Where do you live, receive care, and are you in a local support group?

[cooper-p-abrams-iii]

I live in Utah (not Mormon).  Travel 85 miles to SLC VA .   IPF since Feb.  No group support.   On oxygen part of time and with any activity.  I  was taking prednizone but off now for 45 days.  Withdrawal  was roough. Not taking any other meds.   Hope you get along okay.

 

 

 

[Charlene Marshall]

Hi Cooper,

Thanks for getting in touch and sharing your information on this thread! Have your doctors suggested either of the FDA approved anti-fibrotic medications for you at all? I agree that the Prednisone can be less than pleasant and the withdrawal from it is not fun. Were you on it due to a flare up with your IPF, or in response to an illness you had? Hopefully you can stay off of it and you’re on the mend now! Thanks for connecting and I hope you continue to do alright also.

Warm regards,
Charlene.

[suzanne-r-brennan]

I live in Denver CO, am not a veteran and use National Jewish Health for my lung care. They are great so the person from Denver should make an appointment with them, if they haven’t already tried to do that.

I was diagnosed in January 2016 based on a dry cough that wasn’t going away. My primary doctor listened to my lungs, mentioned “Velcro crackles” and sent me immediately to have xrays of both lungs and then a HRCT scan. Unlike a lot of others, I was diagnosed very quickly. Had some tests done to rule out other things like asbestosis (my Father died from that and I had a lot of exposure as a child), autoimmune diseases, and a host of other things, including a bronchoscopy but not a lung biopsy. I also have “silent” GERD so have done a few things to help with that, such as adding a wedge under my mattress to elevate me a bit.

I am on Esbriet since September 2018; started on OFEV, took it for over a year but had too many side effects. I have had virtually no issues with Esbriet except more fatigue in the beginning. I am also now in the Galapagos trial but don’t know if I am taking the drug or a placebo. No difference in symptoms but my doctor said that there aren’t very many, if any, side effects so you can’t use that to try and guess your status!

I am stable, exercise in some fashion every day and feel very good!

[Charlene Marshall]

Hi Suzanne,

Thanks so much for contributing to this topic thread and letting us know a bit more about your experiences with this disease. I have heard good things about National Jewish Health, so I am glad that you are happy with your care there.

I’m really glad to hear you are tolerating the Esbriet okay, that is wonderful to hear as I know so many people struggle with the anti-fibrotic medications for this disease. Good for you for exercising on a regular basis, I know that isn’t easy but is very important as Mark has pointed out in his experience. You  may have shared this already, so forgive me if I’ve forgotten, but will you be considered for transplant in future?

Take care,
charlene.

 

[adele-friedman]

I live in the Olympia, WA area and see a local pulmonologist here for PFTs, six minute walk tests and follow up appointments. I also go to the ILD Center at OHSU in Portland, OR, a two hour drive. (Since I am unable to drive at night, this time of year, I keep Google on speed dial for sunrise and sunset times in this northern latitude for setting appointments!)

At OHSU, an ILD specialty center, I see a rheumatologist and pulmonologist and it was the rheumatologist who based on my data, including extensive bloodwork, and HRCT, diagnosed me with Sjogren’s Syndrome which is probably the cause of my PF.  It’s tricky diagnoses like these that make going to an ILD center a good idea. At least in the beginning. Local pulmonologists may not have the time and expertise to look for autoimmune diseases as primary causes of ILDs, or other less common scenarios. There is a lot more “I” PF diagnosed outside of specialty centers that really is NOT idiopathic if the right eyes look at the situation. Therapy is often different. I am on mycophenolate to tamp down my immune system, rather than Ofev or Esbriet.

My sole support is the online forums on Facebook, which brought me here and brings me good webinars about lung disease.

 

[shelly-k-mathis]

I’m a caregiver for my husband who has RA-ILD.  We live in Dallas, Tx and are part of a large and very active PF support group called PF Warriors. We hold several meetings each month virtually on zoom.  We have some of the top pulmonologists in the nation making presentations to our group and the speakers will take questions from members.  We started in Dallas and now have members in all 50 states and 14 foreign countries!  Please join us at http://www.pfwarriors.com for information, videos, guides.  Also join our Facebook page at PF Warriors for energetic discussions with other pf patients.

