Hello one and all, I have found all your Posts so helpful, thank you. I am here for my husband, he has IPF. He has only been diagnosed since September. The GP just said you have growths on your lungs, come back if you get breathless.!! I was fuming,, I am a qualified nurse,Medical and Psychiatric. It took me a long time to get him to understand there was something wrong,he was in total denial. It has damaged his heart as well and he is having many tests. His CO2 levels in a 2 min walk round the Out Patients Dept is 89%. If he exerts himself his BP goes sky high. He always had very low BP, now on Meds but it is fine is he just walks, can't give him anymore Meds or it will go too low on resting. He feels no pain or breathlessness, he thinks he is fine and wants and tries to do everything as normal.!! I have known for years something was wrong, mostly because of his strange outbursts of abusive verbal behaviour. Especially after landing from Australia last May, when he tried to mow down a load of people with the wheelchair in which I was sitting. I have Post Polio and am wheelchair bound most of the time.
The consultant.......!! said he is quite bad, looking at his HRCT scan. He is with Cardiac Dept for his heart.
He did the 6 min stress test, he lasted 2min 5 seconds and they had to get him off as his heart rate went to 350. His BP 240/130.
Please, is there anyone else out there who feels nothing? I can track this back 10 years, 5 years pushing the wheelchair and complaining he sounds like Puffing Billy behind me. I stopped him pushing the chair 2 years ago, Except in emergency. I now have my NHS chair, wonderful, I am able to get out. But I can't lift it into the car, so HE does!!! I am getting ramps next week.
I feel I am becoming responsible for his illness as he ill not take responsibility himself. I have enough trouble managing myself and the home and cooking.
Its just, he does not feel ill, even when he is collapsed on the kitchen counter unable to get his breath. He just brushes it off.
He has NEVER been ill in his life, never even had tummy ache or a cold. He is 72 now.
His father died from IPF and we found out a few days ago that his uncle also had it.
Your Posts have help me understand more of what you all go through and that is so helpful. But how can a man get so sick without any symptoms? Kindest Regards Kathy
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Kathy, I suggest you contact by phone a BLF nurse, they come into contact with many patients with varied conditions but also people can vary with the same condition. Even if they have not come across a patient without pain or symptoms, maybe they can point you in the right direction. You have my sympathy re the husband you feel like kicking up the .... when you are ill yourself. Mine is ~~~~~~****** without the excuse of illness. Hope things improve. Love KatieJJ
HiKatiejj,lovely of you to reply, I did actually talk to the BLF nurse some time ago, we had to wait 5 months for an appointment, they having "lost" the first fax letter, I actually saw it be faxed?? but after 6 weeks I rang and asked where he was on the list and they said they had never had a letter and his name was not on the list at all!! I trained at this hospital and I know what happens to referrals, when there are too many!!
That is when I rang the nurse and she told me to write to the consultant and ask to see him urgently. I did and we did, but to be honest, he was useless. Gave us an old photocopy of some lungs with a few dots on and said this is what it is!! Nothing we can do. See you in 4 months.
I trained here I told him, I know what IPF is. Nothing!
His BP goes high if he exerts himself, so the GP has told him to do nothing, walk on the flat only.
Your right, I must phone her again, if only to find out if oxygen will prevent his BP rising, I can't do everything. Love Kathy.x
He should be seen by Ipf specialists,sounds like he should be on oxygen therapy,there are NICE guidelines on this disease ,just google NICE and IPF,there is generally little pain with IPF,it's mostly SOB and coughing.IPF can also cause heart problems.Sounds like you need help,speak to social services.Best of luck Sooki.
Thank you Sooki, I will check that, his consultant did not seem interested in Oxygen therapy, mind you, he did not seem interested in anything much, he must have been 80, he could find nothing, could not work his computer either. Love your dogs picture, we have a Shih-tzu called Theo, he was a rescue, he is 9 this year. xx
Me again, sorry he sound like a right grump, he is a lovely man, the perfect gentleman, loving family man, we have been married for 44 years this March. Regards Kathy
Your consultant must be a specialist ,or he has a duty to refer you to one who is,oxygen is a must if sats dropping below 88 when walking,should always be kept above 90.my dogs are Shorkies,Shih tsu mum,Yorkie dad,just coming up to 5 years this month.Sooki.
Hi Sooki, they look so cute, I will try and put a picture of mine up as an Avatar. Thanks for that info, very useful, I have ordered an Oxymeter. He has two heart tests coming up on the 23rd & 28th January, as he was unable to complete the stress test on the running machine. Love and thanks Kathy
I have had IPF for a number of years. I was diagnosed in 2005. Because I had never been ill, I put my breathlessness down to being unfit. I was in complete denial. I would go to the gym and do aerobic exercises in order to make myself fit!. The worst thing I could have done, without oxygen. I started to do some research and my Consultant prescribed oxygen. That was my lifesaver. I had always had very low blood pressure and by now it was very high. I have since been diagnosed with Pulmonary Hypertension, so it has now affected my heart as well besides the lungs. Doctor says that I must keep on doing exercise, but must monitor my oxygenSATS. Way back, when I was diagnosed with IPF I thought I had only two or so years to live. Was worried, as my husband who also cares for me, suffers from Ankylosing Spondylitis and is in constant pain. He does not get the injections that he needs to relieve the extreme pain. On my bad days I can see that the things he does for me are very hard as he is in constant pain and the strong painkillers he takes make him sleepy, which could be dangerous when we go out. We each have to do caring for one another, but I can see now there will be a time where one of us will not be capable anymore. I am with the Royal Brompton, thank goodness, and have the best of care, even though there is no cure at the moment. Please get your husband to get an appointment with a Consultant as soon as possible.
