Mayo Clinic Connect
Is there any one out there that has PF?
These comments are from back in 2016! Is there anyone out there that has recent treatments for IPF? What do you know about stem cell therapy as a relief of from this deteriorating health condition? Earl from Ohio
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On the contrary, @robinson. Recent comments to this discussion were made just a week ago. It is an active thread. Allow me to introduce you to a few members. Please meet @oliver22 @rayhastings @agullotti @kturchin @penlee @alancady @1000016352 @1jonwilcox @tula and @11241935
You might also be interested in these discussions:
– Stem cells for Pulmonary Fibrosis: https://connect.mayoclinic.org/discussion/stem-cells-for-pulmonary-fibrosis/
– IPF and Pulmonary Rehab: https://connect.mayoclinic.org/discussion/ipf-and-pulmonary-rehab/
Robinson, we look forward to getting to know you. When were you diagnosed with IPF? How are you doing at the moment?
I WOULD LIKE TO TALK TO PEOPLE THAT HAVE PULMONARY FIBROSIS
Hi Harry (@francko),
Welcome back to Connect. I moved your message to this existing discussion group where people are talking about plumonary fibrosis. Please meet a few of the members like @oliver22 @rayhastings @robinson @kturchin @penlee @alancady and @tula
Harry, we look forward to getting to know more about you. Have you recently been diagnosed with PF or have you been living with it for a while?
Harry I am new to this as well. I have had IPF for 15 months and have been taking OFEV. I just had a CT scan and it shows no advancement of the disease. I exercise regularly and am trying to reduce my weight as I am at 250 lbs. I am on oxygen when needed. The exercise is a key to maintaining as much endurance as you can. This includes weight training too. If I can answer any questions let me know and good luck.
Liked by Colleen Young, Connect Director
I have had pulmonary fibrosis sinc 2014 and unfortunately the VAclinic never let me know that I had it and it has no real treatment but to have a lung transplant. The clinic is the Chest Med clinic in Oklahoma City. I finally got a call from someone from the Chest Med and he left a message that I am keeping it as proof that they wanted me to come in to talk.with the chief Pulmonologist and some un named person to explained and apologize to me for dropping the ball on my care. But now I can’t get them to come to the phone and that is making mad again enough to talk to that attorney that is out east and loves these cases. I am giving them a week to get back to me and tell me what is going on!!!!!
Greetings Alan:I can relate to the frustration. I have two questions1) Can you walk outside every day, or do you have a breathing exercise program that you like and will do several times a day?
(This practice helps me live a great quality of life)
2) Can you physically “show up” to the VA office? Are you within driving distance? Would this be more effective for you, and bring faster results for you, than an attorney ?
Could you drive to the VA this week! I have done this when I felt I had breathing challenges and I was seen without an appointment.
My grandma told me “Showing up is 50% of life and helps us win our battles”.
Keep connected, ok?
Thank you for bravely stepping up to talk about your challenges.I commend you. It takes a team to win these lung health issues.
I don’t just love your exercise routine…i commend your decision to do your exercise program! You go!
I am so proud of you. I do believe exercise, diet and sleep is a huge part of my 10 year survival! Not to mention the positive effects of my overall health! Thank you for sharing, Bravo to you, keep up the remarkable work!!!!
Well, I saw my pulmonologist and took the CD of my CScan and the report, listing mild pulmonary fibrosis. The pulmonologist said not to be concerned with the results of the scan and that it was from scarring from repeated infections. I’m still concerned! Any suggestions? Am I making a mountain out of a molehill?
My mom has been diagnosed with pulamonary fibrosis and lupus. At this time she is on oxygen. I’m trying to understand what the disease is and how it affects the body/organs.
get a second option’ that is like saying you are a little pregnant pulmonary fibrosis is a very serous condition
I have good movements at this time. I was on 24 hour oxygen, but I am still on it except when I get on my computer where the room is small.
I have lost over 60 pounds starting before I knew anything was wrong. I was under the care the Oklahoma City at the time for something totally different than pulmonary fibrosis.the Radiologist found, along with several other things. Just to touch on the top of what they did at Chest Med on me between 2014 and 2017. I had a total of three CT scans and followed with three bronchoscope biopsies. The las one was benign the first two were not usable. After my last biopsy the attending pulmonologist still wanted to crack my chest “just a little” and I was now wondering if they could ever finish on me. My wife and I went to records and had copies of all my records from 2007.
It is whenI read them that I found out that I had Fibrosis of my lungs in an early stage. They didn’t tell me a thing. Next from CT #2 my pulmonary fibrosis had gotten worse. Again on CT #3 my pulmonary fibrosis was again worse. I had not yet figured exactly how serious that diagnosis was. I looked it up and found out that it was a lot more serious than I had thought it to be. After I looked it up, I made an appointment with a private Pulmonologist to verify the diagnosis from new CT scan My primary care MD gave me for the referral. My pulseOx was in the lower 80’s with minimal exercise (walking). He had me put on oxygen that day.
The still hadn’t contacted me. Then about 2 1/2 weeks agoI had a call and he left me a message that said that had heard about my non diagnosis of the P. F. and wanted to say something went wrong and they had dropped the all. I called back and we tried to set up an appointment to have the chief Pulmonologist talk with me. There would be someone else there but I could not hear well enough to understand.before we tried to set a meeting up for November 8 ,this Friday, but since then no one has called me again to confirm or reschedule the meeting. I left several voicemails for Jerimy Wilson it he just didn’t bother to call me back. I already don’t trust the VA because of the way they treated and are still treating me. There was one young man hat scheduled for Chest Med and he walked to where Jerimy Wilson should be. Bu no information except they still want me to schedule another CT scan for that big deal biopsy. But I declined today. This was done while I with Aaron wa’s help were trying to figure out what the heck was going on. He will call me tomorrow. But I still still have the message recording for evidence if the now have to again screw me over. They may be hoping that I die before anything has to be done.
This a long post but I had a lot to say.
I have been chasing down some places & doctors that are doing Stem Cell Therapy and there is a Dr. Kenneth Carle that has performed this procedure on his father and father-in-law fairly recently providing these people with improved health. He works through St. Joseph’s Hospital in Towson, MD. This is a new treatment in the US and is not approved yet by FDA so there is no insurance coverage. The cost for this procedure from the 3 or 4 places I have found from FL, CA, and now MD runs from about $8K – $10K. Dr. Carle involves 2 to 3 months and at least 2 procedures. I’m definitely considering it as there doesn’t seem to any big down side for my health, just a loss of $.
I have been diagnosed with IPF earlier this year. My birth year is 1938, no oxygen yet and I stay pretty active. What did you want to talk about?
Good for you to do your research, Slwhetstone. Here is some preliminary reading:
Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/symptoms-causes/syc-20353690
Pulmonary Fibrosis Foundation http://www.pulmonaryfibrosis.org/life-with-pf/about-pf
What websites does everyone use when searching for info about PF?
Liked by Linda, alumna mentor
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