[william-sherman]

Thanks Cooper for your response; so now, a pin goes in our imaginary map for Utah. Before I forget, “we thank you for your service” and certainly hope that the VA “bellies up to the bar” and puts you on one of the FDA approved medications that have shown to slow the progression of IPF. Those two meds are FDA approved Ofev (nintedanib) and Esbriet (pirfenidone). Both of these meds are quite costly (as much as $96,000 per year), so you can kind of see why they are slow to prescribe. Keep pushing, you know it is the squeaking wheel that gets the attention. Good Luck and keep us posted. William Sherman

[Charlene Marshall]

Very well said William, thank you for your support to others and the time and thoughtfulness in your replies 🙂

Charlene.

[Charlene Marshall]

Hi William,

Thanks so much for starting this thread, it certainly is a good idea and I’m hopeful that people will contribute. Wouldn’t it be nice to connect with someone who is geographically not too far away from you or even in the same treatment facility? The Canadian Pulmonary Fibrosis Foundation (CPFF) has compiled this information for Canadians, and as a result, even some support groups/networks have been established based on areas where many patients reside. It was pretty cool to see!

I’m so glad you are happy with your medical team at your local treatment facility, that is so important and yes, I’ve heard about lots about the amazing care and facilities that Dallas has as well.

Some of the answers to your questions about geographical areas with IPF more prevalent might be available on the Pulmonary Fibrosis Foundation (PFF) website, although I’m not sure. I know studies have been conducted on different environmental aspects (ie. sea level, climate etc) and how they pertain to PF, but I don’t know where that data went or what it was collated for. Do you currently participate in the support group William? This is so important and I hope others do in their local centres too 🙂

Thanks for sharing and starting this thread!
Take care,
Charlene.

[james-pillows]

I am not in a local support group as I cannot find one close by. I live in Lufkin, Tx and my Dr. is in Houston which I do not mind the drive. I really like my Dr. I did have one in Lufkin but was unhappy with him and changed . The one in Houston helped me get on OFEV. I am blessed that I am still able to live by myself and do necessary things. I am 85 years young and don’t know how long I can do this. I stay active as I play dobro guitar , go to different churches and nursing homes. This week My pastor is holding a revival (5 nights) at a church about 85 miles away and I am going with him each night. I do get tired and am ready for bed when I get home but I love what I do. I feel maybe God gave me IPF for a reason and that reason was to reach a lot of people I would not otherwise. If I find a support group any where close I will start attending. Hope I didn’t ramble on to much. Thank you

[Charlene Marshall]

Hi James,

Thanks for getting in touch with us regarding this thread, and I’m curious to hear from others on the forum as their might be someone not far from where you live. That would be a neat find on these forums, wouldn’t it? Does the centre in Houston have any groups or support connections offered there? I think they are a big centre for respiratory diseases/PF, from what I’ve heard anyways. I definitely could be wrong though! 🙂

So glad you’re happy with your new doctor, this is extremely important throughout this journey. Kudos to you as well for keeping up with the schedule you outlined for us! When you go to the churches and nursing homes you mentioned, are you playing your guitar for the populations there? If so, what a great idea!

You did not ramble on at all, I so appreciate hearing your story and the perspective that maybe you were diagnosed with IPF for a reason. Some days I am strong enough to think this way, and other days I’m not so I think I could learn from your lesson. Thank you for sharing and know that until you find a support group, and even after that, you’re among friends here who really do “get it”. Feel free to reach out any time!

Kind regards,
Charlene.

[ron-leeaspenwebs-com]

James,

You are so lucky to have the desire and talent to play the dobro and enjoy playing others. I lost my sense of rhythm due to a stroke before I was able to learn an instrument but I definitely enjoy listening and dobro or resonator are my favorites to listen to. They really add “color” to the sound of a band.

I can say that music is what has kept me alive since 2011 when my wife passed away. Neighbors introduced me to an acoustic society that had monthly concerts featuring local artists as well as the many touring artists. Our society is located in a small plains town in eastern Colorado. For several years I literally managed the concerts, booking acts, herding volunteers, etc. It was so much fun. That was in a little town east of Colorado Springs.

I moved to Boise, Idaho in 2019 and haven’t found a similar venue nearby. I miss the music and the people. It seems the ones involved in traditional country and folk are the “salt of the land.” Maybe when Covid is out of the way I can look around for similar groups. Meanwhile, I’ll just have to envy you.

You are right, God has us where we are for His reasons. He can dish us dessert or dish out chores. I’m good for either.

