Prior to my Endobronchial valve procedure i did loads of research on the subject,well who wouldn't?it's my body and a nice man in a white coat wanted to implant nice shiny articles,now affectionately referred to as Bling inside it,hopefully to improve it after 65 yrs of misuse.
Dr B was reluctant to let me handle and inspect these items of bling being that they cost over £2000 each and i am sure he kept them in a locked cupboard at home for fear of a spate of valve shoplifting in his clinic given their value so i managed to elicit the manufacturers blurb from him for perusal at home.
Pulmonx,a company from across the pond who make these devices had produced a nice little pocket sized booklet illustrating how they worked and unlike most flat pack furniture instruction leaflets you could even understand it so i was interested to read that they thought it would be unwise to insert them in people with a Nickel allergy as being made of Nitinol,a blend of 50% Nickel and 50% titanium there is the possibility that metallic elements could migrate into surrounding tissue.
Previously i used to have a problem with watch strap buckles,jeans studs and similar stuff because they used to be made with a high composite of Nickel which gave me a rather nasty skin rash with consequent blistering and discomfort which made me look like somebody you would not like to come into bodily contact with. whoops thought i perhaps it would be best to arrange an allergy test.
i promptly asked my Gp to refer me for patch testing some 2 months before the procedure,many calls to the dermatology clinic failed to elicit a date for these tests and given that my allergy appeared to have dampened down i took a chance and went ahead with the procedure rather than have it cancelled and wait another 6 months for another date given that what was left of my lungs where crying out for help. Dr B allowed me to sign off on this safe in the knowledge that should there be a problems he was not going to carry the can should i expire before my due by date.
Well for those not already asleep i finally had the patch testing this week which entailed 4 visits to another hospital the other side of Manchester,first visit was a chat,2nd visit to apply the patches,3rd visit to take them off and a final visit for another chat to discuss the results. during this period one is not allowed to get ones back wet so Scruffy cat,who shares a bed(don't ask)had to put up with a rather pungent Ski's who smelt worse than her for the duration.
I now have confirmation that i am allergic to both Nickel and cobalt so surgical implants such as hip replacements.stents and the like could provoke an immune reaction within the body and within the lung structure such an event could cause Hypersensitivity pneumonitis which is basically inflammation of the alveoli eventually leading to fibrosis,scarring and other damage.ironically potentially more effective than the valves but the good news is i can now take a shower and i will have a happier cat.
So my dodgy lung buddies having just completed a lung function test which indicated no improvement and a slight decline in my Fev1 from 22% to 19%,and a Ct scan yet to be evaluated i think my review with the consultant at the end of the month should be most interesting and we could be looking at waving goodbye to our newly acquired Bling which doesn't appear to be working and potentially a request for assessment for the lung transplant list as my options are now becoming rather limited .
Have a nice weekend my happy chums and i intend to do likewise after the longest shower in history.
Love sli's and Scruff's xx
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skischool
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Gawd love you ski's. I saw a YouTube documentary about a girl who had nickel braces and became dangerously ill. It wasn't until she was at deaths door that the doctors thought of nickel. When they removed her braces she recovered completely.
Isn't there anything else they could do non nickel wise? I didn't realise your lung function was so low.
Glad you enjoyed the longest shower in the history of the earth and am wondering if you got smelly Scruffy Cat in there with you? And did she put up much of a fight? xx
Just waiting in the queue for the bathroom,Scruffy a typical feline takes ages in there
The valves are coated in silicone i believe so maybe time is on my side before it breaks down.no other options unless i get some hand crafted in wood lol anyway if they are not working and potentially harmful lets get them out?
Small is beautiful as they say and like me my lungs are a work of art just stretched across a rather small canvas. xx
Oh skis, what a bummer! I recall you mentioning nickel a while back but I somehow hoped you’d get away with it.......but no.
You have a very pragmatic approach though but what else can you do? Hope you’re smelling sweeter now for yours and Scruffy’s sake. I understand her wanting to be in the bed with you.....she’s old, gets chilly and loves you. Nothing wrong with that.
Well Carole,you certainly know how to raise a mans spirits,so i am now resigned to the fact that only old,cold ladies would want to share my bed lol and here was i thinking life couldn't get any worse.
