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Being discharged with ipf – is it normal
Hi, I have posted on here a couple of times in the past. My husband was diagnosed with Idiopathic Pulmonary Fibrosis four and half years ago. His last visit to Aintree Hospital – which is centre of excellence for respitory diseases – was in February. According to the letter sent to our GP his FVC has reduced by approximately 7%, and he should be seen in six months. He recently had a chest x-ray which showed scarring or shadow at the base of his lung. Our GP was trying to get him seen by the respitory team at our local hospital because he is unsure if it is just the fibrosis, but suggested we chase up the appointment with Aintree which should have been last month. His main problem at the moment is weight loss, he now has a BMI of 18.4 and weighs 60.4 kg – he is 6ft 1″ tall. Today our GP telephoned my husband and told him that both Aintree and our local hospital have both discharged him! Has anyone else been discharged by their pulmonary doctors. Could this be a National Health ploy to reduce the list of people waiting to be seen. It’s not like he’s recovered or on the mend.
I would be interested to hear if anyone else has had any similar experience
Marj
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9 Replies
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Sorty to hear of your husband bribg discharged with IPF. IMVRECENTLY DIAGNISED N DO NOT WABT TO TAKR OFEV. MY FEARVISBILL BECDISCHARGED FOR NOT TAKING OFEV. MY OTHER CONCRRN IS EXCESSIVE SLEEPINESS. HELP
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It’s been a couple of months since you original post. How is your husband doing?
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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!
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Be more aggressive with your medical providers. Make sure they know that you want care and are willing to do what they ask. Has anyone given you a reason for being discharged?
Tell them you want to be seen again and be enrolled in any IPF programs they may have
Make and keep your appointments. Do what the Doc’s say.Dunc
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Marg is your husband on ofev, where is Aintree. It doesn’t seem right that a pt with IPF would not be followed by a pulmonologist throughout their illness.
I was dx with IPF about 1 1/2 years ago, have been on O2 24/7 since. I think i am doing OK, you never really know as there is so little for real info out there.
I presently live at 7500ft altitude and am thinking of moving down to 4500ft, i love where i live and am not sure but if it would help with my illness i would move. Has anyone had this issue, or noticed doing much better at lower altitude.
To return to marg, i see the pulmonary clinic and have blood drawn every 3 months. Don’t always see the doc, but work out to about every other time. hope you husband the best….hand tough. Mike
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Why is my post waiting for moderation, what does that mean?
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Mike:
While I do not want to distract readers from the primary topic in this forum thread, I do feel I can offer some first hand experience regarding your question about altitude.
Up until January 2020 I lived at 7000 ft elevation in eastern Colorado. During my final days there I would become breathless climbing stairs. I often had to stop and catch my breath. I moved in with my daughter’s family in western Idaho that year. The elevation here is 2070 ft. While I didn’t notice any difference during regular activities I did notice that I could climb from one floor to the next without becoming breathless.
There are a couple of things that might also affect this outcome. First, I receive much better nutrition here. Second, this situation here pulled me out of mild depression.
I have not seen a pulmonologist in over 18 months. I signed up with one when I first got here and liked him a lot. He took copious notes and seemed genuinely interested in my case. I had a PFT and CTSCAN before we met. I had a followup scheduled about six months later which his office canceled and rescheduled about four months further out due to the pandemic. About two weeks before that appointment I received a letter from the medical group that the doctor was retiring and my appointment was canceled again. I selected a new pulmonologist from the list they provided. She has by far the best credentials. I couldn’t get a appointment until 6 months out. When it got close to time for my appointment I went online thru the patient portal to see if I was scheduled for a PFT before seeing her. There were no appointments listed so I called her office and learned that due to Covid pandemic she had been temporarily reassigned to head the hospital ICU. All her appointments have been canceled.
My IPF has progressed very slowly over the years. I was diagnosed in 2007 at age 67. I am now 81 and still able get around on my own. So I am not alarmed about not seeing a pulmonologist for awhile. My PCP listens to my lungs with a stethoscope and says they sound about the same as my last visit.
You should do better at lower elevation.
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Hi Marg
I too am an NHS patient. I was sent for a CT scan at the beginning of December 2021 with dye injected because my FVC had declined quickly and I too had lost weight. The CT scan was with the addition of a dye to contrast the areas of the lung where there is fibrosis and to show up if there was anything else going on. I also had blood tests. Thankfully it was just the progression of the disease and nothing else which was my worry.
60.4 kg is only around 9 stone 5 pounds so your husband is very underweight for his height. As I guess as your husband is attending Aintree hospital you are near Liverpool perhaps you it might be worth seeing if he could transfer over to Wythenshawe Hospital in Manchester as its only around 30 miles away.
I am moving from the Churchill in Oxford to Wythenshawe as I work during the week in Stockport near Manchester and Wythenshawe does have a good reputation.
Very best wishes to you both.
Bernard
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I can’t believe that there is not a pulmonologist following your husband. I don’t live in England what is the US but I was diagnosed in 2018 and still don’t have any symptoms like shortness of breath or cough or loss of weight. They initially did an x-ray thinking I had pneumonia but found that there was other things in my lungs and that’s when I did a CAT scan which showed Phibro fibrosis in both lower lungs as well as honeycombing and I think Decarla opacities. I had multiple test there after which included Broncoscopy with a biopsy of my lung also a test to see if I had Gerd GER de which I do when I put down a metal detector down through your nose into your stomach for 24 hours. I am very lucky so far because my oxygen levels are still normal but my chest is slowly getting worse. Frankly I wouldn’t even though I have this disease if it weren’t for the guys decide to do the x-ray of my chest. So they don’t know if I have IPF or UIP but now since I change pulmonologist he is saying that he really doesn’t make a difference now with terms of antibiotic medication. It’s very interesting to me that they say that oh you have 3 to 5 years one in fact into thousand 18 my chest was full of the stuff so I didn’t come all at once it must’ve been going on for years. I have a Ankylosis spondylitis say sake probably is contributing to this. All I can say is your day your husband needs to see a doctor and you should also have what we call in the states palliative care. Here it is free where you take him in and check on you etc. I also help you with making decisions of what’s best. I also suggested your husband get on antidepressant if he has never been on one before because when one is depressed one can’t think clearly people don’t enjoy the normal things they used to their sleep is disturbed so I would suggest that he see a nurse practitioner or psychiatrist. It may make a big difference in his appetite and in general health. I guess I can’t imagine my phone I’ll just saying I’m not gonna see you anymore. That’s crazy
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