COPD Friends

COPD

Is it possible to be free of COPD as my mother who is 94 was diagnosed with it 20 years ago, plus asthma and later emphysema, now after 3 infections plus 2 with pneumonia since Christmas and having Xrays & CT scans and consultation with respiratory doctor was told she had very mild COPD as they cannot get a reading with spirometry test. It seems every time she goes into hospital she comes out with a different result depending on which doctor she sees, has anyone had this problem or is mom just slipping through the net??? Also she has AF and badly swollen legs. Such conflicting outcomes is so frustrating as cannot get any straight answers can anyone

Regards Jan x

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Hi Jan. I understand your frustration. As far as having been diagnosed with copd, there is no cure as of now. So, if she was diagnosed with it and now it's not showing on tests, I'd ask my pulmonologist what they think about her lung function. Evidently she had only a very mild case or she's a very lucky woman. I really have no answer. What are her numbers as far as her lung function and her spirimeter tests? Like I said, there is no cure for copd, but what was her diagnosis in the beginning? Copd covers a lot of ground. I'd talk to her Dr's asap. Sorry I can't give any better answer. Good luck to your mom and you. I'm happy for her not struggling with oxygen.

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Thanks for your reply she has seen respiratory doctors, cardiologists etc but no firm answers she is on furosemide tablets for fluid in the legs and many other drugs, they cant get a reading off spirometry test as she cant blow hard enough non of this makes sense. It seems to me because she is old they don't seem too bothered but that's just be me feeling inadequate I do appreciate your advise many thanks hope you are well all the best Jan xx

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You should follow your instinct on this. Your right, sadly, that sometimes when they are old, some Dr's just drag their feet or just medicate. I'd get another opinion. Sending prayers for her. Let me know how she is ok?

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Thank you x

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How is your mom doing, better I hope

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Hi Jensmom thanks for asking about mom. She is having a good run on the COPD front at the moment think this is due to her meds & anxiety tablets working ok. Saying that, she has had 2 hematomas on her left leg due to falls. She has fallen 6 times in twelve months just got back to CH from A & E after an overnight stay cos her BP was low. They are referring her for investigation as to why she falls but I told them that is down to her being stubborn and not asking for help when needed..... It was very kind of you to be concerned and I do appreciate that, it can be a lonely place to be sometimes especially as siblings are not very helpful in helping out with the frequent hospital apps or even enquiring as to how mom is. Seems out of site outta mind I guess.

Hope this finds you well. Regards Jan x

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I'm glad she's doing better with the copd. Xanax is a great help to me. As far as her falling, I'm guilty of the same. I do have vertigo bad but I'm hard headed and won't ask for help a lot. My daughter Dawn, like you is pretty much on her own with my dr appts and hospitals. I've been fortunate, February was my first ever hospitalization, and I'm lucky to be here. Sepsis pneumonia and copd exacerbated along with other stuff. My son just recently moved to Tennessee and I lost my oldest daughter Jennifer in an accident January25, 2016. Lost my mom to cancer 6 months before that. My dad passed 2010. I l am so thankful dawn is so close by. But she, like you is on her own. I guess we're all just a hot mess lol. But if you need to talk ever I'm here. Just hit me up on messenger k. Take care sweetie, and say hi to your mom💜

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You are so very kind & I am so sorry you have so many loses in your life and I can relate to that. I nearly lost my son in an accident but thankfully he pulled through tho it has left him with anxiety & depression which is hard to see. It amazes me how caring Americans are on this site (I am in UK) always ready to help whilst coping with their own problems I really appreciate all the posts I have received amazing. You take care too and love to Dawn who loves you very much x

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Thank you. She will appreciate that. I have lost a lot but I'm still blessed a lot. I have 5 grandchildren I just live for and they need me, they've lost so much. Believe me, we have our share of uncaring at times over here but for the most part, when needed, their kind side comes to the fore. This disease sucks the life slowly out of us all, patients and caregivers. We need each other, or we would be crazy😊have a blessed day💜

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Hi Jan; Once you have copd you don't get rid of it. Is your mother being treated my a cardiologist, if not she needs to, she needs to be on fluid pills,having that much fluid in your legs will effect your breathing. She needs to be checked for Bronchiectasis, by pulmonary, I recently learned that this goes along with asthma and it causes lots of infections.

