I have RA also with CCP and RF with Nodules in my lungs in 2012 before I was even diagnosed with RA I had a fungal infection in my lungs and the pulmonary doctor was shocked to see it I just was diagnosed with RA cause now is showing up in my joints and high CCP levels and high vomitory factor levels and I have to be watched every six months by the radiology only one Nigel is growing since 2012 so they want to pay attention to that so I can relate to what you’re talking about and I also work for the VA hospital which a lot of the nurses and things don’t believe that this can happen with RA this has given me hope and to know that I’m not alone in this and I will share this with the people on my job so they could be educated in what I’m going through because it’s not just my joints but it’s also affecting my lungs and has been since 2012 just didn’t know that it was RA
Hi Chiquita thanks for sending a comment and watching my videos I’m glad they helped and yes please do show them to those who seem to have little knowledge. It’s one of the hardest things about having these issues is no one understands or believes in it all. I’m always here if you need a chat and if there is any thing specific you would like me to make a video or talk about feel free to send me a comment and I’ll do my best to get to it asap. I’m really sorry you are going through all this. You take care of yourself sounds like it was already impacting your lungs before diagnosis it was with me too I just didn’t connect the two issues but my lungs started being an issue before I knew I had RA. Do your best to stay away from infections, can’t be easy in your job. Much love and breathe easy hun x
I just got diagnosed with IPF myself. The doctor thinks it’s rheumatoid arthritis in my lungs!! I like the video hopefully in the future I can do one as helpful as yours...
john bolton hi john I’m so sorry you are dealing with this diagnosis hun I hope you can find some help and support here and over on my Facebook page or Instagram
Funny enough I seem to be getting a cold..,again... o2 dropping and struggling lol it's ridiculous I never get a break from infections and viruses and complications...I know you ladies understand just how it goes xx
Watching this a second time. I just wanted to second your call for doners. But also, due to my illness, and the shameful lack of RA research, I signed up to be a full body doner for research to our state medical university, which is world famous for a particular reason. In the paper work I had to fill into be in the program, I made sure to tell them to pay particular attention to my lungs. Others like us could do that.
Hi , please please get off o methotrexate, I was on it for 6 months and my doctor thought I had heart failure,my lung filled fluid, and I was in the hospital for 5 days iam now off methotrexate iam on oxygen 24 , 7 iam 72 years old , iam on predizon & pain pills my doctors are trying to get me off of the meds iam on now I going for a test were they put a tube down my throat and see if I have any other infection in my lungs one doctor said I have the lungs of a 90 year old I do have R A , they tested me and said it was the RA that damaged my lungs . If you have to go on oxygen please do it will help a lot . But please anyone that’s on methotrexate get off of it tell your doctor you want something else,, God Bless you and keep on believing I will be praying for you don’t give up🌈🙏
Peggyann Smith so sorry I didn’t see this message hun and I’m very sorry your hubby is going through this. Does the o2 help live a life more? I’m kinda hoping it will make a difference to me. Best wishes to you and hubby x
It hit my liver kidney and now my lungs been going through this process for 12years .i pray that anyone who reads this please remember your beautiful smart and strong god bless
Oh angel I’m so sorry you’ve been through such hell I know how hard mines been but my liver and kidneys have survived this far *touch wood* I’d like to let you know that this will make you the strongest person and you are smart and beautiful. Hold onto some hope hun because I’ve been thru hell too and right now I’m having the best period for 8 years health wise. I doubt it will last very long but I can go up and down fast. I treasure the good moments in life so much more because of what I’ve gone through with this disease 😘 please take care and I pray that you get some good days to enjoy. Sometimes it feels like you’ll never catch a break as one thing after another goes wrong but it can happen. Best of luck to you 🤗
@@MammaCass may you always find a smile when no one is around and you know that what ever happens god has us .pain gives use the strength to keep going thank you so much for your kindness to me your such a pleasure keep feeling better and always remember your amazing lady luv thank you so much
Angel love you hunny thank you so much for your kind words right now It’s been exactly what I needed to hear so I think you were sent just to boost my confidence without even realising I needed it! I’m always available to chat anytime it is a lonely world being sick and I often feel “normal people” don’t really get it it want to understand it 😂 much love and breathe easy hun xxx
@@MammaCass oo luv is me pleasure to be here for you all you ever have to call my name i'll always be around even just for a lovely chat remember luv you got this and many Irish blessing god bless you with as many good days big smiles luv🤗❤
Hi Cassie. You might remember me I made a video on rheumatoid lung about 3 years ago that you commented on. I didn't know you had started a channel. I have subscribed. Just got results back from a chest CAT scan that shows fibrosing process and a note from my doctor that it is RA fibrosis. I've been referred for a full pulmonary workup. Basically I'm scared out of my wits. In 2015 I got the diagnosis of asthma and was so relieved but now it seems things have taken a bad turn. I notice you started a Facebook group also. I might have to create a Facebook account so I can join in. My RA doc wants to start me on rituxan after my pulmonary work up. I'm afraid to take any rheumatoid drugs as it sounds like it can worsen the condition. Whst do u think? I have gone off xeljanz and leflunomide so I'm hanging in there with Vicodin! Rock on.
