Sorry feet first

Im sorry to have just jumped in without introducing myself, just like von1 I also have been looking in on all that is going on and learning as well. I feel as if I know you all and I just jumped in! I am still in limbo land, i have had asthma since a baby and controlled for many years with brown and blue inhalers, until two years ago on holiday when I needed nebuliser and emergency prednisolone. Then in march this year my peak flow fell to 150 (300 average ) very sob I then started on the prednisolone again, dr changed me over eventually to seretide 250 that helped a bit but still could not get around the house without gasping still on pred he then put me on sprivia and because I improved greatly said over the phone that confirms it it's copd because that's the meds for that, he also referred me to respiratory dr. She sent me for blood test and echo on my heart because of badly swollen ankles,lung function test on the 31st. That was very hard glad i was in wheelchair that day.I did have spiro test at the doctors but nurse said she can not tell me figures only my lung age was 78 (I'm 63) two weeks ago I had severe kidney infection and pneumonia again the dr in acute med unit said I did have copd because asthma comes under that umbrella? I finished the preds in july. Any way I am still very short of breath when moving about and still need ventolin every day. So until next Thursday I remain in limbo. Apologies again I have rambled on and on. It is a relief to get this out on paper! I have the most wonderful husband and best friend of 43yrs I need to keep positive for him. B

15 Replies

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  • Sounds like you have got a lot of stuff going on at the moment and writing it down can be a great help. Being in limbo is always difficult, just try to relax and take deep breaths, Thursday will be here before you know it and things may start to make a little more sense. Take care. :)

  • Hmmm, seems the medics looking after you are as confused as the ones who keep trying to diagnose me. COPD and Asthma are similar, but not the same thing. COPD includes bronchitis and emphysema, but not Asthma.

    Astham: en.wikipedia.org/wiki/Asthma

    COPD: en.wikipedia.org/wiki/Chron...

    The doctors and consultants who see me have sort of put down that I have both, but don't seem to want to commit to that as a final diagnosis.

    I make no excuses for again linking to the NHS Sheffield information at sheffield.nhs.uk/respirator... - it tells you a lot of things you should know.

    If you want to know what each inhaler is for, have a look at patient.co.uk/health/Inhale...

    Yes, Spiriva is for COPD, not Asthma, but that sounds more like a lucky guess by your GP - "try this, does it work, good, you've got COPD" ! You can read more about Spiriva at spiriva.com/ - I like to know what I'm taking these things for.

    COPD will slow you down, it does most people, but the biggest effect on slowing down is the amount of time it takes to see consultants and so on... ;-) Above all, keep taking the meds, don't panic, and look after yourself. Don't try doing too much, you'll get used to your body telling you when to stop.

    I've had some good help at hospital from the respiratory rehabilitation nurse, who has got me to change the way I breathe and that's been a big help. I used to be sat here panting away, now I'm breathing 'normally', or at least until I get up and move about again.

    Welcome along, have a read at what others have written, most will probably be things you can relate to. If you click on Blogs or Questions on the blue menu bar you will find pages of what has been added so far, not just the few you can see on the main page. There's also a search box at the top, so looking for 'gasping' brings back 30+ items containing that word.

    If you can't find what you're looking for then ask - we are all here to help each other. Don't worry about rambling on or being a pain, you're not.

  • Sorry - I keep forgetting that the link does not work properly on here - "http://www.patient.co.uk/health/Inhalers-for-Chronic-Obstructive-Pulmonary-Disease-(COPD).htm" - without the quote marks is the inhalers page - or click on patient.co.uk/illness/I.htm then click the link for "Inhalers for Chronic Obstructive Pulmonary Disease"

  • Hi Ruby24 - Wow you have got a lot going on at the moment but writing things down and sharing can be a great help. There are a lot of helpful people on here so welcome and take care.

  • Hello Ruby

    I know how you feel I have been in limbo for 3 years still am but I am under the physiotherapist at the moment this is for my back but he seems to know what is going on so he is trying to get the respitory physiotherapist for next week for me so we can do somthing . I have found out quite a lot from everyone who knows more than peopleactually going through it. like you I have a very supportive husband we celebrated our 25th anniversary in may. so I want to be well for him and my kids. I'm on spiriva and seretide 500 but I have a lot of chest infections so I am always on antibiotic and prednisalone,like you I'm always breathless.keep battling that is all you can do I have found the answers hopfully will come.

    all the best

    kate

  • Hello and welcome to the family. As the other have already said .....you do have a lot going on. Keep positive, do rehab if asked, if in doubt ....ask questions or help and most important of all keep visiting the website. Thing will get better but it will take time. Take care. Marilyn x

  • Hi Ruby. What a difficult time! I have been diagnosed with mild asthma and moderate COPD. I am on Spiriva for COPD (as Gordon said, it is a drug specifically for that) and it has helped me a lot.

    I take my peak flow reading each day and although I know that peak flow is all about asthma, the Spiriva and the exercise I do has helped that. Initially in July, my reading never went above 150, now it is 230.

