Hi, i joined this group a few months ago. I was diagnosed Dec '21 after being hospitalised because my sats were so low 70-80 at that time. Then it was a whirwind of tests before I got my complete diagnosis with the letter from my consultant with all that fev % stuff at the end of the letter. i went to my doctor to ask what it meant, did I have mild, moderate or severe copd. He said, let me google it !! Oh it's mild he said. I have been really well looked after by my oxygen nurses, the pulmonary rehab nurses and everyone involved with the tests and care of me. So this past year i've ambled around tied to my oxygen tank thinking i'm mild so not too many worries. Think again! My nurse came to check my sats last month and they are now dropping, with excertion, to 60-65. She even did an arterial blood test to check her oximeter was woring properly. So I get called back to hospital to see the consultant and she was very nice and explained they are worried about my sats and that there is a few options available to me, one which is a lung transplant! After picking me up from the floor she said " you don't like that idea?" Considering I thought I was mild I'm now told I'm top end moderate. Its a lot to take in, she said they can do lung reduction. I'm already on happy pills for my anxiety/panic attacks, I'm thinking i'll need a bucket full before surgery! Thank you for taking the time to peruse my problem, which is do I or don't I ? Will it hurt? Will I survive?!
Emphysema: Hi, i joined this group a... - Lung Conditions C...
Hi Zand, what a shock for you. I'm surprised that your weren't feeling very unwell with oxygen levels dropping so low on exertion. Fortunately you have a nurse who took prompt action and a consultant keen to do her best for you. The lung reduction surgery is quite a big operation in itself and recovery would take time post op. A lung transplant would mean extensive tests to assess your suitability and then, if all was OK, going on a waiting list with no knowledge of how long the wait could be for a suitable donor to be found.
In some respects you are fortunate that you are considered suitable for surgery of some kind. Personally I would write a list of questions and ask for another appointment to see the consultant, take a pill or two and go to talk everything through with her before making a decision. My best wishes to you, Carole xx
Thank goodness you now have support after the shock you’ve had. You've had some good replies with others to follow I’m sure. I just want to wish you well.
Take care, Carole xxx
Good old Bert’s Bees…..lol. Xxx
I have had lung reduction surgery on both lungs and it was the best decision I have personally made. You can see my previous posts on hereGood luck with whatever decision you make
Hi, how do i find your previous posts? I put your name in search but came back 0? I am interested to know where you where health wise before surgery and the benefits gained afterwards, also how long was recovery?
Since my diagnosis of COPD I have had robot assisted lung reduction surgery on both lungs and feel great benefit from these procedures.I do my pulmonary rehab exercises each day and and very active in the garden
Sadly covid and shielding has meant some backwards steps in health, through lack of regular outdoor exercise, weight gain and mental health, and now a significant fear of mixing with people
Yes i can relate to the fear of mixing, before covid i was a big traveler and spent 5 months a year in India. Then it was lockdown and not getting out, then admitted to hosp with 1st exacerbation ever in 2020. 2022 covid got me. Since then, deterioration a fast downwards slope. Severe breathing probs, weakened strength, frequent chest infections, now i fear i will never travel again. I live near a small village in the Highlands and i don't even go to the village anymore. Online shopping and help from friends keep me supplied. The last 6 weeks been trying to get on top of a pneumonia virus and bacterial so been the worst i have ever been. Today is the first day i can feel air breathed in....such a relief! Have been reading up on lung reduction and Zephyr valves but it seems only a small proportion are medically eligible for the op. I'm glad it was so successful for you. Keep gardening, try going for a walk, don't lose the benefits you have gained, use it or lose it is so true....i need to follow that too!
Hello Zand60, goodness me, what a rollercoaster for you. I am sorry to read that your 02 levels are struggling for you, no wonder you feel so anxious.
I do find that sometimes well meaning health care professionals can be somewhat reckless with their language towards us, and their words can be quite a shock!