Ron

[gordon-b-sandmire]

Two thumbs up to James Pillows. Eep it up as long as you can.

[jay-turbes-s]

Wow!  Mr. Sherman, I’d say you’re in the right place in Ben Wheeler based on what you’re getting. My charge here in Denver under Kaiser “care” is summoned to her pulmonologist once a year, the same for the GP/NP also for her “wellness” (ahem) exam, and was not offered rehab until her IFP had “progressed” to where she was two years into things and determined it was of little or no value. She gets no other support or interest from Kaiser/CO.

As for a support group, there are a couple but she doesn’t travel well and also takes little solace in the idea of immersing herself any deeper in the misery so has foregone that.

I think we should have moved to Ben Wheeler!

J. in CO

[william-sherman]

James, Thanks for your reply and NO, it was not too long and rambling. We just thank you for sharing and for giving us some insight into your life with IPF. It sounds like you and God are in control.

Would love to hear you play your dobro guitar. If you are ever playing up close to Tyler, let me know and we will try to be there. Also, if you don’t mind, could you share a little about your treatment and meds; it just might give someone a vital clue. How long ago were you diagnosed?

As to a Support Group in your area, haven’t come across one yet, but who knows. Locally, in the Tyler area, I’ve been very surprised that I have not found a support group. One would think that with all the doctors and therapy available in the area, that we’d have a strong support group. Well, we just may have to see about starting one.

Janes, hang in there and keep on strumming for the Lord.

[william-sherman]

Jay,
Thanks for responding to this broad based question about living with IPF. Your reply made me realize that I did not reach out to “caregivers” the way I should have, and I sincerely apologize. My wife is my caregiver and I don’t know what I’d do without her constant help and guidance. Again, thank you for your response on behalf of your IPF patient.

I’m really sorry that everyone can not have the same level of support that I have basically fallen into. Before locating in Ben Wheeler, we did look into the matter of doctors and hospitals, as we knew we were growing older (we are both in our 80s) and knew that at some point we might need them. Well, I hate to admit it but, I’ve been transported twice already (for other problems) and now that I have been diagnosed with IPF, am really having to lean heavily on that support network. Incidentally, we sure don’t have a closed door policy, and there is plenty of room for new Texans. Bill

[Charlene Marshall]

Hi Bill,

Thanks again for such a thoughtful reply!
Quick question for you: how did you and your wife go about investigating different healthcare options, and then settle on which ones to choose? Just curious for people who might be considering a move and/or a change in their healthcare team and those who might not know where to start in that investigation.

Was it a matter of going online and looking at speciality area(s) of that hospital, or speaking with people in your network who may have received or receive care there? Just curious about how you went about this. I’m so glad you did as it seems as though you’re happy with your choice and care at Ben Wheeler. This is great!

Take good care,
Charlene.

[Charlene Marshall]

Love this reply to James, William, thank you so much for the role you’re playing in our forum community 🙂

As for starting a support group, if you ever want to bounce ideas about this around, I am happy to chat with you. I actually did part of my Masters research around this, not specifically about IPF support groups but support groups for young adults with chronic illnesses. I have since started a few support groups locally too. None for IPF/PF as they had been established already, and long before I was diagnosed, but for other support groups and I’m happy to chat with you if starting a support group in your area is something you’d want to embark on. Happy to lend an ear too to your ideas! 🙂

Kindest regards, and thank you for being part of our forums!
Charlene.

[Charlene Marshall]

Hi Jay,

I know your response was to William, however, I just wanted to chime in as I was so sorry to read about your being displeased with the doctor in Denver. Are there any other pulmonologists that you could be referred to? Its so important to be comfortable with your physician(s). Just something I didn’t know if you had explored or not yet, or were interested in doing so? Maybe not, I know not everyone wants to embark on that challenge, which I know it can be at times.

Sending you best wishes!
Charlene.

[ken-monroe]

I live in Vero Beach FL (southeast coast of FL).  I receive my IPF care at Mayo Clinic Jacksonville, 3 hours (211 miles) away.  I am not in any local support group; I don’t know that there are any.  Not yet on any medications or oxygen.

 

[Charlene Marshall]

Hi Ken,

Thank you so much for getting in touch regarding this topic thread. How do you like your care through Mayo? I would imagine they are among the “best of the best” and likely very knowledgeable based on their reputation. Would you agree with this? How long ago were you diagnosed with IPF if I may ask (forgive me if I have asked this before, and don’t recall…) ?

