Hi Charlene,I loved to travel too haven’t done as much as I wanted to do,my favourite places were Scotland (where I am from)and Las Vagas.I used to go with two girlfriends for one week every year my two friends have since passed away.I haven’t been anywhere in a long time what with looking after my husband he had a heart attack then a stroke… Read more

Hi Charlene I too have Kidney problems which I have believed came from my Diabetes.right now I am controlling it by keeping my blood sugar at reasonable levels.keep warm

Hi Charlene, I too have been hibernating haven’t been out in two weeks between the snow storms and icy cold.I have been trying to keep as busy as I can by cleaning my clothes cupboard with many breaks and knitting. I have made some small blankets for the animal shelter near bye. We are supposed to have a bit of a break weather wise wonder if… Read more

Hi I am very interested in the group support,to be able to interact with others who have IPF.I have had this lung disease for over 2 1/2 years now I am lucky that my Fibrosis is progressing slowly.Although not on oxygen yet I do get very short of breath, especially when exerting myself like making my bed or changing the linens,cooking or… Read more

Hi Charlene, thankfully I still have three good friends who try to help me get through this, the only problem is they live almost one hour away and I don’t have a car anymore so don’t get to see them much.My daughter tries but is not sympathetic to how I feel.

Hi Charlene,I know how you feel, although my Fibrosis seems to be progressing slowly (which I am thankful for thank God)there are some days where I really don’t feel very well like tightness in my chest or my breathing is not good, depression tiredness my daughter who is my caregiver says, Mum you are ok the tests you have taken show this,you… Read more

Hi Charlene, I did in fact purchase a adjustable bed it has helped my acid reflux at night but still have it during the day. I am also on a CPap machine which may be helping also. I had an appointment with my pulmonary Dr. and the results of my tests showed that my Fibrosis has not gotten much worse just a little so that was good news. Lately… Read more

Hi Charlene I too have tried not to show fear, what I fear is how it’s going to end will it be not being able to breath,a stroke, or could it be lung cancer. There is no best way.

Hi Charlene,my family Dr. gave me a prescription for Trazodone Hal for relaxation so I could sleep(since then have also been diagnosed with severe Sleep Apnea) have found this to be helpful, ask your Dr. if this could help you. So sorry you are having this problem I know it’s hard when dealing with IPF

I also had cramps and bad diarrhea with Ofev.I was admitted into the Hospital as my Magnesium was almost nonexistent I was in hospital for almost two weeks and was told that I could have died my pulmonary Dr. Told me not to take any more Ofev as my IPF seemed to be going slowly so she didn’t want to rock the boat

 

Hi Charlene, I have three good friends who support me,one in particular who has cancer she has just gone through a session of radiation, we try to cheer each other up.Its just that we live so far away from each other,almost an hour away.We keep in touch through the phone.My daughter takes me to all my appointments. Which I appreciate as she has… Read more

Hi Charlene, I find that I am also emotional when someone says something mainly it’s my daughter,when I wonder if some of my symptoms that I feel is related to IPF.she always says I don’t have to think it’s theIPF, says it could be my Diabetes and now that I have severe sleep apnea and once I get the CPAP or Bpap I will feel less out of… Read more

Hi Charlene, it must be so satisfying to work with children and families with a disability I admire you. As to parking close to the stores I have a disability certificate which I put on the windshield of the car I am in,you can apply for one at the office where you get your drivers license it helps a lot.

Hi Charlene, I do feel like a burden on my daughter,as she has to take time off work to take me to all my Dr’s appointments. There are quite a few. We live in Caledon and as I still have my Dr’s in Mississauga where I used to live prior to my IPF it takes almost 3/4 of an hour to get there.Now with the severe sleep apnea I have to go for a… Read more

Hi Charlene, I no longer have a diarrhea problem but my Pulmonary Dr. Isn’t putting me on any Meds for IPF right now as she doesn’t want to rock the boat  as my scarring  seems to be going slowly for now.I have asked to have a CT scan every year as I haven’t had one for two years, I want to know how much more scarring I have, I was… Read more

