March 2, 2019 at 9:11 am #17213Jan GrenzParticipant
while it is my wife who is the patient, she is less comfortable with writing in English, so I will try to tell her / our story in a nutshell. Before I do that, I would like to express our gratitude to all of you who share your experiences in such an open and knowledgeable manner!
My wife was 37 when all of this started. She had never had serious health issues until she was pregnant with our second daughter, who was born in December, 2013. During pregnancy, my wife developed a persistent cough. Annoying, but nothing serious, as she thought back then. During the winter of 2014-2015, she noticed she had to cough more often and went to see the doctor. What followed was the diagnostic odyssey so many of you know all too well: auscultation, blood tests, spirometry… then BAL and in December, 2015, bronchial biopsy. We are lucky enough to live in Switzerland, with an excellent pneumologist, IPF and HP experts and an appreciative health insurance (at least so far) at hand.
Given her young age and lack of serious exposure to causal agents of lung fibrosis, the doctors first thought of sarcoidosis. But the biopsy results left no room for doubt, as there was UIP. Of course the doctor told us not to check the internet for “lung fibrosis” and of course we did. The following days were… well, you can imagine. The diagnosis was and is hypersensitivity pneumonitis (HP), genesis unknown.The main argument for this being HP and not IPF was the location of the scarring, in the upper lobes.
Medication: during the summers of 2016 and 2017, my wife was twice put on prednisone at 50mg (i.e. 1 mg/kg at her weight). In the following months, the cough nearly went away she was much more energetic. But it seems this dosage cannot be kept for long without serious side effects. So prednisone is now down at 15 mg/day and is complemented by Cell-Cept (I do not remember the dosage). Since February 2018, she is on Esbriet (pirfenidone) at the recommended dosage. The insurance accepted that although the drug is licensed for IPF only as of now. Then there is an antibiotic, Bactrim, to make up for the immuno-suppressive effects of predisone and Cell-Cept. Plus a couple more things, such as Omeprazole (a proton flux inhibitor). She is only 42 and has to take all those pills every day, and she hates it. The drug she likes least is morphine, which is about the only thing still effective against the cough.
Over those 5 years, her lung function has slowly declined, from about 70% to 50% of the target value for FEV1 for a female of her size. Walking test results were good and stable for a long time, but now have declined as well. She should exercise more according to the doctor, but has a hard time motivating herself. Yet she manages daily life well, with two kids and a house, and all of that without ever complaining. But it is visibly becoming a little harder for her with every month that passes – winter being a lot worse than summer. She is not yet on supplemental oxygen, but we already got a portable device from the “Lungenliga” – a private association supporting lung patients (thank god for those people!) – which is started to use occasionally.
Being her husband, I am still searching for the right approach to her illness. Coughing is something that is hard to ignore, but I had to learn that she feels best if I do not react to it (or bring her a glass of water, without commenting or asking how she feels). Her greatest wish is to keep up a life as normal as possible for as long as possible. Maybe it’s that mum thing – even in this situation, the girls’ well-being matters more to her than anything else.
So, that’s our story. I hope some of this information, e.g. one the medication, will be of use to someone. To all of you, I wish you all that my wife wishes for: a quality of life as good as possible for as long as possible, and may you live to see the day when a cure for this disease will be found. I firmly believe this day will come.
March 2, 2019 at 9:21 am #17233
Wow, thank you so much for sharing your wife’s experience and your journey with HP with all of us! I know the folks accessing this forum particularly for information on HP, will also find your contributions so helpful. Sorry to hear of your wife’s diagnosis so young, I remember how that feels and it is so difficult to navigate. Glad she has you by her side, and that she has a wonderful pulmonologist in Switzerland!