3 hours is a long drive to a treatment center, I sure hope you don’t have to go too often.

I would imagine there are support groups through Mayo, just due to the patient populations they might be treating for IPF/PF or even various interstitial lung diseases (ILDs). If you have a social worker or case manager on your team, they might know of a support group and be a good place to start in terms of seeking one out (if you’re interested of course). Thanks for getting in touch and I hope you’ve been keeping well!

Kind regards,
Charlene.

[steve-dragoo]

Howdy – been to TX a number of times closest to you was Johnson City and maybe Shreveport LA. Was diagnosed abut 3 months ago but I believe I may have started having symptoms in late 2016 in Manila.  Using VA Hospital system in Salem, VA – live in Roanoke.  VA is a little similar to a HMO – you have to ask but you do get. Currently have a terrific pulmonologist and she referred me to an outside pulmonary PT clinic – they are researching a recent white paper about Metformin for me and will post what I learn when they get the info.  Not in a group other than my church and a group at VA called M.O.V.E. Try to stay active as much as you can and change your diet – fresh, raw, organic. Currently on my own as my wife is in the Philippines so that’s not a lot of fun as I had to break the news to her via Skype.  Diagnosis gives a new sense of urgency…

[Charlene Marshall]

Thanks for sharing Steve, although so sorry to hear you had to tell your wife via Skype. That must have been tough? How long is your wife in the Philippines for?

I was at a conference this past week and while it was for work, one of the presenters was an incredible pioneer in the area of mindfulness and brain health so one of the things he talked about was our diets (in addition to many other things). I hope to make a few more forum posts about good food for our brain, including raw, organic and fresh options like you said. Thank you for reminding me to do this!

Please do let me/us know what your doctor says about the metformin piece. We haven’t had a lot of forum members confirm their doctors are endorsing this, more actually discouraging it than not unfortunately. Always curious to hear from others though too!

Take good care and thank you for connecting with us!

Kind regards,
Charlene

[kathil]

I know it’s off topic, but I’d love to hear more about what you learned at your conference on food choices for health!

[michael-lamkin]

I live in Surprise AZ and receive my care through the VA. I currently am not involved with a local support group. I was just recently diagnosed and hadn’t given a local support group much thought but will look into the matter.

I currently use the VA clinic in Phoenix and have done so for the past 2.5 years. After finally getting over bout with Valley Fever which lasted 18 months I was then diagnosed with IPF. I think the pulmonary doctors New as far back as a year ago that I had the IPF but put off telling me until the Valley Fever went dormant. Seems I see a different “Fellow” (doctor in training to be a pulmonary doctor) every time I go so sometimes it seems there is no real continuity of care but that’s just my feeling which may or mat not be valid.

Michael

[Charlene Marshall]

Hi Michael,

Thanks for getting in touch and contributing to this thread. Depending on how you’re feeling about your diagnosis (if it is just recent), a support group can be both a good and bad thing, just something to keep in mind. I thought I wanted a support group right away when I was diagnosed, but it was a very confusing, scary and frustrating time for me and I realized through trial and error that I wasn’t ready for one until living with IPF for awhile. You know yourself best of course, just thought I’d share my own experience(s) as something for you to be aware of 🙂

Continuity of care is important, I think you’re onto something especially when it comes to monitoring the progression of your disease. Are these pulmonary fellows supervised by a physician that oversees them? This is how it works in Canada so I hope it is the same there.

I’ve never heard of Valley Fever, although what a long time for an illness to last – 18 months – so sorry to hear of this! Is it similar to Scarlet fever? Did they make any linkages to your IPF diagnosis from this? Glad you’re on the mend, although I wish you weren’t diagnosed with IPF.

Best wishes,
Charlene.

[william-sherman]

As the IPF Patients and caregivers have responded to my original post, it has become apparent that I should have asked that each of you specify whether or not you are a Veteran, and if you utilize the VA health care system. Most of the responders have already given this info in telling their story and we appreciate your participation in this forum, and definitely appreciate your Service.

[Charlene Marshall]

Well said Bill!
As a Canadian, I wasn’t sure what VA healthcare was so thank you for clarifying. 🙂
Charlene.

