Pulmonary Fibrosis

[Lunus]

Hi. Just coming to terms with my Pulmonary Fibrosis diagnosis, which is made all the harder as I also suffer from BPD. Just wanted to say hello.

[Katinka46]

Hello Lunus Welcome to this forum. It is friendly, informative, supportive and funny.

There are many members with PF who will understand your situation and have help and advice for you.

All the best

K

[Lunus in reply to Katinka46]

Thank you for your kind response. Very scared at the moment and my BPD Is playing havoc with my emotions. Hopefully get my mood suppressant dose increased next week to help me to cope. I look forward to being an active member.

[peege]

Hello, I echo Katinka's welcome Lunus, you've come to the right place for support with a newly diagnosed lung disease. Many many have been in the same boat with various other lung disorders of varying severity - many of whom also have mild to severe levels of anxiety. Other parients will be along with PF or IPF soon.

Wishing you all the very best with staying as well as you can . P

[Lunus in reply to peege]

Thank you. I’m sure this forum will be a great help to me as I don’t really have anyone else to talk to as I don’t want to discuss things with my wife atm as I don’t want her getting upset. Hope that makes sense.

[sassy59]

Hello and welcome to you Lunus. I’m sure you’ll here from others soon.

I’m carer for my husband Pete who has sarcoidosis, COPD, heart disease and chronic back problems. He’s doing well thank goodness and I keep an eye on him.

Best wishes to you. Xxx

[Lunus in reply to sassy59]

Sassy Thx for your message. I wish your husband well with his ongoing battles. Just got to try to make every day count whilst we are still here I guess. Good luck to you both.

[sassy59 in reply to Lunus]

Thank you for your kind reply Lunus. Yes indeed do try to make everyday count. You take care xxxx

[Kristicats]

Hi Lunus

Hope you are getting the help you need both with your PF and BPD. This pandemic is certainly not helping you. Hope you have support from people around in any way you can get it. Please keep in touch there are others on here in similar circumstances . Cx

[CDPO16]

Hi and a warm welcome Lunus. I haven't got pulmonary fibrosis but can well understand that any lung disease can cause anxiety, it certainly does with me. Sorry to see that you have BPD too. Lots of support here from a great crowd of people who are always around to help if they can and to lend 'a listening ear'. It's also a great place for some distraction from health issues when needed with all the general interest and funny posts.

[Annie04]

I’m sorry Lunas I can’t comment on your PF but I wanted to send you a virtual hug - 💐

[Lunus in reply to Annie04]

Annie That’s very kind and just what I needed. x

[madonbrew]

Hi Lunus, This is a great forum! It totally helps having people to talk to who understand and just know what things are like!

I understand needing somewhere to chat away from your family sometimes! I think sometimes we need our own little space to process our own thoughts and feelings.

There are some great people here,full of love, care and support and knowledge and fun!

As I saw you’re in need of a hug, here’s another one!

Dee 😊

[Lunus in reply to madonbrew]

Thx for the hug, appreciated lol. I must confess controlling my Borderline Personality Disorder is probably my greatest battle at the moment. My emotional reactions are severe and I can easily find myself In a grief stricken state and feeling sorry for myself, so a great mental battle ahead for me coping with this illness. This forum will be great for me to keep things in context.

[Annie04 in reply to Lunus]

I’m sorry to hear this Luna, it’s hard enough feeling as you do and coping with PF, as strange as it seems I’ve immersed myself in a few easy hobbies that take off the edge and tottering around at home helps.

Just think every day is a new day and what can you plan for it. Take care ☺️

[Lunus in reply to Annie04]

Thanks Annie. I agree. Gardening, hiking (probably walking from now lol), travel and football are my passions. Once I get my latest X-rays and see the lung specialist I’ll know where I’m at but I fear the worst. Probably got to downsize my house as my priority is my wife at the moment and ensuring she’s financially secure. Anyway jumping the gun as always, need to find out how long I’ve got first. Thanks again.

[Hidden in reply to Lunus]

Welcome Lunas In addition, you may also want to join the HU Mental Health Support and the Anxiety and Depression Support groups as your main concern is the BPD.

Best wishes

[Kittiekatz in reply to Hidden]

Hi, just wondering what the HU mental health support is & the anxiety & depression support group?? Are these associated with this forum?? As I have 3 lung conditions & also suffer from really bad depression & anxiety & I’m always at a loss when it comes to support. I just don’t know where or who to turn to. Thanks I’m advance 😊

[Lunus in reply to Kittiekatz]

Kittie Suffering from BPD and previously Social Phobia I’ve always suffered from anxiety and depression. There are two Self help books I would highly recommend if you can’t find any support. The Mindful way through depression by Mark Williams and Kabat Zinn. This comes with a free CD on meditation and basic yoga. I recommend the audio format. The other book is overcoming Social Anxiety and Shyness by Gillian Butler. Many others available that you may prefer. Good luck.

[Hidden in reply to Kittiekatz]

No Kittie, they are other support communities on HealthUnlocked.

If you look top right - search HealthUnlocked, you can put any health issue you may be dealing with and a choice of support groups / communities will come up.

There is also a positive wellbeing group, healthy eating, fitness groups and so much more here on HealthUnlocked. BLF is just one of the many.

[Kittiekatz in reply to Hidden]

Thanks so much, just now noticed your response. I'm not on here that much, & haven't quite got to grips on how to navigate my way around it properly. Thanks again though 👍🏼😊

[Hidden]

Hi Lunus and welcome to the forum! You couldn’t ask for better, more supportive company and I completely understand the need to have one’s own space. I hope you find everyone as helpful as I have and pick up some tips and friendships along the way. X

[HungryHufflepuff]

Hello and welcome. Hopefully you’ll find the support and advice you need here. Wishing you all the best.