    I just know I feel a lot better, have more energy and can do more exercise.

    Hang in there.

    Lynne

  • Thankyou each and every one of you, I felt unsure about putting myself out there, read previous blogs that have had a problem. I have been lost on the net for a time tonight Gordon's links were very helpful, I can see the problem with the drs now, although I have asthma I also suffered many bouts of bronchitis working in an infant school for eighteen years, I have also smoked for years never at the school but when I got home,, I gave up July 7th 2007 so understand how difficult that is, I am now trying to wean myself of nicotine gum down to three a day, just another addiction! Like Katie holmes I also have a problem with my back (five discs gone) and a vertebra slipped backwards, so on multiple meds, one of Gordon's link to asthma also said about GERD I have that as well on 30mg lansoprazole but still wake up choking on the acid,, my problem is that I have not had a cold or infection since I was medically retired from the school seven years ago, even though my husband and son regularly bring them home, I don't have any mucus only a very dry cough and can't clear my throat,and very sob, so with what I have read on here, and tonight on the links, also the site about sprivia, it mentions urine retention, I have had four water infections since March plus the kidney infection I wonder if that is the sprivia? So many questions, perhaps the doctors are wrong I don't have copd. Thankyou all for your welcome kind words and helpful info, I will just have to be patient and see what happens on Thursday 13th. Sorry Ive done it again rambled on, B

  • Ruby,

    You're not rambling on. You're concerned, you need to know. This is what you need to do with the doctor too, make sure they are aware of your concerns. What I did was to write things down as I remembered them, then compiled it all into a list that I sent to my doctor a few days before I was due to see him, so he had time to go through it all and be ready to talk with me.

    You've just made me kick myself over GERD, as I missed putting that on my DLA application - despite having Lansoprazole myself. That's actually controlling it quite well, I take one each morning and don't seem to suffer as badly, unless I have something that sets it off. It used to be eating sweets on a night. I had a tub of mixed sweets, fruit chews, chocolate limes, blackcurrant and licorice, that sort of thing. They would quickly bloat me and give me the burbs, and I'd suffer during the night.

    You say you get GERD regularly, could it be something you're eating that sets it off? I now try and keep to more natural stuff, like a fruit smoothie or piece of fruit, sometimes some chocolate, which does not have the same effect. We had a cantonese style stir fry a few days ago, that gave me the burps most of the evening but was almost out of my system by bedtime.

    Whatever you do, don't become a hypochondriac with taking everything you read as applying to you. We've all done it I think, we read about something and think we have the same symptoms. Make sure you add all this to your list to ask the doctor about. I don't mind giving the links to find out, but it can be just as dangerous as not knowing.

    You're not far off your appointment, try to stay calm and take it easy. There are many things they can do to determine what is wrong. From what you said about Spiriva improving things for you I'd hazard a guess that they were right about COPD, but I'm not the doctor of course. It is possible to have both COPD and Asthma, and the medication crosses over as some inhalers work for both.

    When you see anyone at the hospital, ask them to copy you in on letter to your GP, that way you get to see your results from Spiro and FEV, as well as knowing what they are saying about you :-)

  • Thankyou Gordon I am now going to wind myself down, I have started a list and I think I will do as you say post it, so hopefully she will read it, as for the the GERD I no longer have coffee (de caf) after eight in the evening I eat my last meal before six, but succumbed to low salt Doritos and hot salsa this was at seven pm Sunday I woke choking but this time the acid also came through my nose, it took a lot of gaviscon and ventolin propping pillows up high to get to sleep again. Anything spicy which I love will repeat, sweets chocolate all things that I like instead of smoking, I now take two,spoons of gaviscon before bed just to make sure. B

  • Nice to meet you Ruby. Sorry to hear how ill you have been. I was told that asthma can lead on to COPD.

    Hope you feeling better soon. xx

  • Thanks hypercat

    Glad I jumped in now! That's what the dr says perhaps its true, waiting for Thursday.

    Good night all sleep well.

    B

  • Hi Ruby

    We are both out of the closet now hah hah I also have gerd and are on same medication has you after speaking with my gp she suggested that before every meal I took a spoon of gaviscon it has helped me so much with the acid I now enjoy having something to eat instead of avoiding it.Also gorden is such an help so glad he stayed has helped me and others so much.

    happy breathing

    Von

  • So sorry Von about the delay in responding to you and KingoftheCocktails, I am having a really tough time, just when I thought I was making progress I was struck down by gastroenteritis early hours thurs, my poor husband got no sleep and had to go in at 4.30am. Such an embarrassing time! Im much better today although coughing is extremely painfull. I will stay off line for awhile or I will annoy people, always something wrong with me my immune system must be shot.. Thanks again for your kind welcome and support it means a lot.. B.

  • Hi Ruby.Check out your local Breathe Easy group.They are full of BLF information on all respiratory diseases.They have talks,outings etc but most of all the members you meet will provide you with friendship and understanding.Details from the British Lung foundation Richard Cornish

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