My dad

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jules1985 Posted: 06-06-2010 2:22 PM

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Hey,

my dad has been in hospital for over 2 weeks now.

I'll try to keep this short although there's a lot to say.

My dad has been a smoker since he was in his teens, he's now 59. About a year and a half ago he was diagnosed with pulmenary fibrosis. My parents didn't go into much detail about it to me and my brother probably because they didn't want us to worry. It's only really been the past 9 months that we have been told more about the disease, and how there is no cure for it, apart from the possibility of a lung transplant.

My dad was told by doctors to give up smoking, and then he may bec considered to be put on the list for a transplant. My dad struggled to give up smoking, and in Feb this year he had to give up work because he started suffering from breathlessness. He has always had a cough and phlem for years, but the breathlessness meant he was unable to do his job - he worked in construction.

From Feb this year his health started decreasing more than the average person with the same disease.

His lung specialist in Edinburgh started the process of getting him down to newcastle for a day for a consultation on the whole lung transplant effects, aftermath etc. He was told then and there if he didnt stop smoking he wouldnt get on the list, which he has to be on before he's 60 (he's 60 this October).

Think this really hit home, and my dad managed to get off the cigarettes. Then we recently found out his lung consultant in edinburgh had wrote to newcastle to ask that he be considered for the 4 day tests that are carried out prior to you being put on the list....

It turns out that letter to newcastle was a little too late beig sent, as my dad recently got pnemonia and bronchitis. which is why at the moment he is in hosp. on oxygen 24/7, on morphine tablets every 12 hours, anti-biotics 4 times a day and steroids.

He has been unable to walk and is bed ridden due to it being too much effort and energy for him.

Im scared because his docs weren't too positive that he was going to pull through the infections and stablise again to walk or come off oxygen.

The past few days there has been small improvements in the fact that the infection is clearing. His breathing however isn't getting any better and he isnt feeling better inside.

The docs say that if he doesnt get in a better condition that he wont be put on the list as he wont be fit enough. so he could be on oxygen for the rest of his life

I guess i am wondering if anyone is in similar situations? or what it's like for people living on oxygen? if it restricts you to one room in the house? and what kind of life do you have living on oxygen?

if there is anyone who has had similar circumstances and has managed to get well enough to get a lung transplant?

the docs obvisouly won't commit to any answers just now as my dads situation is constantly changing.

I wish he could get fit enough to get a transplant, but im just not sure he's going to get the chance now. he is also a rare bloody type - which has its positives and negatives.

my mum has been spending eery day and every night with him, so she sleeps in the chair next to him holding his hand every night as she just can't go back to their bed and sleep without him in it. and when she leaves for a few hours to go home and get changed/have a shower/sort out things in the house, my dad gets annoyed with her leaving him.

He's a man's man so I know either way he is going to struggle with the any outcome that he is to live with. I have noticed him getting more and more depressed as each day goes on as he's bed bound and limited in everyway at the moment.

He hasnt been asking his doc about whats going on with him and the doc thinks its because he doesnt want to know. truthfully, I dont think he would be able to handle it.

Things are just really hard just now. we have such great support from family and friends. and my brother (he's 23 and im 24) he's being really strong for me and my mum.

I write all this down in my diary each day i go into the hospital, but no one answers back there, and I came across this, was kind of hoping there would be some answers here....

if you have got to the end of this novel, thanks for reading. any help/support/advice is apreciated.

Thanks

Julie

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geoff gurney replied on 06-07-2010 12:27 PM

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Hi Julie

Well Im very sorry to read about your fathers predicament. I cant say as im in the same situation but can say that I too recently started on oxygen 24/7 and where theres a will theres a way, as they say.

To be honest, i wouldnt be too hopeful of a transplant and if he does get offered one it will be because there is no other option as he is so ill.   Yes i applied some years back and was refused on the grounds, probably correctly, that my chances of survival were higher as a non recipient, using oxygen and exercise as a means of survival.

Like your father I was in denial for years because as a male i am very resentful of feeling vulnerable and dependant. It just doesnt suit some male psyche. Even now, after a decade of suffering, asserting oneself can be important but being helpless is something that has to be learnt.........it might be difficult to know when to 'pull his leg' about something for instance, but keep him in good humour if possible and life does exist after a spell in hospital..........they can be such depressing places, mainly through the ill people inside them.

The psychology of it all is important...accepying it, but remaining hopeful about the future as it will be the achievement of small personal goals that will become important, but sadly a reduced life in many ways.

