Hello all. I have not posted for a bit so doing an update. My first diagnosis was about 4 years ago when i noted getting out of breath. A year ago the CT scan reflected the UIP was advancing and destroying more of my lungs and I was given six months survival. At that time the oxygen went to full time at 3 ml. As the months passed the oxygen went to 4ml. The past month I seem to be getting worse as I can only do very limited activity and get out of breath. quickly. My doctor has never discussed any further loss of breathing function and he feels no one one knows how long I may last. Very unpleasant situation and depressing but I do what i can. My wife has taken over most in and outside duties and that is good to see things done but makes me feel sad I cannot do anything to help. A day at a time seems the plan.
UIP UPDATE: Hello all. I have not... - Lung Conditions C...
UIP UPDATE
Yes you hit it right on the nail one day at a time is all we all can do biker .Sorry to here you have gone worst but you got a good one next to you .good luck
Hello oldbiker,
Things must be very difficult for you - "a very unpleasant situation and depressing." It's hard to watch how our illnesses affect the lives of those closest to us, not just us. I really feel for you when you talk of feeling sad that you can't do anything to help. You're right when you say a day at a time seems the plan - but not easy either if you're used to planning ahead.
Are you using all the local services available to help and support you and your wife? And are you receiving the financial benefits your entitled to? They can't change your situation but can ease the load a bit. Perhaps speak to your GP.
Your world's become a much smaller place than you want it to be. A good time to learn to be short-sighted and to get pleasure from the little things if you can. And as David says you've got a good one next to you! One of the good things -? - about living with these conditions is that, if we're lucky, we get closer to the people we're with and love.
Don't leave it so long before you post again, even if your updates aren't very up.This should have lots of smilies in because it sounds a bit miserable but I still can't make this computer do them. Imagine a big one!!
Love to you and your wife, Sue x
Thank you for responding and some positive thoughts. we do get more into enjoying the moment and I am glad I enjoy reading, the TV and computer so feel more comfortable being at home. It seems I go along about the same and then hit a setback and never know when it will get much worse. I have lasted longer than predicted so enjoy what I can. The good news is that so far i have not needed any hospital time which lets me enjoy home. My wife is very faithful in my care and does not complain about taking up chores I previously;y done we have not reached out to any local support group as not feeling a need. My pensions allow us to live comfortably which is helpful. All in all it is good to get support and share with others. Thank you again for your replymessage as very much appreciated. GARY
You sound as though you and your wife are a great team who have a difficult situation pretty much sorted. If it's one day at at time, Gary, enjoy tomorrow. Iris it today? x
Hi Biker, yes a day at a time is a good idea, well that's what I do and enjoy most of them. Like you you my con gave me til Christmas 2014 and I'm still here! Also like your wife my hubby is marvellous, it must be very hard for them to see us struggle. I have got over the depression thing (thankfully) pace myself and just do what I can. It seems to work for us and I'm sure it does for you. Take care Xx
Dreadful situation but you are a great team - you both sound amazing & your wife is such a rock for you. It's so wonderful for you & you can enjoy such a lot together still - as you say, one day at a time - hope you have many more years to share with each other. All best wishes to you both x
Hi Oldbiker, my name is Lynda, I too have UIP. You don't see many of us on this site. Or at least I haven't.
I'm glad your doctor doesn't discuss your further life span. Only the good Lord knows the day and hour. My doctor reminds me of that often. She will not make any guesses. But I'm sure you're depressed and maybe even scared and that's okay! You're not alone. it's very frustrating not to be able to get up and go. Our brain's think its a good idea but our body doesn't.
Your fortunate to have such a great support system and best friend in your wife. Enjoy your time with her.
We're all pulling for you?
