IPF and right side heart failure

[Vicky4]

Hello iv not wrote for quite awhile as my dads ipf as been quite stable but in the last 2 months he has rapidly got worse and a lot of symptoms I was just wondering if these are normal symptoms and if anyone has any advice on how to keep him as comfy able as possible, he is now mostly bond to the house or chair he now can’t manage to go upstairs to the toilet on his stair lift anymore as the walk which is about 8 foot from his chair to the stair lift to take him up to the toilet when he was going he was so out of breath he couldn’t function, he was seeing white zig zags and passing out his heart rate was through the roof and his blood pressure low when checked this has happened quite a lot and had a few hospital admissions and they’ve said he’s getting worse, and when he just stands he has the same problem, his appetite is practically baby spoons and he has lost so much weight it is scary he’s gone from a 13 stone man to just managing to keep to 9 stone at moment but losing lbs by the day he struggles sleeping at night but after some happy pills from the doctor he’s now sleeping abit better but the 2 different types of steroid me he’s on isn’t doing anything for his appetite anymore but think there just managing to help him get out of bed every day, the district nurses come out to help with his bed sores and the palliative team come out to help but it’s so hard watching him struggle so much and just want to make him feel as comfortable as possible, I can’t take away the struggle he’s had and going through everyday but if anyone has any knowledge or suggestions of things they’ve had or tried I could try in that way he is on 24 hour oxygen aswell Thankyou vicky xxxx

[Wellyboot0_0]

Hi Vicky, Im so sorry to hear that your dad is so poorly. My dad is just waiting for his diagnosis but everything is pointing to IPF. I cant help with suggestions for making him feel better as we are so new to all of this ourselves, but I just wanted to offer my support as one daughter to another.

I love my dad so much even though he is a Grumpy wotsit and I cant imagine how hard it is going to be watching him struggle. Its so difficult seeing the once strong determined man I grew up with struggling to do the simplest things.

I dont know how long your dad has had his IPF but if he is confined to bed I am guessing it may be a while. I really feel for you and wish there was something I could say or do to help. The only thing I would say regarding eating is that if he is only managing a few spoons of something, make sure it is something he likes. Dont battle with him to keep it healthy and nutritious just let him enjoy it. The same with his 'active' times, let him enjoy the comfort of being with you and try and make the memories last.

My dad really struggled after seeing the consultant and although he had been told by his gp that the evidence from the hospital was pointing to a possible diagnosis of a condition that couldnt be cured, it was only after seeing the consultant that he hit a brief moment of despair and shouted at me that he was dying and that was it. Since then our conversations have been more open and he is actually now more positive. He was scared, he was bottling it all up and just watching endless you tube videos of everyone elses stories. Now he is on here, and we are talking about everything. Talking openly has really helped us in these early stages, it may help you too if you havent already.

I am offering you big hugs and a listening ear if you need it and Im sorry I havent got anything more practical to offer xxx

[Vicky4 in reply to Wellyboot0_0]

Thankyou for your reply it’s really nice to speak to someone else as a daughter going through the same my dad got diagnososied 2years who and after a year ended up on 16 hour oxygen and now 24 hour oxygen he has fought a good battle but now he’s really stuggling he always but I brave face on but now the energy is not even there to do that he shouts and losses his temper quite a lot but we deal with it because we love him and this is not him it’s just the mixture of emotions the consultant was very truthful last week on my dads condition, ask your dads consulatant when he’s diagnosed if he could start ninteadib or pirodone I think it is there are two tablets to slow down the progresseion, my dad really started going down hill when he came off these and also had a slight lung function improvement on them but the side effect where too much for my dad as he has right heart failure so both combined added more side effect to Handel, never take no for and answer I battled for everything we have I battled to get oxygen and it was only when I had to actually shout for someone to listen (which isn’t me ) and when she did the test he was servley hypoxia and had started damaging some organs, where u live they might be brill but I had to battle bug don’t give up cos that strength u have will help ur dad to gain the strength and fight with u, it is a horrible disease but if we all keep fighting against it one day we hope for a cure xxx

[Wellyboot0_0 in reply to Vicky4]

My dad has already had a double heart bypass and they have told us that one of the two tablets they can give isnt suitable because they dont give it gor patients already diagnosed with heart problems. I keep forgetting which is which. I consider us very lucky after hearingvyour oxygen story. My dads oxygen was fitted up before he even went to his appointment at Papworth. His sats have been much better since then but he is still very breathless. Im hoping they refer him to the breathing classes as Im sure that will help x