Please dont accept my view as gospel.........im sure others will advise differently, with the emphasis on PR.

all the best........GG

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rita replied on 06-08-2010 12:33 AM

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Julie

So sorry to hear of your Dad's illness and yes it affects the whole family dreadfully.  I was a bit concerned to hear your Mum being at the hospital the whole time; she also needs to get a rest or will risks becoming run down and am sure the nurses would agree with that.

A few years ago I was put forward for transplant and had to undertake the pulmonary rehab programme and at the same time give oxgen for exercise and ambulatory purposes.  After a couple of visits to the Harefield 'wizards' it was decided that I was doing well on the 02 and by this time I was approaching 65 it would be better to wait unless my situation changed drastically.  Difficulty with transplants is that you have to wait for a suitable donor and could involve a long wait, due apparently to better road safety!  I was doing fine until an exascerbation last year and I ended up on 02 16/7 which I tend to use just at night. Then extra hours to go out and about.   If your Dad is going to use it 24/7 your supplier can arrange for it to be piped into different rooms so that is not a worry about carrying around everywhere.  If suitable Dad will also be able to go out and about with portable oxygen.

As Geoff said one of the biggest hurdles for Dad is the psychological one and he has to want to get better first.  I do hope you will find the strength to help him and your Mum and I trust that once the infections clear he will start to feel better inside too.

Do let us know how you get on?   and very good luck to you all

Rita

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helen replied on 06-09-2010 8:24 PM

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hi julie

sorry to hear about your dad and hope that he gets better soon..i am one of the lucky ones in that i am on the active transplant list i have been since last oct..was told i had copd 3 years ago i am also on oxegen..i also have a rare blood group but in my case it went for me and not against me i am ab pos..at the moment your father will feel ill and breathless it can take 6 weeks to get over an excerbation..i am not very good at letter writing but wanted to reply to you..there is hope out there and there are people who care.

all the best

helen

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jules1985 replied on 06-10-2010 12:30 PM

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Hey,

thank you so much for replying to my entry,

i said to my mum I had posted one on here, and said she should come on too, but she hasnt had time out of the hospital yet.

Since I last wrote, things have changed more positively. albeit there is still a very long road ahead.

The pallative nurses have been surprised an impressed at how my dad has improved since last week.

He has went from 15 litres of oxygen a day, to less than 8 and instead of the mask he has the little tubes at his nose.

His blood infection they also discovered is almost all out of his system, and he is recovering as well as he probably will get.

The docs don't think he will get too much better, his legs have got really skinny, and he is getting physiotherapy to help him try to get strength back, but also because his oxygen levels were so low, he couldnt carry himself.

The docs have told us, they can consider letting him home towards the end of next week, which means we have to get a hospital bed into our lilvingroom as he won't be able to get upstairs, he are also getting oxygen put into the house, and my dad will get a zimmer frame to move around if he can.

The worrying thing though is they don't know if he will get fit enough again to get onto the list. at the moment, he is too poorly so they cant consider it.

Helen - were you added to the transplant list after you were already on oxygen? or did you go onto the transplant list before you needed oxygen?

also what is excerbation?

Geoff, I think you and my dad would  get on well. He is still in his hospital bed just now, but he said he is getting very restless, and frustrated that all these adjustments have to be made to the house, and he isn't there helping the process, or being able to sort out a portable oxygen machine as he can't get out of bed and doesn't have access to things like the net. and 10 years without a lung transplant and living on oxygen is a lot better than I initially thought people could go with out the lung transplant.

My mum has been stessed and has been unable to get mor ethan a few hours a night sleep for 2 weeks now, so she has taken the advice of the nurses, and is coming home tonight to start staying in her own bed and getting a decent sleep. my dad is at a stage now where he doesnt need her there every hour of the day, although now dad has come to get used to her being there, he gets annoyed if she's away for more than 20 minutes!!! which he will need to get used to.

I do feel more positive as the nurses/docs didnt think he was going to make it and we have to look at how far he's come on in such little time.

just hope that things continue to improve and again thanks so much for your help. all 3 responses have been great for me and i will show my mum and colin as well.

all the best for you guys too xx

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rita replied on 06-10-2010 11:07 PM

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Julie,

Sounds like things are getting clearer for you and the family and I sincerely trust this continues.  Good to hear Mum is now getting her rest and you will have to monitor that she continues to get that much needed restv when Dad gets home.