[michael-lamkin]

Hi Charlene

To answer your question regarding Valley Fever, it is a fungal disease which is contracted by breathing in the fungus when it is airborne. In the U.S. the fungus is prevalent in the southwestern states namely Arizona, Calif, Texas and New Mexico. I believe it’s also found in the air in some parts of South America. The fungus resides in the soil but becomes airborne either by disturbing the soil or by dust storms. Without going into a lot of detail here the best way to become familiar with the disease would be to simply google “Valley Fever”. I will say that it is a lung disease and can cause extensive scarring of the lungs and at the same time has the capability to spread to other parts of the body, via the blood, such as the heart, spine, liver and brain, only to name a few. Most people who contract the disease have only mild symptoms which can be similar to the flu while others are seriously affected but may suffer years later with the full blown disease. Like IPF, there is no cure so the best scenario is that, with treatment, having it go dormant with the real possibility that it may return anytime sometimes 25 or 30 years later. The disease is very debilitating and can sometimes be fatal. The symptoms are very similar to other lung diseases such as pneumonia and can include a cough, weight loss, fatigue and loss of appetite.  The pulmonary doctor didn’t say there was a a direct correlation between  Valley Fever and IPF, I’m guessing that the lung tissue scarring caused by the Valley Fever could certainly be a factor. The disease is usually diagnosed by blood testing or biopsy and, although difficult to distinguish from other lung diseases such as cancer, can also be evident on an xray or CT scan. Sorry if I seemed to get carried away with this.

 

 

[Charlene Marshall]

Hi Michael,

Thank you so much for your thoughtful reply to all my questions. I hope you’re enjoying your weekend so far!

Wow, I’d never heard of Valley Fever before and wonder if it is a primarily US and/or South American thing? We have Scarlet Fever here and I wonder if it is something similar, although it is very rarely heard of anymore since being mostly eradicated many years ago. I wonder if this is part of the reason many respiratory healthcare centers and specialists warn those of us living with lung diseases about the sand storms, mixed with the high humidity… perhaps it is because it could stir up the fungus causing these ‘fevers’? Not sure, just something I am thinking about “out loud” 🙂

You didn’t get carried away at all, I was really interested in learning more about this as it wasn’t something I’d ever heard of before. I’ll look into it more, just out of pure curiosity. I wonder if any others on our forum have been exposed to this, or experienced it? I’ll leave the question here as I know we have people on our forums from the states you mentioned in the US.

Glad you’re on the mend, and thank you for sharing. Wishing you nothing but the best!
Warm regards,
Charlene.

[william-sherman]

When I started this thread, I felt that gathering information could lead to IPF/PF people coming together. Well, in my case, it really did! Yesterday evening the phone rang and to my surprise, it was a friend whom we knew as “a dedicated daughter/caregiver” to a couple whom we had met via our participation in the Volunteer Fire Department. (VFD). He was Asst. Chief and I was just a Fireman, but we worked together, and enjoyed our work with the Department. Our wives were heavily involved in the Women’s Auxiliary, and became close friends.

Then, it seemed like the bottom had fallen in; within a year, the Chief’s wife suffered 2 dehabitaliting strokes that left her in need of constant care; and then it was the Chief’ turn, he had several heart attacks in a row and now needs care. Thus an awful lot was thrust onto their daughter/caregiver in a very short time; and she has handled it well. The Chief had been extremely short of breath (SOB) and on Oxygen since his heart attacks. Things continued to get worse and after a change in doctors, his problem has finally been diagnosed as IPF/PF.

So, while my goal was to bring people together into hopefully a support group, I never dreamed it would be a friend of mine, whose home is about 4 miles away. Well, I guess we have a start of a IPF/PF Support Group; so if anyone is close to the Tyler Texas area, please reply through this site, or email me at [email protected]

[Charlene Marshall]

Hi William,

What an awesome story – thank you for sharing and brightening my day! Although I am of course sad for the burden that the daughter/caregiver now has to carry for her parents’ health, I am glad that she has a connect and two familiar faces (you and your wife) to navigate her Dad’s diagnosis with. She is very lucky to have you both and I am sure it means so much to her.

I think what you did here (ie. starting this forum) was very wise, and I know in addition to myself, that others certainly appreciate your efforts as well. I will keep an “ear” out for anyone I come into contact with, either via our forums or the responses to my columns and let them know to get in touch with you if they are in the area. Sounds like an informal support group even for the 4 of you might be helpful! Please let me know if ever I can help, or if you have the capacity to have people chime in via Skype or live video … some people might be interested in this 🙂

Kudos to everything you’re doing, and thank you.
Charlene.