I hope you get some relief for you dad, always here if you need to talk, as a daughter it feels weird that the tables are turned and we are looking after them when it has always been the other way round xx

[Vicky4 in reply to Wellyboot0_0]

I agree you with you that’s why I think we try so hard for them because they have always done there best for us and we just want to do the same now I hope everything goes well with your dad, they have some really good reabillitation programmes and something will be offered xxx

[Johnsel]

Hi Vicky4 really sorry to hear of your Dad’s struggle even more so as my husband has IPF and is stable at present and reading your post makes me realize what may be his future. Sorry not to be of any practical help for you. How long has your dad had IPF? Keep strong. Carole xx

[Vicky4 in reply to Johnsel]

He got diagnosised about 2 years ago but was diagnosed with copd about 10 years ago and now are saying because they didn’t check up like they should cos my dad was a very healthy man he could of had it longer , but when he did get diagnosed he started the ipf medication nintenadib and pridifidon not together u can choose from either or try both if ones not working but my dads symptoms were to hard for him to handle and had to go off both that’s why now he’s progression got quicker I’m so sorry about your husband and if u need any advice I would be happy to help if can and for you too it’s hard on the people who have to watch and you sound like my mum a very strong and supportive wife xxx

[Piperava in reply to Vicky4]

Hi so very sorry to hear that your Dad is so poorly. My husband has IPF and he has been on Mycophenolate for just over a year he takes 3 tablets twice a day and they seem to be keeping it stable (fingers and toes crossed). It is such a horrible disease and my heart goes out to you. I can't help thinking that is what is Infront for my husband. It is shocking that you had to fight for the oxygen, my husband was lucky as it was noticed his oxygen levels fell quite a bit on exertion so was prescribed it. Take care and try to keep your chin up. ❤️💖

[Ergendl]

((((Hugs)))) Vicky4. You are both in my thoughts and prayers.

[Billybob10]

Hi vicki.

I’m 75 with IPF.Keeping a positive attitude.Had it for 10-11 yrs now.Full time oxygen.Level 4 at night gives me good night’s sleep.5-6 during day.Pump is in next room so can’t hear it.cereal for breakfast,half size meals fo lunch and dinner.Tense muscles regularly to keep toned.Do Buteyko breathing method.That’s a real help.Use toilet next to bed and urine bottles too.Bedridden mostly now.Gave up car etc.

Managing very well keeping fingers crossed.😃👍.Bill.

All the best to you and dad.

[Vicky4 in reply to Billybob10]

Has it affected ur heart aswell billybob 10? Keep fight thinking of you x

[Billybob10]

Hi Vicki,Just prior to IPF diagnosis I had major heart surgery for an aeortic aneurysm and had a new heart valve made during that op.made from horse heart ligament which does not get rejected.This means my heart is far stronger than it ever was and should last 30 years!All my organs are sound and strong.I might be an exception.Since diagnosis I have researched everything about IPF.I take Serrapeptase each day.This was found to reverse fibrosis in humans.Circumin also stops fibrosis.

Hope this helps.Good luck.Keep positive.Bill.

[modelrailway]

I am 84 years old and was diagnosed with IPF in 2013. Breathlessness only became a real issue about one year ago. Then in July 2018 I had a stroke (bleed) which upset the applecart! My ability to walk has reduced significantly, from several minutes to virtually nothing. I have been on nintedanib for just over a year

I have oxygen alongside my bed which I only use about one hour a day. I also have an ambulatory concentrator which I find enormously comforting. My worse time of day is first thing in the morning and getting and moving from my bed just a few feet to the bathroom. Takes a lot of effort and discomfort.

Your father's deterioration seems similar to mine recently, although I've still got a little way to go.

I have bought an adjustable chair, which is a great improvement. I have also ordered an adjustable bed, but this is expensive. I have an appointment with my consultant later this week which might lead to some sort of prognosis.

This note is all about me, and you are looking for some feedback - which I'm unable to give at the moment. I wish you well in your endeavours - I do know how it effects you as my wife is in the same situation.

[Vicky4]

Would just like to thank everyone for the help and support the other day , but with a broken heart I just want to let u all no my dad passed away yesterday he has fought this horrible disease and couldn’t fight any longer Thankyou again for all your help and support when we was trying so desperately hard to fight that bit longer xxx

[HungryHufflepuff in reply to Vicky4]

I am so sorry for your loss 💐