-
Where do you live, receive care, and are you in a local support group?
-
I live in New Zealand and am treated by the government health services but … have yet to find nurses or doctors that know enough to be able to talk to about anything related to pulmonary fibrosis much less the fibrotic NSIP they have confidently diagnosed. I know what little I know about it from researching the internet and from inspire.com and forums like this. Taiji, qigong and the rehab exercises help me feel better but the mental uncertainties are almost more hurtful than the physical. I have accepted the physicalities but still struggle with the mental uncertainties. Good to have these forums to share with others.
-
Hi Ted,
Welcome to our forums, and thanks for contributing to this popular thread. It’s awesome to hear from others who are in my favourite part of the world – wonderful New Zealand and Australia! So sorry to hear of your diagnosis of NSIP though. My friend’s Mom was also diagnosed with this, although in Canada, and she is feeling frustrated with the lack of knowledge from doctors about this as well. So sorry to hear that this the same experience in NZ as she is having. Has your pulmonologist referred you to a specialty lung center there? They might have more information about it for you, although I understand the specialized centers might not be closeby either so easier said than done. The mental uncertainties are also what cause me the most pain and frustration while living with this disease – and right now, are wrecking havoc in about every angle of my life right now unfortunately. I’m trying to manage, but Heavens it is tough when no one in person seems to “understand”. I’m so glad for these forums as well, and glad you’ve joined us!
Charlene.
-
-
I do belong to two local support groups here in NZ but am the only one in both that has something other than asthma and/or COPD.
-
Hi Ted,
Just a thought – does your pulmonolgist treat any other patients with IPF/NSIP? They may not attend the support group but I wonder if your doctor could obtain consent to put you in touch with other patients for some support? Just an idea I had, not sure if it was helpful for not.
Take care,
Charlene.-
Charlene, I suspect the doctor would be more likely to offer other patients Ted’s information than the other way around. That way they could make the contact without any problem with confidentiality. Or maybe Ted could ask the doctor if he could print up a handout that the doctor would leave in the waiting room for patients to pick up if they are interested. HIPPA is a real bear when it comes to making contacts between patients and doctors and other patients.
-
The flier is a great idea Karen! Or even just a business card that the doc could share with other patients that has Ted’s contact info on it if he’s open to sharing that.
-
The flier is a great idea Karen! Or even just a business card that the doc could share with other patients that has Ted’s contact info on it if he’s open to sharing that.
-
-
-
My name is Chuck , 66 yrs old , diagnosed 2 yrs ago April 2016 , live in Conewango Valley New York , no were we live there is no support group , you guys are it . Ofev 100 * two a day , the 150s almost killed me lol, anyways that me . Howdy
-
Hey Chuck,
Welcome again to the PF forums and thanks so much for connecting with us on this thread. It’s been a very popular topic that William has kindly started for us, and glad to know you’re finding our site helpful for you. Stay tuned – we’re actually going to be taking a look at an idea through this site, which will be to create a virtual support group via a video link for all of the folks like yourself who don’t have access to a support group and might want one. The idea is still in its infancy stages right now though, so no promises yet but we’re going to start exploring it and how many folks (if any) would be interested in something like that.
Thanks again for connecting with us — I was also diagnosed in April 2016 and am also using OFEV. Welcome!
Charlene.
-
-
Hi Chuck, the moderator for the Pulmonary Fibrosis News forum will return on Monday, and will answer any questions you have. Thank you for participating in the discussions, and we look forward to helping you as much as possible.
-
I live an hour south of Kansas City and 30 minutes from Jayhawk Country in Lawrence. I live in a small town called Pomona, like California, but different. :)I currently receive care in Olathe, KS. And I am not in a support group but would love to find one.
-
Hi Michelle,
Welcome again to our forums, so glad you’re here!
How lucky you are to live in a place that resembles California — I love the ocean, heat and (I think :)) I would love to reside in California, based on the assumed lifestyle of people living there. I’ve never been to Kansas City but actually worked with a few folks from there at a summer camp one year. Do you find your treatment facility is well-equipped and knowledgeable about IPF? Do they offer a support group through the center at all? We’re hoping to explore the option of a virtual support group on our page here , although it is just an idea we’re looking at right now so stay tuned. If it would be helpful for you, we’d love to have you join us!Cheers,
Charlene
-
-
I am 54 and live in Vero Beach, Florida. I am seen locally by a Pulmonologist but also go to Florida Hospital in Orlando. I just completed a week and a half of pre-transplant testing for double lung. I do attend pulmonary rehab twice a week locally but no support groups. Would love to find one close! I was diagnosed with IPF in March 2017 and have been on Esbriet for 3 months.
