Mayo Clinic Connect
Is there any one out there that has PF?
Thank you for your kind word .I have a bad heart so I have learned to value each day .I knew I had asthma but the hypertension and fibrosis was a surprise.waiting to see new doctor .My husband has end stage copd so I taking care of him .God will not give me more than I can handle but it scares me what he think I can handle .ha ha.God bless you too
Liked by Colleen Young, Connect Director, payntertam
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We’ve tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can’t figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that’s all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I’m not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I’ve fractured my ribs 5 times in two years because of it (I’ve learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven’t a clue why that is). I’d be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I’ve snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it”s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it’s to good to be true……..). So with all this said, I do my best to try and control it as my as it control me.
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Hello: your last sentence is great with your positive attitude! You may really enjoy looking up Mayo Clinic Dr Amit Sood “Brain” fun talk ! I highly recommend his newest book “Happiness”. I am sure it is his life lessons that have helped me direct my positive attitude & daily gratitude as a 9 year lung cancer survivor.
I am a never smoker who was shockingly diagnosed with lung cancer by Mayo doctors. The advances in pulmonary care are light years beyond what they were onlym9 years ago.
Keep connected and keep up your great attitude, that’s a huge part of the fight to have a great quality of life. I know, because I have had some of the challenges you shared. Keep Moving & know you are not alone!
i have been on Esbriet too, since Mar 2014, the results have been very good. My case is different: i rarely cough! only slight mucous but exercise takes a toll on breathing, i uses twice the liers of O2 constant flow 24/7. i use Famotidine 10 mg taba. for acid reflux.as the Omneprazole caused me problem.i use no inhaler or nebulizer.i take Zyrtecfor allergies.i sleep a lot w afternoon naps.i am a never smoker! i have not heard of the sevier coghing you experience? keep the faith we will all go on with limitations!
Liked by Colleen Young, Connect Director
I am recently diagnosed with IPF and shortness of breath was my only symptom until last fall. The cough and shortness of breath got steadily worse,the pft’s revealed restrictive lung, ILD. The oxygen is a recent tool and it certainly helps greatly.
Esbreit is going to be used as soon as we get help with payment.I want to stay in touch with this group especially people that have been using this medicine. Thank you for listening. I will watch for your posts.
My name is Larry – I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
I’m interested in this info though it mY be older, I want to find answers and what works. LINDAWEST1942 aka @tula
Serrapeptase is what she used for IPF. A bit of research for me to do I hope. Bless you for sharing with others.
I respect your Breathing challenges. I have been there and understand how scary it can be. Dr Amit Sood offers an amazing “paced breathing” app that has worked very well for me.
With the help of the SMART program
& Paced Breathing guidance I have learned the importance of the mind & body connection. For me personally, by taking time out, closing my eyes and concentrating on telling my nervous system & body to relax , only 15 minutes
2 Xs a day, I have conquered the fear that comes with disease.
I started walking with this 15 min cd on my iPhone, just sitting made pain & diffulicty of breathing worse. I realized that pushing my body with my short breath helped me feel better.
Our mind and spirit are amazing tools in helping our body feel better. So keep moving. I progressed from the shuffle to running with most of my left lung missing after lung cancer and surgery that saved my life.
I am grateful to be alive and enjoy living one day at a time! So try to breath a little deeper each day. Know you are not alone. Thank you for sharing.
Liked by clavonherr
I would so love to run again, I used to run 6 miles a day 6 days a week, just climbing one flight of stairs winds me so very much. I meditate on occasions however I haven’t got to the level of taking deep breaths yet (when I do I begin to cough). thanks for the input, I’ll continue to work on it.
Hello thanks for sharing your lung story. I understand your fear and I am happy you are brave to reach out to others on connect. I am a nine year lung cancer survivor. I also know about lung fibrosis.
You have made a excellent choice to work with lung health teams at Mayo. They are the reason I can now get outside and enjoy each day with activities because moving makes my lung feel better.
The brilliant pulmonary teams and support at Mayo have given me hope along with a great quality of life and desire to live well oand truly enjoy life and everything it has to offer ne day at a time!
Let’s keep in contact in connect! We need each other’s support. God bless you. You deserve a hug.