Carmen C OMG bless your heart hun I’m so sorry that it’s come to be, I must admit I felt worried for you, they kept saying mine was asthma too and there’s some emphysema in there too, but every time a ct scan would come up with fibrosis/ground glass opacities/crazy paving pattern, the pulmonary doctor has said let’s see how it goes, I think it’s improving, we won’t do anything risky to check further. Then it starts to go downhill again and I will end up in hospital and back at square one. Rituxan/rituximab is known as the least damaging to the lungs, I’ve heard positive stories about it but my personal experience was it didn’t benefit my RA and I did still end up in hospital with pneumonia and sepsis. It seems so sad that they are so keen not to make that diagnosis that so many of us suffer for too long. I’ve been telling them I felt I needed o2 at home for over two years and only now are they choosing to run that test. It’s not like we get that time to waste. Admittedly starting the group on Facebook has really helped me understand that the average survival rate is only an average. It’s because they refuse to diagnosis so a large amount of us get diagnosis post mortem which brings the average life expectancy down a lot. I’ve spoken to a lot of people now with stories of still going ten years later and living a fairly well life, lung transplants with success stories etc - sadly there are the other stories and we’ve lost a few 😢 but overall it’s been a positive experience and we would all love for you join us. I know how scary it is when you first find out and I know you’ve done research so it’s hard not to feel afraid of what is to come or the lack of viable treatment options. I’m more than happy being friends here or chatting on Instagram whatever is good for you, I don’t get on Facebook as often as I should really but support through this is vital, people who understand what you are going through really does help. I’ll have a little pray for you that you stay stable as much as possible. Don’t hesitate to message me if you need to let it out a bit. Much love and breathe easy hun x
Cassie, you are so kind to get back to me so quickly. I am encouraged by your thinking on the mortality numbers. I keep listening to this video. You cover so much. Please do more videos. Your story about getting hit and goin down, fighting for breath, and then maintaining at a new low, sounds like RA in general...and now I know the lung disease will be similar. Somehow, it is better to know the possibilities rather than facing the unknown. I hope my fibrosis has been caught early...because my cat-scan was for cancer rule-out (because of all kind of unexplained inflammation in soft for tissues the last 9 months) rather than chest issue . But the one niggling symptom that i have been ignoring for months, and haven't even mentioned to a doctor is phlegm in my throat with constant clearing and feeling like my throat is closing. I guess I thought it was allergies or a lingering (like 9 months) cold. duh. my son noticed the throat clearing and got annoyed with me. He said, just drink some water. But its coming up from a different tube, you know? Anyway, blah, blah, blah. thanks again for being here. carmen
Carmen C yes!!! I had the same at first where I was bringing up horrible phlegm, I take 7 tablets a day now that keeps the stuff moving off the chest and now unless I’ve got an infection my chest stays pretty dry. It’s so strange that you’ve come to talk about this, I was only thinking of you a few days ago wondering if it had developed further or not. When I first got this diagnosis you were the first person I found who even discussed this disease and I suppose from there that made me want to do these videos and let people learn what they rarely do about Rheumatoid arthritis! I didn’t even know it could happen till it happened to me. I know how scared you must feel right now, I really hope they’ve caught it in time to keep you stable. Fingers crossed (if you can cross them). I need to do a few more videos as there’s always something developing! And wanted to chat more about the meds and option open to people like us. I’m not always certain how things are different in America, or anywhere overseas. I can only really tell my story but I hope it helps some. I was so anxious at first! All I could think was I wouldn’t see my kids into adulthood, now I’m determined I will xx
There still isn't much out there about this RA complication. Particularly treatments. Articles all end with "should be aggressively treated" but there is no decent studies yet on what those treatments would be. Maye you could do a video on your real life experience of treatments you have tried so far. I wonder about the role of anti-fibrosing drugs....I'm going to try and get ahold of my actual radiology report today. I haven't done any videos in over two years. Maybe I will start to track my experience with this issue, because I am so comforted that you are here in youtube land and we can share our experience. The video of you in he hospital really shows the stark reality of this diagnosis. Very scary.
