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Hi,
I’m Gavin, aged 46 and diagnosed with restrictive lung disease. It’s frustrating because between pulmonary appointments that take months, I’m getting worse and worse and never getting a full diagnosis. It’s very much like doctors just don’t seem concerned. And as I’m quite an anxious person they have frequently seen this and put the majority of how I appear down to anxiety. I seem to get nowhere but just get worse, managing only tiny gasps of air in and out. A PFT last year showed I had 20% of what lung capacity should be, but the consultant kicked this into the long grass as he was going on ‘how I presented’ – this was still the case in January when last seen. But the breathlessness has increasingly worsened since then. Whenever I ring an ambulance they just say emergency is for acute care and they can’t help me.
Over past few weeks I’ve been getting worse (breathlessness, body aches and weird creeping and aching sensations in chest) and having trouble even getting to sleep as I have to breathe hard to keep sats up. As I nod off in last few days I’ve checked sats and they’re often as low as 88-92. Obviously I then arouse and push them up by compensating by forcing air in and out. When I’m anxious, the sats rise to above 95. As soon as I relax, they plummet. It’s hideous. If I sit or stand up my pulse shoots to above 130. Same if I walk. But somehow, last few days I’ve slept for around 7 hours a night. I don’t know how I’m getting to sleep and goodness knows what sats are dropping to while asleep. On checking when I wake they’re in mid 80s. Or shaking in sleep wakes me. Which is terrifying. I’m due to see a respiratory nurse on Friday, but feel I’m getting worse literally every day. Also not seeing a pulmonary doctor again until 26 June. They’ve actually put my appointment back from 22nd. When I ask to be seen earlier I just get “the doctor doesn’t feel he needs to see you yet”. Looking at me, people can’t see illness but I really feel at death’s door. Because an HRCT just showed small Bronchiectasis last September, they don’t act on things. So, In desperation, I’m asking does anyone with severe breathlessness but not yet on oxygen have tips on how to stay calm? I’m sorry to bombard this forum lately and I know everyone is on their own hideous journey, but I’m terrified. With love, Gavin. -
Hi Gavin,
Sorry to hear about all of this. I have IPF and live in Sweden. I don’t have any major issues yet, but feel bad not getting to speak to the pulmonologist and do feel alone with this. Just want to tell you I read your message and am sorry I don’t have any advice for you. Hang in there. Monica (in Sweden)
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I am so sorry to hear of your frustrations. My husband was diagnosed with IPF in July of 2021……As with you, it was difficult to see and communicate with the pulmonologists. Although he was on oxygen with activity, he experienced episodes of severe breathlessness as well……..and many times they attributed it to panic attacks……(I was and am a skeptic). He finally was able to get into a center of excellence in July of 2022. He saw the head of the pulmonology department on September 1; had an episode of breathlessness during the appointment — said it was a panic attack……………On September 4, he had another episode at home; he could not get his breath even with oxygen……..had to go to hospital by ambulance………was in ICU for two weeks…………they never could get him off of the high flow oxygen and he passed away on September 16. I truly feel that if the Doctor had not told him the episodes of breathlessness were partially attributed to panic attacks, he would have gone to the hospital sooner and not so much damage would have been done. I hope you stay vigilant and insist on seeing a doctor that listens to you.
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Thank you Monica. I hope your journey is comfortable as possible.
I’m getting worse as each day passes. My chest and back is aching and my legs are weak. My sats drop to 89 now unless I’m forcefully breathing. If I stand up or walk my pulse shoots to 140. It’s unbearable. I just wish I could find someone to help. xx -
Gavin,
I was just recently diagnosed, not experienced severe breathless, however I had three siblings pass from IPF .. my oldest brother had a hand held battery operated fan he placed in front of his face that pushed air into his lungs. It relieved his anxiety.. he continued to use the hand held fan when he felt the need even while con oxygen. My other brothers son .. helped coach him through the episodes also with the hand held fan and trying to help him focus on the breaths he was trying to take more slowly. It worked for them but was also very scary trying to find the air they needed. I hope you have someone to provide the support you need during those horrific times. Thoughts are with you .. not sure if this helped. -
Gavin,
I’m 76 years old and I was diagnosed with IPF since 2018. I’ve been addicted to outdoor activities all myI life too many to list. My condition was fairly stable until last November when I experienced an exacerbation event (two weeks after my last Covid booster!!!!) that landed me in the ER. Within two months I was again in the ER.! Since then I’m on 24/7 supplemental oxygen which makes my life as miserable as one can imagine! I’ve been taking Esbriet for the last four years, and now I’m on a high dose of Prednisone, which is an unproven medication for IPF. But there is nothing else other than a lung transplant!!!! From your description I believe you need supplemental oxygen, but this is between you and your doctor to decide. Good luck, and try to stay positive if and when you can! Looking forward to hearing from you. Sylvain
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I am 80 years old and had IPF for 8 years, I am on oxygen continuously and get short of breath even on 8 liters of oxygen. I have a Mazda Miata convertible and ride with the top down and the fresh air along with my oxygen tank really helps me to relax.