[rick-weldon]

I live in Des Moines, IA. I have a local pulmonologist but I am being evaluated at the Univ of Iowa for a double lung transplant. U of I is about 115 miles away. I have not decided yet if I will go thru with the transplant. I am at 6 lpm resting and 15 lpm with exertion.

[Charlene Marshall]

Hi Rick,

Thanks for getting in touch with us and sharing a bit of your experience. The transplant evaluation process can certainly be overwhelming, and even daunting before it begins. Is there anything we can help with in terms of your thought process around whether or not to proceed with transplant? It is a very personal decision of course, and I respect that. The Lung Transplant Foundation is a really good resource, and they actually match you with a “mentor” who has been through the process before, if you’re interested in speaking with someone about the real experience of it (not the doctors’ assumptions, booklet information etc). I can connect you with their Executive Director as I’ve been in touch with her via this site to learn more information if you’re interested? Of course, it is entirely upto you.

Take good care and let us know if there is anything we can do to be of support. Thinking of you!
Charlene.

[piet-potgieter]

I live on a farm near Paarl which is near Cape Town in South Africa. Although I was diagnosed more than 18 months ago, I do not know of a support group near me. Please make contact if there are other sufferers near me.

[Charlene Marshall]

Hi Piet,

Thanks for connecting with us and welcome to the PF Forums!

Off the top of my head, I can’t think of a support group that would be local for you but I will keep an eye and ear out if I connect with anyone. Would this be information that your local pulmonologist might be aware of, if one exists through the treatment center?

I know it isn’t the same, but please know you’re welcome to ask any questions and/or connect here any time. You’re truly among people who “get it” in our forums.

Take care,
Charlene.

[william-sherman]

Piet,
So sorry for your illness and hope you can receive the medical support needed to make your life as fulfilling as possible. Are you taking either of the meds that are approved in the US/FDA to slow the progression of the disease. Here in the USA, our access to meds is controlled by our FDA approval process, which runs the cost of meds in the USA out of sight. The same med is often available abroad at a far lesser cost.

I can somewhat empathise with your remote location and the ability to reach out to others, as I also live on a small farm (51ac), which my daughter tends. Our town Ben Wheeler has a population of less than 300 people; but I’m really fortunate to have excellent medical facilities about 40 miles away; but had never even heard of IPF, until diagnosed a couple of months ago. —And guess what, I couldn’t find a Support Group without driving to Dallas (about 75 miles), so I started this Thread hoping to find someone. Well, guess what, I discovered that a really good friend, who lives only about 4 mi. from me, is also a victim of IPF. I’ve known he was sick and had been for some time; but I thought all his problems were heart related.

Well due to this thread we now have the start of IPF/PF Support Group in the Tyler area. Who knows, maybe we’ll find someone else in Paarl with your same problems and desire to find mutual support. I see that you are in the wine country; if you have an opportunity, have a glass for me. Good luck and it nothing else, this forum can be your support group.

[Charlene Marshall]

Well said William, and couldn’t agree more!

I am a licensed therapist, and actually just had an idea…
I wouldn’t ever want to blur my role of IPF patient and therapist here, but what if I asked BioNews (the company who runs all the  News sites (PF, CF, MS, etc)) if they have a platform for people to access via video link and we could have like a monthly meeting that way for people. What do you think about that? I would think the technology would be available to us, and if nothing else it could give us an opportunity to connect face to face, if people had video cameras on their laptop / smart phones. Maybe I conduct a poll using our polling tool to see if folks would be interested in this, and if there were enough interest, I could look into it a bit further? Just something I was thinking of which might give folks in remote areas an opportunity to participate in an informal support group. What do you think? This idea is in the infancy stage and I’d need to clear it with others before proceeding, but maybe we start with determining whether or not there would be enough interest?

Curious to hear your thoughts!
Charlene.

[ray-hastings]

Charlene, the VA now has a video setup where patients can communicate with their providers. A good many providers also have similar.

I live in North Carolina and my main provider is the Raleigh Durham VA. i Had a problem getting the VA pharmacy to provide Esbert when it was fist prescribed. We were living in Connecticut at the time and was dealing with the Hartford VA. A nurse practitioner that worked in the Pulmonary department took it on herself to talk to the Yale Pulmonary head of department. I met with her and she wrote a letter to the VA pharmacy and they approve my prescription and i Have been taking it for the past 4years. My advice to William is to arrange to see a Pulmonary specialist at the VA and work with them to get 7our medication. If thy do not have a program call the choice program which will allow you to see a non VA provider and the VA will pay for it. I currently see doctors at the VA,Duke and the UNC hospital. I am not aware of any support groups in my area.

