[william-sherman]

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

[william-sherman]

Charlene, really sorry for your need of ER, let’s all hope you are better really fast. You’re our leader and not supposed to get sick. Hoping for the best and a speedy recovery. Keeping you in our thoughts and prayers.

I’m on my third day of Esbriet and no reaction at all Hopefully things will stay that way as I increase dosage. More on topic, I know what you mean about efforts to stay healthy; I’ve been hit with Thyroid problems and have been diagnosed as having Graves Disease. Plus I have a suspected cancer on my Thyroid. Having a biopsy sometime soon. So, so much for being proactive to prevent getting disease which might accelerate our IPF. But I must say the the medication they put me on for the Thyroid (Methimazole) has done wonders for my overall health. Almost forgot, also have afib. Despite it all,I’m feeling great!!!
Bill Sherman

[william-sherman]

Well, I guess that I’ll give Esbriet a go, got my first months supply about an hour ago. It has been quite an ordeal getting it. VA is stalling wanting a biopsy despite have two Pulmonologist from different cities saying I have IPF and two different High Resolution Scans, each done in a different facility and different city. But despite the VA being very difficult, my Pulmonologist went to bat for me and got Humana to reconsider their 2 denial letters and approved my prescription for Esbriet; but when the Humana Speciality Pharmacy called to ship my 30 day supply, they kind of casually mentioned a Co-Pay of $2,274.59 for the month’s supply. I said not to ship it as I could not afford it. They said that they were going to turn it over to their Financial Depart to see if they could help on the co-pay. A couple of days later they called again, only now there was “Zero” co-pay. I don’t know how, but it went away.

So tomorrow morning I finally start my Esbriet. I consider it about 90 days late, as the prescription was written back on June 27th. Wish me luck, it has been a long wait. Bill Sherman

[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

[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

[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.

[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.

[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.

[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]

[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.

[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

[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

[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.