My friend was diagnosed with pulmonary sarcoidosis last year, but I don’t know about scarring in her lungs so I wonder if she should investigate more, simply to be proactive in managing any/all disease progression? Neither of us, to our knowledge, had any type of known exposure to agents that would damage our lungs either. That is one of the most frustrating things…
I am glad the medication regimen is improving the side effects for her, but I can imagine its frustrating having to take so many medications. I’ve heard of both cellcept and Bactrim being effective in various lung diseases for symptom management. I hope these continue to help alleviate her of the side effects, and that the portable device is helping her too. Sometimes even a boost of oxygen occasionally is helpful, even if she isn’t on supplemental oxygen all the time. Does she use it at night? I was encouraged to use mine at night first, essentially giving my heart/lungs a “boost” when I didnt want to wear it during the day. Just be careful as too much 02 can cause problems as well. Do you think her doctor will prescribe the oxygen for her soon?
Please send your wife our deepest gratitude for being willing to share her story, and my best wishes to her. I completely understand how difficult it is to live with a lung disease – I am 31 and never thought I’d be living with IPF. Kudos to her for managing a household with two young kids as well, she sounds amazing and I am glad you’re by her side as well Jan. Best wishes to you both and feel free to write anytime!
March 5, 2019 at 10:44 am #17336
Hi Jan – There are some good ideas that may help your wife throughout these forum boards. Some are herbal, some supplements (me), some clinical trials available, some for class IV laser, and combining two or more may be very significant.
The top two I would suggest to you: Laser treatment, certain supplements. Please ask if you have an interest as I don’t want to just make recommendations you can’t use.
Best – Steve
March 5, 2019 at 10:31 pm #17363Terry MoriartyParticipant
I find your wife’s story very interesting. I also have HP, diagnosed in 2007. I was one of the lucky ones, getting diagnosed within 3 months. I was working in Australia at the time. But it took 3 general practicioners there and my own primary care doctor in the US (a pulmonologist), all stating bronchitis, before I was seen by one that said ‘no, it’s something else’. He got me to an Australian pulmonologist who ordered a VATS that showed HP due to an unknown organic organism.
Over the years, my biopsy slides have been reviewed by 3 pathologists who agreed on the diagnosis.
For the first 4 years, I was fine. Then, I had an exacerbation that really kicked off the fibrosis. Went on oxygen. Still was active, but slowed down. Now retired.
I can’t imagine dealing with this condition with 2 young children. It was hard enough raising two kids when I was healthy. Total kudos to your wife and to you for your continuous support.
I am interested in knowing what medicines your wife is taking. There are few options here in the US, nothing government approved. My impression is that Europe is ahead of us in approving treatments for most diseases.
Thanks for connecting with us.
March 2, 2019 at 12:38 pm #17242AnonymousInactive
Hi Jan @jan-switzerland
and a very big thank you for sharing your and your wife’s history with us.
Every experience enriches us by sharing challenges and successes of each, but also by having one more member in this community, which is a bit to some of us a second family.
Greetings from France. Where are you in Switzerland ? (If it is the french side, I will gladly accept to exchange in French with your wife).
I have no experience on HP, my roommate being IPF, but I fully understand the tiredness with lung disease and managing a daily family life with two kids … and one husband 😉
You mentioned it, as long it is possible, exercising is really important to help medication to slow down the disease progression. It is difficult … I went there and needed to make some choices in my life to be able to exercise enough. Some were difficult, some decisions hard to take, but I can tell you that benefits are there and I’m now in much better shape than 6 months ago. Answering to your question about the right approach, maybe it is a thinking track with her … how to free-up some time and energy for exercising … maybe also, if she is accepting, some exercising you could share and do together …
Anyway, thank you again for posting here, our caregivers are so important for us, even if sometimes it can be ungrateful when we (the patients) prefer that you (our caregivers) don’t react.
March 2, 2019 at 4:17 pm #17255
Couldn’t have said it better @jeanmichelf, thank you! One more person to a group you never wanted to be part of initially (meaning, you had a lung disease) but one that has become so special as a result. Each person’s story certainly does enrich us, I really like how you phrased that. Hope your weekend is going well 🙂
March 4, 2019 at 10:41 am #17294Jan GrenzParticipant
Hi Charlene, Salut Jean-Michel,
thank you so much for your caring and helpful answers! We live near Bern, that is very close to the “Rösti border” (the line dividing French- and German-speaking Switzerland). Unfortunately, my wife does not speak French… c’est dommage.
