Mayo Clinic Connect
Is there any one out there that has PF?
I'd like to introduce you to newest member of the moderating team, @ethanmcconkey. Some of you have already seen Ethan in the Lung Health group connecting new members with long-standing members. As with all the moderators, Ethan will be in the background, keeping Connect welcoming, safe and inclusive. Learn more about why and how we moderate: https://connect.mayoclinic.org/page/about-connect/tab/moderators/
As the activity and discussions related to pulmonary fibrosis (PF) grow, we plan to open a group dedicated to PF. Ethan will be helping me with that.
In the meantime, there are few members we haven't heard from for a while.
@francko, how are you doing? Did you find a portable oxygen machine that works for you?
Also, @penlee have you found strategies to cope with the ongoing fatigue? Does the cooler weather help?
@keira were you able to get that chronic cough under control? What helped?
Let's help Ethan get to know you — the members of this group. Post an update, tell the group a little about you and how you're doing.
Greetings all, as you asked I do much better energy wise with the cool fall weather. It is beautiful where I live in Oregon. The poor air quality/smoke in August and September bothered me a lot, though I stayed inside my home on the bad (moderate and above). My latest new pulmonologist feels I have reactive airway disease and need to use the rescue inhaler. It seems to help sometimes. I am still trying to figure out when to take those puffs. Pulmonary fibrosis is a balancing act of activity, food intake and medications. Note: I am having difficulty getting mycophenalate ( generic of cell Celcept). Anyone else? Counting my blessings.
Liked by Colleen Young, Connect Director
I would like to get more information on both potential stem cell treatment and new medications for IPF.
I was diagnosed Feb/March 2018. Started Esbriet about two months latter. Been doing P Rehab for the last 4 months. Been on O2 at night sinceJune 2018. Just started using it during the day on an as needed basis. Had a Sleep Study last week and am waiting to meet with my Pulmonologist next week.
Feels like I and getting worst – breathing is more difficult. No medications for IPF other that Esbriet,Provertil Inhaler and O2. Seems like Doc follows his old routine but no new meds, treatment or anything else that could help.
Seasonal allergies seem to make things worse. I live alone with my companion dog. Planning on selling my house and moving somewhere there are people aground. I am 74 and really do not like all the stress in my life.
I do. Diagnosed March 2018. Currently taking Esbriet, going to Pulmonary rehabilitation 2 days a week. Using 02 while sleeping and as needed during the day.
Can not physically exert myself without getting out of breath. No problem when resting. Life is getting more difficult each month. I live alone with my dog. Can not take her for too many walks, difficult grocery shopping and cleaning the house.
Very depressing, no cure ir hope. Looking for stem cell trestment or new medications to.
Liked by cognac
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Hi Ethan…welcome aboard!
I do have a quick question for the group ….I flew last Thursday for the fist time in 6 years since my disability. Prior to that I have flown over a 1,000,000 miles.
I have an Oxus POC that took with me. While in flight I checked my o2 several times getting readings from 61-75% , my usual readings are 88-92% . I wonder if the purity of the o2 in an aircraft might be slightly less than normal causing the concentrator to not produce as good? Plus I think I had the begging on a flare.
I'm heading back Monday and its a 2 hour flight so not too long.
Any and all feedback is greatly appreciated.
wba3721 You sound exactly like me. All I can say is I understand. I've been like this since 2014. I'm not taking Esbriet or Ofev because I fear the side effects, plus I understand it's very expensive. Nor am I going to Pulmonary Rehab because it's never been mentioned. Does it help you? PLEASE respond. Good luck in your research. cognac
Yes, Pulmonary Rehab helps. Tiring while doing it, but feel much better after. I mainly do the treadmill, ride the bike and do some weights.
I actually look forward to going.