Sorry I didn’t get back to you properly here hun I had a terrible day yesterday and have been fighting infection in my lungs all week! Again! I really wanted to show the extremes of trying to breathe when your lungs are filled with inflammation/scarring. There wasn’t anyone around to record me at the worst points as it’s impossible to think at those extremes. I’m hoping documenting everything may help in future research some how. I’d like to think my experience could help future generations who face this diagnosis. I’m so glad you feel some comfort in finding me here, I definitely felt the same when I watched your video and I’m just gutted for you that it’s become this! Have you found out more yet? Many patients are on one particular med but I haven’t been put on it yet so know very little. I will do a video now about my last message and where I’m heading next with medication x
My mom's old is uip and she is very week and verry dipresse plz suggest me something her 30% lungs works only she is an oxigen patient my age is 17 and I have no any one in my family only my mom and she got this ild uip what can I do I don't understand my financial condition is also not good and I am starting work before 1/month I teach some children in school mam I m verry disappointed
Oh I am so sorry you are going through this. Well done on starting work as a teacher though! This is a good thing, being a teacher is admirable. I am sorry your mum is so poorly and you are on your own with this. My children are also pretty much alone with a sick mum :( I feel very bad about it often. I can’t make you any promises as I’m not a doctor and more importantly I’m not your mums doctor so I don’t know the case fully. In my experience speaking with many other ILD patients is that while we are all very conscious of how short our life expectancy is etc. Please do have some hope hun. There is a lady here on RUclips called June Gaul, I recommend you visit her videos too as she is much further advanced than me with copd, she’s on oxygen among other treatments and has a wonderful positive outlook, at times I’ve watched her dance around cooking and just been fascinated by how she contends with being so poorly. She has given me a mug more positive and determined outlook on my situation. I’ve spoken to many others on my Facebook page, some have lived with this disease for ten years, ones had a lung transplant and is recovering so well he doesn’t have time to come on the Internet, some of the ladies I speak to with this disease are so incredibly brave, one lady has worked full time up till just recently. All of these people are not only a massive inspiration to me that it is possible to fight this disease and live longer than expected and they give me comfort and hope. I hope I can give you a bit of that too. I hope it’s not too hard for you to read this much! Please stick around and hopefully you will get some hope too. All you can honestly do is try to help care for your mum, ask for social care help if you need to. Try to find things she can do or enjoy to keep her in a positive mind space. Maybe a hobby/craft like I do a lot of here. I make soap and bath bombs but maybe your mum would like to knit, crochet or sewing? Maybe a pet for confort and love so she doesn’t get lonely while you work. I don’t know which country you live in but is there any financial support available to disabled people there? I’m in the UK and I receive Personal Independence Payments to help me survive the expenses of living with a disability. I really hope this is helpful to you. Please feel free to drop in for support or if you have questions. Most importantly for people with lung problems is avoiding infections, use alcohol hand cleaners and avoid people with viruses etc. You may find this an issue when starting as a teacher if you teach younger kids they have so many bugs going round and your mum will be more prone to these and they will make her very poorly. It’s inportant to get her medical help as soon as she seems to be getting a cold. Much love and breathe easy hun xx
Hum and the transplant doctor wanted to know why I don't take any of the new drugs for Lupus, there are many RA patients in worse condition that have a double lung transplant. Remember, if your ßhort on oxygen it will cause damage to other organs, get a pulse oximeter to check your O2 levels and report to your pulmonary doc. Make them listen, because if you can head off the crisis, you may not loose the level you're at......So you know not being at the correct oxygen level can cause damage to other organs and cause PH....So why aren't you taking steps..humm young lady🙂 Lots of love🙂💓👍
June Gaul I know Hun but they don't seem to listen to me, unless my o2 is low when they see it and even then they said oh we will see how you go, I've got the pulse oximeter and I've started taking photos of it to prove how it's been in between appointments and will be showing her them all next appointment cos it's getting lower all the time. Especially if I get moving about and I do feel so tired, the community respiratory team are requesting the sleep study after asking lots of questions and I think that will help show them how bad I can get cos when I wake up at night my o2 can be low 80s but whilst I'm sitting here all calm not speaking or anything then my average o2 is about 96, 94-91 on a rough day but with no activity. Personally I feel I would benefit from oxygen therapy, so why do they not seem keen to give it to me, lately I've felt like my medical professionals are all just giving up on me and don't really want to know anymore, like they don't know what to do?! My rheumatology nurse has left and I felt she really understood as she had psa and the other rheumy nurse with ra is lovely and has told me she wants to get on my team and arrange a case study for me but then every time I phone to talk to her they get someone else to call me back.. now I feel like I can't even turn to rheumatology for support :/
Same problem here with the o2. While I'm in the dr.'s office all calm and stuff, I can get 96. But let me get up and move about and I know it dips. I thought for sure after the PE close-call back in November, I'd be on oxygen therapy, I could breath so...much....better with it. But no. I'm going to get me one of those oximeters and start monitoring and take pictures too. I really think I could have a better quality of life with the oxygen.another good vid Cass!!!