I do agree with you, she needs to find a good pulmonary and cardiologist doctor that will really find out what is going on and get her on the right meds. What she has can not be treated by GP, they do not have enough training for it.

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Thanks for reply. Mom has Atrial Fibrillation and is on meds for this as well as numerous drugs to many to mention here along with COPD. All Doctors & consultants say she will continue to have chest infections as at her age not much they can do, I appreciate your advise and hope this finds you well, many thanks best wishes Jan xx

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I have to disagree with the doctors when it comes to copd and chest infections, I also had this problem and pulmonary put me on a daily dose of Zithromycin 250mg to prevent infection and when I do get one they increase it 500mg for 14 days. I have been doing this for over a year now and it has helped me so much. My quality of life has improved at least 90%. I wish you and your mom all the best, I know how hard this is.

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I have heard other people talk about how zithromycin has helped, but one of the side effects is arrhythmia. Since she has atrial fibrillation, it may not be a good medication for her.

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Hi Batbara; I have A Fib also, in the beginning I had a small reaction but the longer I take it , it doesn't effect the heart any more. I think the body has got used to it. I used to have alot of infections but since starting this they have become less and less and not so bad when I do get one. I think it's worth mentioning it to the doctor's, they made not be up to date on treatment plans.

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Thank for that Lorbic . It’s always good to hear new information. That why I love this forum!

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I take Azithromycin 3 times a week. Because it can cause permanent hearing loss my pulmonologist orders a hearing test every 3 to 6 months. I've been on this regimen for over a year. Jury is still out on whether it actually reduces exacerbations.

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Hi mlej: I have been taking Azithromycin daily for a year, this could explain why my hearing has gotten so bad. Pulmonaary doc didn't say anything to me about this but I will asking her.

I have found that it does prevent bad flare ups, I get mild ones but nothing like I got before I started it.

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Hi 1954jan, I know how frustrating it is to deal with the Medical community! I'm hoping you'll find help here. That said, taking care of someone that means a lot to you is a demanding job as you well know. I hope your taking care of yourself. Taking time just for you. Eating right, enough sleep etc. I took care of a dear friend until he passed and there were times when I had to get someone else to be with him for a little while. So, I know how draining it can be. Just want you to know that I understand.

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Thanks jips mom is in a care home but it is my responsibility to take her for hospital appointments for which there are many between 2 hospitals all very tiring for both of us as you may know you can wait a long long time even with allotted times very distressing for us but needs must. I do eat well but sleep is very hit & miss as I cant help but worry and await the next phone call saying mom is ill again or has had yet another fall as she did on Thursday and although paramedics were called she refused to go to hospital which is understandable as they just keep sending her for the blood tests or CT scans with no explained outcome they just say it is her COPD which is anything from asthma to emphysema very frustrating so now mom is refusing all treatment except to take her numerous meds, but many thanks for your reply I wish you well. Jan x

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Ha, your mom sounds like me when it comes to hospitals. I'm glad your somewhat free from the daily chores but it's got to be very distressing when you can't get answers for your mom. Hang in there we're with ya!

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Thank you x

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Hi jips I hope this finds you well today, as I had some good advice from you last week (much better than we get from doctors) I thought I would ask you if you suffer from fatigue, as mom is exhausted after she walks just a few steps on her zimmer, she is so frail now and when I give her a hug I am scared of hurting her as her illness progresses more parts of her body hurt but doctors seem to ignore this or don't understand her, she gets so frustrated and I end up feeling helpless. Jan xx

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Hi Jan I'm doing okay and thanks for the kind words! Ya, I am fatigued quite a bit. I'm in Pulmonary rehab twice a week and that helps a lot. If you have anything like that around you, you might want to look into that. We have one lady that's in her 90's and she can only exercise her arms but it helps cause it gets some strength in her arms and makes her heart healthier. The staff watches her very closely. I love the staff! I'm stronger and I'm not quite so short of breath as I was before I started.

