Well 3 months post endobronchial valve procedure it was time to brave the M60 in the baby smart car and head off to Wythenshawe,the M60 is our northern equivalent of the M25 only less posh being oop north we only have 3 lanes and it floods a lot in places,so much for the much proclaimed Northern power house.
i had hoped to see my consultant Dr B,the man with the brown shoes and sense of humour defficiency,unfortuantely he was otherwise busy in a meeting so i saw Dr C one of his registrars who examined the results of my recent PFT's ,shuttle walk test and CT scan,i was allowed to look at the Bling insitu and all appeared to still be in position only one had moved slightly and one appeared to have gone AWOL perhaps cunningly it still resides in Dr B's cupboard and he is £2000 richer for his sleight of hand.
The PFT's indicate nil change in FVC1 which is still measured at 22% though there has been a minimal reduction in residual volume,which is good but not good enough to indicate anywhere near the reduction and partial collapse of my upper left lobe that the valves are intended to achieve so the general consensus of opinion is that the valves have done nothing.The saving grace is that even though i feel i have declined the PFT's do not confirm it.
i then broached the question of being a potential candidate for lung transplant and it was explained that i was far too old.it would appear that the criteria these days is to transplant younger persons with life threatening lung conditions,exacerbations and periods of respiratory failure also although i already new it transplants are rigorous procedures with lengthy recovery times and the need for an immunotherapy regime that would leave me in greater peril should i have an infection than my present situation.i suppose i was clutching at straws but i can't really complain at what i think was a logical and honest answer to my question.This is not age related discrimination but more a realistic view of survivability of such a procedure.We shall see if Dr B agrees.
Then the fun started as i produced confirmation of my allergy to Nickel.i could spot the rapidly growing frown on the young mans brow and he decided it was time for a coffee break for me and a mad dash for him to find DR B for consultation,the friends of the hospital cafeteria was cheaply obliging and far more deserving than Costa and on his return he explained that a multi disciplinary team meeting would have to be convened and further PFT's performed in 6 weeks time,i am assuming that Dr B want's to cover his back and i imagine that the removal of the Bling is weighing heavily on their minds.
So my dodgy lung friends,not really the results i had hoped for but very much what i predicted some time ago and given the probable lack of further surgical intervention i shall just have to plod along and try to stay as healthy as possible with what remains of my dodgy appendages which is pretty much what the young man indicated.
Love to all
Ski's and Scruff's xx
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I can understand your disappointment. I too was a patient of Dr. B prior to being discharged last year. I did manage to make him laugh once! As for transplant, he didn't actually say that I was too old but talked about it in a very negative way as if to dissuade me from asking about it.
How dare you insult Dr B,nothing but the best from him,i believe he got them from B&Q in their end of line stock basket near the entrance along with single door handles etc
Nope I have been assured by his very nice secretary that yours were a definite poundland shipment and not to be confused with the nickel free from b & Q.
Master Po with your powers i am sure we can find the 5th bling,i checked out the fellowship of the Bling on you tube but it is a tad naughty for this site lol.
Well, you did promise an update. Hmmm... as always you have made light of it. And as you say you had a good idea that the bling had not done what it was supposed to. A bit weird: no imorovement, no worsening. Stalemate. Stasis. Stuck-in-the-mud. Poor you. Did the youngster say no operation at all? ie No LVR?
Dear Kate,i did mention steam ablation as a way forward,still minimally invasive but they don't use that procedure on COPD patients at present.LVRS via the knife could be a possibility but it is generally done on patients with more existing reserve capacity as it is quite a strain on the body,we will see what Mr B says in the coming months?
Dear Skis,sorry.I'm not able to give a witty reply. I feel rather sad for you😵,even though you say you had an idea ,possibly, how things would/could end up ,it's still a hurdle that can't be passed. On the bright side,if anyone can take stock and move forward,your name obviously with Scruffy,would be the first name on the list.
Dear Squirrels.no need to feel sad for me,hurdles are there to be straddled so they say and this is just another challenge alongs life's merry path,when i think of others on here and sadly some who are no longer here and the courage and bravery they show and have shown in the face of adversity my little episode with a few bits of metal and rubber kind of pale into insignificance and i like to think it might be a bit informative for others who intend to go the EBV route in that it is not such a scary move and even when unsuccessful it's not the end of the road.
love Ski's and Scruff's x
Wishing you all the best Ski's. Despite everything, you raise a smile and always make sure the world's a much better place with you in it! If I move forward with even a smidgen of your fabulous attitude, I'll be happy. x
Oh you will Artichokes,you are one of our spring chicks on the site and you will have many enjoyable years and watch your son blossom into adulthood of that i am absolutely sure.
I'm disappointed for you that the procedure did not work out, but I admire your tenacity and humor and hope that I can handle my condition with such grace and cheerfulness. We never know; perhaps a miracle is around the corner.
Life is a miracle challny and you get out of it as much as you put into it and a smile and a bit of humour cost nothing at all so just a minor set back on the grand scale of things.
