive and far less prominent. I wish you all the best and you have to make and do the choices that best fit your health conditions.

  • And I wish you the very best too. This is my third attempt at replying to you and the posts just vanish after I hit 'submit'. If this one gets through, I just wanted to say thank you for your informative post and I hope you stick around the forum.

  • Halleluia ! My last post actually got there :)

  • Billiejean. I ve light copd

    and reckon only good i notice is less sob while swimming perhaps too going up slopes . Why i really keep them going is because they are considereded preventative.

    But what on earth does that mean ? Does it mean they prevent the SOB or the condition. getting worse ? People find this hard to ascertain - thats what i gathered when i asked the forum.

  • I can see your dilemma. If it's very slight COPD. Even with asthma people take preventative inhalers, i suppose they lessen the inflamation and thus, less episodes of wheeziness and sob. I reay don't know the answer to your question but I'm sure your respiratory nurse or doctor would know.

    Hope you work out whether you should keep taking them or not.

  • Thanks Billiejean

    What are you ?

    A Michael Jackson fan ? Or the tennis player Billyjean King.

    Both or neither of these ?

    Pardon my flippancy.

  • Just someone who put down the first thing that popped into her mind, while signing up to HU.

    But I always did like the song too :)

  • Interesting post. I hope to see more from you.

  • HI , Docmel , what a very interesting post I enjoyed every part of reading it fully, in parts I will say I agree with you, as for you not posting due to some well whatever they are, just ignore them , as far as im concerned you can write any postings how ever you can, were all ill in our healths so grammar does not enter in to it as long as were able to post to members,, it does not matter how we word what were trying to get across to members, as long as its friendly as your lovely post was I really enjoyed reading it, and I hope you post more for us, look after yourselve and as I once was told its our lungdisease were in charge of whats best or what suits us, as you said were all different that's true that, but remember Docmel were all hear to help each other , so it would be nice to hear of you soon as,, good night and sleep well ad er dunt forgot to come back then asap,

  • I would like to thank each and everyone of you for responding to my post I usually sit back and observe because I have seen some of the attacks that made me fearful of posting. I personally have not been on the receiving end of an attack.

    I used to think that doctor's had all the answers but then I became a nurse and had much more realization that we patients are more like test subjects. When I became ill it took two years because the doctors wanted to blame my symptoms on becoming old at age 42. God bless you all.

  • Thanks Docmel. Yours is a very interesting point of view. Your lung disease and other health issues are very different to mine but we do share several views and practises in common. I shan't list them here as they are well documented in my Profile.

    I do hope that you will consider that your post has been a success this time and that you will continue to share your points of view with us all. As and when issues arise.

    Regards, Rib

  • Hi Docmel, I think if you had posted your Observations, Thoughts, and Knowledge, post say last week you would have been as you say attached for your views, I think some people on here seem to be of the opinion that things should be ok by them for it to be safe and properly spelt and the correct grammar for our delicate eyes and minds, I for one am a 58 year old lady who is more the capable of making my own mind up about what I can or can not read, and how I deal with things.

    I agree 100% with what you say about knowing your body better then anyone else and as you can see I'm not on my own, looking forward to lots more from you, Sally xx

  • Enjoyed your post Docmel and agree with you about the medications. I've had bronchiectasis all my life and I developed pseudomonas two years ago. I was told it was because of all the antibiotics I've taken over the years. They are sometimes a necessary evil but do come with nasty side effects. I reluctantly agreed to take a course of levofloxacin which didn't completely clear the pseudomonas so I still have it, but I tore a tendon in my shoulder which I'm convinced was because of the levo.

    I've done lots of research and now take natural antibiotics in the form of oregano oil, and garlic oil (which actually doesn't give you pongy breath).

    I take a ton of supplements which cost a small fortune.

    I also eat extremely healthily and it's been two years since I've had a bad chest infection.

    What I don't do - and I know it's very important - is exercise (apart from a gentle walk round the golf course trying to get that little white ball into tiny hole). I lost a lot of weight with my new eating regime and don't want to lose any more by exercising.

    Any ideas?

    :-)

  • Exercise is extremely important - a case of use it or lose it. I was told upon first being diagnosed of the dangers of 'suicide by sofa'. If your weight loss is problematic you can use supplements to up it. Talk to your nurse. Mine was brilliant and gave me a referral to a dietitian, which I found really helpful.

  • I walk my dogs, meditate, a little yoga. I take vitamin D supplement, and super Vitamin B complex with a special enzyme Pantethine +P-5-P it helps the body utilize B vitamins.

  • Thanks Toci I'm waiting to see a chest specialist at Glenfield. I've never been offered pulmonary rehab or been given dietary advice. Hoping it will help.

    :-)

  • Staying fit is very important...look into yoga it helps keeps you limber and toned. Also leisurely walks. As walking helps build core muscles.

  • Thanks Docmel. I'm actually going to try Pilates next week, also weight lifting as I could do with filling out my scraggy arms.

    :-)

  • Docmel, I am so happy to meet you, I am so sorry my posts attracted negative posts to your thread.

    The very last thing I wanted was to cause upset. I do hope we will hear from you again soon.