[Charlene Marshall]

Hi Ray,

Thanks for getting in touch through this topic thread, it seems to be a popular one!

When you mention the video link Ray, do you mean patients have access to speaking to their healthcare providers (ie. doctors, specialists) via video link? That is really cool if so, and hopefully saves people the travel time or make speaking to their provider a little more personal by being able to see them on a video link vs. just making a phone call.

That is good advice to William re: connecting with the VA providers, if this is something he is eligible for and/or interested in connecting with. Glad your experience has been so positive – it sounds like that NP is really great at her job 🙂

Take care, and thanks again for writing!

Regards,
Charlene.

[william-sherman]

Ray, thanks for joining into our thread. —But you have given me a delima, where do we position your imaginary location pin; do we make it Conn, or VA, or NC? Just kidding, we’ll show you in NC, as that is likely the area you’d like to find a Support Group in. —A special thanks to you, Ray for taking the time to lead me through the VA/Esbriet maze and your advice to me about working with the VA is greatly appreciated. I have my long awaited Dallas-VA, Pulmonologist appointment coming up on Aug. 14, so will hopefully get things worked out.

Also, like Charlene, I’m really curious about the video conferencing you mentioned. Thanks again and let’s keep in touch via this thread.

[Charlene Marshall]

Keeping my fingers crossed for you Bill that the August 14th appointment goes well!
Thanks for such a thorough response, as always, to Ray.

 

Kindest regards,
Charlene.

[william-sherman]

Charlene I can’t believe it, but I failed to respond to your “polling” question; Yes, we should avail ourselves of all tools that help us gather informationto better understand this horrible disease, and to possibly lend a hand in finding a cure.

Caralene, in reviewing past posts, I discovered a commonality between you and the Daughter/Caregiver, taking care of a Retired Chief and his wife. For now, we’ll just call her “GA” until she officially joins the group. Well, it turns out that both of you are Licensed Therapist, so might have more incommon than the IPF/PF link.

Another concept that you brought up was video conferencing. Yes, I’m all for that, just don’t know how to go about it We had a Skype video call between London, Austin and Ben Wheeler, It was pretty good, but have no idea how many connections can be supported at one time. You would think there was something better and that we might be able to talk the Company into a freebie due to the use. Keep up the good work.

[Charlene Marshall]

Hi Bill,

Not too worry at all – I know sometimes staying on top of replies can be a bit difficult! Although, this is a great ‘problem’ to have as it means our forums are active and that folks are communicating with one another 🙂

I have a question into someone at BioNews about potentially creating a video platform for us to communicate in an online, virtual support group say once per month. Of course the conversation and even the idea is still in its infancy right now, but something I’m happy to explore as I think this would be particularly helpful to me and maybe to others then as well. I will keep you posted on the progress I make there and let you know the outcome.

That sounds cool, the linkage and commonalities that “GA” and I have. I do hope she joins this group when she has some time!

Stay tuned re: the video conferencing idea.
Chat soon and thank you for all your hard work on the forums too.

Regards,
Charlene.

[gary-r-denig]

I live in Lima, Ohio but receive my care at Ohio State University in Columbus, OH which is about 100 miles from my house. They have a support group which meets quarterly. I am taking pulmonary rehab at St Ritas Medical Center in Lina, Ohio and have suggested they start a support group for everyone going through the program. But that is not likely to happen. I am in my final testing for a lung transplant. Praying for all those affected with this horrific disease.

[Charlene Marshall]

Hi Gary,

Thanks so much for sharing your experiences with us and connecting on our forums! Will be praying that the remainder of your evaluation for transplant goes really well for you. Wouldn’t that be great, if the support group could be started for all the people attending pulmonary rehab with you? Do you attend the quarterly support groups, and do you find it helpful?

Thanks again for connecting and wishing you nothing but the very best.
Kind regards,
Charlene.

[william-sherman]

Gary, thanks for taking the time to join our thread. Sounds like you have access to some really good medical support and at least have a distant support group to reach out to. Your idea of getting a Support Group going via the St. Ritas Medical Center in Lima, sound like a good one. You may have to take the ball and run with it for a while; but when they (the Medical Center) realize that IPF/PF Patients span the globe and that this publication reaches far beyond the patients; and that it offers a low cost, high benefit exposure of their facilities and services offered, they will want in the game.

