A doctor who workswith my specialist said that oxygen is going to be installed in my home & as far as I understand it I've got to wheel it about( a tank)or I think Lok like a space girl & have it on my back I don't know whether this is to start while I'm leaving hospital
this gives them ANOTHER excuse to use me as a pin cushion -they can't help themselves Every decision thtey make they MAKE SURE the process includes using me as a pin cushion one thing I will
put my foot down is I WILL NOT have ANYONE come to my home with another excuse to use me as a pincushion & I wil NOT keep going back because they've found ANOTHER reason to use me as a pincushion
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Sara_2611
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I appreciate that having bloods drawn isn’t pleasant. Especially when testing oxygen levels which are more intrusive. But my understanding is that it’s extremely important they get correct levels and check you are not co2 retrainer. They don’t want to make your health worse by using something that is meant to help you. People are trying to help you and make you as well as you possibly can be, they definitely aren’t drawing bloods to be difficult.
I hear what youre saying. The doctor who came in failed 4 times. Three times on my left arm because he said he couldnt get any out - even trying to take some out of an existing bruise.
On the 4th failed attempt managed to get some blood out only for him to be told he d got the wrong blood out even though he went further up the artiiary - so he had to come & tell me so.
In my mind my observsation is that he demonstrated a small level of incompetency. He is a senior doctor & told me so because I d never seen him before who informed me he was trained to do this & dealt with all types of difficulties in getting blood out &. always succeeded despite difficulties he faced.
It has now been agreed (& with my specialist to have this done in my earlobe so I ll have to numb that more. To cover all bases I enqired what would happen if that failed I will be getting my prescription anyway so I can be discharged to have the oxygen at home. Some upstairs in my bedroom so I can sleep with it on & some downstairs.
For obvious reasons I was advised to take it off when going to cook & then when I sit down to eat to put it back on
The staff are not using you as a pin cushion. They are doing medical tests to help you. I have an oxygen concentrator downstairs with a nasal cannula long tubing to enable me to get around downstairs and another concentrator upstairs. My ventilator connects to that one when I sleep. We bought a portable concentrator for when I go out, but also have oxygen cylinders. Do stop being so negative.
I agree with Millyboo. It’s important to get rid of the negativity and see that the doctors and nurses really are on your side. They are trying to help you. Most of us have a concentrator with tubing and canula. It’s hard to get used to, but you will get there. I also have a portable concentrator (an Imogen 1), just like a shoulder bag, which gives me a couple of hours for lunch of shopping. Find the positives if you can.
The relief of knowing that I was to be given home and ambulatory oxygen to improve the quality of my life far outweighed the tests i had to have. Without them I would never have known that my heart was failing due to the lack of oxygen reaching it and other organs. I have machines up and downstairs with plenty of tubing to get about and cylinders for going out. I did feel a bit awkward at first but now it's part of me and the pinpricks are only at my six monthly oxygen reviews.
I must be one of the lucky ones. I have never had a problem with taking blood from a vein in my wrist , no pain whatsoever. My oxygen nurse is always surprised. Everyone tells me its painfull but I dont flinch. I think it may depend on who is taking the blood, although I have had numerous doctors and nurses but never felt any pain. I do have a high pain threshold thank goodness .
I have one oxygen concentrator upstairs ,refused the one for downstairs as I have an extra long tubing to enable me to walk around the house even the garden.
I have 2 small cylinders for going out and one large cylinder in case of power cut.
I am fortunate as was first prescribed 16hrs a day then reduced to 7hrs . My last visit fir oxygen assessment I was told I dont need it anymore and my next appointment 12months . I didnt have to have the blood test even . It was because the walk along the long corridor to exam room is the test . My oxygen level dropped a little but recovered to 96% within a short time when sat down.
I still have the oxygen at home and I am grateful as if I needed it because of infection etc I don't have to call ambulance or go to A and E as have the oxygen at home.
I weened myself off oxygen through sheer determination and excercising around my house and garden.
Hi Sheila, Im just on ambulatory oxygen for exertion but have had the arterial blood tests several times, once with no pain at all. But when in hospital with respiratory failure I had the wrist test done while in a major panic attack, breathing feeling choked and six medical people standing round me so clearly a survival issue A nurse kept trying to get the blood out, excessive pain, and he had so little skill with it that it felt like he was digging up a road. So I really sympathise with those who have suffered from this, but pleased yours are so much easier.
Yes there are many who go through a lot of pain so I count myself lucky.
Even the doctors would say they used to practice on each other and it was painfull.
You had quite an ordeal pleased you survived.
I used to suffer panic attacks really dreadfull . Still get them from time to time if I rush when out and about. Learned to walk slowly and to remember to breathe correctly does help if you breathe lol🤣🤣.
