Gone from severe to very severe emphysema but things still look promising!

I had an appointment with my lung specialist today for the half yearly review and also results of CT scan, echocardiogram, and respiratory tests done to be considered for the procedure where they insert endobronchial nitinol coils to improve lung function. (I think I mentioned this earlier in May this year when I saw him last.)

Neither got a YES nor a NO to the procedure as some concern re my heart (as I now have Grade I diastolic dysfunction caused by low arterial oxygen) coping with the surgery, so my specialist is contacting the surgeons to discuss my case.

What really does disappoint me is that I have progressed (if you can call it that!) from 'severe' to 'very severe' emphysema COPD. I guess that's because my FEV1 is now down to 28%.

Got loads of data from the specialist and would appreciate help analysing the following:

FVC1.3 L(48.8%)

FEV10.63 L(28.2%)

FEV1/FVC 48.37

TLC4.9 L(97.5%)

RV/TLC65.14(157.3%)

RV-He3.2 L(157.9%)

DLCOc 14.9%

DLCOc/VA 18.3%

Having said all that, I'm feeling pretty damn good at the moment! Just come back from another trip to the UK on my own to visit my daughter and gorgeous grandson. So all I need really is for these wonderful doctors over here in Spain to keep me fit enough to do that and I'll be happy.

Hope you're all feeling strong and happy too.

Lots of love, Michelle x

26 Replies

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  • Michelle,

    I am going through much the same process as yourself with an FEV 1 now reduced to 22% and being ear marked subject to the same cardio investigations for exactly the same procedure.We have to go before a multi disciplinay team before acceptance but the procedure is minimally invasive and although done under a GA is done via a tube into your lungs and is a one night stay in hospital.I can not give you a run down on your figures as i am not qualified to do so.It would appear that we are in similar health,i am not on long term o2 but do use ambulatory the only difference is that you are a darned site better looking than me lol.hope all progresses smoothly for you................regards skis and sruffy cat

  • Thank you Skis! I do love your posts. Nothing like a good giggle to brighten the day.

    The specialist said his concern was bleeding out. I have emphysema all over both lungs and apparently my lung tissue is just that .. like very flimsy tissue paper ... and the coils have to grip on but not break through. But I'm still feeling hopeful that I will get approval for the procedure. Ever the optimist! No idea how long I will have to wait to hear though.

    Really interested to hear that you're going through the same process and I'd love to keep in touch to know how you're doing.

    Love to the cat too! Mx

  • we can blog each other and there is also pm when either gets the time.i also have a Finca in Spain up the road from you in Catalonia,rural and inland and hopefully not invaded and re possessed by the locals yet lol x.......and another M(mike) what a coincidence x

  • I also have all over emphysema with FEV1 of 33% - suspect a bit lower now. Ive always been told that coils won't work for me because of the "pan lobular" aspect of my emphysema so Im interested that you are being considered for it. I also have bronchiectasis so maybe that's a factor but I'd be very interested to hear how you get on and if you get approval - really hope so :)

  • Thanks I'll keep you posted!

    Michelle x

  • Where is the pic of you and scruffy so we can judge for ourselves skis? :D

  • Your spirit is wonderful and long may you continue to live life to the full. Xxxx

  • Thank you!

    Mx

  • Pleased to hear you're feeling so good, getting out and about and being independant, which makes you feel even better of course. Long may it last, good luck with getting your nitinol modified lungs.

  • Thank you! ... and thank you again for all your hugely informative links. They're really helpful ... especially as you save me having to do all that research myself!! Mx

  • Hi Michelle I remember having a conversation with you back in May as we also live in Spain, hopefully you will get a positive answer on the coils. My husband has pulmonary fibrosis so not sure this procedure will be OK for him, it has never been suggested but will ask at his next appointment. However you are doing great going to the UK on your own, long may it last. I agree that the doctors and consultants over here are great, the admin can sometimes be a problem!! Keep up the good work. Carole

  • Hi again Carole. Lovely to hear from you. I understand that the coils procedure is specifically for emphysema, but its worth asking your husband's specialist anyway. Good luck! Michelle x

  • Hi Michelle, I am interested in all you speak about coils, we have similar diagnosis and I believe bronchiectasis is one on the downside to the coils valves as it clogs them up, not 100%sure on that, I'm on oxygen 15 hours a day, been very poorly though for a long while and not had a holiday for 6 yrs, how do you find your breathing in Spain any tips. Thanks carol