Thank you Lynda s it is comforting to know we are not alone in this situation.I was given 6 months a year ago by a rather young Doctor at the VA and he was very uncomfortable and suggested I get further treatment from a local Doctor. The older, experienced local Doctor was glad I had researched UIP and knew it was basically untreatable and even the cause was not confirmed. He felt I should last a year or longer and further stated he believed it was in the hands of God but he would keep me from suffering within his Medical capabilities. Yes, at times it is a little scary and not easy to accept my restricted life but I reflect on a life well lived. I hope you have found comfort and making the best of each day. You have been a blessing in sharing with me. GOD BLESS Gary
I have been prescribed OFEV medication (that is used in IPF patients). OFEV will not stop the disease but is hopeful to slow down the progression. Has any one talked to you about it. It might be worth asking. I started it 12 days ago and so far no side effects. I am assuming you live in the USA. This drug was approved my the FDA in Sept or Nov. 2014 in the USA. I think it's in the trial status in the UK.
Hello Lynda. I have not posted for a bit so a update is in order. Since early May the Doctor has submitted scripts for Esbriet but to date in early June it is still under review so wait and see,. I recently feel much worse with more breathing problems and choking. The Doctor has started me back on prednisone dose pack of 30mg for 2 weeks and then constant 20mg vs the current 10 mg. I have gained a lot of weight and dread the prednisone but such is my lot. My oxygen is to be turned up to 60 ml vs current 40ml. No discussion of what the end looks like but I am definitely on a worsening time. I do hope the meds are helping you and not much problem with side effects. Both the OFEV and ESBRIET seem similar so doctor choice I suppose. Keep fighting the good fight as each day is precious. BEST WISHES GARY the oldbiker
Old biker, I've missed hearing from you. I'm so sorry to hear you have not been able to get the Esbriet. Jumping through the insurance hoops is a full time job and a real test of our time and patience. I struggle with my doctor's office incompetence.
I don't know if the OFEV is working but I feel good and I have been to a few Dr's lately, they say they hear a little crackleing but not much.
How long have you had the UIP symptoms? Mine started in Sept of last year.
That Prednisone can be a blessing and a curse> When I talk it I want to eat things I would NEVER thinking of eating. Like 8 Ice Cream Drumsticks...who does that (at one sitting) I have heard that this disease goes in stages. Downhilll and then it levels off. I hope you level off soon.
Gary, keep in tough and stay strong.
Lynda
Hi Lynda. Well another week is passing and the heat is upon us in the Midwest so being stuck in the house is about where I belong. The Esbriet finally arrived by UPS about 6PM on 15 JUL so yesterday the 16th I started the new medication. So far no issues and I do have hopes it will stabilize me. It appears pretty hard to see progress so I will just ride it out. The Doctor has increased my oxygen to 6 ml so the oxygen service comes today and will give me new machines capable of that output. The support on my medical needs is good but there is only so much that can be done and I try to be a diligent patient. I hope your seeing better times on the OFEV but it is hard to measure what results we are getting. Hope you have a good weekend and feel better. Best Wishes GARY
Lynda, i had replied earlier but wanted to let you know my current status after YOU motivated me to try and get some help. I had talked some with the Dr. 2 months ago on the news meds but it was left up in the air mainly to see if he could get some help on funding. After your comments I got busy on research and find there are 2 new FDA approved drugs for our condition. One of course is the OFEV you are now on and the second is ESBRIET which has about the same characteristics. Just on a chance I checked the Retired military pharmacy supplier which is Express scripts and they show both drugs with a cost to me of about $25. per month. The cost factor is handled. i contacted my Doctors office and they are getting a prescription started to ESBRIET which the Dr. prefers. I am pretty well advanced so it may be too late but i will give it a try. Thank You so much for getting me motivated to at least try this. Time will tell and I hope you are seeing some positive results on the OFEV. THANK YOU! GARY
1st Post on my lung condition,sorry if very long post.
Inclusive results from Oxygen assessment but belive that I still need oxygen for walking and other activities
IPF - Acute Exacerbation in UK
Querying Loss of Oxygen Flow In Tubing.