As for hurting her, I see that, that is a concern. That's got to be tough. Just a little hug is all that's needed really. I'm sure she knows you love and care for her.

The 1st time I had an exacerbation, it's scared the hell out of me!! I haven't had one for awhile now but you don't forget something like that. Before I got into rehab they were happening on a regular basis. Now it's just feeling tired. My meds help also. Morning is when I do most of what I need to get done cause around noon I'm exhausted and need to slow down.

I feel for you! Sounds like your doing everything you can for your mom and that's all you can do.

I know it's hard. Your mom is lucky she has you!!

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Thanks jips means a lot to me to know you relate to moms problems yes it's hard but hey she's me mom, I love your phraseology makes me smile, mom never been offered pulmonary rehab have asked but it falls in deaf ears. Strange how a very kind guy living in the USA can make my day just by a few kind words, have told mom about you she said to say hello, stay well Jan. PS we live in Birmingham UK

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That is so nice! Tell your mom I said hi too. Sorry that she can't take advantage of Pulmo rehab. I was in London along time ago and had a blast! Went up into the countryside to see a woman I met in Mexico. It took a bit to learn how to drive on the other side of the road but learned real quick. (smiling) Traveling is not something that I can do anymore but I have great memories.

When it comes down to it we are just people trying to do the best for yourselves and each other. I Love that I made your day. That makes my day!!

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Nice one thanks

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Yep. Hang in there!

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One other thing and then I'll go. Whenever you need to talk, about anything PM me. I'm always here for you and your mom. Hopefully I can make things a little less painful for the two of you. Hang in there.

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Thank you that means a lot to me, I do have siblings but they are as helpful as a choccy fireguard (except for my brother who does help now & again) Is it PM on here??

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I'm glad you have your brother. I have my sister. She lives in another state but just having her support helps a lot.

It's not called PM on here but if you go to my home page or anyone's home page, there's a sign that says message just hit that and see. It'll be a 1st for me too but I think that's how it's done. Hope you, your mom and your partner are doing great!

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Hi, my mum is 92 and has similar conditions, she had Emphysema in the 80's due to my dad's heavy smoking (mum has never smoked). We thought she has been successfully treated at the time but a paramedic told us a while ago that Emphysema damages the lungs, as you may know COPD covers various lung conditions. Mum also has AF & for almost a year she suffered with cellulitis which developed into lymphodema, they increased her water tablet and she was hospitalised twice to be put on intravenous drip. Mum was lucky as it could have developed into sepsis don't ignore swollen legs and as others have said COPD is a lifelong condition, I hope you get her sorted mum had a lung function test at the COPD clinic at her surgery the nurse used a computer programme to test her lung capacity & then prescribed an inhaler Formeterol.

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Hi thank you seems your mother & mine are very similar & have both suffered terribly mom has been hospitalised many times & sepsis is always a worry but fortunately she has escaped it. She has good & bad days & cellulitis in her legs comes & goes. I understand COPD is umbrella for many lung diseases but when mom is having a good day you wouldn't know she was ill. I wish you & your mother the very best & hope she gets the best of medical help she deserves. Regards Jan x

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Hi Jan, anything is possible!!! Your mom is lucky to have you by her side. One of the most important things to me (COPDer) is the person helping and nearest and dearest to me. Sounds like she and I have caretakers who really take care. I can't stress the importance of your roles in our lives. Love and light to you and your mom

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Thank you Diane it's nice to be appreciated the way I look at it is she bought me up & looked after me when I needed her now she is in need I will always be there for her no matter how hard it is to see her suffering with this awful illness exacerbations are more frequent now it's very hard for her to deal with I do my best hope this finds you well as can be love & light to you too many thanks xx Jan

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The CT scan should have been the best way and give the best information to determine the extent of lung conditions I.e. emphysema . Many COPD patients do not get one so have to rely on a spirometer reading. You could ask your Gp for a copy of the CT scan?

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