Looking for some advice 😊

[Kellyjm77]

Hello, I was hoping for some advice on some health issues I am having. I have suffered with chest infections since a child, and a diagnosis of M.E when I was 12. Over the last few years I have been increasingly out of breath and suffering with palpitations. I am 39 yrs of age and do not smoke and not over weight. 18 months ago I became extremely fatigued with headaches and aching joints everyday. I also presented with lung congestion that after several courses of antibiotics would not clear up. I became very breathless with low oxygen levels and ended up in hospital. Steroids cleared the congestion but have continued being very breathless the more I move around and continue to have pain in the lung area due to the pleurisy. June of last year I experienced heart palpitations, I was admitted to hospital with a heart rate of 180 Bpm. Adenosine only made the heart rate faster I was eventually shocked and my heart rhythm came down to 110bpm. I have been diagnosed with atrial tachycardia and P. O. T. S. I have recently had some lung function tests and seen a lung specialist who has referred me for a ct scan as my gas transfer is low. I am feeling overwhelmed by all of this, my quality of life has been effected so much as I feel quite unwell everyday. I am not seeing the specialist until the 7th of July, he has referred me to a respiratory physiotherapist as well. My fev1-fvc ratio is 89% peak flow 369 86% predicted and low gas transfer of 83% predicted. I am also on bisoprolol for my heart. Just wondering what would cause low dclo? Any advice would be much appreciated. Kelly 😊

[Hidden]

Oh dear you are going through a lot aren't you.   I am sorry for that.  I do know that it can be difficult to distinguish between heart and lung problems sometimes and I hope you get a proper diagnosis soon.   The good news is that 89% lung function is very good and just puts you in the very mild copd category if you do have that.   To put it into perspective between 90-100% is just considered a variation of the norm. 

I am sure others will be in soon with more knowledge than me and can help you better.  x

[Kellyjm77 in reply to Hidden]

Hi 😊 thank you so much for replying, this is quite overwhelming. Do you mind me asking if you have copd? Xx

[Hidden in reply to Kellyjm77]

You are very welcome Kelly.  Yes I have copd and asthma.  My lung function is mid 70's and I would kill for ones as good as yours!   Most people on here have less lung function than you,  many a lot lower.  They still have a good life though.   x

[rubyred777]

Welcome to the site Kelly. I wish I could help you out more. You have many different symptoms.  One thing I see, is your gas transfer is only mildly reduced. Like coughalot said, your copd is mild. Do you know your oxygen level? That would be helpful, to know if your levels are dropping ,when your breathless. If you don't have an oximeter,  you can get one on amazon. Others will be along that might know more, to help you out.   😊 Rubyxx 😊

[knitter]

Hi Kelly, your symptoms sound very much like my youngest daughter's , she is 36 now but suffered from chest infections when she was a child and then diagnosed with asthma .

She has little energy now, and has been diagnosed with POTS as well....when the heart rate rises when she stands. I have lost count of the times she has fainted.

She is quite anxious understandingly , as she can pass out so frequently , and the anxiety can affect her breathing rate and it becomes disordered .

Two of my daughters practice slow gentle belly breathing, through their noses and this helps with their symptoms. Meditation and relaxation exercises help too.

I see you are going to be referred to a physiotherapist...there was a post on here some time ago which mentioned two books by a physio called Diane Bradley, Hyperventilation Syndrome...and the other with Tania Clifton Smith ...Dynamic Breathing, how to manage your asthma. 

I wonder also if you have a long standing lung infection, if you cough up mucus has it been tested to see if the antibiotics that you were given have cleared any bacteria that may be in your lungs. A chronic infection can make you feel ill and affect your peak flow.

The BLF have a helpline which you can ring or email for advice.

Take care and good luck with your consultation in July

My mistake.. The book is Self help for Hyperventilation Syndrome by DINAH Bradley. I am rereading it now ...it explains a lot of the symptoms that can occur with disordered breathing , when carbon dioxide and the oxygen levels may be unbalanced . 

[Watfordgirl]

There's a lot going on, Kelly, and am not surprised you feel overwhelmed. You've had  good suggestions here and I wish I could help more. I'm sure you'll feel a little better when you know what you're dealing with and what they can do to help. Sue x

[cofdrop-UK]

Hi Kelly

So sorry to hear you have such a lot to deal with.

I am glad however, that you have a consultant who has done lung funtion tests and has sent you for a ct scan and a physiotherapist.  This bodes well that she/he is proactive.  Your consultant will have your ct scan results when you see s/h on the 7/7 and you will then know exactly what you are dealing with.  

Please keeep in touch and let us know how you get on.

Love cx