As you were only recently diagnosed have you taken a look at the self care management plan on the Asthma + Lung U.K. website yet ? Working our way through that may give us a helpful guide as to how we can care for ourselves even better and offer you some clues as to questions you can put to your consultant when you them next.
You could also speak to one of the nurses from Asthma + Lung U.K. on their helpline. I have heard they are very supportive.
Whichever treatment you may be offered in the future, one of them or none then try to keep yourself as well as possible for any future treatments.
Have you been offered the drug Roflumilast? It is the ‘last’ drug in the cupboard for those of us with COPD. I was offered it last year and after working through the minimal side effects while the dose was tritrated, and it has really helped me. It hasn’t stopped my 02 levels dropping but I have felt well on it. Only prescribed initially by a consultant so perhaps talk that through at your appointment?
Keep in touch and let us know how you get on won’t you ?
Hi Zand60,🙋♀️ sorry I can't offer any advice apart from, as others have said, ask lots of questions. Just wanted to add my support and say you're on the right site for help and understanding, there are so many lovely people here wishing you well. Good luck with whatever route you decide to take. Keep us all posted 🙂xxx
I dont really like to say much but your doctor certainly wasn't honest about being mild my lung function is 25 which I'd stage 4 yours must be lower than mine to be offered the options the nurse has told you about xx
Mine is very severe and I'm under Harefield tx unit and palliative care team.
What is your fv1
I'm not too sure, i'll dig my paperork out. I am being sent for another spyrometer test and to papworth for a heart ct scan to see do I need a stent putting in. They put me on heart tablets last year to see if that would delay it. My husband has taken great pleasure in telling me all about his stent fitting lol.
Yeh you should try find it because it's allways worth knowing what your lung function is I do know from 30 downwards it's stage 4 if you need a stent putting in it will help you hope all goes well with everything keep us all updated xx
Wishing you well, lots of people here already giving you advice so just wanted to offer my good wishes to you, have a look at other’s opinions that have had/ offered the same & good luck with your decision, from what I’ve heard & read it does seem to help 😊👍🏻💐 xx
Thank you for your good wishes, it does make a difference to my well being. Yes i'll have a look at the opinons, thank you xxx
What a difficult decision! I wish you strength and calm in making your decision. Best wishes JJ_7❤️
This made me laugh Zand60 when i read that your doctor had to google the results, but its no laughing matter regarding your treatment and a big decision to make. I can only agree with CDPO16 make a list of questions for your next appointment but take heart there are people on here that have lung reduction and have been fine x
I'd say lucky you since very few of us with such mild symptoms even get oxygen never mind the offer of a lung transplant. So, what is your FEV1? Mine last time was 32% so I am very severe. I also have bronchiectasis and a few other complications.
Sats as low as 60 are a serious concern of course although the speed of recovery into the 90s is also important. The measure is at the periphery of the body - not as far from the heart and lungs as the toes but a good way out. I drop into the 80s but am back to 90 in about 2-3 minutes and less than 1 with O2. I gave seen a 70 but the COPD nurse dialled 999 before I could stop her....
I would first take your GPs advice and Google lung transplants. It seems like a simple op but in fact is one of the most challenging transplants - tougher even than heart, kidneys and liver as I read it.
But there is no point in beating about the bush. First they have to find a match - - you have five lobes in you chest - two on the left (heart) side and three on the right. They are connected at the bronchus through which the air is passed.
Then they test you to make sure you are fit enough for the long op. And, to be honest, worth the valuable and rare lungs available.
Yes it will hurt - a lot. Yes recovery will be tough. The risk of serious rejection cannot be ruled out. And the survival; period post op is 5-10 years I read.
Sorry, but that is what they tell us. Do discuss in detail with your clinician, either a lung specialist or, even better, a seriously experienced and very senior COPD nurse.
DON'T GOOGLE! Unless you are using proper peer reviewed research papers, patient experiences or tx unit's own discussions.
Oh dear. You don't get it do you?
? No. What don't I get? Sorry if I'm been a bit slow.