Unfortunately, one huge problem with the British Medical is they don't like informed patients and have a tendency to look at them as though a complainer, it's disgusting. Next time you call the nurse tell whoever you talk to you are returning her call and use those words with anyone who comes on the phone until you finally speak to her.
chronicstitcher McYarn thank you Hun, it's frustrating because knowing we need it and feeling as tho we should prove what is happening when the docs are not there. Almost like being on trial to prove what we say lol, surely it shouldn't be that way, it's no fun idea to me to at on o2 but I'm starting to feel at risk because it's not there. We will see, it will be yet another crisis point to make a change, waiting for that and knowing it's coming is quite scary
June Gaul fantastic idea June! The issue is that we have to leave a message on automated line and then they call us back, I've specifically asked to speak to her specifically in my messages. I will hopefully spot her in the next clinic cos she always seems eager to see me
Hey mama I never knew RA did this to our bodies I have arthritis in my ankles and doctor didn't tell me much of anything else thank you for the info I'll have to put a call into my doctor see what they say hope you have a goodnight ❤️🙏🤗
hey Teri thanks so much for watching! yeah RA is an awful beast honestly I’ve dealt with many pain conditions over my life and never let any of them cripple me but RA took four months from diagnosis to completely cripple me, couldn’t even use the bathroom without assistance 😞 within ten months I was hospitalised with a lung crisis. now they aren’t sure if it’s the RA damaging my lungs, the meds, or the constant infections causing scarring because of being immune suppressed. admittedly I’ve had a fair few doctors tell me I was their worst case and I know mine was about as extreme onset as it gets. I hope and pray yours doesn’t spread from the ankles, the ankles are hard enough to cope with because it’s genuinely agony to walk in swollen joints isn’t it? if you ever need advice or support hun hit me up I’ve researched and researched with this condition so anyway I can help I will. my doctor phoned yesterday and decided they will test me for the gene mutation that creates genetic RA as my mum and nan both have had it, I worry for my kids, but also for this other genetic disease that causes early onset of emphysema as I was 35 when first diagnosed with that, my mum also has it. I’m anti ccp positive for rheumatoid and apparently that makes it more likely to be the worst form of the disease that can affect organs especially the lungs and heart. I remember the shock to realise what I thought was just horrible pain that I’d have to learn to live with, only to find out, it’s much worse than that and actually killing me. who knew? seems like they only raise that subject once you start having organ problems. x
@@MammaCass wow you are going through alot I really am praying for you I know some days I wake up in tears because my ankles hurt so bad but I have also been noticing my knees and hands have started to hurt as well I know the old weather can play a part in arthritis as well but last few months honestly my whole body feels like one tense ball but that could be due to stress as well but I'm definitely gonna have to give a call to my doctor and see what kind of arthritis he says it is because I was never told an do had no clue about different types of arthritis until about a yr or so ago I just assumed it was something just have to learn to live with and deal with not sure much can be done for it I usually take otc meds which help some but barely touch it on my worst days I noticed over the summer my ankles were still bothering me pretty bad which was strange because it wasn't cold or rainy I will keep in touch with you on here and I hope you feel better or atleast can get some kind of relief ❤️🙏🙏
@@teri_-ej9tk aww hun yeah it sounds familiar. They told me when I was 20 that I had arthritis in my hands and knees. I also had carpal tunnel syndrome in both wrists from that age onwards so I assumed a lot of my hand pain was the carpal tunnel until after I had surgery. They never tested me for RA but I expect I had I back then I just wasn’t in such extreme pain, I’d had severe pain in my spine since teenage years so I think I kind of assumed I was meant to be in as much pain, like that was just normal? I carried on without seeking help until my joints started flaring up swelling to three times the size as if I’d broken a bone, it went from joint to joint and encompassed every joint in my body by four months. I highly recommend asking to be checked for RA I often wonder if I had been treated before it got that bad would I be in this state now? It’s a shame too because I put myself through hell trying to keep going with pain all the time. As a single mum I think my life could have felt better if I wasn’t doing it all alone in pain. If you’re under stress and it is RA that is why you will be having a flare up of symptoms unfortunately this disease is often triggered by and worsened by stress. The most important thing you can do for your health is reduce any stress you possibly can. Not easy I know. I wish I’d know the damage I was doing to myself earlier though. I pray it isn’t RA for you hun but early diagnosis can make a lot of difference c
what's app love and sad status 2018 hi hunny I’m so sorry your mum has this disease. Does she know what led to her ILD like in my case it was Rheumatoid arthritis but many ILD patients have many different autoimmune diseases going on. How old are you? I can’t imagine how it must feel for you I’m sorry you are going through this too! Please do stay in touch, there is some hope, I myself am having a much improved period of time and I honestly never expected I could be this well once my lungs got so bad. I think it is a good thing to reduce stress and live as healthily as possible. Let me know more about your situation and your mums ILD and I will try to help and support you wherever possible. Be strong sweetheart your mum will need that strength too. Much love and breathe easy hun xx
I have RA also with CCP and RF with Nodules in my lungs in 2012 before I was even diagnosed with RA I had a fungal infection in my lungs and the pulmonary doctor was shocked to see it I just was diagnosed with RA cause now is showing up in my joints and high CCP levels and high vomitory factor levels and I have to be watched every six months by the radiology only one Nigel is growing since 2012 so they want to pay attention to that so I can relate to what you’re talking about and I also work for the VA hospital which a lot of the nurses and things don’t believe that this can happen with RA this has given me hope and to know that I’m not alone in this and I will share this with the people on my job so they could be educated in what I’m going through because it’s not just my joints but it’s also affecting my lungs and has been since 2012 just didn’t know that it was RA
Hi Chiquita thanks for sending a comment and watching my videos I’m glad they helped and yes please do show them to those who seem to have little knowledge. It’s one of the hardest things about having these issues is no one understands or believes in it all. I’m always here if you need a chat and if there is any thing specific you would like me to make a video or talk about feel free to send me a comment and I’ll do my best to get to it asap. I’m really sorry you are going through all this. You take care of yourself sounds like it was already impacting your lungs before diagnosis it was with me too I just didn’t connect the two issues but my lungs started being an issue before I knew I had RA. Do your best to stay away from infections, can’t be easy in your job. Much love and breathe easy hun x
I just got diagnosed with IPF myself. The doctor thinks it’s rheumatoid arthritis in my lungs!!