Concerning the differential diagnosis of sarcoidosis vs. HP and IPF, there is a parameter among the results of the broncho-alveolar lavage that is used for that. Sorry, I do not remember what it is called, but it apparently allows a clear distinction between the diseases (so the doctor said). Then again, sarcoidosis is another one of those “diseases with a thousand faces”, and apparently hard to deal with as well.
Jean-Michel, thank you for your advice on exercise. Doing exercise together, and putting e.g. physiotherapy first in the calendar, rather than squeezing it into a niche left by other activities, sounds like two excellent ideas.
Best regards, et meilleures salutations de Berne,
March 4, 2019 at 6:53 pm #17313
Thanks so much for getting back to us Jan, and glad our replies were helpful. This is a pretty great community to be part of in terms of support, so I do hope it is helpful to you and your wife to be connected 🙂
Thanks for the feedback on sarcoidosis, I’ve heard it is a tough disease to manage as well. One that seemingly, not a lot of physicians know about, kind of like IPF. I know a lot of times (or I believe I’ve read this somewhere) pulmonary sarcoidosis can turn into PF, so I am trying to balance my knowledge of that with my friends diagnosis. I hope she gets looked into more….
Take care and best wishes to you and your wife. Feel free to write us anytime!
March 5, 2019 at 7:31 am #17329John BlancoParticipant
You people in here are great. I am new here and new to the PF disease. But this forum seems so much different than other forums I have joined in the past. There is feeling and concern here, and information to help each other. I see my doctor tomorrow to discuss my situation more as I was just confirmed with PF last week, even though I have had the symptoms for a while. I will definitely stay close to this site and wish the best for all of us. God Bless.
March 5, 2019 at 7:30 pm #17348
Thank you so much for your kind words, and welcome again to our forums! While I wish it wasn’t this cruel disease that brings us all together, I am glad you’ve found such a great community of support through this platform. The people here genuinely care and want to help/support anyone as best we can. Feel free to write us anytime with questions!
If you’re comfortable, please connect back with us about your appointment tomorrow and let us know how it goes. I’ll be thinking of you and hoping all goes well. Wishing you nothing but the best and I look forward to getting to know you a bit more through the forums.
March 5, 2019 at 7:45 am #17330John BlancoParticipant
I am sorry for posting this here but as I am new to this forum, and I am still learning how to use it. I received messages from Steve Dragoo last night and read them this morning, but I don’t see how to respond to him. I don’t see a button for help, so I decided to ask here. Thanks.
March 5, 2019 at 9:48 am #17334
Hi John – I hope you found my response. I have learned a coup;e tricks that help. I find out what your forum name is and use it at the beginning which will alert you directly if you have added your email to the profile. Also, there were a couple of times I wanted to respond but could not – finally I figured out the forum signs you out from time to time. Problem fixed. Remember too you can always send a private message to most people here. Steve
- This reply was modified 3 years, 6 months ago by Charlene Marshall. Reason: tagging
March 5, 2019 at 7:33 pm #17350
Let us know if you’ve received these messages, we tagged you in them which hopefully means you got an email notification that someone has replied to your topic. “tagging” is when you put the @ symbol and start typing the person’s handle/screen name. As an example, Steve’s is @steve-dragoo. By doing this, he will receive a notification that you tagged him in something on the forums and can potentially reply sooner, depending on what he has going on. He is a wonderful member of our site, very knowledgeable! Signing in and out is helpful for sure too, just to kind of refresh everything.
Were you able to locate Steve’s post, John? If not, I can tag you in it to help illuminate it for you. Goodluck tomorrow!
March 5, 2019 at 9:32 pm #17362Jerry BeelerParticipant
I too am struggling to navigate these forums. So many topics and such. Not sure if I’m in the correct one or not. I wish this was in more of a chat room format so we could see who is here and start talking to the group. I gave up for a week but came back tonight to keep exploring.