[Lunus in reply to HungryHufflepuff]

Thanks Hungry. Everyone seems very friendly. Thanks everyone for your kind words and warm welcome.

[Patk1]

Hello and welcome x

[AngieB72]

HelloI am a fellow PF warrior. Diagnosed 13 years ago but definitely had symptoms at least 3 years prior to that. This forum is great as is the Pulmonary Fibrosis UK Facebook group which is also a private secure place to chat.

[Lunus in reply to AngieB72]

Angie I didn’t know you could have it that long so your message has given me tremendous hope for the future. Thx x

[Alberta56]

Hello and welcome Lunus. It's kind of you to think of your wife, and there are lots of new friends to talk to here. Hope you can get plenty of gardening and walking in soon and even perhaps some footie. Do you watch or play?

[Lunus in reply to Alberta56]

I used to play but too old now but have always travelled home and away to watch my team. Gutted we haven’t been able to attend this season.

[Alberta56 in reply to Lunus]

There are walking football groups starting up near me and even a unisex walking hockey group. I toyed with the idea but not yet. Perhaps a miracle will happen and I can start knocking big men out of the way as I speed towards the goal. Hope you can keep up some form of gentle exercise- it's so good for us.

[Lunus in reply to Alberta56]

Alberta That made me chuckle, you go for it mate lol. I am very fortunate I’ve got gym equipment at home so will be sure to use it more regularly and am also looking forward to walking outside when the weather improves and Covid restrictions are lifted.

[Carnival567]

Welcome to this encouraging group, a good place to let off steam!

[Ergendl]

Welcome to the group. Hope you learn as much as I have from our fellow members's experiences.

[ElsaC]

Hello and welcome.

[Aingeful]

Welcome Lunus.I'm in my third year of IPF. Many tests were done to find the cause of it and anca vasculitis was the suspect .This disease affects the immune system and attacked my lungs and kidneys.I have found that a year of lockdown has affected me badly,mentally as well. My activity levels have decreased as has my motivation. I have been given exercises to do and am on various medications. I have rituximab infusions to control my immune system, steroids,folic acid and calcium etc.Since being given these my cough has lessened a lot.Good luck,this is a very supportive forum.They have helped me enormously.

[Lunus in reply to Aingeful]

Thanks for the message. Early days for me and to date I’ve just been given an inhaler which has virtually stopped the persistent cough I’ve had for around a year.

[johnderby]

Hi Linus, welcome to the site. I do not have PF or BPD, but there are those on here that do. who will more than likely respond to you soon. John

[Dedalus]

Hello and welcome Lunus

[Mrbojangles]

Hi Lunus,From a fellow IPF member welcome to this excellent forum.

I see you don’t want to worry your wife.

I too started with a similar mindset but as time has progressed Mrs B has gone out of her way to understand this horrible disease.

She is currently swatting up on lung transplant stories and has a far greater understanding of what lies ahead which, if i am honest is a relief to me as the old saying “ a problem shared is a problem halved” .

Stay strong and demand answers from your pulmonary team if you feel they are not being forthright.

I insist on copies of every scan report, lung function tests, blood tests etc as though not qualified it certainly gives me a greater understanding of my own body.

Currently going through pre assessment tests for double transplant.

Stay strong and don’t forget wine helps!🤪🤪

[Karenanne61]

Welcome to this friendly, funny and informative site.

[Mavary]

Hi Lunas. My Husband had IPF. There is a difference between IPF and PF with PF having a better prognosis. There is a Pulmonary fibrosis site which can give you more information or alternatively the BLF can provide you with lots of information.

[Lunus in reply to Mavary]

Thanks.

[jmsutt73]

IPF here. My best advice is to take one day at a time, to avoid all people and situations that put you at risk of developing congestive respiratory illness, if you smoke, quit immediately, and avoid any sign of smoke. Move away from smoke. A good support system, someone you can vent to...this is an excellent venue for that purpose. Expect a PFT every six months; if the Dr. does not order it, ask them to. If it is IPF, and if you can take one, start on one of the anti-fibrotics as soon as possible. This will potentially slow down the progression of the fibrosis. All the best. J

[Lunus in reply to jmsutt73]

Thanks. Useful information.

[Nicholatracy]

Hi, glad you joined us. Great forum very informative, relaxed with a lot of humor 🐞

[Lynzilou]

Hello Lunus, I too, have pumlonary fibrosis. I am extremely short of breath all the time and have to sit down after any exertion - do you find the same? Do you know what anti fibrotic medication is?Regards, Lynne

[Lunus in reply to Lynzilou]

Hi. Yes I’m exactly the same. I know there are medications that are available that hopefully slow the progression but I haven’t seen a lung specialist and found out what they are yet. I should find out over the next month or so.

[jmsutt73 in reply to Lynzilou]

There are two anti-fibrotics available today, Ofev, and Esbriet. I take Ofev and it has slowed down the progression. Ask your pulmonologist about them. Hope this is helpful. J

[Lunus in reply to jmsutt73]

Many thanks.

[Lynzilou in reply to jmsutt73]

Hello J - Thank you so much. I will write to my specialist today for advice. In what was has Ofev slowed your ipf?. Lynne

[jmsutt73]

How one learns that Ofev is slowing progression is through their semi-annual Pulmonary Function. The numbers reflect whether progression is or is not occurring. J

[jmsutt73]

As I understand it, neither of the anti-fibrotics is prescribed for everyone who has IPF. The pulmonologist would be the one who would decide if a particular patient would benefit from taking an anti-fibrotic. J