It only took my practice 8 years to concur!

Yes it must be a new year resolution of my practice to look at what other problems the patient may have. Also look at what the Hospital have said to them in letters with an open mind?

I have had lung issues most of my life, succumbed to a few heart issues in my 30's had a heart attack in 2004 and to many angina attacks to remember. I have had many bouts of pleurisy and pneumonia to a full lung collapse in 2008 from non conclusive evidence as to why or what made it so aggressive. Once they put the first drain in I drained 3.5 litres of fluid from my lungs in the first day. Then they thought a second drain would be good idea? This was not done by the consultant that did the first and he nicked something important. When I started to dribble blood from my mouth and gurgled to a shocked doctor That's not good?" I was knocked out and it transpired I was given 6 units of O neg (I am O Neg so limited what I can have.)

All in all my lungs were so infected that they compartmentised and bled, I had empyema which was 1.5 cm thick so a Decortication was planned at another hospital but once there they refused as I was to ill for the procedure and put on an Oscillator for 10 days. Without the other problems an Oscillator gave me a 50% chance of survival? Stating the obvious It worked! It took over 2 years to clear all the empyema and fluid still in my lungs.

Most of the treatment and conditions left scarring in my chest wall and outer lungs and also damaged the inside. After all this you would think the practice would then think this man has a lung issue but no most of it was blamed on my heart conditions? It was not until 2012 that they gave me a spiro and found I had RLD. This was brought about only by the fact that I found I had worked with asbestos for over 10 years so they were obliged to give me one.

These past few days my left lung has been vibrating like a rubber band and no matter how much I cough nothing is coming up? So I was in town and the wife insisted that I go to see if they will see me quickly? Well they did, late afternoon. In we go, I explain what was going on in my chest. The first thing he asked "Am I on Oxygen? " I explained that A&E and consultant have asked the same but when I am sitting down it is not so bad, but if I do anything that it drops? "Need to keep an eye on that?" he said "Quick listen to the chest and he then said with your fibrosis I will have to treat you with AB's as you are making quite a bit of noise and Fibrosis does not always show infection that normal lungs that may bring up what is cracking in there."

Sorry for the waffle but I thought I needed to go through the brick wall I have had for the past 8 years, maybe they have seen the light of a new year and leaving their arrogance at home. Fingers crossed.

To help this all along my gout has flared up. The tablets that get rid of it always make my chest gooey so I cannot take them until I am clear of the rubber band in my chest :(

Be well

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52 Replies

  • Good grief. That's a terrible story. 8 years!!! Sorry to hear about the gout too, such a painful condition I believe. I hope you get some relief very soon.

  • It is not spreading that quickly at the moment but the heel and knee and starting to succumb to the gout.

  • I don't blame you for ranting, you've had 8 years of hell Offcut. I didn't quite understand what you said. Are you saying they have finally got it? I hope so.

    My brother has gout. He said it's agony. xx

  • It seems that after many years that the diagnosis I have been told at hospital is now been agreed with by the practice.

    I still have an issue with O2 they always test me at the end when I am rested so show a fair % and do not seem to understand that is not when I need it. I do not need to do a lot and my O2 can drop quite a lot. If I do to much I will get very dizzy or black out? Going up my house stairs I can be 78%/88%?

  • Obviously the way to get around this issue would be to do a six-minute walk test. That would clearly show if you were de-satting on exertion. If your sats dropped below 89 then they would probably prescribe Ambulatory O2 for you. Dropping down for a short while, such as going upstairs, is not such a big deal if you recover quickly. Your organs will only be damaged if the drop in sats is all the time. I can't understand how your medical practice could 'refuse' to acknowledge that you have a respiratory problem, given all the incidents you describe. It beggars belief and you should make a formal complaint and/ or, change to another practice. I think problems like this do tend to occur when someone has several conditions going on at the same time, but there's no excuse for it.

  • I did a treadmill and as soon as it went up one notch I dropped to 80%

  • The 6-minute walk test is the best way to measure oxygen needs. If you feel you need oxygen then you should insist on having one.

  • As soon as my feet stop hurting I will put a plan into action.

  • Fair point. I hope this flare up doesn't last too long.

  • Right, I see what you mean. It's hard to tell doctor's what to do, in case they get a bit shorty but, you need to be able to ask them to do the oxy test as soon as you get in the room.

    Mine aren't too bad to talk to and were willing to try a previous DR's way to stop my chronic cough and PND when it flare up a couple months ago.

    Going dizzy and blacking out is a horrible sensation, it's only happened to me once in the last few years. I blacked my eyed on the door jam on my way down. Never did find out what caused it.

    I hope they get you sorted soon. I'm always reading what a huge difference O2 can make to someone who needs it and no one should have to jump through hoops to prove they need it. xx

  • Bloody hell, Offcut. What a nightmare. I sooo identify, I have been in the same sort of situation— not as bad — for six years, and still not fully there.

    And all this on top of the distress of your son's illness.

    How on earth do you cope?

    Why do some people have endless shit chucked at them?

