Lung Valves!!

[Skatergirl1]

Hi everyone, I have not been on here for a few months, (had some personal issues, not lung related to deal with) however, had a follow up with my consultant in Dec, who was going to suggest valves for me, but I am allergic to nickel!!! (just by blinking luck!!) so can not have them. He said, I just have to look after myself and avoid infections!!

I can't believe in this day and age, with people having nickel allergies that they can't offer an alternative i.e. stainless steel....or anything else.

Anyway, hoping everyone is keeping as well as can be, and not suffering too much from this dreadful weather, keep safe x

[HungryHufflepuff]

Hi skatergirl it's good to see you again 😊 I've been wondering how you're doing. I'm sorry to know you can't have the valves. Skis also has a nickel allergy but actually had the valves. It seems it's not rare for people to have a nickel allergy and yes, you'd think there would be an alternative. Anyway I guess Skis would be much better placed to explain it all and it's not my place to tell his story but there are other options and I hope you'll be given the opportunity to try for something else. ⛸️⛸️

[Skatergirl1 in reply to HungryHufflepuff]

thank you for your reply hungryhufflepuff, hope you are keeping well. And skis has just replied, and offered his wisdom once again xx thank you again

[skischool]

Skating lady,i am allergic to nickel,i always suspected i was given that on occasion i would get a rash from the back of my watch,belt buckles etc,etc ,my research indicated that the valves are made of Nitinol which is a mix of 50 % titanium and 50% nickel so i thought it might be wise to get an allergy test done.

Three months before i was due to have my endobronchial valves inserted i applied via my Gp for a test but the referral process is agonizingly slow and nothing was progressing so i went ahead with the insertion of 5 endobronchial valves,with the consent of my consultant given that should any inflammatory complications arise they could easily be removed,none did and although they have never fulfilled the function that they are supposed to achieve in creating atelectasis of the diseased area they also have not caused any complications associated with my nickel allergy.

May i suggest you request an interview with your consultant,by all means use my experience as a reference point and maybe he may be inclined to reconsider his decision.

Btw it wasn't until 3 months after the insertion of the valves that i finally got my skin patch test which confirmed i did indeed have an allergy to nickel.

Best wishes Ski's amd Scruff's

P.s 6 months after the first vale implantations i had another inserted,still no improvement but also still no adverse reaction

[Skatergirl1 in reply to skischool]

hi Skis, thank you for your reply. I have had an allergy test in September, due to contact dermatitis (had 126 patches on my little back lol, and came back allergic to nickel amongst about 10 other things, and the consultant had the results, and then just ruled the valves out. Said to keep well and avoid infections, also said was taking me off his list and referring me back to gp??? so feel a bit disappointed. But never mind, these things are sent to try us!! and am at present infection free, which is good news. Hope you and scruffs and looking after each other xx .(thank you for the advice, if I deteriorate I will certainly use your experience with the valves as a point of reference and push for it) x

[skischool in reply to Skatergirl1]

Fortunately my test came back negative for any other metallic compounds so if i have another procedure i will quite happily accept gold or platinum valves or stents if only for their resale value. x

Keep skating

[Caspiana]

Hello Skatergirl1 👋

Long time no see. I'm sorry to read of your difficulties. And also the valves. This must have been such a disappointment. I hope you are still skating and enjoying life as much as possible. It's nice to have you back. 😊 Take good care.

Cas xx🌠

[Skatergirl1 in reply to Caspiana]

Hi Caspiana, thank you for your reply. I am still good thank you and looking after myself as best I can. Yes still skating and enjoying myself....looking forward to the warmer weather. Anyway enough about me....how are you?....I hope life is treating you well and that you are on the road to better health after your lung transplant. Hope you are getting out and about now...How is your model village coming along? Xxx

[Caspiana in reply to Skatergirl1]

Hello again, 👋

I am very well thank you. Had some rocky times especially with side effects of the medication, but I seem to be stable now. My model village is away in storage at the moment. But I had a seaside Christmas village and it was lovely. xx 🙋

[Skatergirl1 in reply to Caspiana]

Hi Caspiana, glad to hear you have gotten through the rough bit now, and are more stable and I hope you continue to improve. Looking forward to seeing your new creations xx

[Hidden]

Hope you get your valves done my friend had it done and is loads better off the oxygen and enjoying life more

[Skatergirl1 in reply to Hidden]

Thank you for your reply. My consultant won’t give the go ahead for valves now, because I will reject the nickel xx but still making the most of life xx

[sassy59]

Good to see you Skatergirl and glad to see skis has replied to you. Hope you’re doing as well as you can and wishing you well. Xxx😘

[Skatergirl1 in reply to sassy59]

Thank you Sassy, hope you are keeping well. Bring in the Warmer weather xx

[sassy59 in reply to Skatergirl1]

We’re ok thank you and can’t wait for the weather to improve. Xxxx

[Corin1950]

Good to see you back and sorry about the valves but maybe following Skis advice you may be able to have them after all. My husband too is waiting to see whether he’s well enough to have them fitted. He was told possibly April so we’ll see.

Hope you are well and your personal issues have been resolved.

Best wishes

Corin

X

[Skatergirl1 in reply to Corin1950]

Hi Corin, thank you for your reply. Yes feeling loads better now ready to put the past to bed. Onwards and upwards.... I hope your husband recovers and is able to have his valves, fingers crossed for you both xx

[Izb1]

Hi Skatergirl1, glad to have you back and hope you find a solution to the nickel problem, as you say in this day and age you would think they would have an alternative, lets hope they find one for both you and Skis x

[Skatergirl1 in reply to Izb1]

Hi Izb1, Thank you for your reply. Yes let’s hope they can find a solution for us nickel rejects xxx. As Skis said, will happily accept gold/platinum lol xx

[Geoffu]

Unfortunately, it’s the nickel content in stainless steel that makes it stainless! There are other exotic materials used in the aerospace industry, but I don’t know if there are reasons, other than cost and manufacturability, that rule them out.

[Skatergirl1 in reply to Geoffu]

Thank you for your reply. I learn something new every day!! I never knew nickel was in stainless steel xx

[skischool in reply to Skatergirl1]

Under tighter regulations the quantity of nickel in everyday items such as the backs of watches,belt buckles,jean studs and jewelry has had to be reduced as it is quite a dermatological problem worldwide,probably why i no longer get that annoying rash except when in more humid and warmer environments?

[Skatergirl1 in reply to skischool]

Thanks for the info.... it has never really crossed my mind, I knew from a young age I couldn’t wear ‘cheap jewellery’ so avoided, and not really had a problem until recently when I have become allergic to all sorts of things including fragrance, potatoe starch, garlic etc. Now will only have to handle notes ...cross my palm with £50’s not silver lol x

[skischool in reply to Skatergirl1]

Be careful when you handle the blades of your skates,maybe wear some gloves knitted out of £50 notes. x

[maddyo2]

Hi skatergirl first time in in a long while , I can understand your disappointment , I too was disappointed when come round from anaesthetic and being told the calves couldn’t be placed . Luckily though I was offered the cutting option a few eeeks later and have now had both lungs done and there has been an improvement in my breathing and exercise ability

Stay well

[Skatergirl1 in reply to maddyo2]

Thank you, and you too x