Thank you Linda for the kind support. I know when I work out at the club with my oxygen on (I’ve recently had to up it form 2 to 3 liters for better recovery), the people there see me everyday pushing myself and coughing I can’t help but think that they are all behind me to keep on going. I’ve made a few acquaintances because of it.
It is odd how God’s plan include our maladies, but life is what it is here on earth. I’ve seen how strong people can be (within my family on such trials), he is our comforter and you’ll rise above the challenge.
Hi Oliver, I am surprised you don’t use a nebulizer (for me it’s a blessing on helping me breath when it becomes a challenge throughout the day), however with this condition I suppose the doctors know best–. Two of my three docs encourage rehab as I shared earlier, but they seems afraid or cautious about letting me up my routine because of my coughing. I appreciated their concern but I needed a bigger challenge so I go to the fitness club for my routines. I can’t overdue it since my lungs tell me when to rest and stop. Thanks for your post.
Hi Oliver, Yeah the doctors are puzzled with my coughing too as well as I am. We keep trying different things to see if we can identify why I cough so much. When I take my pft they tell me I have the lungs of a 90 year old. 90 YEAR OLD? I’m only 68—and a half lol. During the test I cough so much I border line passing out because of my inability to catch my breath (lack of oxygen and all that stuff), it’s a wicked test for me to take. My 6 minute walk now requires me to do it with O2 at two liters. My nebulizer is a God send in aiding me to breath at my difficult time. Yes, it definitely limits us on our activities, but I make it. It’s becoming a challenge between me and it, that’s why I’ve gone back to weight lifting (with my O2 on-upped it to 3 liters for recovery). It was tough starting all over again but the feel of the pump is worth it to me. Thanks for the post.
Hi Tula, I’m so sorry to hear of your diagnosis. Gentech (the maker of Esbriet) I think has programs on helping with offsetting the costs. My first two bottles of Esbriet were complimentary and during the period of taking it they called me to inquire if I were in a position to afford the medication. It is very expensive I know, and I am fortunate enough to have been retired from the military and am on medicare, that my cost is where I can afford it. Hopefully you and Gentech can work it out. Now, does it work? The FDA has approved it for use here in America, so they must think it does. I get several pfts (pulmonary function tests) a year and my condition gradually worsens as time marches on. I don’t have a clue as to how fast the progression is with or without Esbriet but it’s no a cure all, and I am aware of that. It’s the only thing on the market right now (in America) that they are using to my knowledge. I do know this, it is really rough on my digestive tract. It’s suggested to be taken after a meal, but for me (even after over a year) it’s still trial and error as much as a fluke on how it reacts to my upper stomach. I can tell within 3 minutes after taking it if I’m going to get (what I call heart burn) indigestion. So I keep antacids around all the time and it takes more than one to work (I don’t use brand names, just a simple one from the Mart [if you know who I’m talking about]).
The ONE thing I have found that works for me is a shake that I make. Either a half or whole banana, milk (I use whole milk) and I take a protein powder (for my workout regimen). Never fails, no adverse reaction, glad I stumbled on that. I have met a gentleman (at a Gentech seminar) that takes it with water whenever without having to eat and he gets no side effects. Lucky him but we’re all different. Hope this helps a little on explaining the Esbriet thing that I’ve experienced.
Liked by Colleen Young, Connect Director, clavonherr
Hi Larry, I’m rally curious on what you said about your condition improved when you quit taking your statin, how did it improve?
Hi Tula (again) lol,
I have tried taking Serrapeptase and a high dosage of it. My Pulmonologist has never heard of it, but didn’t discourage me from it. I tired it for two months but didn’t see and improvement so I stopped. Not saying is doesn’t work (guess I’m impatient) but for the cost with no scientific proof of success, well I’m somewhat skeptical. I do understand and use homeopathic ideas for other things (my sisters and daughter is totally sold on the homeopathic stuff). I know may daughter has come across with an essential oil that helps alleviate migraines with her daughter (11 yrs old now 13) and my sister says it works for her too. So I ‘m not so closed minded on other things that can help people for conditions they/we suffer with. I guess I was at least expecting so little improvement on my breathing after using it (serrapeptase). I do hope you find something that helps you, and if it does please drop me a post.
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