-
Hi Kimberly,
Thanks for joining the PF forums – welcome again, we’re glad you’re here!
We have a few members of the forums from Florida, so you might find someone who is not too far from you geographically. I bet where you live is beautiful – I always loved visiting Florida when I was little! Glad you have a local pulmonologist, and that your transplant center is in Orlando. When will you find out whether or not you’ve been accepted into the transplant program based on the tests you’ve done? Stay tuned re: the potential of an online support group through this site, we’re still collecting data at the moment. Hope the Esbriet is going alright for you, and not causing too many side effects.
Thanks again for writing, I look forward to getting to know you a bit more through the forums.
Kind regards,
Charlene.
-
-
To Charlene and everyone else in this group;
I’ve basically been AWOL from the group for several months and must apologize to you all. I was really surprised when I found my long time friend shared IPF; but alas, they didn’t properly diagnose his problem, until it was too late and he passed very shortly after his diagnosis. That hit me pretty hard, and then I went into a downward spiral, losing 35 lbs. in about 3 months. I was pretty scared, but didn’t give up. Then one of my Pulmonologist over at UTSW in Dallas suggested that I might have a Thyroid problem and should be checked out. Boy, did I have a problem; I had Hyperthyroidism deluxe, I was diagnosed as having Graves Disease. I was put on Thyroid Meds and things turned around really quick; but since the Graves Disease is an Autoimmune Disease, it is not something to keep around if you have IPF.
So, I’ve been involved in looking at options; basically my Thyroid needed to be taken out of the picture. That could be done via a Thyroidectomy or a Radioactive Iodine ablation of the Thyroid. The surgery would have been quicker; but meant 3 hours under a General Antiseptic, something not recommended for an 83 year old with other health issues. It seems my “afib” was the most worrisome; but none of the Doctors really wanted to possibly wake up my IPF either, so I’ve chosen the ablation. Just waiting for a date to have it done.
It doesn’t help that I’ve been fighting off problems with my hips and had to drop out of Pulmonary Rehab because of the pain in my hips. And then there is another matter that puzzles the Doctors and that is my voice change, preverbal sore throat and a “black tongue”. Following ablation, going to a ENT to hopefully sort out these matters. All in all, I feel “blessed”, my IPF has behaved very well, I’m on Esbriet and only using oxygen at night. I promise to try and do better so far as keeping the group informed.
Bill Sherman-
Hi Bill,
It is so nice to hear from you, thank you for reaching back out and providing us with this update. I’d been wondering how you were doing, hoping that all was going well for you. Sorry to hear of your recent struggles!
Really sorry to hear about the loss of your friend. That must have been so hard for you, and I find that when I lose someone I know from the same disease I have, it just amplifies the feelings of fear, grief, sadness, anger, etc. I can imagine you felt all these things when your friend passed away? My condolences to you and his family.
Interesting to read about your thyroid issue, that must be concerning for you! Gosh, what a rollercoaster you’ve been on. No one had explored the possible thyroid issue with you previously? I just was tested for my thyroid levels too and they are all in check, however, I do have very high thyroid antibodies, meaning I am at risk of hyper/hypo-thyroidism in the future. This doesn’t surprise me as both my Mom and sister are hypo-thyroid, they will just keep an eye on it now for me. I’m glad you have a plan now to get it taken care of that is hopefully the least invasive as possible for you. Keep us posted on the date, we’ll be thinking of you!
Hang in there and thanks for the update. We love periodically hearing from members of the forums, but certainly don’t add any stress or extra work by providing updates when you’re dealing with many other issues. I trust you’ll update us when you can. 🙂
Take good care of yourself Bill.
Warm regards,
Charlene.
-
-
Hi Everyone –
Live in Columbus, OH area. I am 66 years young. I receive care at The Ohio State University Hospital. I am not in a local support group. I know they have some available at OSU and probably around the area. I still do not yet have an actual diagnosis. The doctors feel it is either IPF or NSIP. I am scheduled for a VATS biopsy in early May. I started out doctoring with a different pulmonary doctor but switched to my current one at OSU. He wants me to get the best care possible and has been more persistent in getting answers. I am in the early stages so my doctor thinks I am an excellent candidate for the biopsy. Only symptom is I have a dry, chronic cough which has been going on for a few years now. I have been doctoring non-stop since September 2018 – primary care, allergist, ENT, pulmonary.