Laugh and the world laughs with you, weep and you weep alone! Always think that is a miserable quote, sometimes you need to weep with someone. I hope scruffy is up to it. I sympathise with you about the surgery and age thing. I have already been told that it would be dangerous to have surgery, though my lovely cardiologist offered me an experienced anaesthetist in case! Meanwhile I see the lung doctor about scan results on Tuesday and have just started another exacerbation!
Well Carnival,the one saving grace is that you will be with an expert tomorrow to confirm your exacerbation and i would get your cardiologist's and his able aneasthetist to do some horse trading with your lung doctor,i have had minimal success in the past but it's worth a try.
So glad to hear you’re still in the land of the living, dear Skis, despite all setbacks.
I’m so very sorry to hear your latest feedback after all the dashing around the dreaded M60, although I think the M62 is worst of all. But the transplant option sounds a huge hill to climb, so maybe best, all things considered, to swerve that one, as the younger folks say.
Where on earth did you find the glorious cat photo?? Surely not Scruffs, borrowing your bling and minding your winnings?? Ha!
Penny i found a Bling site for cat's lol i also found another site called 'Fellowship of the Bling' basically a pee take of lord of the rings but totally unsuitable for this audience.
You are probably right about the transplant and living alone with very little support would not be the best environment for recovery even with a nursing cat.
Hola Carino, You knew all this not long after your Procedure, Be Kind to Dr.B, after all he is Young without Life's Experience, You are now Teaching him A Bit of Life from a Dodgery "Old" Bugger !, said with much Love. So, My Half Mr Bling Man, your Like a Good watch, Needs Winding up now & then. The other half has Obviously been shared to "Scuffita", she Wears it well. Like me, Your Now too old for Transplant ( My Option for me Not theirs). So when you are on that Tread Mill, just Turn the dial up a Bit and stay as Healthy & Fit as Me, Whom I may remind you I am a Tad Older. But I love You. My Happy Friend, with a very Shiny Smart Cat.
Abrazos y Besitos Mucho me Amigo. xxxx
PS, Only Read this This Morning, I was out all day Yesterday, at a Friends Funeral, Rejoicing her Life and Raising a Few Vinos. There for the Grace of "All we Hope For" . XXXXX
Hola mi Querida,i am like my Lifemax watch,cheap and cheerful and easy to read with a quality strap but with a limited inner workings that you change when the batteries run out.
Just turning the dial up on my treadmill,watch out Scruffy we are in for a rocky ride lol
Not good news for you ski's but as everybody has said this was something you already knew, still we all hope for things to improve, if only a little. I am glad you have such a great sense of humour as this is what sees you through in life. Breatheasy my dear and lets hope that they have something like this steam ablation that could help a little x
Irene,i think i would be as well holding my head over a steaming kettle given my luck and the steam ablation is still in its relative infancy in treatment procedures,i shall now negotiate with Dr B the next course of action but hey ho what else can we do but crack on with things and try to enjoy our lives.
I am too disappointed for you, but the fact that you can see it for what it is with some humour however dark I am sure helps. Perhaps if you get to see your Dr B again, you would like to wear my tee shirt ( cleanly laundered and posted first class) with a poignant message on the front. Same $h!t different day. I too have a consultant with zero personality, infact, a King Edward potato is more lively.
Ledge,i eagerly await that wonderful T.shirt and perhaps a smaller version for Scruffy though her litter tray is evidence that S**t happens on a daily basis.
Thanks for writing such a detailed, amusing post about a very serious subject! Hope you're recovering from your trip round the M60 and the disappointing news about the lack of progress from the valves. I remember my husband being really upset when he was told that he wasn't suitable for valves and that he was out of the age range for transplant and that he wouldn't have been considered suitable anyway being so " deconditioned" as the doctor described it. Even coils which had been discussed previously were off the agenda. Only course of action left was to soldier on eating well and trying to exercise and doing all the things we know work well and a year on from his 2 weeks in intensive care caused by a viral infection he's doing ok. I just wish he had more self belief, 2 greys determination and your sense of humour.
You take the best care of yourself and give Scruffy a cuddle from me.
Corin,i try to add a little humour otherwise who would be interested in such a boring day out though as usual i must stress that the procedure has helped many people live a more meaningful life and i do hope i haven't put people off having it done.
What hubby lacks in belief and determination is well offset by having you as a loving friend and companion and i am sure he will thrive on that.
Thanks I don't think you'll put anyone off. One thing I've learned about this awful illness is that although there are many commonalities everyone has their own individual features and responds differently. As for my husband I think he does appreciate my support he just doesn't always show it.
What a super photo and excellent funny comic report on your Wythenshawe adventure. There's no harm in asking for what you think is the impossible. Keep on plodding along in your positive way. I too hate the M60 and now I have my bus pass I'd rather get the bus into Manchester than go to the Trafford Centre. Best wishes to yourself and Scruffy. x Anita
Dear Anita,i am guilty of having a bus pass that i have used only once in 2 yrs and i haven't even used the new Metrolink yet,you have spurred me on to be more adventurous and i must thank you for that.