I like the video hopefully in the future I can do one as helpful as yours...
john bolton hi john I’m so sorry you are dealing with this diagnosis hun I hope you can find some help and support here and over on my Facebook page or Instagram
Funny enough I seem to be getting a cold..,again... o2 dropping and struggling lol it's ridiculous I never get a break from infections and viruses and complications...I know you ladies understand just how it goes xx
Haha here I am today heading rapidly downhill with another infection - when will they end?
Watching this a second time. I just wanted to second your call for doners. But also, due to my illness, and the shameful lack of RA research, I signed up to be a full body doner for research to our state medical university, which is world famous for a particular reason. In the paper work I had to fill into be in the program, I made sure to tell them to pay particular attention to my lungs. Others like us could do that.
Hi , please please get off o methotrexate, I was on it for 6 months and my doctor thought I had heart failure,my lung filled fluid, and I was in the hospital for 5 days iam now off methotrexate iam on oxygen 24 , 7 iam 72 years old , iam on predizon & pain pills my doctors are trying to get me off of the meds iam on now I going for a test were they put a tube down my throat and see if I have any other infection in my lungs one doctor said I have the lungs of a 90 year old I do have R A , they tested me and said it was the RA that damaged my lungs . If you have to go on oxygen please do it will help a lot . But please anyone that’s on methotrexate get off of it tell your doctor you want something else,, God Bless you and keep on believing I will be praying for you don’t give up🌈🙏
Awesome! Keep it up!
Wow nearly 200k subs
Thanks
Thank you very informative.
You’re welcome my social links are available on my about page if you need any advice x
My husband has RS ILD with pulmonary hypertension. He is on 6 to 7 liters of O2 24 hours a day.
Peggyann Smith so sorry I didn’t see this message hun and I’m very sorry your hubby is going through this. Does the o2 help live a life more? I’m kinda hoping it will make a difference to me. Best wishes to you and hubby x
It hit my liver kidney and now my lungs been going through this process for 12years .i pray that anyone who reads this please remember your beautiful smart and strong god bless
Oh angel I’m so sorry you’ve been through such hell I know how hard mines been but my liver and kidneys have survived this far *touch wood* I’d like to let you know that this will make you the strongest person and you are smart and beautiful. Hold onto some hope hun because I’ve been thru hell too and right now I’m having the best period for 8 years health wise. I doubt it will last very long but I can go up and down fast. I treasure the good moments in life so much more because of what I’ve gone through with this disease 😘 please take care and I pray that you get some good days to enjoy. Sometimes it feels like you’ll never catch a break as one thing after another goes wrong but it can happen. Best of luck to you 🤗
@@MammaCass may you always find a smile when no one is around and you know that what ever happens god has us .pain gives use the strength to keep going thank you so much for your kindness to me your such a pleasure keep feeling better and always remember your amazing lady luv thank you so much
Angel love you hunny thank you so much for your kind words right now It’s been exactly what I needed to hear so I think you were sent just to boost my confidence without even realising I needed it! I’m always available to chat anytime it is a lonely world being sick and I often feel “normal people” don’t really get it it want to understand it 😂 much love and breathe easy hun xxx
@@MammaCass oo luv is me pleasure to be here for you all you ever have to call my name i'll always be around even just for a lovely chat remember luv you got this and many Irish blessing god bless you with as many good days big smiles luv🤗❤
Hi Cassie. You might remember me I made a video on rheumatoid lung about 3 years ago that you commented on. I didn't know you had started a channel. I have subscribed. Just got results back from a chest CAT scan that shows fibrosing process and a note from my doctor that it is RA fibrosis. I've been referred for a full pulmonary workup. Basically I'm scared out of my wits. In 2015 I got the diagnosis of asthma and was so relieved but now it seems things have taken a bad turn. I notice you started a Facebook group also. I might have to create a Facebook account so I can join in. My RA doc wants to start me on rituxan after my pulmonary work up. I'm afraid to take any rheumatoid drugs as it sounds like it can worsen the condition. Whst do u think? I have gone off xeljanz and leflunomide so I'm hanging in there with Vicodin! Rock on.
