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    • #29386
      Marj
      Participant

      Hi

      My husband was diagnosed with ipf approximately 4 years ago last March, he lost weight gradually – down to 9st 6lb.  His weight did seem to stabilise but almost two months ago he had a UTI and had to be catheterised because he couldn’t pass water at all.  He was treated for Sepsis at the time but we are unsure if it was a proper diagnosis.  He has now been given medication to shrink his prostrate gland – this was the problem causing him to be unable to pass urine.  he has now had the catheter removed but when he weighed himself  he has lost a further stone – he is now 8st 5lb, he is 6ft 1 inch tall.  This weight loss was quite rapid.  He has had a couple of episodes of becoming really breathless while not doing very much – he was actually painting a fence post, but his 02 was 98%.  Does anyone else have this type of problem – would this be called an acute exacerbation?

       

    • #29397
      Jofac O’Handlin
      Participant

      Hello Marj,

      I had thought of starting a thread on weight loss. Your husband’s sudden loss of weight is concerning as at 6’1″ he is on the border of being clinically underweight.

      I was for the greater part of my life a runner, and tried to maintain my weight at a level under 11st 7lbs …. not always successfully.  My height being 5ft. 11″. After being prescribed Nintedanib (OFEV) I gradually declined to the 11 stone level, working to hold it above 10:10. At the end of January I suffered an exacerbation and then needed oxygen for any significant exercise. It all settled down at about 10:10 my weight then in May suddenly dropped to 10:02 and the slowly continues to reduce now 9:12.

      My overall muscle bulk has declined and now looking very lean.

      I will add that a friend (that i’ll call Bill for anonymity) is on a parallel path with me but older, mid 80’s. He has lost weight and muscle bulk as well. Un be known to either of us until last year or so we were both diagnosed with IPF in 2013, so into our 8th year. I am 6 years on OFEV.

      The question for us is —– How can we maintain a healthy weight?

      Has anyone suggestions?

      I note that your husband is staying active, something that I have tried to do. We have just sold our farm house which was labour intensive. I am concerned that our present terrace house is ‘easy care’ and that I will stagnate. So, lots of gentle walks to maintain some fitness.

      Kind regards,

      Joe

    • #29412
      Marj
      Participant

      Thanks Joe for your response.  Yesterday I requested the medication that the hospital has prescribed for his prostrate only to be told that his blood pressure is too low and this medication can’t be prescribed.  He is really worried that he will not be able to pass water himself without this medication.  My question is, does anyone else have a problem with low blood pressure (orthostatic hypertension) and does this lead to Pulmonary Hypotension?

       

    • #29413
      Jofac O’Handlin
      Participant

      Hello Marj, You pose an interesting question. My blood pressure has always been in the healthy range, 125 / 80 occasionally 135 / 80 ish which I attributed to having been a lifelong runner/jogger. Recently, despite being restricted to a much more sedentary lifestyle my blood pressure numbers have fallen into the 110 / 70 range, which does not make sense unless other factors are involved. Your observation about pulmonary loop pressure does need investigating. A casual remark by a consultant some years ago referred to right ventricle stress and distortion indicating that the side of the heart was working harder, thus higher pressure,  to circulate blood through the pulmonary side. I have a series of appointments over the next few weeks, starting tomorrow, so shall make some inquiries. ….however, … you are dependent on my fragile memory! How often do we get back in the car and remember the vital question that you had intended to ask? Kind Regards, Joe

    • #29429
      Ben Robinson
      Participant

      I have the enlarged prostate and difficulty with urination for which i was prescribed Flomax.  After two months it is working well.  Not a good issue to have when you are on Lasix for fluid also.  All i do is pee.  I have also Lost weight and have gone from my former body builder mass to skeletor the bag of skinny bones. The fluid also accounts for significant body weight fluctuation.   My appetite is poor and greatly affected by my PH.  These diagnoses were again dysfunctional by the doctors in between specialties and cutting their time short. My own advocacy and education was essential. Work outs are difficult with this condition also.  Developing muscle and gaining weight without excessive fat is quite the challenge but i was just cleared to try if i can.  Join the PF club and all of its many aspects- lungs heart pee skinny and the whole works.

    • #30834
      Marj
      Participant

      Hi

      Its the first time I’ve been on here for a while.  My husband is waiting for surgery now to remove part of his prostrate – he has been fitted with a catheter since June 2021.  His IPF seems to be stable although his diagnosis is 5 years next month, he does get out of breath easier and more often than not feels unwell but can’t really say what’s wrong, he can’t take either of the two available medications as he wouldn’t be able to tolerate the side effects because of stomach surgery he had 30 years ago.  He is terrified of having the surgery but knows he has to have it.  His weight is still at 9st 6 and looks like a bag of bones with no muscles left.  He also suffers from a dripping nose as I’ve seen on here quite a lot of others do, although he doesn’t use supplemental oxygen.

      Does anyone else feel generally unwell?