    Love and hugs and I am glad you can offload on this forum.

    The people here who are so supportive.

    Kate xxx

  • I believe in Karma but I do not think I have been that bad? It does seem things are been driven by opinion not facts.

  • I quite honestly don't know what to say to that, it is shocking. Take care. Jan x

  • What an awful collection of experiences, Offcut. Hoping you are getting sorted out now.

  • Only hoping this was not a glitch.

  • Hi offcut

    What a bloody awful time you have had and are still going through.

    I admire you when faced with all your problems, and giving your Son so much support with his upcoming transplant, you are holding it all together, you have incredible inner strength.

    I am sending my love and best wishes to you and your son, you are both very brave.

    Velvet xx

  • Thank you. I think it is a case of having to rather than wanting to?

  • Hi off cut. I'm speechless at your amazing strength and courage. Your son is one lucky lad to have such an amazing family.

    In my thoughts and prayers.

    It is good to have a rant on here, isn't it, to people who understand and are so caring.

    Love Suzyxxx

  • My wife calls it stubbornness ;)

  • Bless you - what next? I often feel as if the arrogance of some medical professionals prevents getting at least some of the tests that may throw light on problems (not just my own). I hope the ABs help once you're able to take them. All best wishes & I hope the New Year brings good results for you & your son xx

  • I can take the AB's but not the gout tablets as it is them that make my chest gooey, so I have to just grit my teeth and take pain killers.

  • It is no bad thing to read of someone's poor health history and you have certainly been through the mill Offcut. Good to think the doctors may actually be looking at the bigger picture with any luck.

    Hope you feel better soon and take care. Xxx

  • Never know it might be moving in the right direction now. But maybe not worth holding my breath just yet. Pun intended.

  • 😃😉 Take care Offcut. X

  • Goodness. What a story! Hope you get better soon. That gout is so painful. Do you get it frequently? I have two cousins who suffer with it and my late father-in-law used to suffer medication you take is that allopurinol (sorry can't spell it). That is brilliant and clears it quickly such a shame you can't take it now. Must be miserable for you.

    Take care,


  • My gout tabs are Arcoxia I only need to take them for three days and it usually goes but it makes the chest real gooey. They are looking into a daily tab to prevent it from flaring up. But I then will have to see if they affect my chest also. ( I am not good with some tabs) I have a boot that takes the pressure of the front of the foot when it flares up. I have to use a stick or crutches as it throws my balance out. Once I am out with my boot it is amazing how differently people treat you.

  • Ah yes, I see. Always difficult to find tablets that either don't interact or cause other problems. Don't think my cousins have been offered a boot. I will tell them about that as one has it at he moment.

    Hope the gout goes soon.



  • Shocking story offcut! Have you ever considered seeing other specialists?

    And to have gout on top of all that! So painful. Try googling natural cures; here's one link below:

    Of course you need to make sure it doesn't interfere with your medication.

    Hope you start to feel better soon.


  • It is only the apple cider vinegar and the charcoal that I have not tried and I eat apples and bananas every day drink a lot of Ginger drink. I did use to get very bad flare ups so maybe it has reduced it a little.

    My first one was so bad I thought I had broke something as my foot was red and blue and up my ankle as well. Even the A&E doc sent me for xrays when in there the radiologist said will soon know how many bones you have broke. When it came back clear I had 3 doctors all looking and touching it with no idea what it was. It was my GP the next day told me it was a very bad case of gout. They now say I am a chronic gout sufferer? :(

  • Hi Offcut , I know exactly what you mean. Last year I was in absolute agony with pain in my right arm from finger tips to elbow - so much so I went to A&E too. Three Dr's were mystified but a nurse then tentatively suggested " Could it be gout ?" Never known pain like it ( even having my children !😳 ) They also said if it reoccurred there was medication I could take to hopefully prevent flare ups. I would probably be ok as I only take medication for High BP, but I'm sure you would have to be very careful. Hope you are feeling better soon & try not to be too hard on your wife - I think I gave my poor husband a really hard time as the pain is excruciating isn't it ? Take care, Helen.

  • I have broke bones with less pain than gout.

  • I hope you will start to get the right treatment, sometimes when we discuss our symptoms and the medication which we are taking, we never mention the brain numbing visits to docs and consultants and various medical professionals as they try and find a solution for us while we have to put up with trying to get on with life under painful and difficult circumstances. I'm not blaming the medical professional's completely but they do sometimes seem to stick to guidelines that don't cover the illnesses we have or how we react to medication. Once many years ago when I think my Bronc. probably started after a bout of Pneumonia I was told by my doc. the reason I felt sob and weak was that I was like the Victorian ladies who succumbed to the vapour's and to get a hobby to take my mind off of my imaginary breathing problems. Thank goodness things are changing if somewhat slowly.

    Hubby has gout and takes medication daily but unfortunately still has flare ups, so when one starts now I bully him into taking Ibuprofen tablets 2 x 4 times a day for 3 days which usually takes the swelling down. I'm afraid if he moans at me I threaten to set our 4.1/2 granddaughter on him to make him take the tablets that gets him reaching for a glass of water.