Hi,Charlene, I wish I still had my fur baby (my cat) as I told you earlier I had to rehome her because my daughter has a senior cat and she wants him to enjoy his time left, but I still miss my cat so much it’s been over two years and at night still have a cry especially after talking with the lady who has her said if I want her back I can, she… Read more

Hi Kathy, I was put on OFEV just after being diagnosed but due to severe diarrhea was taken off right now am not taking any Meds for IPF. Was discovered it was the acid reflux Meds (raperazolle)not sure if that is the right spelling that was causing the severe diarrhea when my magnesium was almost nil and ended up in the hospital. So as now I… Read more

I live with my daughter and family, I make some of the meals so that she doesn’t have to do this when she comes home. I also keep my room and bathroom clean, just now, I am making little mats (knitting) for rescue and shelters for cats and dogs.I am afraid that is about all I can do right now ,in the fall I make hats or scarves for seniors.

 

Hi Charlene, your forums have really helped me you have answered a lot of my issues I really appreciate this thanks again.

Hi Charlene, I go to my pulmonary Dr.one week from today,and hopefully your questions to ask will help me. When I see her I always feel like I am complaining.I try to be (brain fog)smiling And bright but don’t feel that way. I put on my makeup and fix my hair nice and am told how good I look and again don’t feel that way. We will see ,I should… Read more

Hi Charlene Sandra, and Joyce, Charlene I congratulate you,I can’t imagine what it must be like to be so young with this disease, at least I am on the tail end of my life. In regards to this topic , I find myself wanting to be alone more and more.I have taken up trying to do sketching (I have never before done this)anyway we will see how this… Read more

Hi Charlene, I will have to see if I can take pineapple juice as I also have diabetes type 2 and have bad acid reflux.Thank you for the information as always Sheila

Hi Charlene, I was diagnosed with IPf over two years ago.I do some gentle exercises recumbent bike and walking, I am 79 years old.As yet I am not on oxygen my meter says anything from 84to92 .I see my pulmonary Dr. In two weeks we will see what happens then. I recently had a sleep apnea test done. I will get my results then.Thanks Charlene… Read more

Hi Charlene, I find I agree with Sandra, I used to be outgoing but now not so much. I have three good friends which I still see but that’s about it. My daughter wants me to join a seniors club as I am by myself most days, but I not really interested.The only thing that I feel would help me is to have my cat back (I had to have her rehomed ) I… Read more

Hi Charlene, I am currently using a recumbent bike and a bit of walking. It’s not much but all I can do.I live with my daughter and we have air conditioning which helps otherwise I wouldn’t be able to do that.Thanks for letting me join the Forum, it gives me lots of information.  Sheila.(I can’t remember saying this before) maybe it’s my brain… Read more

Hi Charlene, I am currently using a recumbent bike and a bit of walking. It’s not much but all I can do.I live with my daughter and we have air conditioning which helps otherwise I wouldn’t be able to do that.Thanks for letting me join the Forum, it gives me lots of information.  Sheila.

Yes I eat less and have lost almost 40pounds Food just has no appeal. I am 79 years old and was diagnosed two years ago.I retired at 75 to look after my husband who died of Cancer two years ago my daughter had me give up my apt hoping it would be easier for me but as I had to rehome my cat it hasn’t  It was too much stress. I am not on oxygen… Read more

Hi Charlene, my quiet hobbie is Knitting, I have made hats and scarves for family and friends.I also like to read. I used to do more crafts but my eyesight isn’t as good as it was.  Sheila

Hi Charlene,I have done the Pulmonary rehab it was very good but as the disease progresses it gets very hard to do much except I try to walk as much as I can. Some nights I don’t sleep much due to Acid Reflux (which I get a lot of) so the result next day is I am very tired.thanks for letting me in on the forum . Sheila

Hi Charlene, I also get occasional cramps and a lot of pain, I didn’t realize it could be my IPF I thought it was osteoarthritis.I use Voltaren when really bad Tyinol. I am not yet on oxygen although I do get readings on my personal oxonimeter of 90’s or slightly above and very short of breath when showering or preparing meals my back gets… Read more