       

    • #30842
      Ann Garner
      Participant

      My husband is 83; finally diagnosed with IPF  3.5 yrs ago & been on Ofev for 18 months. He’s 6ft and down from 13 stones to 10 st 5 lbs with severe muscle mass loss. He has a cough and runny nose which doesn’t help his reduced appetite from the medication. Resultant lack of energy means reduced exercise which is not good. We live day to day with no GP support and attend the Lung Clinic every 3 to 4 months to record his lung function which is reducing each time. Life is very hard living with this devastating disease.

    • #30849
      Jerry Genesio
      Participant

      Hello All: I’ve been reading everything on this page and I’m astonished by the similarities between my symptoms and those of others here. I’m 83 and was diagnosed with IPF in January 2020. As my mother had exactly the same symptoms between age 80 and her death at age 90 of other causes, I’m quite certain my PF is genetic; a cause now recognized by many pulmonologists.
      Since my diagnosis, I have lost about 15 lbs; now 185 down from 200. Unfortunately, most of that loss has been muscle mass. My appetite is barely a shadow of what it once was. I’m 5’10.5″.I also have a runny nose but I’m convinced that’s due to allergies.
      I’m not on oxygen but I do experience a sudden loss of breath without exertion quite often. I have resisted taking Esbriet because I.m on so many other meds, including Flomax, I’m worried about incompatibilities. Ofev is not an option as I’m also on blood thinners due to heart disease and almost constant A-Fib. I also have severe spinal stenosis so walking and exercise-in-general are impossible. Fortunately, I enjoy research and writing, and I’m computer literate, so at least my fingers are getting a lot of exercise.
      When I was diagnosed, I was told I probably had 3 to 5 years left but I fully intend to outlive my mother. One of my aunts lived 102 years so at least some of the genes have promise. Please continue to report conditions here and I’ll do the same.

      • #30878
        Christie Patient
        Moderator

        @jgenesio Hey Jerry! It’d definitely be worth it to talk to your doctor about drug interactions before you write off antifibrotics entirely. My mom had constant a-fib before her transplant too.. all of her heart conditions were comorbidities to her IPF, so taking OFEV actually helped protect her heart. I know you’ve got more going on and of course, it’s a personal decision how to treat your PF but I just wanted to say it’s worth talking to someone who specializes in interstitial lung diseases to decide what medication regimen is best for you. Glad to hear you’ve got longevity in your genes and academic pursuits to keep you busy during this time of isolation. Best wishes
        Christie

    • #30863
      David Thompson
      Participant

      I lost 10 pounds in about 2 weeks because no food was appetizing. That was a month ago.

      Now get this. First of all, I’m fully vaccinated including booster. Last week I realized I had no sense of taste, sore throat,and headache. COVID! Rapid test at one week negative.

      • #30876
        Christie Patient
        Moderator

        @davidthompson How bizzare! Did you ever get PCR tested to confirm or did you just do the rapid? Have you had any other symptoms or a drop in your o2 sats? Has your appetite come back?

    • #30887
      David Thompson
      Participant

      Just got rapid test at about 6 days post onset of loss of taste. Taste has not returned. Weight stable. No change in SOB or 02.

      Any recommendations on portable 02 generator? Thanks ??

       

    • #31038
      George Manolakis
      Participant

      Random thoughts having lived with IPF for 5 years.

      Background. I was diagnosed with IPF in 2017 at age 83 with relatively stable PFT,s and CT scans thru mid 2021. Started rehab September 2021 going from the attitude of how can I increase resistance level of each exercise until in January 2022 where I cannot do 1 mph on treadmill for 2 1/2 minutes. In my home, I cannot walk 40′ without considerable SOB. Last CT scan in December showed substantial progression of fibrosis from 1 year earlier.

      Weight loss. Over last 2 months, lost 12 pound (175-163) at 5’8″. Decrease in appetite.

      Ofev/Esbriet. I was very hesitant to take these drugs due to fear of side effects and the requirement to take multiple pills multiple times a day and I would have resisted my pulmonologist’s advise to begin this regimen partly because of lack of progression over the early years of IPF. I am not a happy pill taker altho I take some pills every morning and others every night with some missed days. Today, I realize too late here is no “do over” when dealing with an incurable disease. If you have IPF, my recommendation in hindsight is to start on drug therapy early. Can only help your longevity.

      Progression of IPF. When it starts going downhill, it can go fast, at least in my experience (2 months). Now on Esbriet and Oxygen.

      Cannula. When wearing the cannula over the ears, there is a constant tug of the tube on the ears. I started clipping a 1/4″ binder clip to my shirt to support the cannula without the tugging. That size clip very slightly squeezes to tube so it requires a minimal effort to adjust the length. I use it at night also. More comfortable sleep.

      Lung transplant. Your lungs are only going to get worse in time. If you would ever consider a lung transplant, start early on. Age is a factor as are other medical conditions which could emerge as you age. Many transplant centers have age restrictions. Two that I am aware do not, on the East Coast, are Duke University in Durham, NC and Mayo Clinic in Jacksonville, FL. They at least considered an 87 year old.

      I hope this helps someone.

      George Manolakis

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