  • Sorry I didn't reply before but only just noticed your message. When it's not too hot my breathing is better here than in the UK. This time of the year is wonderful, but when the heat and humidity rises I have difficulty and stay indoors or in other air conditioned places. I'm lucky I think that I like air conditioning. (My husband, poor chap, has to put jumpers on in the height of summer!) A constant temperature is by far the best I find, and a bit of a breeze/fan so that I can feel it on my face. Because of my oxygen levels sinking through the floor when I stand up, I do most of my exercises sitting down. My best walks are around the supermarkets and shopping malls pushing a trolley - I don't even need the portable oxygen unit for that. Good job I love shopping! All makes for a bit of a strange life, but it's ok with me. Dread the idea of getting a chest infection though, so constantly putting First Defence up my nose with Nasal Guard, and always using antibiotic hand gel. Also take Vitamin D3 capsules and Echinacia and follow a high protein diet.

    Hope you feel better soon. Michelle x

  • Thanks for the lovely reply Michelle you sound like a lovely lady that's making the best of things that is what I'm trying todo conquer the fear and anxiety of what this god awful disease brings, keep well carol xx

  • MichelleT51

    Glad you are feeling good & her's hoping you get plenty more visits to see your little one.. Rumour has it the Spanish medical services are so much better than the NHS, why use the NHS? We have a small apartment in Lanzarote which my partner is always saying why we don't make the break & go for full citizenship & move there. They ship you off to Madrid if the island medics can't fix you. I'm fully committed to the NHS with many ailments so I tell her we can't go, can't get medical insurance so all medical bills would have to be paid from our capital. Got any opinions?

    IKeith

  • I only have experience of the health system here in the Valencia Region of mainland Spain, which in my opinion is vastly superior to the NHS in the U.K. No reason to believe though that it would be any different in Lanzarote. However, who knows how things will work out with Brexit!!!

    Mx

  • Michelle may i ask if you get your health care via the residencia system in Spain or via the reciprocal arrangement,I have an n.i.e but no official residential status as i obviously don't live in my place in Catalunya full time?Thinking of making the leap as was previously planned before my dear wife passed away,but brexit and recent events in Catalunya may well scupper that?best wishes skis x

  • So sorry to hear that you lost your wife. It must be really hard for you.

    You would need to get your Residencia to qualify for the reciprocal arrangement like I do. We had to get an S1 form from Newcastle to say that we don't use the NHS in the UK as we live in Spain. But as you may have seen I get everything I need in the UK when visiting my children by them registering me at their local health centre as a Visitor. All works really well.

    BTW I can see Catalunya becoming independent any time soon!

    If you are going to make the leap I would suggest you do it now. After Brexit, if there is no reciprocal arrangement, I don't think Spain will be looking for more 'old Brits' to come live here .... unless, of course, you have pots of money!!

    Take care, Mx

  • Should have typed ... I can't see Catalunya .... Haha!

  • Like you i do not think they will go for full blown independence but Madrid need to tone down their arrogance and talk to our more welsh than welsh catalan brothers or it will be a mess,i think with my savings i can manage to keep my house here and my place in Asco on the ebro,perhaps staying 8 months in Spain and 4 months here for both health care reasons and as you know it gets quite cold in our place in the winter and my log burners are not going to be much fun for my lungs,Hope you are keeping well M and the rest of your family..........love and best wishes skis and scruffy

  • MichelleT51

    Thanks for your response, do you know if it would be possible to have a Spanish passport if one owns a property in Spain? That way the benefits of Euro status would not be lost to us Brits. As an aside do you know if stem cell treatment is available in Spain to treat lung conditions such as emphysema?

    IKeith

  • At the moment if I wanted to become a Spanish National, i.e. get a Spanish passport, I would have to surrender my British one! I am currently a Spanish resident but a British national.

    I haven't looked much into stem cell research yet! Fear at my age it will be too late! Would have thought that Spain is ahead of UK on this though ... like everything else in medical research. Lung/heart replacements are well ahead too as Spain has had an opt-out organ donor policy for years.

    Mx

  • MichelleT51

    Thanks for the info, I won't get a replacement, unfortunately the only way forward for me is to try stem cell treatment all other treatments have been ruled out. Have tried USA, Germany, Serbia & Asia, running out of otions.

    Keep well

    IKeith

  • Please keep in touch IKeath. Mx

  • MichelleT51

    Will do and keep you abreast of my results if any. So far not much joy as soon as I mention Bone Marrow Cancer they all seem to run a mile. Keep trying tho'. Keep well and stay fit.

    IKeith

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