Hi

My husband has recently seen his pulmonologist and given his latest test results.  I am somewhat confused by them. The previous three tests all showed a decline in both FEV1 and FVC but this one has increased from 3.49 to 3.84 and 3.91 to 4.23 respectively with FEV1/FVC ratio at 91% but his DLCO has stayed at 46% and his KCO is 59% (we… Read more

After reading all of the above I have to say that when my husband was first diagnosed his first words were “I don’t want to die gasping for breath”.    He was diagnosed just over 5 years ago and has remained quite well, just the odd off day when he struggled.  He doesn’t have supplemental oxygen yet.  For the past two weeks he has felt really… Read more

Hi John,

sorry you appear to have gone through the wars with the nose bleeds.  Hope it is all sorted now for you.

Hopefully hubby will be hope this afternoon – when doctor saw him this morning his heart rate was slow so he has to have that checked out before he can come but he’s optimistic.

Hope your annual checkup gives good results for… Read more

Thanks Jeff, my husband is 72 and, like you he isolated and we all took great care not to bring it home.  However, he is having a problem with his prostrate and has a catheter fitted which needs changing every so often by the nurses.  He thinks he picked up the Covid from the clinic as the nurse he saw last week told him she was just getting… Read more

My husband has been diagnosed with ipf over 5 years now and is doing quite well, he gets more breathless now but up until recently has been able to carry on doing the jobs around the house that he can manage like vacuuming while I’m at work.  He could still do the gardens up until last week when it was too much and he felt really ill.  Up until… Read more

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… Read more

Hi Dicky  Thanks for asking.  At the moment he’s struggling with depression and is also very fatigued and I can only describe him as suddenly very frail and weak.  I suppose it’s all part and parcel of this disease, it would be better if you could actually go and see the doctor instead of trying to describe everything over the phone!

 

 

Hi, I have posted on here a couple of times in the past.  My husband was diagnosed with Idiopathic Pulmonary Fibrosis  four and half years ago.  His last visit to Aintree Hospital – which is centre of excellence for respitory diseases – was in February.  According to the letter sent to our GP his FVC has reduced by approximately 7%, and he… Read more

H Char, just reading these posts re clubbing.  My husband has had clubbing in his fingernails for over 2 years (just over 4 yrs since diagnosis).  The thing I dont understand is, if clubbing is caused through lack of oxygen, why are his o2 readings still 94 – 96?

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… Read more

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… Read more

Hi Jackie,  Yes it’s my husband, he doesn’t do technology, I don’t think he knows where to switch the computer on!  I keep trying to figure out what is going on with his illness, we hardly ever see a doctor, and the last pulmonologist told him to hang fire with his diagnosis until he gets worse! which I couldn’t believe, this left him really… Read more

Hi Dr Don

Many thanks for your response.  His lung function appears to be good 80% FEV and his O2 is 94 – 95%.  this is why I wondered if his symptoms could be related to his heart rather than his lungs.  I don’t have the breakdown of his spirometry tests to know his DLCO.  He is tired most of the time – even within the first half hour of… Read more

Hi – thanks for your comments Dr Don.  My husband doesn’t wear nail polish, clear or coloured!, I understand what your saying about the pulsoximeter – I tried it on myself and it reads 99% so I don’t think there is a problem with the actual instrument, I just wasn’t sure if him having clubbed fingers affected the reading.

We went to… Read more

Thanks for replying Mark  I have been back on to the pulmonary team and we have an  appointment for Wed afternoon i will let you know how we get on   I took his O2 readings today and were 97%  do you know if finger clubbing could give false readings  his blood pressure dropped to 97/60 when he stood up again so that is a real concern

 

Marj

Hi, I’m new on here so please bear with me I may tend to ramble a little.

My husband was first diagnosed with Pulmonary Fibrosis and traction bronchiectasis in April 2017 following an x-ray and CT scan.  In December 2017 he had a lung biopsy which confirmed he had Idiopathic PF.  He remained quite stable for a long time but in recent months he… Read more