I don't know where to Begin regarding Cobalt / Titanium. I know all about this as I do Believe my Operation for Hip Replacement Had caused my Future COPD. I have a Dodgy Hip Replacement by way of a Product that was never Cleared by the Medical Research from the Huge Company called "Dupont" / Johnson & Johnson. A USA Company, They Did Not warn the Surgeons of all Countries who were about to implant these "Titanium" Joints. It was an Australian Surgeon who at that time 2008/9 find the Problem His patients where having with this particular implant, his patients with Ceramic Hips did not show any signs of Rejection... I had my Hip replacement in 2009, along with others of Different Nationalities with the same Surgeon. We got together Instigated by a British Lady, I first read of her in an English Newspaper...fast Forward... We as a Group of Invasive Titanium/Cobalt Hip's, have & are in a Legal battle with a Large Company of Lawyers in USA. They are still battling on our Behalf 8 years on, "Dupont" have actually paid out Millions of Dollars so far, to USA Citizens, but are not interested in our "Claim". I & the others every year have to have Blood tests for "Cobalt" Leakage, Luckily for me , I have so far been free.. Or Have I ? I was never asked to have a Test for Allergies concerning Titanium or any other Metals before having my Valves, The Hospital here Knew of my Titanium/Cobalt Hip Joint replacement and they must have know of the seriousness of the Actual Joint. So, Yes, be very Vigilant my Friend Ski's and you do what you Know is right. As you know my Valves have worked. Just hope I don't fall over one day. ...Good luck with the Potential Pending Assessment for Transplant. Love n Hugs. Besos to a very Clean You, and not so Smelly Scruffita. XXXX
Hi carino,it was only be reading the company's literature that i discovered their recommendation,mind you being an American company and given the litigious nature of folks across the pond they are quite wisely covering their backs.i have researched further and leakage tends to occur within days of implant,though that is not to say that the silicone covering won't break down in time and generally most people do not suffer a reaction,i took the risk not having been able to prove until now that i had a definite allergy and to a certain extent my consultant agreed that the benefits outweighed the risk,though had i been able to confirm the allergy at the time he would not have proceeded.
i must be careful here to not frighten people from undertaking the procedure and i truly believe,as in your case that they are marvelous pieces of kit and will enhance many peoples lives,and you are a prime example of their benefits.
You will never fall over my lovely and even if you did you would bounce back up again because you have the joie de vivre and such a positive outlook on life to live forever.
besos clean Ski's and a cat that smells of fish xx
Hola Carino otra Vez. You are so right, about your Research, and now finding you have an allergy. You & I are still here giving our Best to Lighten the Mood and to stay Strong & Positive, I may not choose the correct Words, but you get my Gist as I am sure everyone Does (I hope). Yes Hun, I have had Successful Valves, they seem to be doing what they are there for, So I can't Complain. I didn't realise your FEV1 was so low at 19 %, mine are 26% at the moment, I am hoping they will improve after all the Exercises I am doing & walking without my Scooter. Well my lovely it's Good to catch up, seems a long time. Cuddles to Fishy Scruffs, and Big Hugs to you My Very Clean Friend. Besitos Mucho Mwaarrr. xxxxxxxx
Allergies to Nickel are quite common but now many products are coated or the Nickel content reduced to try to compensate for that.Some of the major problems are with cheap costume jewelry and other products produced in countries that have not followed recommendations set out by relevant authorities.
I noticed it from my watch and and belt buckles. Also snaps on jeans.
Awe Skis, sorry you don't get to keep your bling and it didn't work out. Wonder why they would make them out of a element that so many people like yourself, and I think myself also, have allergic reactions? They are small, they are expensive, why not gold!! After, all "we are star dust, we are golden"....
😦 oh no ski's - what rotten luck. I suppose it's better to find out now before any possible problems begin to arise, though I don't suppose that's much consolation at present. Do they have to made from nickel/titanium - I wonder, could they not knock up a bespoke set of stainless steel ones just for you 🤔? Though I suppose if stainless steel was suitable they'd be using that and cutting costs 😕. I'm sure scruffy is very pleased to have her much more approachable companion back. Take care of yourself ....and scruffs xx
Magpuss,i am saving up for 22 ct gold ones,worn on the outside,no point in having bling if you can't show it off.I will use the old ones for a deposit.
No, I'm still waiting🙁. I don't want to be a pest but if they don't appear this coming week there may be a 'little' more drama in the life of his drama teacher - just a gentle scene, of course 😊
Sorry you are having so much hassle with your bling young Grasshopper, but look on the bright side, they'll probably bring a good price on e-bay. I never even thought about such matters when I had my knee joints done. I doubt that those fancy metals had been invented back then, they're probably marble.
I'll be rooting for you which ever way you decided to go young Grasshopper. 🚿🚿
Thank you master Po,i know i can always rely on you for support,and may i say you are doing remarkably well for a man with Bakelite knees fashioned from an old HMV radio with the added bonus that you can pick up the world service on your camper van travels.