Carmen C OMG bless your heart hun I’m so sorry that it’s come to be, I must admit I felt worried for you, they kept saying mine was asthma too and there’s some emphysema in there too, but every time a ct scan would come up with fibrosis/ground glass opacities/crazy paving pattern, the pulmonary doctor has said let’s see how it goes, I think it’s improving, we won’t do anything risky to check further. Then it starts to go downhill again and I will end up in hospital and back at square one. Rituxan/rituximab is known as the least damaging to the lungs, I’ve heard positive stories about it but my personal experience was it didn’t benefit my RA and I did still end up in hospital with pneumonia and sepsis. It seems so sad that they are so keen not to make that diagnosis that so many of us suffer for too long. I’ve been telling them I felt I needed o2 at home for over two years and only now are they choosing to run that test. It’s not like we get that time to waste. Admittedly starting the group on Facebook has really helped me understand that the average survival rate is only an average. It’s because they refuse to diagnosis so a large amount of us get diagnosis post mortem which brings the average life expectancy down a lot. I’ve spoken to a lot of people now with stories of still going ten years later and living a fairly well life, lung transplants with success stories etc - sadly there are the other stories and we’ve lost a few 😢 but overall it’s been a positive experience and we would all love for you join us. I know how scary it is when you first find out and I know you’ve done research so it’s hard not to feel afraid of what is to come or the lack of viable treatment options. I’m more than happy being friends here or chatting on Instagram whatever is good for you, I don’t get on Facebook as often as I should really but support through this is vital, people who understand what you are going through really does help. I’ll have a little pray for you that you stay stable as much as possible. Don’t hesitate to message me if you need to let it out a bit. Much love and breathe easy hun x
Cassie, you are so kind to get back to me so quickly. I am encouraged by your thinking on the mortality numbers. I keep listening to this video. You cover so much. Please do more videos. Your story about getting hit and goin down, fighting for breath, and then maintaining at a new low, sounds like RA in general...and now I know the lung disease will be similar. Somehow, it is better to know the possibilities rather than facing the unknown. I hope my fibrosis has been caught early...because my cat-scan was for cancer rule-out (because of all kind of unexplained inflammation in soft for tissues the last 9 months) rather than chest issue . But the one niggling symptom that i have been ignoring for months, and haven't even mentioned to a doctor is phlegm in my throat with constant clearing and feeling like my throat is closing. I guess I thought it was allergies or a lingering (like 9 months) cold. duh. my son noticed the throat clearing and got annoyed with me. He said, just drink some water. But its coming up from a different tube, you know? Anyway, blah, blah, blah. thanks again for being here. carmen
Carmen C yes!!! I had the same at first where I was bringing up horrible phlegm, I take 7 tablets a day now that keeps the stuff moving off the chest and now unless I’ve got an infection my chest stays pretty dry. It’s so strange that you’ve come to talk about this, I was only thinking of you a few days ago wondering if it had developed further or not. When I first got this diagnosis you were the first person I found who even discussed this disease and I suppose from there that made me want to do these videos and let people learn what they rarely do about Rheumatoid arthritis! I didn’t even know it could happen till it happened to me. I know how scared you must feel right now, I really hope they’ve caught it in time to keep you stable. Fingers crossed (if you can cross them). I need to do a few more videos as there’s always something developing! And wanted to chat more about the meds and option open to people like us. I’m not always certain how things are different in America, or anywhere overseas. I can only really tell my story but I hope it helps some. I was so anxious at first! All I could think was I wouldn’t see my kids into adulthood, now I’m determined I will xx
There still isn't much out there about this RA complication. Particularly treatments. Articles all end with "should be aggressively treated" but there is no decent studies yet on what those treatments would be. Maye you could do a video on your real life experience of treatments you have tried so far. I wonder about the role of anti-fibrosing drugs....I'm going to try and get ahold of my actual radiology report today. I haven't done any videos in over two years. Maybe I will start to track my experience with this issue, because I am so comforted that you are here in youtube land and we can share our experience. The video of you in he hospital really shows the stark reality of this diagnosis. Very scary.
Sorry I didn’t get back to you properly here hun I had a terrible day yesterday and have been fighting infection in my lungs all week! Again! I really wanted to show the extremes of trying to breathe when your lungs are filled with inflammation/scarring. There wasn’t anyone around to record me at the worst points as it’s impossible to think at those extremes. I’m hoping documenting everything may help in future research some how. I’d like to think my experience could help future generations who face this diagnosis. I’m so glad you feel some comfort in finding me here, I definitely felt the same when I watched your video and I’m just gutted for you that it’s become this! Have you found out more yet? Many patients are on one particular med but I haven’t been put on it yet so know very little. I will do a video now about my last message and where I’m heading next with medication x
Expert by experience. Amen!