    Take care.


  • I cannot take Ibuprofen tablets as they make me SOB. It was not that long back that they treated asthma with valium! It was deemed to be a nervous condition.

    I do not swell very much which always throws the doc's When I broke my knuckle on my big toe the foot did not swell much but when they showed me the xray they could see all the calcification on my joints from my arthritis and gout.

  • Oh Offcut, to put it plainly you are on a hiding to none. No wonder you get fed up. I hope that it has it helped to put it down in writing and get some of it off of your chest.

    I did once think of starting a blog about what it was like getting through the days/weeks/years with lung diseases and the complications they can cause but decided that it would so blooming miserable that perhaps it would not be very uplifting. Mind you that's before I found this site, which has been a blessing.



  • I've been prescribed the NSAID Etodolac for pain as it is receptor specific and doesn't affect the lungs the way other NSAIDs such as ibuprofen does. It must reduce inflammation too as when I stopped taking it to see if it was causing any problems, my breathing got worse.

    My father suffered from gout and I suggested he stop eating the large quantity of pickles and vinegar he liked to eat each day - it stopped. My brother suffers too, but he won't give up the alcohol as advised on the leaflet he was given. The cold weather will also make gout flare up as the blood gets sludgy and the uric acid turns to little jaggy crystals more easily in cold hands and feet.

    Wishing you all the best for identifying your gout triggers.

  • I do not think they would give that as it can thin the blood and not recommended for heart issues which I also have! I am allowed a cream but I must not overuse it.

  • Hi Offcut , hope you feel emotionally better now you shared your frustration about your health practice. Afraid that wont help the pain of your gout or the dilemma of your sons illness but take a little of the stress away for now. You are coping very well hope the gout at least subsides soon. Take care xx

  • It did, that is why I waffled on probably. I get times I want to scream or cry but keeping PMA is the way forward.

  • Thank you. My gout and lungs seem to have a link it was in 2008 that I had my first attack and the same year I was in ICU. It is not unusual that one will follow the other?

  • Hi Offcut, so sorry your gout is back as if you don't have enough to bear. I hope you feel a little better for letting it all out. I think I would be punching pillows and yelling.

    I don't understand why it is so difficult for Dr's to keep abreast of their patients' problems . Computers can keep an update of each issue & total medicines ok. Why on earth can they not symptom track each condition & flag up problems.I am lucky in having a great Dr but he is human & as anyone can make mistakes. Sometimes I think we will be better of with cyber diagnostics, unclouded by human frailties. Much better year to you & your son Offcut. Love Margaret x

  • Thanks I really appreciate it.

    My old doctors dealt with all my conditions I had at the time in a well structured way and it never seemed a problem to them. In the new one I have been told that they cannot deal with multi conditions in one sitting but I can never get double appointments?

    My wife has a few problems but they are the common ones that is an easy fix. My biggest problem is to get them to understand that when I do anything I get SOB, but they base it all on the oximeter after I am rested in the room. PR refused me as they said I was exercise intolerant I may need support O2. My Heart consultant has said the same?

  • Bloody hell Offcut it never rains does it, gout is very painful but I read some place Cranbury juice is good for gout it's worth finding an alternative if the meds do that to your lungs

  • Cranberry juice is a big no no when on warfarin as it is a blood thinner. I never make anything easy do I ;)

  • I don't know how you keep going Offcut. Yet saying that, obviously you do because you have to. But jeez, that is a dreadful story and the idiocy of your healthcare people is astounding. I hope your gout lessens very soon, you have enough to deal with without that too. Thinking of you x

  • Onwards and upwards

  • I see one of the posts mentions cider vinegar for your gout. When my arthritis started 24 years ago I read about cider vinegar and ever since have taken it daily. I take a dessertspoonful of Aspalls cider vinegar with about a teaspoonful of honey, more if needed, in a glass of warm water first thing every day. Its not cured it but I am still walking about at 81 and its no bother, its a habit now and I have it just before my first cup of tea.

  • I know cider vinegar has been about for dealing with all sorts of ailments I will look at that with may manuka honey

  • I first read about in a booklet from a chemists. It was called "Curing arthritis the drug free way" written by Margaret Hills SRN. I thought she spoke a lot of sense and I believe her daughter has a clinic run on her principles. Of course, like most natural cures, it takes time and she does advise taking more doses during flare ups, but find out if it agrees with you first.

  • I think all the drugs I am on are not helping.

  • The main advice is an acid free diet, no tomatoes, oranges. Take vit. C and B complex. I don't follow the rules, there are quite a few, but generally it says drugs and antibiotics drain the body of iron. The books are available still on Amazon I was surprised to see.

  • Hi Offcut. Cannot believe the hell you have been through for 8 years. Can only hope and pray that the doctors will get it sorted out quickly. Wishing you and your son all the best for 2016. Hopefully this year will be a turning point for the better for you both. Take care xx

  • Me too!

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