An exacerbation for me was a repeat of the first time I was hospitalised with having virtually no oxygen in my blood at all.  It appears I am one of those who retain carbon dioxide and had a week in hospital getting my breath back and then told I would need to have 16 hours 02 a day.

Good luck to you all and do keep in touch

Rita

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geoff gurney replied on 06-11-2010 12:35 PM

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Hi Jules

just a quick message due to reading through the BLF annual review, Ms Janelle York of 'University of Salford' is conducting questionnaire re 'pulmonary fibrosis'. Whether this means she is the expert to talk to i couldnt say, but there is a fragment of info. for you.

Good luck to you and your dad.............GG

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helen replied on 06-12-2010 1:17 AM

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hi julie

when i went on to the transplant list i was on oxygen, but not 24/7 i was only on for a couple of hours a day..i am on more now...an exerbation is when you have a really bad chest infection that really leaves you feeling very breathless and tired..some people have extra anti biotics and steriods at home like me..i consider myself lucky i have not had an escabation now for two years not even a cold...as i said before i have been on the active transplant list now for 8mths..i had a call for a transplant a couple of weeks ago but alas the lungs where not suitable for me..but i am lucky i did get a call..your mum must get some rest..

all the best to you all

helen

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geoff gurney replied on 06-12-2010 11:08 AM

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Hi Helen

I cant really add to the transplant topic as I was refused on grounds of being too healthy, tho i would have thought that a necessary ingredient for recovery. No matter.  What intrigues me is the steroids that you have been taking for a couple of years. I have only recently been prescribed a maintenance dose of 10mg a day even tho they say that continued use can have side effects. Do you feel they have helped prevent a recuuring exacerbation?........................GG

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TOM THUMB replied on 06-12-2010 5:13 PM

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Hi Jules 1985

I just read your post last night and having been using this site as a guest for a number of years i felt i should join and reply to your post as your dad reminds me so much of myself and we seem to have a lot in common.Please excuse the length of the reply as i feel the more info i can impart the better informed you will feel.

I am 57yrs of age and married with grown up children (boy and girl)

I live in the Manchester area and have been attending Salford Royal Hospital (Formerly HOPE Hospital) since I was diagnosed in 2004 with pulmonary fibrosis.The disease  makes the Immune System think that your lungs are under threat and then the  immune system reacts and eventually scars the lungs leading to the breathlessness. (obviously this is the simple version from a layman like me)  :-))

 Like your dad I was a smoker from youth. (although this was ruled out as the cause of the condition).No one seems to know much about what causes it. I Stopped smoking as this is the first step to getting your lungs up to as good as they can be.

The illness really did not affect my lifestyle until about 2 years ago when i was medically retired from work due to breathlessness and the drugs i was taking . I have been on Steroids, Aziathropine (Immune suppressants),Losartan (for blood pressure) Carbocystine (for mucus relief) , Omaprazole (for stomach ), Adcal (for calcium) and Alendronic acid to aid bones. I have been on this cocktail since diagnosis and have been lucky that i have had no adverse side effects to date.

For about 2 years now i have been gradually getting more and more breathless and have been on oxygen starting off at 2 litres a minute as and when necessary gradually increasing to what i am on now which is 8 to 10 litres a minute 24/7. It is a bit of a nuisance but you soon get used to it.

My Respiratory Nurse at Hope Hospital has been brilliant (as has all the medical professionals i have been in contact with) i cannot praise them enough ,especially in these days of knocking the NHS. She initally got me on to a pulmonary rehabilitation session which is a series of exercises designed to improve fitness which in turn improves the lungs.I did this course twice a week and stayed on it over and beyond the designated period until i was not fit enough to go back.It was a great help while i could do it.

With regards to living with Oxygen - i would not be able to get on without it !!  Initially when going out and about i carried around in a rucksack type carrier a bottle called Freedom 400 which i used on pulse and at 4lltrs per min lasted me a long time but as time went on and on i needed more and more then the Freedom 400 wouldnt do.I now have, in the house, 2 converters that can release up to 8 ltrs per min that convert the air in the room into oxygen and i am connected to these by a tube like the ones you will have seen in the hospital.These are supplied on the NHS by Air Products who will come and site them and clip the tubing around the house in the room you require them in.I also use Liquid Oxygen which comes delivered every 2 weeks in large milk churn type containers which holds enough liquid oxygen to see me through the week.Basically i have 2 portable liquid oxy containers which i or members of the family fill from the large containers.The oxygen in each container lasts for around 2 hours so this enables me to get out and about.I cant walk too far so i use the car or have recently obtained a wheel chair which people push me around in ( they say i get on like the guy from little britain :-) ) Having this liquid oxygen is a godsend and it means i can get out to the pub every now and again to watch football or go quizzing etc. The only downside is it means i also have to go to the shopping centres as well.

