IPF How To Cope with Sick Feelings

I just had first visit with pulmo doc and going to have another cat scan. Feeling more energetic now , try to go to water aerobics every morning, can do this better then walking ???? how did you get on research program at Mayo, we have mayo here and I sure would like to get in a program for the medication is too expensive for me. Praying that nodules in lung has not grown. I also had diagnoses of IPF in 2013, but they said I was ok after medication treatment, wondering if I still had this all these years, slow growing if so. Thanks for caring and keep me posted.

Hi Ray:

Welcome back to Connect, sticky keys is my middle name! Ha!

So great that you have found the exercise that works your lungs and helps you breathe.
I have discovered that when I travel the different allergens, which seem to be many, really
affect my breathing. Non the less, I keep moving, walking, running all of which keeps my
lungs filtering through the challenges we can't even see! Right?
You have quiet a history with medical facilities, don't you? The good news is when you travel
many will have your records!
I have been very impressed with Mayo Clinic's over all care, which includes the medical records
that are available anytime anywhere in the world? Are you being seen at Mayo Jacksonville? If
you are they have a great team of Thoracic and Pulmonary docs! Many people praise them and
they have a great connection with the other two Mayo Clinics RST & PHX as well.

I mention this because, like you, when I get a respiratory infection it can knock me down for the
count and challenge my one lung to the max. I was in desperate need for relief a couple of years
ago and returned to Mayo Clinic RST for a treatment to get me through a horrible respiratory infection
and my doctor called in the Doctor who "invented" the drug that pulled me through.

It's nice to know there are such great services aren't we? Great you CONNECTed!

Linda

I was diagnosed with IPF this past May I'm 54 been very healthy all my life I'm so out of breath doing anything and this is with oxygen I take my dogs around the block slow walking with 4 liters of pulse oxygen and have to stop several times to catch my breath I read some of you exercise I'm so confused as to why I can't do anything and I've only been diagnosed a year almost I am currently on no medications I got deathly sick from insurance and cellcept and was in prednisone up until about a month ago I have been experiencing severe muscle and joint pain and my lung doctor did blood work and I don't have any diseases that would cause that but I'm still having slot of pain I've had a really hard time of getting help and answers I've been to the u of m and go to the mayo now my quality of life is horrible I can't walk even with oxygen I've gotten a lot worse but the scans only show a small change in scarring I'm very confused and frustrated with the fatal diagnosis and not getting help to feel comfortable I'm at my wits end dealing with this disease it's all a wait and see game

Welcome @kturchin,
I completely understand that you are confused and frustrated at being handed this diagnosis and not getting help to feel comfortable. I'm turning to other Connect members to help answer some of your questions. @timfair @steve1948 @loisblo @raincrowe @nancyligon @rayhastings @inspiration @oliver22 @agullotti and others have written about living with IPF and many of them have written about the importance of exercise. You can read more in this discussion:

- Pulmonary Fibrosis http://mayocl.in/2oiU4mX

Kturchin, Just to clarify, you said that you are currently not taking any medication for IPF, but that you are on oxygen. Did I understand correctly? You most troubling symptoms are fatigue and breathlessness, as well as muscle and joint pain, right?

Hi Ray, what do you mean by rotate oxygen? Do you have any info on pulmonary hypertension and how soon it can become
Severe; it was mild three months ago, I do not have heart disease and my oxygen needs have gone to 6 ml for activity and. lower when sitting. Perplexing at best. Thank you for listening.

I understand your confusion and concern. Unfortunately I don't think your situation is uncommon. My advice is to meet with your pulmonary doc and voice your concerns. Currently there are only two medications approved for IPF. Neither of these will cure the condition, they will slow the progress.
The most important step for you is to find a pulmonary specialist that is familiar with IPF and that will listen to you and answer your questions.
There is a lot of research going on regarding IPF with several promising candidates. mayo clinc has a good reputation for treatment of pulmonary issues. Sometimes you have to take charge of your treatment. Contact the hospitals patient representative and let them know your concerns and let them help you.
Walking is a good excerise and can be difficult but is worth the effort. Ask your pulmonary about pulmonary rehab. They can be a help to teach you better ways to breath.
Hope you find the answers you seek.

Ray I have tried the one on one with may pul doc but he says my afternoon fatigue drain and muscle aches etc are not result of IPF. i walk 1 to 2 miles a day 10 to 15 minutes at a time on flats and climb stairs for leg work. i will try to get appt at PHX Mayo as i feel they may have a different evaluation. at my doc i walk less than 1 minute on flat and 7 low grade steps then he evaluate from that.
good luck with your progress hope you get some relief

I feel the same every day every muscle aches and joints my feet and ankle joints even hurt I'm tired and on 4 liters of oxygen when active and I still will get out of breath and have to stop and do breathing exercises I was in cellcept that shut my kidneys down to 50 percent working and I tried imuran and I was deathly ill throw up unable to eat and barely could keep liquids down for 6 days I won't take either one again I'm at a loss I'm in so much pain and the doctor does nothing I'm going to keep on hanging in there you too it's hard

Yes I tried cellcept and that shut my kidneys down to 50 percent in 3 weeks then I tried imuran which after taking for 5 days made me deathly ill unable to eat and barely could keep liquids diwn for 6 days I'm unable to even walk around the block on 4 liters of oxygen I have to walk slow and stop and do breathing exercises because I still get out of breath and dizzy sometimes the new problem is the muscle and joint pain

if the Doc says that your tiredness and joint pain is not IPF related, he should refer you to specialist that can figure out what is causing the afternoon problems. I have had IPD doe approx 5 years and take Esbert for the las year. I feel that it has helped me with breathing and other IPF problems. You might want to try it.