Your wrote: DON'T GOOGLE! Unless you are using proper peer reviewed research papers, patient experiences or tx unit's own discussions. What are you saying then?
What I'm really saying is check your sources, don't believe everything you read on google as it can be very scary and disheartening . E g. Life expectancy with stage x copd, what to expect etc. Only use trusted sites e.g. nhs, research papers, papers published by tx teams. Sorry my previous life as a college librarian occasionally rears up.
I'd thank you but I have rather been there a long time.... I am 79, had my first internet co9nnection in 197something and first web activity in 1993. Worked in internet land from 94-2003. So I agree. Hence my content.
Thank you Timberman for your very in depth reply. It took me all day Sunday to find my report from last year with the FEV on it, I had filed it somewhere completely stupid. So my FEV1/FVC percent is 62.88%, it goes onto say I'm moderate copd with MRC breathlessness scale: grade 2.
I believe its the drop in my sats that worrries them more, my oxygen nurse took a arterial vein blood test as this gives better results than the oximeter. My sats drop to between 60-70 when I move, this is with the oxygen and it can take me 2-3 minutes to recover as far as 85 but 5-8 mins to get back to 90.
Yes I have started to jot down my questions when I next see my consultant. Thank you for your views, right at this moment I don't feel in my heart I deserve someone elses healthy lung as it was my own stupidity through being a smoker that has got me in this mess. I gave up 2 years ago through the NHS site so there is no fear I will ever smoke again.
Glad it was helpful. I smoked from age 14 to age 50! Pretty heavily. And I worked in the old world of newspapers so much paper dust, metal fumes etc too. I had a leukemia event at age 60 (2003) but have got through that. COPD was diagnosed from biopsy in 2006. I am now 79, have an FEV1 of 32% and am on O2 a lot. But today the sun shines, I had my coffee and a very nice croissant!
Sorry for your shock with the misdirection. I have moderately severe emphysema even though I quit smoking 26 years ago. Lung transplant is majory surgery with the risks that go along with it, but If it goes well it can change your life. Decisions. Good luck. I'm 74 now with supplemental O2 just at night for sleeping. I'm probably too old, and not even on transplant list but honestly if they called me tomorrow saying I could have it, I would do it.
Thank you, if you can get to your lovey age it gives me hope xx
Hi. It is a shock when tx is first mooted but I'm amazed how calm I seem! I have very severe copd and have been under Harefield tx unit and palliative care for 10 months now. They are amazing! I have had two seven hour days of tests and discussions with tx and palliative consultants, tx and palliative nurses, tx coordinators, students, physios. . . And 'phone calls and webinars too. The most important thing is staying physically and mentally/emotionally healthy. Excercise is very important and it can keep your lx function stable -" training for transplant" the physios call it. I do yoga, pilates and zumba (seated). I do as many fun things as I can too! Off to Saltaire, Bradford and Leeds tmrw for a mini holiday and I always have theatre trips booked. (Pride and Prejudice in Leeds) If I can help in any way please just ask. Karen. 🙂
You are just amazing x
Thankyou but I don't think so. 😊 I'm just trying to live my life in the best way possible for me and my family. They are the amazing ones! I'm very excited as we are travelling north as I type!
Oh to be up North lol. I have to take my oxygen tanks with me when I go anywhere and they are a bit heavy. I do my pulmonary excercises every day but as my sats drop so low I give up before I've completed them. In reality I don't think I'm healthy enough for a transplant.
You are very good to do your pr every day. I have to go to classes to stay motivated. I'm lucky that my sats stay high and when an oxygen assessment is mentioned I've managed to swerve it thus far. I have booked a mobility scooter for the coronation weekend though so that I can thoroughly enjoy our local 'Party in the park'! They are also useful for carrying the picnic on. 😂
if you can find the results of your pulmonary function test or spirometry and can post the FEV1% of predicted that would indicate the stage you are. Not sure how your doctor and nurse could come up with different conclusions looking at the same results but I’m sure it was a shock after being told you were mild. Good luck and I hope you can get everything sorted out.