Airlines control the
O2 level on commercial aircrafts.just set the POC a few notches above what. You normally use and you should be ok. I had the same problem so setting the poc to higher setting took care of the problem,
hi, just got back in touch,as I said before I have Pulmonary Fibrosis & now also have pulmonary hypertension. I am 74 & was diagnosed in 2016 with IPF & this last yr.pulmonary hypertension. Am on Esberit ..maybe a year or not but close.I had so many health issues & surgery before the diagnosis which started around 2010 before that a healthy woman. But with the surgery on my feet I got infections & had to have surgery for those plus knee replacement & both shoulder need surgery which I will not have..Was in & out of wheelchair with foot surgeries also & put on to much wt. (need to lose it it wil help with the IPF &PH after all that …then 2016 The IPF so now have to work hard again because of lung issues. I have one son & 3 grandchildren @ greats too (TWINS) I am blessed but still a little fed up but certainly not giving up..Kathleen….to all of you I wish you peace & to feel better.
Liked by Snookie
Hi. I just wanted to respond to your post as I wanted to let you know that the meds you have listed; I am only familiar with one. My husband was diagnosed in May with IPF and elected to go on Ofev. We finally finished the paperwork and got approved from the manufacturer of Ofev to receive the medicine free of charge. There are many grants that are available to you depending on your income. In our case, we had to go directly to the manufacturer and were qualified. We received the meds and within the first month, my husband was feeling much better and his breathing test increased by a large number. He had the overnight test for oxygen prior to taking the meds and tested positive for needing oxygen during the night. After being on Ofev for a month, he had an additional test and he did not need the meds. While I understand that medicine for one person is not the same for another person. I just wanted to let you know that some meds do work. My husband who could not go out to pick up the paper and be exhausted can not do so many things that he had not been able to do. Ofev may not be the right medicine for you but I would encourage you to try something that will slow the progress of the disease; while it may not be a cure, it can certainly make ones life easier and the quality of life is so important with this disease. I being the wife hate seeing the degradation the disease causes; I also rejoiced at the sight of him feeling so much better and returning to the man I married. With that said, I hope you will give some thought to the medicine that is available to you. Best regards. A loving wife.
My husband has been diagnosed with pulmonary fibrosis. I’m looking for someone who has been treated for that at Mayo.
Hi @ligreen welcome to Connect. That must be awful to hear that diagnosis for you and your husband.
You may have noticed that I moved your post to this pulmonary fibrosis discussion so that you can read past post on pulmonary fibrosis and can connect with others who have PF.
If you call any of this Mayo Clinic webpage http://mayocl.in/1mtmR63 you can find out more about being treated at Mayo.
@llwortman has been treated at Mayo and may be able to offer her experience with doctors at both Mayo Rochester and Mayo Arizona.
@francko @penlee and @keira also have Pulmonary Fibrosis and can sympathize with what you and your husband are going through.
ligreen, where was your husband diagnosed? And how is he doing?
Thank you for your reply! My husband was diagnosed with chronic inflammation and fibrosis at Mercy Hospital in Ft. Smith, AR. They sent his biopsy to Mayo for second opinion & it came back exactly the same. I read on Mayo website that the only meds they mentioned have some BAD possible side effects like liver damage. So it’s scary! His condition is he is not oxygen dependent. Just doesn’t have energy to move around much & no appetite!! We’ve addressed the chronic inflammation by giving up the stressful lifestyle/employment, staying out of the carcinogenic environment that he has spent most of his life in, & changing diet to mostly non-inflammatory foods, & taking anti-inflammatory supplements. It’s only been 2 weeks since his Dr received the 2nd opinion diagnosis from Mayo.
@ligreen Hello. I am sorry to hear of your husband's diagnosis. I do not know a great deal about pulmonary fibrosis except that it is serious and is progressive. I am battling a different lung disease myself. Mine is serious and progressive also, but more easily managed than P.F. I can sympathize with your husband in having a lack of energy. Same here. May I ask what his dr is recommending to him for treatment? Also, will you please tell him that I am thinking of him and wishing him the best. That goes for you too. I know that his diagnosis affects you also. If you need help researching P.F. or have questions, I am here for you and can help look things up.
@windwalker Thank you! I am a constant googler myself & have learned so much about pf since my husbands diagnosis. I knew nothing about it before. I would really like to hear from some who have been treated for pf by Mayo. The side effects of the new meds scare us.
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