Metrolink is fab and just around the corner at Wythenshaw hospital, I once caught the bus, never again it took forever and went all over the council estate, best to stick to the smart car.
Yes the famous sprawling estate,i had many a close encounter with some not very nice people in that domain when i worked outside as a telecoms engineer and an armoured personnel carrier would have been a more suitable form of transport. xx
I'm truly sorry you haven't made it onto the transplant list ski's but I'm not sorry that you're being spared the apprehension and anxiety of being on it. I just hope your Dr.B can pull out all the stops and produce some gold standard alternative to help dispel your disappointment.........fingers crossed. In the meantime - plodding's good, but best of all is laughter - and that's something that you, Don and a good few others on here are exceptionally good at providing us with - for which I for one of many, I'm sure - am grateful. Keep plodding, take care and please don't be too downhearted. Love to you and Scruffs xxx😽Magpuss.
PS you mustn't stick with the trilogy ski's, Bling part four is a must! How else will we know what happens next? and besides that - you're never boring.
Aw, thank you ski's. If it wasn't for my dodgy iPad I'd probably be popping up a little more often, it's ready to be pensioned off methinks. After catching up with and replying to a couple of posts and emails this morning my inbox shut itself down and refused to let me back in🙄. Finally regained access late afternoon when it opened up again with mail dated August 2016😧😖. So far (fingers crossed) I seem to have got it sorted out there but I've no idea how - tried so many different options that I can't remember which one worked😄. I'm still waiting for promised photos but have had to curb my irritation as the lady who promised to email them to me hasn't been too well.
Has Scruffs been cast as the artful dodger?xx🙀😸Magpuss
Hi Skis and Scruffy cat, sorry to hear the bling hasn’t given you the improvement that was hoped for but I’m happy to read that you haven’t lost your sense of humour! Dr B forgetting on purpose to fit one of the valves, very funny and I can picture the situation of him stashing it away. Maybe he waits until he’s got a lot and trots off to the local pawn shop? Joy x
Joy,i think you may well be correct,hence he was too busy to see me yesterday as he had probably set up his stall at the local car boot sale,goodness knows i worry now for those with hip replacements and the like given this burke and hare scenario lol.
Sounds very exhausting, driving there, listening to all that chat, with not much of a result, and then more tests? I believe they are trying to discourage everyone from using our hospitals.
Tony had a heart check up yesterday, he has a leaky valve and fibrillation, hes on warfarin. They checked his weight, did an ecg, and that was it, could have been done at the surgery, all fine no further appointment. Lucky we had a son willing to take him, he managed to fit in a work appointment while Tony was there. Love Iris x
I am glad that Tony checked out ok Iris and i know it's a bit of a pain having to attend these appts but dependent on the hospital i would rather attend than trust my local surgery to do the checks properly.I have had terrible times in the past with the lax non treatment of Cecilia but my experiences with Wythenshawe have always been very positive to date.
Wow what a pain in the hind quarter. Most importantly though is how do you “feel”? Same, better or worse than before? My biggest fear about them replacing the disc’s in my neck. They can’t say “for sure” so I always ask” how bout your professional opinion”? LOL. Valve jobs for the heart I can say for sure are an improvement. As I see one of those about every decade. I do hope if you’re unhappy with the results that things improve somehow someway. Scruff looks very hip, slick and cool in her outfit. Good luck with the next doc visit hope you get what you’re after✌️
Thanks Sandyeggo,I feel pretty much the same,probably about 5 grammes heavier with the bling but i carry my weight well lol,perhaps we will put forward Scruffy for any future procedures,a sort of Guinea pig/Cat to check them out first.
Hi Ski and rapper style scruffs! Sorry to hear your 5 -1 blings didn’t work out as you had hoped. I wish you luck if you decide to try other options. In the dog house at the mo re Asbo and queen b as they have just returned from their annual stay at Alcatraz oops I mean cattery whilst I’ve been sunning me sen😜 keep well Chris + 😾😾
Chris,i think Asbo and Queen B are entitled to feel a bit miffed and the treatment for their frost bitten paws and malnutrition after the stay in Alcatraz is probably not helping,expect little sympathy from them when that tan starts to fade and peel and many angry deposits in your slippers for weeks to come.
I am so sorry to read of your disappointment SirSki however as others on here have said your sense of humour and outlook on life will stand you in good stead and you will avoid being parted from Scruff's nursing abilities as I don't believe the NHS allows our feline friends access to work in hospitals just yet - probably can't afford them .......
Majji,i think a parting from Scruff's would benefit both my health and my bank balance,she doesn't do cheap but alas a bit like my dodgy lungs i am stuck with her so we will trundle along as the young doctor said until we can trundle no more,
A friend was at the hospital a while ago and said there was a sign that read "Warning. Thieves operate in this carpark" and someone had written underneath "because we can't afford doctors" So feline staff would definitely be beyond their budget.
Skis I am really sorry to hear about your valves. Especially the missing one. I'm always losing stuff too 🙄
Eagerly awaiting your next installment of Raiders of the Lost Bling.
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