For goodness sake dear skischool can you believe your luck.....typical ,given something in one hand and then maybe only to be taken away in the other. As you say, Mr.Surgeon wouldn't have proceeded if he'd known of your possible reaction to your bling. Oh and to have them removed,that's another stay in hospital and Scruffy won't be amused(even though you are all clean and shiney!)/ Top marks for your mindset....10/10!
Thank you SH and i might add that your 2 relatives are once again visiting my garden on a daily basis,maybe they are anticipating shiny peanuts for dinner.
Ski's and Scruff's who is anticipating another stay in the cat hotel? xx
Oh Skis, I am terribly sorry. What a predicament. And I'm also sorry to read your lung function has declined slightly, but please remember that in winter many of us have lower results. I know I did anyway. As for the transplant list, I'd get on it quickly as these things seem to take ages. Keep faith Skis. You have all our support and love here.
I hope by now you have had the longest shower ever 🚿 and Scruffy and you are tucked up and snoring gently. xx 🙋🐶
Hello my dear Cas,no need to feel sorry for me,minor set backs are all part and parcel of our lung conditions and no doubt we will get it resolved in the end,nothing tried,nothing gained as they say and we shall see what the next plan of action is shortly.
i have to keep going as there is a small cottage in a miniature garden somewhere in Japan awaiting my occupancy lol.
Love Ski's and a wide awake Scruffs waiting for me to make our bed xx
Oh dear, Mike, what a waste of a well planned and endured hospital stay. I’m so sorry it was all complicated by your allergy. You wear your poor lung function very well on here...you seem so energetic and lively, almost never mentioning your health issues. You’re a hero!
Lots of love to you, and may Chelsea win big tomorrow.
I hope by now you’re sleeping soundly, clean n comfy, with that cat of yours enjoying the peace. Stay strong! Penny 💕 xx
HI Penny,i don't do heroics and i am as weak and wimpish as the next person so i just try to crack on with life as we are only here once and make the best of things.We will wait and see what my consultant says,although previously he indicated they were quite easy to remove if required.
i think Scruffy has more fear of the future and imprisonment in cat boot camp so i shall probably have to do some cat counselling quite soon lol.
You are putting a very brave face on a rough situation. Such hard luck,
Just wondering what they do with the second hand bling - after all £2000 is a lot to throw away! Its a wonder they will do the operation wthout the test results. Love iris x
Your next task,in between jigsaw puzzles and gardening dear Iris is the development of a Bling recycling plant,perhaps the separation of the Titanium from the Nickel is a good start and i am sure from previous posts there are people out there with the skills to fashion the Titanium into rather expensive jewelry,we just need to do something with the Nickel lol
I hate waste, grew up at a time when crusts made a bread pudding, potato peelings fed the chickens, shopping was done late in the day, trudging round the market and shops with Mum to see what was going cheap. Sheets were turned sides to middle, we had a treadle sewing machine, collars and cuffs on shirts were turned... i could go on!
Cor blimey! What a bummer for you, Skis. Hope your consultant sorts something out for you. As for poor Scruffy having to share a bed with a stinker - I really feel her pain! Unfortunately the stinks in our bed are not easily washed away, especially as we are both on a high fibre diet at the moment. xx Moy
Moy,the rumblings in your household never cease to amuse me. Bummers springs to mind in the plural sense.as you say they are now the problem of the man in the white coat and i am sure we will come to a mutual agreement as to the next course of action.
A sad and very disappointing result for you, it has to have "taken some of the wind from your sails". On the brighter side they are not going to be left in, to unexpectedly cause severe problems stacking up in the future, that really would be bad news. At least you did have a suspicion of an allergy towards Nickel and with good sense, followed up on it
I wish you the best of luck, with going on the trx list. The recent changes to the donor law to opt out rather than opt in will hopefully work in your favour. Hang in there as the pendulum swings back to good luck.
Hi Mr 2 G's S**t happens is i believe the expression used. :)but we will crack on and see what can be resolved.I have instructed Lyd/Iris to come up with the design for a Bling recycling plant and i am sure she would be appreciative of your highly technical knowledge in assisting her.I moot the word transplant,but for me that would be the last resort lacking the bravery and courage that some of our other intrepid posters have,We shall see which way the pendulum swings indeed.
It could be introduced as standard but that would increase the cost of the procedure to the Nhs by at least £1000 so i think the standard"any allergies" question is asked at appraisal but not many people are aware they have one? x
Another scam to make us believe you are not guilty of watch theft. Each time you are around, my new nickel plated watches comes a'missing. I shall not fall for the nonsense, dear thief, but I am truly pleased the bling implant culprit has been found.
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xx
A sobering experience- and an update to an earlier post
IS HE GOING TO SLIDE OUT OF THIS ONE?!
Bronchiectasis & Atelectasis update