I found them eventually, see reply above. I was thinking the practice doctor hadn't had much experience with lungs. thank you for your good lucks.
You posted your FEV1/FVC which is used to confirm COPD but does not indicate your actual lung function. There will also be a row titled FEV1 and will have a reference number and then your number and a percentage afterwards which is your percentage of the reference or predicted value. It is that percentage that is used to determine your stage. If it was a full Pulmonary Function Test towards the bottom of the report there should also be a row titled DLCO, what is that number?
I know exactly what you want/mean but unfortunatley I cant find my original copy from the hospital consultant with that on. The one I have now is a shortened copy from my doctors. I can ring the hospital and request another copy which should have the complete figures on it.
Got it! And that number is 34.1 if I've read it correctly. I've been booked in for a chest x-ray next Saturday, they seem to be moving rather fast..
Do you have the actual report or did you get the number from someone else? I am skeptical if that is the correct number. If you have the report could you read all of the figures from the line that says FEV1 so I am sure we have the correct numbers.
This is based on my readings from last year.
yes I can read it just fine but is rather confusing. Your FEV1 is 2.39 which appears to be 99.9% of what is predicted for someone of your gender, ethnicity, height and age. You FVC and PEF seem to both be above your predicted values so is confusing why you need oxygen unless it is because of the severe LAD disease mentioned which I know nothing about.
Generally the pulmonary function test or spirometry has several rows of your results and on each rom is the predicted value, your result and then the percentage that your result is of predicted. It would be nice to see that sheet as I can only assume that your result for FEV1 is 2.39 and that the 99,9% in brackets is the percentage your result is of the predicted.
I've hunted and hunted and can't find that original letter so all I have is that copy they sent me. I'll wait until I have my next spirometry test and I'll put the letter under lock and key😜
after looking into things extensively and feeling positive i would advise to go for whatever they are advising. my emphysema is homogenous which means it is throughout my lungs which makes any sugery impossible. i am on a downward slope and would jump at the chance if i could have surgery. not an option for me.
Good luck to you. xx
Thank you, it must be hard for you to know they aren't doing anything more for you. Take care and thank you for the support xx
I had a lung reduction in 2018 the first time I have been in hospital I wasn't scared at all as it had to be better than struggling to breath all the time, it was really ok and I felt normal the first time I got out of bed and had a walk around I would do it again in a heart beat good luck to you all the best
Thank you so much, it must be lovely to not be afraid of hospital. I had 5 children and left it until the last moment to go in, my last 2 boys were breach but I still refused all injections lol. No i'm not brave just scared to death of needles, although it seems to have reduced the older i have got. I still suffer with " white coat syndrome" when I go into a hospital for tests and appointements.
Yes your right, anything they can do for me that will reduce this breathlessness will be for the better, thank you for your good lucks xx
Thanks for your kind thoughts. I just have to accept the way things are, it does hurt when they say there's nothing more they can do for you.
Gosh you've been through the mill, well done for staying strong. I got happy pills from my doctor, thats what I call them. They really help with my anxiety and panic. If husband took a different route to the shops I would go into meltdown but these Setraline are doing the trick. You are amazing after all you've been through, keep a smile on your face xxx
thanks and you look after yourself. Best wishes Joan xx
Hi Zand60 was reading through the replies to your post. I am brand new here and need to say there are many good people here. One of the replies mentioned getting a spyrometer to keep a check on your lung fuction. I would agree with them, for that matter I just bought one today. To monitor my own function / breathing so I can track what is just going on.
wishing you well
I'm sorry you've had such a shock. I should take time to mull over this distressing news, though I think they were misguided in telling you that you were mild if you were on oxygen. There have been quite a few posts lately about transplants and lung reduction. I'm sure people will be along soon who can tell you much more about these things. You could try going to Search (top right hand corner) for more information. People have benefitted from both procedures, but you really need time and much more information before you can make any sort of choice. Very best wishes. xxx
Thank you for your reply and advice xxx