Finally can i say that i too was put up to go on the transplant list and went to Wythenshawe hospital for a week where they did every test known to man on me - must have cost a fortune to the NHS - about 2 weeks after all the tests were done my family and me went to  meet the transplant co-ordinators and the consultant.Thinking it was to get all info etc and what to do when on the list , only to be told that they found  cancer on my left kidney, so unortunatly I could not go on the transplant list.

It was a real kick in the teeth to both myself and family at the time.The reasons for not going ahead with the transplant were explained to me and i could understand why.The thinking in our house now is that yes it would have been nice to go on the list - but being on the list guarantees nothing.We as a family are now comitted to ensuring i am getting the best quality of life i can get on oxygen and always remembering there are people who are worse off.

Living on oxygen and with this disease is difficult but easily overcome if one stays positive and has great support both from the professionals and a family like yourselves who care very much.I know that my Wife,Son and Daughter and extended family are supporting me all the way - so i will go on being positive and realistic and enjoy life to the full.

I wish your father well and hope he returns to good health as soon as possible and wish you ,your brother and Mother all the best.

I am off now to watch England v USA in the pub with my mates (even though i dont support England) but being a MAN UTD fan will cheer if Rooney scores !!

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helen replied on 06-13-2010 7:04 PM

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hello geoff

the only steriods i take at the moment are what's in my puffers, the tablet form i only take when i have an escerbation, i take them along with the antibiotics..but i have not had an escerbation in 2 years..i am on oxygen but not 24/7..i have liquid oxygen so that i can get out and about.

take care

helen

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jules1985 replied on 06-18-2010 10:44 AM

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Hey guys,

Well today is the day my dad gets out of hospital.

Much the same with regards to his health as it was last week. He has been trying to get out of his bed and walk the small distance to the toilet in his room, although he had to sit on the toilet for 20 mins just to try and get his breath back to a steady pace, so after this he finally admitted oto himself, that this is going to be a moutain he has to climb and nothing short of it.

He's looking forward to coming home alot, he thinks this will increase his confidence about trying to get better, but the zimmer frame is something he dreads using - i think due to it  being more about pride.

My mum is doing ok at the minute, she said she worries that my dad will get his hopes up too much that when he can't do something then he will come crashing back down. She's really not sure he will get on the list at all.

I try to remain positive, but not get my hopes up.

The hospital bed got delivered yesterday, it looks ok actually. I noticed there is a tiny little money penny spider at the end of his bed, that has made a small web, initially I was all ready to take it outside, but then I thought, it could be a sign. you know bring some luck to my dad while he's in his bed, so I have left it there just in case.

My dad's oxygen levels are changing almost daily depending on what he tries to do (re getting out his bed or not).

The doctor has said there hasn't been much more signs of improvements which isn't great although they have mentioned about the lung transplant a little more.

I've been trying to think of good ideas for us to do just sitting in at the weekend, as he wont be able to get to the pub for a while, and he used to spend a lot of the weekend in there with his friends.

Tom, thank you so much for replying to my post. It's really is a help to hear from someone who is going through the same thing.

i am hoping that we can set up the internet downstairs in our house so my dad can come onto the computer, i'll need to show him how to write on here, as I think you guys will help him a lot, plus it will give him something to do when he's lying in bed.

Tom - im so sorry to hear about the cancer, I didn't expect that at all. Do you have to get this treated now as well?

I had said to my mum last night, a lot of dad's disease was due to him smoking, and i have been so annoyed about this, my mum said to me last night that this isnt the cause of it, but smoking when you are told you have it isn't right. thank you for also confirming this, as I was (just to myself) blaming my dad slightly for getting to this stage - as I was blaming the majority of his disease on the smoking.

We are going to try and be as supportive as possible and make him comfortable, be there for him and try our hardest not to let him slip into depression.

thank you all again for your help. ill keep you posted next week as to how he is doing at home.

love

julie x

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jules1985 replied on 06-18-2010 10:46 AM

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oh and geoff...

re : Ms Janelle York of 'University of Salford' - I am going to have a look at this at lunch, hopefully not too late to find out something. she might be able to offer some sort of help too.

thanks

x

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TOM THUMB replied on 06-19-2010 6:44 PM

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Julie

So glad to hear your dad is getting out of hospital and home to his family and his comfort zone.