March 6, 2019 at 9:30 am #17366
Nice to have you back and so sorry to hear you’ve been struggling with navigating this site. I know the site which powers the forum did an update a few weeks ago, and lots of changes went array so we’re still trying to repair those issues. While we can do a lot of changes, fixing some of the bugs are dependent on the developers of the site and we haven’t been able to get in touch with them. Is there anything specific you would like pointers on, when it comes to using the forums, Jerry? Let me know and I’d be happy to post some further instruction for you, or feel free to check out the “Using Our Forums” page too, which can be found here: https://pulmonaryfibrosisnews.com/forums/forums/forum/using-our-forums/
Let me know if this is helpful, and we’re working on a platform to see if we can get more of an instant-message option available for the site too, especially if we launch an online PF support group through this site. Thanks for giving us another chance Jerry, and happy to help you navigate the forums if I can.
March 6, 2019 at 4:17 pm #17378
I took me a while to get used to the boards and a couple of things have helped. You can see who is online on the right banner. Just about anyone can be directly emailed for private conversations. The forum link labels each forum but sometimes a post or two is a little out of place. Hope these help you. – Steve
March 6, 2019 at 8:54 pm #17386
Thanks so much for your response and encouragement to Jerry too. I really appreciate your helping the other members of this site too, thank you! I spoke with our tech team and tomorrow we’re going to put up a survey on the site to try and collect the most difficult aspects of this forum for folks, and address those through an instruction manual or FAQ of some sort. I really don’t want the challenge of navigating this site to deter people from using it, as I’ve learnt so much being a member here and I know it has helped others too. Thanks so much again for your responses, and if you think of anything in particular that several members are having a hard time with, please let me know. I am going to work on compiling that tomorrow based on what others have shared with me 🙂
Appreciate it Steve!
March 7, 2019 at 11:01 am #17392
Hi Charlene – a couple of quick additions to my note above would be: Sometimes a particular comment by a member or administrator is difficult to locate – how can we find those easier? If you cut and paste something to a post, approval is required and in at least one instance the article I wrote never posted. So it would be beneficial if we knew to copy anything we write before we hit the submit button.
Thanks for the opportunity to help influence improving the site.
Hopefully, your temps go above zero eminently… Steve
March 8, 2019 at 10:34 am #17431
Thanks so much for helping me compile the issues that members are having, we’ve hopefully figured out a way to collect this and address it. A survey about this is going to be posted today, so I’ll make sure you tag you in it as I know you have some valuable information to add! The copy/paste issue is very true; the site tends to mark anything that is not the correct format (which can happy with copy/paste) as spam, requiring moderator approval which can be frustrating for members. I’ll add this to my ongoing note about things to address, and then hope others share additional experiences that are difficult so we can address them. I’m so thankful for your contributions, as you’re immensely helping to improve the functionality of this site!
Talk to you soon,
March 8, 2019 at 10:38 am #17433
March 8, 2019 at 10:46 am #17436
You’re right – I just approved your first post, which didn’t have any links or formatting issues within it so I don’t know why it picked it up as spam. I am learning so much more than I ever anticipated with WordPress, but it isn’t a bad thing, as when we get this resolved, it will feel so satisfying! I’ll adjust the English language setting in WP and see if it makes a difference. Basically, the higher this setting the more spam it assumes is taking place on the forums, as if any words/grammar/language differ from proper English, the forum assumes it is spam. I’ll see if lowering it a bit makes a difference….
March 8, 2019 at 2:09 pm #17450Terry MoriartyParticipant
Is it possible to move the discussion of this discussion forum’s issues (there are so many) to another topic thread and get back to the original topic? Thanks
March 9, 2019 at 8:18 am #17480
Yes, good idea – I am working on this, but it is certainly a work in progress. We’re trying to organize the issues the site is having in a concise way and maybe make an FAQ forum where topics can be organized according to problem/issue with the site. The thing is that is taking time is compiling the issues from members, and we’re going to start asking for feedback on this via a survey. It was going to out out yesterday, but the tech member who was going to post it had like 80+ surveys to get up on all the different sites that BioNews hosts. It’ll be a work in progress, thanks in advance for your patience and feel free to re-start the discussion on HP as a reply 🙂
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