[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 poorly but couldn’t put his finger on what was wrong.  We eventually saw a doctor last week and he sent him to hospital (in UK) , he was diagnosed with Covid pneumonia.  His oxygen level did drop to 91 but his heart bpm dropped to low 50’s and at one point in hospital they woke him because they fell into mid 40’s.  He was discharged with antibiotics after 4 days and has now finished the course.  He still has a “productive” cough and feels like crap.  We do keep taking his O2 readings which are now back to 97 but his bpm is still under 60.  Maybe this is normal for him?

I’m sure other spouses etc wonder “is this the start of the end”.  I wonder if he even should have been discharged, but as you can’t get onto the covid ward you can’t ask the questions you feel you need answers to.  Getting an appointment with a pulmonologist is virtually impossible – you have to wait for your anniversary appointment.  He does get upset when he has a day that he can’t do things because he can’t get his breath and his nose is constantly dripping.

Apart from the ipf, he has had a catheter fitted for the past 12 months while waiting for an operation to have some prostrate removed – he should have had his pre-op last week but had to cancel due to being in hospital.  I telephoned to get this booked back in and May is totally booked up and they haven’t opened the June appointment calendar yet !

I lie awake sometimes listening to him breathing – his breaths are really shallow – just like a little pant out then every now and again he takes a deep breath.  I get concerned that he isn’t getting enough oxygen during the night.

I don’t know if I over think things – does anyone else’s carer feel like this?

I don’t know if

[marj]

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 John.

 

 

[marj]

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 over Covid.  He felt pretty rotten for the first week but, since being in hospital on the anti-biotics is picking up.  I have read up “googled” on the effects of covid in ipf patients and it says that 35% die within the 30-day or 60-day period which I found quite worrying.  I really shouldn’t keep googling, but sometimes it’s the only way you get your information isn’t it.  As the ward he is on doesn’t allow visitors its hard to try and get to speak to someone about the severity of his infection.

Marj

 

[marj]

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?

 

[marj]

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?

 

[marj]

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 confused and as he has had a lung biopsy to confirm IPF I though that comment was a little silly (for want of a better word).   He does keep quite well apart from the tiredness and now he bruises really easy – if he gets a pain in his little finger I’m googling to find out if its related!

Look after yourself Jackie, I think excersise is a good thing with this illness, he walks the dog everyday, usually about 2 miles and he likes to hoover and mop floors while I’m at work.

[marj]

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 getting out of bed.  They told us at the outset that he wouldn’t be on either of the meds for IPF because of the side effects, so considering he isn’t taking any medication and is 4 yrs since diagnosis he is doing really well, he has last a further half stone in twelve months, he is only 67kg and 6’1″ tall so is really underweight.  Just wish we could do something about the fatigue.

Marj

[marj]

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 pulmonologist a week ago – his FEV tests showed his breathing hasn’t altered “much” it was 85% now it is “around” 80% havent seen the actual result yet, still waiting for the letter.  I suppose his problem is much the same as everyone else – the fatigue (and dizziness).  He told us he can’t have any medication because of the side effects (he already has stomach problems from having one third of his stomach removed 35 years ago) I requested another HRCT scan to see the progression and was told he didn’t need one as the FEV indicated the progression of the disease and it is quite stable.   He just generally feels exhaused most of the time – he pushes himself to keep doing the jobs he used to but struggles to keep going.

My concern was whether this is taking an effect on his heart.  When I asked the question to the pulmonologist he told me it was a good question, but didn’t answer.  He basically told us that he was only interested in his lung functions.

I don’t know why the previous pulmonologist said to “hang fire with the diagnoses of IPF” because he isn’t at deaths door yet when I hear of so many other people staying stable for years.  He did have a lung biopsy which confirmed IPF so why make that comment – I though the biopsy confirmed the diagnosis or am I wrong?  That initial learning of 3-5 years is scary but then on this type of site it is such a relief to find so many people live years and years longer.

Marj

[marj]

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

[marj]

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!

 

 

[marj]

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?