Marianne
-
Hello Marianne, thank you for sharing your story. I know your VATS will go perfectly. Best wishes Mark
-
I was diagnosed in 2016 but a 2011 CT scan report mentioned the start of lung disease.
In January 2017, I started going to the 9/11 WTC Clinic at Bellevue Hospital Manhattan, only 17 miles from my home on Staten Island, NY — but it takes an hour to an hour and a half to get there, if I drive or take public transportation. I have been very disappointed in the ‘care’.
That said in February I went to a new doctor at an ILD hospital, Mt Sinai National Jewish Health Respiratory Institute, a ’21 mile’ drive. I go back next month and hope I found the right doctor. I believe they have a support group there and may participate at some point, if I can coordinate my appointment on the same day as to when the support group meets.
In the mean time, I may try this …”PFF Voices is the Pulmonary Fibrosis Foundation’s telephone-based support group for pulmonary fibrosis patients, caregivers, family members and anyone else affected by this disease.” https://www.pulmonaryfibrosis.org/supportgroups/online
Has anyone ever called in???
-
Hi Lorraine,
I’ve not called into the telephone-based support group, but I’d be curious to hear from others who have and what their experience was with it. Kudos to you for looking into some support options for yourself and sharing the link with others who might need it. Thanks for doing that!
Curious to hear from others who have called into the link above, please share what your experience was.
Regards,
Charlene. -
Hi all –
This is an update to a prior post I made. I received a diagnosis of IPF on May 24, 2019. I am not on any medicine for IPF or oxygen. My pulmonary doctor prescribed Ofev. I am checking with doctor and private foundations to see if they can reduce my cost for Ofev. June 12 I go to Ohio State University Medical Center to begin pulmonary rehab – 3 times a week for 8 weeks. I know OSU has support groups that meet quarterly. I have not been to any of them yet.
Marianne
-
I live in Rhode Island, just outside of Providence. I was diagnosed just recently and have been seeing doctors (pulmonologist, rheumatologist) that are part of Brown University/Lifespan. This week they’ve arranged for me to see a pulmonologist who specializes in ILD. They are working as a team to determine what kind of autoimmune disorder might have triggered my PF. I’ve been impressed with their care and thoroughness. I believe there’s a support group that meets in their building, which I’m going to ask about this week.
-
Hello,
I was diagnosed with IPF in 9/18; after living with COPD/emphysema for some time; so a double whammy for me. I’m 65 years young, live in Indianapolis, receiving care from my wonderful pulmonologist, a cardiologist, pain doc (for previous chronic pain issues), and my primary care, all local in Indy. I’m into my third week of pulmonary rehab, as a prerequisite to a transplant. I do not know of a support group locally, so I come here.
Thank you!
Barbara
-
Hello Barbara, thank you for communicating to the forum.its good to hear you are in a pulmonary rehabilitation program and being evaluated for a transplant. I think you will find our members are from all over the globe in various stages of pulmonary fibrosis. There are those who have been transplanted with either a single lung or double lung transplant. I live in Ohio and have had a single lung transplant after suffering from ipf for about a year. I am 3 1/2 years post transplant and doing fine. Keep up the pulmonary rehabilitation, it helps a great deal with the surgery. The stronger you are heading into the surgery the better your outcome will be. I pasting a PF support group page. These are in Indiana. https://www.pulmonaryfibrosis.org/life-with-pf/find-medical-care?show=support.
there are also several transplant support groups in Indiana.
https://www.2ndwind.org/transplantation/support-groups/
Best wishes and thank you. Mark
-
Hi William and everyone, I live in Enterprise, OR. I was diagnosed with IPF 20 Dec 2017. My VA provider first saw something in an xray. She said it looked like scaring in the lungs. She sent me to a pulmonologist, through the Choice Program. The closest one was in Walla Walla, WA, about 110 miles away. The first of July 2018, I was put on on O2 for exercise and sleep at 2lpm. I started on Pirfenidone, the first of Aug 2018. The VA approved it with no questions. No side side effects. Even the sun hasn’t bothered me. The closest support group is in Portland, over 300 miles away. No pulmonary rehab close. Hope everyone is having the best day possible!
