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    • #29386


      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

      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,


    • #29412

      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

      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

      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.

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