I still have the oxygen at home and feel it a security blanket and there if I need it.
Some of us have lungs so severely compromised that we are not able to wean ourselves off oxygen no matter how determined we are and how much exercise we do. 🙁
my condition is severe Copd and has been for the past 12yrs. My lung function is less than 30% so I do understand the condition. My consultant said that most patients who are less severe than me and have higher lung functions are in wheelchairs and on 24/7 oxygen. He even used my case when training younger doctors on Copd and explained it all depends on a patients attitude to the disease. He always tells me to keep doing what I am doing as it obviously works. Also my Respiratory team tell me the same.
I understand we are all different but I am a very Positive person and live my life by "The Secret" . If you can vision it, it will happen. Positivity is the best way forward. I have changed my way of thinking as I was very upset when prescribed oxygen during the Pandemic caused by being in Lockdown and lack of excercise.
My oxygen levels were 77% so prescribed oxygen at home. When it was being installed I felt the end had come.
I then made the decision to get my fitness back ,so slowly but surely would walk around my decking with the oxygen on daily. I would increase my steps by a little every day until I got stronger. It took a while but got there in the end.
I then started on stairs. Learning to breathe in on first step and out on 3rd step and so on until I got to the top. I can now climb the stairs in one go ,not fast but steady and concentrating on breathing correctly..
It has worked for me and hopefully it could work for others . Be Positive and avoid negative people as they can bring you down.
I wish you good health and happiness. Have a lovely day.
Good for you. However, your post comes across as somewhat damning to those of us who are positive people who do the best we can. If determination, positivity and exercise meant people didn’t need oxygen, what fabulous lives we could have. It would be wonderful not to be connected to oxygen 24/7 and not to have to take 18 tablets a day. However, I am so grateful to have been diagnosed and given treatment which is keeping me alive.
My apology if you read my post that way . Members on here who know me quite well know I will give advice to anyone to help .
I do understand some members have more than one medical condition and need oxygen 24/7 .
I also take medication for my COPD and understand the condition well. My life has its burdens believe me, but I have learned to overcome them. I concentrate on what I can do not what I cant .
I also tell members who are scared when first diagnosed (as I was 12yrs ago ) that COPD is not Terminal but progressive. It is up to the individual how they can slow the progression down.
I used to suffer terrible panic attacks but now control them .
I am sorry you misunderstood my post as I only give advice on my own experience, also quite a lot here will agree with me on following "The Secret "
I was terrified when I first got home! I cried quite a few times, ranted and raved (my poor OH!), and was so upset. However, a year on, I've got used to it. I still don't like it much, and still feel very self conscious when I am out and about with my portable concentrator, but my daughter pointed out to me that people are far too wrapped up in themselves to care about me! It's just a part of my life now. You will be fine, I promise. xx
cheers its the younger generation im concerned about. When they see something theyve never seen before ir doesnt keep in line with their fashion or technology they make snide discriminative remarks simply cos they dont understand & tactless
It's an interesting discussion, positivity. Im a great believer. When I was first diagnosed at moderate in 2000 I read terrifying horror stories online but I drew a lot of strength from a forum called EFFORTS in the US (this was way before this lovely forum was started). Now I draw inspiration from stories like yours Sheila. And others here too.
When no-one was sure I would survive during my hospitalisation in 2018, when I finally got home I was told by my respiratory physio that no one gets back to the lung function they had after going through such a serious illness. My fev was 36% before I was ill, and through slowly slowly restarting to walk, and lifting very light weights and building up, I got my fev1 back to 36%. (That was a while back and likely bit lower now!) I know we're all different, and Ive no idea how I managed this - maybe just by being a bl**dy minded person!
However I am very lucky - I dont live with pain, depression, I am more or less healthy apart from the lung conditions and I have a lovely partner and great friends around me. It's not so easy for everyone, some just cant exercise for various reasons and if I was one of them I might well feel resentful or depressed hearing how important exercise is - and of course it truly is - if I couldnt do much of it.
There has been interesting debate about positivity in the cancer community - e.g. if you dont go into remission, or if your cancer metastasises you can feel like you failed because you haven't somehow been positive enough. There are interesting articles by Barbara Ehrenreich about this - here's a good link for an article titled "The negative power of positive thinking" :
As you say though, concentrating on what we can do, rather than what we can't is the key thing - it lifts the soul and is something we can all try to do, and can support each other to do. Thanks for your posts Sheila xx
my mum & dad keep banging on about that concentrate on things you can do rather than things u cant do!
What they cant seem to understand is to enjoy the memories of when you could & look into if you can continue it in the future - with me its horseriding Ive been an equestrian for 40years & im hoping that my oxygen levels will allow me to go riding in the future as i dont want to give it up for good - rather im not willing to give it up for good
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