My mom's old is uip and she is very week and verry dipresse plz suggest me something her 30% lungs works only she is an oxigen patient my age is 17 and I have no any one in my family only my mom and she got this ild uip what can I do I don't understand my financial condition is also not good and I am starting work before 1/month I teach some children in school mam I m verry disappointed
Oh I am so sorry you are going through this. Well done on starting work as a teacher though! This is a good thing, being a teacher is admirable. I am sorry your mum is so poorly and you are on your own with this. My children are also pretty much alone with a sick mum :( I feel very bad about it often. I can’t make you any promises as I’m not a doctor and more importantly I’m not your mums doctor so I don’t know the case fully. In my experience speaking with many other ILD patients is that while we are all very conscious of how short our life expectancy is etc. Please do have some hope hun. There is a lady here on RUclips called June Gaul, I recommend you visit her videos too as she is much further advanced than me with copd, she’s on oxygen among other treatments and has a wonderful positive outlook, at times I’ve watched her dance around cooking and just been fascinated by how she contends with being so poorly. She has given me a mug more positive and determined outlook on my situation. I’ve spoken to many others on my Facebook page, some have lived with this disease for ten years, ones had a lung transplant and is recovering so well he doesn’t have time to come on the Internet, some of the ladies I speak to with this disease are so incredibly brave, one lady has worked full time up till just recently. All of these people are not only a massive inspiration to me that it is possible to fight this disease and live longer than expected and they give me comfort and hope. I hope I can give you a bit of that too. I hope it’s not too hard for you to read this much! Please stick around and hopefully you will get some hope too. All you can honestly do is try to help care for your mum, ask for social care help if you need to. Try to find things she can do or enjoy to keep her in a positive mind space. Maybe a hobby/craft like I do a lot of here. I make soap and bath bombs but maybe your mum would like to knit, crochet or sewing? Maybe a pet for confort and love so she doesn’t get lonely while you work. I don’t know which country you live in but is there any financial support available to disabled people there? I’m in the UK and I receive Personal Independence Payments to help me survive the expenses of living with a disability. I really hope this is helpful to you. Please feel free to drop in for support or if you have questions. Most importantly for people with lung problems is avoiding infections, use alcohol hand cleaners and avoid people with viruses etc. You may find this an issue when starting as a teacher if you teach younger kids they have so many bugs going round and your mum will be more prone to these and they will make her very poorly. It’s inportant to get her medical help as soon as she seems to be getting a cold. Much love and breathe easy hun xx
MammaCass Creates June Gaul video I can't find plz send me link
Actually I want to talk with you
Hum and the transplant doctor wanted to know why I don't take any of the new drugs for Lupus, there are many RA patients in worse condition that have a double lung transplant. Remember, if your ßhort on oxygen it will cause damage to other organs, get a pulse oximeter to check your O2 levels and report to your pulmonary doc. Make them listen, because if you can head off the crisis, you may not loose the level you're at......So you know not being at the correct oxygen level can cause damage to other organs and cause PH....So why aren't you taking steps..humm young lady🙂
Lots of love🙂💓👍
June Gaul I know Hun but they don't seem to listen to me, unless my o2 is low when they see it and even then they said oh we will see how you go, I've got the pulse oximeter and I've started taking photos of it to prove how it's been in between appointments and will be showing her them all next appointment cos it's getting lower all the time. Especially if I get moving about and I do feel so tired, the community respiratory team are requesting the sleep study after asking lots of questions and I think that will help show them how bad I can get cos when I wake up at night my o2 can be low 80s but whilst I'm sitting here all calm not speaking or anything then my average o2 is about 96, 94-91 on a rough day but with no activity. Personally I feel I would benefit from oxygen therapy, so why do they not seem keen to give it to me, lately I've felt like my medical professionals are all just giving up on me and don't really want to know anymore, like they don't know what to do?! My rheumatology nurse has left and I felt she really understood as she had psa and the other rheumy nurse with ra is lovely and has told me she wants to get on my team and arrange a case study for me but then every time I phone to talk to her they get someone else to call me back.. now I feel like I can't even turn to rheumatology for support :/
Same problem here with the o2. While I'm in the dr.'s office all calm and stuff, I can get 96. But let me get up and move about and I know it dips. I thought for sure after the PE close-call back in November, I'd be on oxygen therapy, I could breath so...much....better with it. But no. I'm going to get me one of those oximeters and start monitoring and take pictures too. I really think I could have a better quality of life with the oxygen.another good vid Cass!!!