It is funny how things that appear in this thread, seem to reach way beyond (or way closer) than we’d expect them too. My posting turned up a old friend, located 4 miles away, who unknown to me, also has IPF. So now, we’ll start a local group for Tyler Texas, composed of 2 patients and 2 caregivers. Who knows, you may find others like yourself in the local area. —Good luck on your final testing for a lung transplant and we pray for you and all the others with such terrible illnesses.
Bill Sherman

[Charlene Marshall]

Thanks, as always, for sharing your wonderful insights Bill!

If you (or Gary!) want help with starting the support group, let me know as I’ve done so here with a number of different groups – not just IPF/PF related. I also wrote out a super long email and sent it to someone on tips to consider when starting a support group that I’d be happy to share with anyone who wants it. This is based on my own experience of starting a support group. If I can be of any assistance, please don’t hesitate to connect. My personal email is: [email protected]

Kind regards,
Charlene.

[charles-kocian]

My name is chuck and I live in Aurora Il. I receive care at Loyola Medical Center in Maywood Il. I attend the meetings of Edwards Hospital in Naperville Il. I am 72 years old and have IPF, I have been stable for the past 5 years and am not on Oxygen. I cannot take The medications for IPF because of reactions.

[Charlene Marshall]

Hi Charles,

Thanks for connecting with us via this thread, and for joining the forums. Glad to hear that your disease has remained stable for the past 5 years, and that you are finding a need for supplemental oxygen yet. That is wonderful to hear! Do you react to both Esbriet and OFEV? Sorry to hear that, I know of others who have also had reactions to these anti-fibrotic medications unfortunately.

Glad you’ve joined the forums, and thanks for sharing a bit about yourself 🙂

Charlene.

[david-pastor]

I live between Cleveland and Akron Ohio and receive excellent care at the VA hospital in Cleveland. I was diagnosed with IPF in 2016. In May I switched from Ofev to Esbriet. I just completed all the exams, tests and procedures and my records will be sent to the transplant team for evaluation. I retired last year and am still very active. I try to play golf once per week and participate in pulmonary rehab 2 to 3 times per week. I used supplementaloxygen when walking long distances and landscaping in the yard. My wife and I attend PF support group meetings quarterly at the Cleveland Clinic.

[Charlene Marshall]

Hi David,

Thanks for joining our PF forums and welcome! So glad you shared your experience(s) with us in this very popular thread of where everyone is from and how they’re doing. I’ve heard really good things about the support group at Cleveland Clinic actually so I do hope it has been beneficial for you – so great to hear that both you and your wife attend!

I’m curious to learn more about your switch from OFEV to Esbriet, as I am on OFEV and just wondering if there was a reason for this? Hopefully you weren’t too riddled with side effects from OFEV.

I’m also so glad that you’re able to still play golf and remain relatively active. I’ll be keeping my fingers crossed for you for a good outcome with the transplant evaluation! Looking forward to continuing to get to know you via this forum.

Warm regards,
Charlene.

[william-sherman]

Chuck,
It’s Great to have you join into our thread. It will be kind-of nice to have someone a little closer in age; not that 10 years is close. I’m sure that you have a lot that you could share about living with IPF. You indicated that you’ve been stable for 5 years but failed to mention when you were diagnosed with IPF We are hungry for information, so anything you are willing to share, will be greatly appreciated.
Bill Sherman

[william-sherman]

David, welcome to our thread. It sounds like you have had some very good support through the VA and I’m really happy for you. I’m still waiting for the Dallas VA to approve the Esbriet for me from a prescription written by a renowned private Pulmonologist on 06/27/2018. It is through sharing of information that we all benefit and will hopefully find the solution to this horrible disease. —Good luck on your evaluation, sure sounds like you are keeping the physical activity. Again, welcome to our thread, look forward to hearing more from you. Bill Sherman

[david-pastor]

Charlene,

Yes I was saddled with the side effects of Ofev and my pulmonologist suggested the change. So far so good!

[Charlene Marshall]

Hi David,

I’m really sorry to hear about the negative effects of OFEV, but really glad to hear the change to Esbriet has gone well for you so far. I’ll keep my fingers crossed that it stays that way and welcome again to our forums 🙂

Charlene.