  • Thank you Docmel for a very good post. It seems that you and myself are of the same mind, I wonder if there are any more of us out there in the dark corners of BLF if there is I would like them to make themselves known maybe we could form our own group or even our own site dedicated to finding the truth about the treatment we receive grouped together under the COPD umbrella. Two years ago I started to take a serious look at my dire situation since then I have done a vast amount of research and if I had known then what I know now I would not be in the terrible state that I am in to day. I love life even the black days and I will not accept the now offered palliative care to help me slip away quietly, I'm a decrepit old git but also a stubborn sod and consider I still have a life to live. Posts like yours help to strengthen my resolve, wallawalla ( Gordon).

  • A super post and i hope to read more in the future.

  • After reading all the replies to Docmel it appears we are legion I at one time thought I was a lone idiot now I know that I am on the right track I wish it was possible to meet face to face instead of what I feel is a clumsy blog site, having said that if it wasn't for this site I would still be a lone idiot, there's a blessing around every corner.

  • Though, at this point, my COPD doesn't seem as bad or as advanced as yours or others in the group, I know that there have been warnings from my doc to not let myself become dependent on anything that was prescribed three years ago when I first had my pulmonary collapse.

    At first, I was on my oxygen pretty religiously, along with my Spiriva and Symbicort; now, however, my use of oxygen is minimal and I'm growing to rely on my lungs only more and more. I have an oximeter that I use several times a day to keep track of things and find that exercising improves my general blood level count of oxygen.

    I've reconciled myself to the fact that I'm never gonna walk at the speed I used to up hills..., but that's as much owed to my age of nearly 73 as it is faulted to my COPD. I've got no comlaints.

    Duncan

  • Hi docmel, although I agree with you in many ways....I have been prescribed medications which have made my condition worse, but they seem to work for other people....we are all different . I have learnt to listen to my body and try to make informed decisions on my treatment, but there have been occasions when certain drugs have kept me alive.

    But I have reread your previous posts and I am sorry that you think that your viewpoint has been attacked.

  • Hi Docmel

    Don't think I have seen your posts before. When you think about it, actual living is terminal so I don't get too hung up on that lung disease prognosis. What you say is interesting. We are all different. I don't have a medical background so I have to be careful when I google stuff re COPD as I can easily scare myself. I have severe COPD and on oxygen 1/2 litre 15 hours min daily. I do try to move about as much as possible as I think once you stop making the effort everything will become much harder.

    Enjoyed reading your post.

    Keep well.

    Malinka

  • Nobody however qualified can predict how long you have to live.

    Obviously some illness and conditions are terminal, but a lot depends on the will to live too.

    It is of course sad, that Graham flouted the rules, by posting information for commercial American sites.

    The internet is a bit like the Bible, you can find something to say from the internet that is in line with your beliefs.

    There was also an issue over dosage, it seemed Graham's idea of a safe dose differed rather a lot from trusted medical sites.

    I did a lot of research and the consensus of opinion seems to be that 10,000 iu is the maximum safe dose. to take long term.

    Having read all about Graham's experiences, I take Vitamin D and Vitamin A daily.

  • I have a story about inhalers, but I stress, this is my experience and I am not advocating anyone follow this. This is not advice.

    I was diagnosed with COPD about 5 years ago, at my then GP's. The nurse gave me a nice blue inhaler, patted me on the head and sent me on my way, saying, use that when you feel the need. The problem was, nobody ever told me how to recognise when I needed to use it. I tried it once, felt no different and put away in a drawer. I never used it.

    Two years ago I moved house and GP. My new respiratory nurse gave me, Spiriva and Seretide and instructed me to take daily doses. 1 year later, I went back for my check up and in honesty, I felt and looked dreadful. I had very red and swollen eyelids, red stinging eyes and my left eye felt as if I had a knife stuck in it. On top of this I had upper chest pain in my back and not an ounce of energy. I think the nurse was worried and got me straight in to see the GP. The GP said you have no infection and suggested I see an optician. The optician said, I had blocked pores and sold me an eye bag. The eye bag helped, but it never fully clear up.

    About 3 months ago I was invited to take part in the trial of a new inhaler at the Medicines Evaluation Unit, in Manchester. In order to take part I had to cease the use of Spiriva and Seretide, 5 day's prior. I was turned down for the trial because I had just completed a PR course and there had to be a 3 month gap.

    However, in those 5 days of inhaler free living, I started to feel so much better. The redness in my eyes started to clear, my left eye pain stopped. The pain in my back had gone. I could take deep lung filling breaths. But, what was most startling to me was the return of me. I hadn't realised how much my personality had changed. I'm back to being a good guy again, the grumpy, clinging sod has gone. And I love it.

    What I liked most about your post, docmel, is not let to COPD define you, I certainly don't. I refuse to wear the badge or to have COPD as my middle name. I don't know what a FEV is, or a SOB and I don't have the slightest idea what my lung readings are, if the nurse at my GP's ever starts to tell me, I'll stop her in her tracks. I just go off how I feel and right now I feel good.

    And once again this is not advice.

    And thank you again docmel, come back soon, we need people like you.

  • Hi docmel again, just to say I awoke last night with a slight wheeze and cough, nothing very serious, so I thought of your post. Instead of automatically reaching for a reliever , I tried the pursed lip breathing and sat up and read a bit to distract myself. My breath improved, but I would have used my medication if it had worsened. I have asthma/ COPD and I know a full blown attack can be fatal.....so I am aware of any serious changes.

    Thanks...it was just the bit of extra confidence building that I needed

You may also like...