-
Hello Doug, I looked for support groups closer to you. Sadly, there is none. It’s too bad all patients don’t have easy access to support groups. I think you will find enough persons in this forum to fill the void. There are very knowledgeable and compassionate members here who are willing to help in any way they can. Thank you for engaging. Mark
-
-
Hi all, I live near Topeka, Kansas and of as yet, have not found a local support group. I’ve joined a couple online support groups through facebook, but would really like to find a local group. As for medications, I was on Ofev for about a year (was diagnosed March 2018….that was my birthday present…yay me…..) I had horrible side effects with the medications to the point I was afraid to leave my house. My Pulmonary doctor switched me to Esbriet a few months ago, and it’s made a world of difference. I’m no longer afraid to leave the house now! I recently found out that I’m extremely anemic and will be starting iron infusions on the 24th of this month. Also having a procedure on the 18th to make sure I have no internal bleeding which could be the cause of the anemia. I basically have no energy at all, I’m on 2l of oxygen at rest & 4-5 when up moving around, sometimes I dont think its quite enough, because of the anemia, but hopefully with the infusions I’ll get some if not all my energy back. I hate sitting at home alone all the time because I have no energy to go anywhere. Anyway, thanks for listening to my rant…lol Blessed Be….Tammy
-
Hello Tammy, sorry to hear that you are going through all of this adversity. You are allowed to rant. I hope the iron shots work. I also have auto-immune hemolytic anemia. I do know when my hemoglobin drops below 10. It is not a good feeling to feel weak and also suffer with a debilitating lung disease. I wish you well. please stay in touch. Mark
-
Hi @tammy-ansley,
Thanks for getting in touch with this group, I’m glad you found us! Support groups can be really beneficial so I’m glad you’re looking to find one and hopefully your search can be successful. I agree with you when you say how lonely this disease can be due to the lack of energy. Just a quick thought – have you looked at (or contacted) the Pulmonary Fibrosis Foundation’s website for support group locations? I know the Canadian PF Foundation lists support groups on their main website, I wonder if the PFF does? Just an idea 🙂
Talk to you soon,
Charlene.
-
-
@tammy-ansley, I am from Victoria,ks. It is a small town about 3 hours west of Topeka. You are the first person that I found on this site from Kansas, that has a lung disease.
-
Howdy , I live in Conewango Valley, it’s way in the southern tier of New York , this is the closest blog that I know of ,mean across it by accident ,, my nearest hospital is 20 miles away
-
Hello Chuck, I am very familiar with the area you live in. About 10 years ago I received a speeding ticket in one of those small towns on the way to visit my brother in Hudson, New York. I see the nearest support group you have is in Rochester. Best wishes. Thank you, Mark.
-
-
I go to my local pulmonologist which is 10 miles away in hays,ks. But my main pulmomologists that I really trust and feel comfortable with is at KU Medical Center in Kansas City, Kansas which is about 4 hours from where I live.
-
Hello Linda, thank you for commenting. It’s too bad you have such a long drive in order to get exceptional care. Best wishes, Mark.
-
-
Been living with IPF in the Western Cape, South Africa for the last 2.5 years and not aware of any support groups in the country. I see my pulmo every six months and my condition seems to have stabalized, but coughing a lot lately. I take Esbriet (Pirfenex from India).
-
Im a Chilean Canadian living in southern Chile, pretty rainy and humid here, some how seems to help me dealing with IPF since 2012, no oxigen yet thanks God.
-
Hi everyone
I live in Auckland NZ and have been on Esbriet since the start of the year and was diagnosed with IPF last August . Have had no problems as of yet except fatigue and the inevitable cough.
I would like to know if there is a support group close to me as it would be great to connect with others close by.
-
Hello Sheila, thank you for commenting. It is too bad the area you live does not offer support groups. If you scroll up in this section there is a gentleman from New Zealand who comments on July 31, 2018 and co-moderator Charlene Marshall replies on August 1, 2018. Charlene mentions lung speciality centers. If you are treated by one of these centers maybe an option would be to communicate with your physician or social worker about the need for a support group to be formed. Sheila thank you for sharing and best wishes. Please keep us updated. Mark
-
-
Hello Cindy from Three Rivers Michigan. I am not aware of any support groups here. I was diagnosed with IPF in June, no O2, started on OFEV about 3 weeks ago. I receive treatment at Cleveland Clinic but intend to switch to University of Mich soon. I went to Cleveland Clinic with a cough. I thought it was related to allergies and it escalated to this. My mother had Hypersensitivity Pneumonitis which is a sister disease to IPF, so I wanted to be thoroughly checked. This site has helped so much!!
-
Hello Cindy, I did a quick search of support groups in your area. The PF support groups in Michigan are centered around Detroit. I was hoping south bend would have one for you but unfortunately it is not the case. If you are able, center your next appointment around a support group meeting for the respective hospital you will be at. Thank you for commenting and best wishes, Mark.
-
Log in to reply.