Marj

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 poo…[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 you…[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 o…[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 w…[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!

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 pr…[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 c…[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 get…[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 the…[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