Unfortunately, one huge problem with the British Medical is they don't like informed patients and have a tendency to look at them as though a complainer, it's disgusting. Next time you call the nurse tell whoever you talk to you are returning her call and use those words with anyone who comes on the phone until you finally speak to her.
chronicstitcher McYarn thank you Hun, it's frustrating because knowing we need it and feeling as tho we should prove what is happening when the docs are not there. Almost like being on trial to prove what we say lol, surely it shouldn't be that way, it's no fun idea to me to at on o2 but I'm starting to feel at risk because it's not there. We will see, it will be yet another crisis point to make a change, waiting for that and knowing it's coming is quite scary
June Gaul fantastic idea June! The issue is that we have to leave a message on automated line and then they call us back, I've specifically asked to speak to her specifically in my messages. I will hopefully spot her in the next clinic cos she always seems eager to see me
Hey mama I never knew RA did this to our bodies I have arthritis in my ankles and doctor didn't tell me much of anything else thank you for the info I'll have to put a call into my doctor see what they say hope you have a goodnight ❤️🙏🤗
hey Teri thanks so much for watching! yeah RA is an awful beast honestly I’ve dealt with many pain conditions over my life and never let any of them cripple me but RA took four months from diagnosis to completely cripple me, couldn’t even use the bathroom without assistance 😞 within ten months I was hospitalised with a lung crisis. now they aren’t sure if it’s the RA damaging my lungs, the meds, or the constant infections causing scarring because of being immune suppressed. admittedly I’ve had a fair few doctors tell me I was their worst case and I know mine was about as extreme onset as it gets. I hope and pray yours doesn’t spread from the ankles, the ankles are hard enough to cope with because it’s genuinely agony to walk in swollen joints isn’t it? if you ever need advice or support hun hit me up I’ve researched and researched with this condition so anyway I can help I will. my doctor phoned yesterday and decided they will test me for the gene mutation that creates genetic RA as my mum and nan both have had it, I worry for my kids, but also for this other genetic disease that causes early onset of emphysema as I was 35 when first diagnosed with that, my mum also has it. I’m anti ccp positive for rheumatoid and apparently that makes it more likely to be the worst form of the disease that can affect organs especially the lungs and heart. I remember the shock to realise what I thought was just horrible pain that I’d have to learn to live with, only to find out, it’s much worse than that and actually killing me. who knew? seems like they only raise that subject once you start having organ problems. x
@@MammaCass wow you are going through alot I really am praying for you I know some days I wake up in tears because my ankles hurt so bad but I have also been noticing my knees and hands have started to hurt as well I know the old weather can play a part in arthritis as well but last few months honestly my whole body feels like one tense ball but that could be due to stress as well but I'm definitely gonna have to give a call to my doctor and see what kind of arthritis he says it is because I was never told an do had no clue about different types of arthritis until about a yr or so ago I just assumed it was something just have to learn to live with and deal with not sure much can be done for it I usually take otc meds which help some but barely touch it on my worst days I noticed over the summer my ankles were still bothering me pretty bad which was strange because it wasn't cold or rainy I will keep in touch with you on here and I hope you feel better or atleast can get some kind of relief ❤️🙏🙏
@@teri_-ej9tk aww hun yeah it sounds familiar. They told me when I was 20 that I had arthritis in my hands and knees. I also had carpal tunnel syndrome in both wrists from that age onwards so I assumed a lot of my hand pain was the carpal tunnel until after I had surgery. They never tested me for RA but I expect I had I back then I just wasn’t in such extreme pain, I’d had severe pain in my spine since teenage years so I think I kind of assumed I was meant to be in as much pain, like that was just normal? I carried on without seeking help until my joints started flaring up swelling to three times the size as if I’d broken a bone, it went from joint to joint and encompassed every joint in my body by four months. I highly recommend asking to be checked for RA I often wonder if I had been treated before it got that bad would I be in this state now? It’s a shame too because I put myself through hell trying to keep going with pain all the time. As a single mum I think my life could have felt better if I wasn’t doing it all alone in pain. If you’re under stress and it is RA that is why you will be having a flare up of symptoms unfortunately this disease is often triggered by and worsened by stress. The most important thing you can do for your health is reduce any stress you possibly can. Not easy I know. I wish I’d know the damage I was doing to myself earlier though. I pray it isn’t RA for you hun but early diagnosis can make a lot of difference c
My mom is an ild patient plz say something some medicine or some advice for her care plz
what's app love and sad status 2018 hi hunny I’m so sorry your mum has this disease. Does she know what led to her ILD like in my case it was Rheumatoid arthritis but many ILD patients have many different autoimmune diseases going on. How old are you? I can’t imagine how it must feel for you I’m sorry you are going through this too! Please do stay in touch, there is some hope, I myself am having a much improved period of time and I honestly never expected I could be this well once my lungs got so bad. I think it is a good thing to reduce stress and live as healthily as possible. Let me know more about your situation and your mums ILD and I will try to help and support you wherever possible. Be strong sweetheart your mum will need that strength too. Much love and breathe easy hun xx
Ild uip