This Forum is tops! Even though I do mostly reading the posts, and would like to thank everyone on Healthunlocked who sends posts regularly for all the help and information I have had. Much Appreciated!
Hello Little-Lung-Lulu, Many many thanks for you reply, I have read it to my husband, he was so pleased to hear that he is not alone in not realizing that he was ill. Me also. I am so sorry your both poorly, I am also, so I do understand, we look after each other also.
You are lucky to be under The Brompton Hospital, I am under St Thomas for my Post Polio, they are wonderful. My husbands consultant seems disinterested in him. He gave him no advice at all. When he walks his CO2 is 89 to 92, his pulse is 103 at rest, just making a cup of tea his level is 90. God knows how low it goes if he exerts himself His heart is damaged also, he has two tests due in 10 days. Hopefully we may find out more.
I may ask the GP to refer him to another Consultant. This one even disputed my BP readings, in a letter to our GP. It makes me so angry, I have a degree in nursing and trained at our hospital and the university. I won awards, went to America on a student exchange, all from our hospital!!
I feel guilty for not spotting IPF, but it was not something we came across really. I knew something was wrong for 3 years, I had him tested for all sorts.
His GP knows his BP goes high so told him to walk on the flat and only for 20 mins twice a day. How will he spend his life? sitting down? doing nothing!
Please can I ask you how the oxygen helped you, did it allow you to do more? How do you use it in your everyday life to help you?. I may be a nurse, but have not had to deal with patients living with it at home with oxygen. I hope you don't mind me asking.
Like you I am so grateful for this forum the posts have been so helpful.
Thank you once again for your reply, it can't be easy for anyone to "Tell all" about their condition, especially as there is no cure. Love Kathy x
Hello Kathy, The story goes like this. When I went to the doctor, as I had another urinary tract infection she prescribed an antibiotic called Nitrofuriantoin. Had to go back the next day as I had an awful chesty cough, so some penicillin was prescribed. Unbeknown to me the Nitro..was silently damaging and scaring my lungs. This procedure repeated itself over a number of years with neither me nor any of the doctors picking up the fact that every time I had a UTI I also eventually came down with a lung infection and complete weakness in my arms and legs. The iPF diagnosed was with no known cause. Your hubby's IPF sounds like it might be Familial Pulmonary Fibrosis. I think they are doing research into this type of IPF.
Oxygen was eventually prescribed to me about 4 years after diagnosis. I was getting more and more breathless, but only on exertion. You see they test for Oxygen with an Oxymetre when you are sitting down, so I was always higher than 90, but out of breath when I just went to put the kettle on at home. Eventually I was sent for the six minute walk and was put on 2litres O2(oxygen). In the beginning I used the tank mostly to do house work, gardening and walking. Kathy I attend the outpatient section and have to see both the IPF consultant and the PH consultant as these are two conditions, but they do consult with one another. The IPF consultant prescribed 4litres of oxygen up to 10hours a day. There are a lot of options for your hubby as he can also have a portable concentrator that runs on battery and that you can recharge on mains. This is a little wheelie trollytype one. I only get this one for my holidays as I don't have to get a refill then. I prefer to lug the small portable one on my back when going to shops. If you have enough room you could get the electric concentrator that is not portable, but they run a wire all through the house.
A lot will depend on your hubby's o2 needs and if he is a C02 retainer there might be a problem with giving him oxygen. I hope the tests go okay. Remember everyone is different. The nurse will assess his needs, especially if he has to walk up stairs. Something I just could not do! There are also IPF meetings you can both go to for support. Phone the BLF to see if there is one in your area.
Hi Little-Lung-Lulu Thank you so much for your reply it is a great help to us. We don't have a nurse to help, in fact nothing for 4 months. Except his heart tests, he lasted only 2 min 5 seconds on the stress test, so they have to give an injection of radio active stuff to make his heart act as if running. That should give us some info about the damage to his heart. But they do not seen to be looking for PH. When I asked the consultant, he just shrugged and said "its rare". No echo, nothing. Like you his BP has always been so low.
I will crack on and monitor him, see how it goes with his O2 levels. Wait for all the results then ask questions!.Your so kind and thank you for all your advice. Love Kathyx Keep well!
Hello again Kathy. It has been a pleasure to share my story (although very long-winded). On this forum there are people who write in regularly and have done a lot of research. I tend to look for the information and keep what I need. They know so much and have also been through some pretty hairy experiences. The Consultants in the end should be able to help you. As you said, get all the results and then ask the questions. Look after yourselves, Love Isobel.
Thank you for sharing your experiences, I know its not easy. My sweet husband would NEVER join something like this forum. But he will take advice I find for him. It is a horrible illness that can allow one to go so far down the rocky road and have little idea something is wrong. Then to find there is no treatment. He being my carer has taken it toll on him. he was happy and healthy to care for me. Just shows, Best laid Plans of Nice and Men ! He is devastated he can't help me. Still, we are making changes. We bought ramps for my electric wheelchair last week so I can get it into the car myself, it is so heavy. We already live in a small bungalow, 75 yards from the sea. We have many things to be grateful for. Take care Isobel. Love Kathy x I will keep you up dated.x
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