With regards to getting out of bed i know the feeling - every day it takes me a good half hour to get up and dressed and even the effort of going to the bathroom takes it out of me.I too have to sit for a while on the toilet to recover my breath back.I even have to put my oxygen up to 15 litres per min to help.So another thing your dad and i have in common.

As for the zimmer frame, then like myself. i am sure he will soon find out that if it helps him get around on his own any better its worth it, and pride goes out the window. I thought exactly the same as him when i first used the portable Oxygen and the wheelchair.

I am sure you and your family will keep your dad entertained at the weekends and if his friends are anything like mine they will be popping in to the house to keep him cheerful.

Julie they are not treating the cancer at the moment as it is in its early stages,looking after the lungs and keeping stress off the heart is the most important treatment for me at the moment.

Keep your spirits up Julie your doing a great job, and i am sure your positivity is spilling over to the rest of your family , especially your dad.

Looing forward to hearing how he is doing at home.

Tom.

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jules1985 replied on 06-22-2010 2:05 PM

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well

my mum has had it in writing that my dad won't be considered for a lung transplant, as they can't see his health improving to a point that he will be strong enough to survive the op.

if it's in writing, can this change if his health does improve?

I see my dad is still improving so I still don't understand it, it's so annoying.

he hasn't need his oxygen on all the time and he has walked back from the toilet once, he's getting his appetite back so it hopefully won't be too long before the weight goes on, but i suppose his breathing isn't imrpving and his anxiety is pretty bad at the moment.

it's unfair.

I still don't believe that this is going to be how my dad is going to be from now on. I know we would adapt, and we would be able to get him around. it just doesnt seem like this is how it's going to be from now on.

maybe im in denial, i don't care. as long as I stay thinking positive, i still think there's a chance.

Tom, keeping the stress from the heart is what Ive heard my mum say a few times about my dad now. so I hope things are OK for you.

I can't say thanks enough to everyone, it's got to the stage now where I don't even need a reply, just want somewhere to write and maybe someone will be listening.

Julie x

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Pollyanna replied on 06-22-2010 6:08 PM

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I'm listening and you're right to keep on being positive for your Dad. He's lucky to have you.

Keep on believing!

Love Paula x

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rita replied on 06-22-2010 10:54 PM

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Julie - we're  listening love.  You must, must stay positive for your Dad and yourselves

Rita x

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TOM THUMB replied on 06-23-2010 12:23 PM

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Hi Julie

I was so sorry to hear that your dad did not make it on to the transplant list at this time - i am sure though that if his health improves and he is strong enough then this option will be opened up to him again.

Not needing his oxygen all the time is a good sign and getting his appetite back will help a lot.

Julie keep your chin up - your good spirit will transfer onto the rest of the family and your dad.

One thing i have noticed about this site is someone is always listening so come on anytime and vent your spleen !!!

Tom

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geoff gurney replied on 06-23-2010 9:08 PM

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Hi Julie

I shouldnt dwell too much on the news and disappointment that a lung transplant refusal might cause.  I speak from experience as I was told i was too healthy but others have been told they are too ill, as you need to recuperate etc, so its really a 'catch 22 ' situation. In other words, the recovery rate is so poor they really dont want to risk it. Thats my view anyway.

As for denial, well , no bad thing, a great source of motivation to improve...............and things will, the trick is not to panic!!

Anyway, good luck to you all, especially your dad.............................GG

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jules1985 replied on 07-27-2010 2:01 PM

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Hey everyone,

Well thankfully things have kind of stablised with my dad.

What do people think about my dad being on 6ltrs oxygen per minute, and not really able to walk at all - just is in his bed most of the day, or we take him out in the wheelchair?

Also - how much ltres of oxygen can you go up to per minute?

there is now the lessened pressure of my mum and dad paying the mortgage as the insurers are going to pay for it now...which is a one less worry, but then you think - well whats their impression of how long my dad has to live?

it's been great having my dad back in the house, but i think he's worried as to how long he would have left to live if he won't be getting the lung transplant...

does anyone really have any idea/experiences of this situation?

you have all been great with your help and advice so far, that's why i think it's best to come here to talk about it.

i also printed off the forum i wrote, and let my dad read it and he felt as though he learned more from the print off than he has from his doctors, so he was very grateful.

thanks again

Julie x