I also have a Honda motorcycle that I ride when I really feel good, just have to strap my oxygen tank on the back of the seat.
so don’t give up, think positive.
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Thank you Silvain and GiGi.
I’ve tried a hand held fan and it doesn’t seem to help me unfortunately.
Yes, I too think I need oxygen. And my sister (a nurse) thinks c-pap or bipap too because my involuntary breathing doesn’t seem to work. As soon as I stop concentrating on taking breaths, my oxygen sats plummet, so falling asleep is really frightening. When I do get sleep I wake like I’m trying to swim to the top of a swimming pool. On checking sats on waking they’re frequently only low 80s and I’ve always got a headache. I’m always waiting for doctor appointments that take months so I’m left in the dark suffering. Ringing an ambulance doesn’t help because by that point I’m panicky and sats go up to mid 90s so emergency doctors just send me home. It’s like I need to be blue and collapsing before they’ll do anything. All they say is A&E (ER) is not the place for me. It’s a hideous journey we’re all on and it’s good to hear others’ advice and kind words. I am having a visit from a respiratory nurse tomorrow so I just hope something comes of it. I wish everyone well and pray I and everyone else can get by without suffering. I’ve never been particularly religious but have always believed in God. Lately I find myself praying a lot. Love, Gavin x -
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Hi Gavin, I feel quite distressed on your behalf by the reapidity in tne progress of your symptoms, especially considering your age. I am old, and have a slow form of IPF, but now reached the distressing oxygen debit zone. I have just had a consultation with a respiratory nurse on breathing techniques. I have found it helpful in minimising the panic sensations but not game changing..
From your language style, I suspect that you might be in the UK and under the NHS. If this is so, I would use the old exression that, ‘the squeaking wheel gets the grease’. Get in there and squeak VERY loudly and get a referral to a respiratory centre of excellence and their consultants. Best wishes, Joe
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Dear Gavin,
This is my first post prompted to write due to your concerns related to your difficulties with breathing. I’m newly diagnosed with idiopathic pulmonary fibrosis this past January. Apparently there is evidence of my disease since 2019. I am not on oxygen but have lost 50% of lung capacity. Since late March I have been in a monitored exercise program that also includes lectures on lung disease. The respiratory therapists are not concerned while I’m exercising unless my oxygen saturation goes below 88. Then they will have me continue exercising with nasal oxygen at 2 liters. It helps me a great deal to do “pursed lip breathing.” You can google this if it’s unfamiliar to you. It slows down your breathing and helps expel carbon dioxide so there is more room for oxygen. I have also been tested for sleep apnea and it’s been confirmed. My oxygen saturation decreased to 85 and caused me to awake. I expect to go on c/pap but my appointment with a provider isn’t until August 10. The suggestion to go to a pulmonary center is a good one if you can for they will take you seriously and provide teaching to help you deal with your concerns and possibly help your anxiety. Information is key.
Fran
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Covid overwhelmed the medical profession, especially pulmonologist.
Look up “pursed breathing.” It is a technique that reduces anxiety and rapid, shallow breathing
. In breathing classes they teach you to breath in thru your nose and to exhale thru you mouth –and when you exhale you close your lips except for a small opening and exhale 4 times longer than you breath in. Works wonderfully to cut down on what I call breathing fear attacks.
Good Luck
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Gavin,
A hand held fan is fine, but not very effective. I use a larger fan, about 18 inches that oscillates in the room, it helps keep the air moving around and seems to help quite a bit.
Using the pursed-lip breathing is essential in my opinion. It makes you concentrate on how you’re breathing and not as much about the feeling of being breathless. Allow yourself to take a few minutes to recover when you feel out of breath. It takes time.
Before I was prescribed supplemental O2, I used canned oxygen which I found at Walgreens. At that time, a few pure oxygen breaths would be all I needed. When I told my pulmonologist I was using it, he then prescribed oxygen for me at 2L/min. I am currently using 5L/min and I’m getting along pretty well for the most part. I have breathless episodes, I sit down and concentrate on my breathing. Calmly breath in through your nose for two seconds, then breathe out through your lips for four seconds (smell the roses, blow out the candle). This method enables more carbon dioxide to get out of your lungs, giving oxygen a chance to get in.
I hope you are able to get outside sometimes too, that always helps me breathe easier and calms my anxiety.
We’re all pulling for you and understand just what you’re feeling. Stay strong, stay positive!
Teri
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Hi Gavin, I believe a pulmonary rehabilitation program will be of benefit to you. It can help with shortness of breath, feelings of anxiety and depression, increase muscle strength and your ability to do things, teach you about nutrition, breathing exercises for when you are experiencing breathlessness etc. Here are some informational blogs about it: https://pulmonaryfibrosisnow.org/2022/06/02/pulmonary-rehabilitation-and-pf/ and https://pulmonaryfibrosisnow.org/2020/03/06/what-is-pulmonary-rehabilitation/
Here is a link to some breathing exercises that can help improve your oxygen levels and help calm you: https://pulmonaryfibrosisnow.org/learn/exercise-your-lungs-2/#excercise
Hope these resources are useful for you. Also, hope your appointment with the nurse gives you some answers.
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Gavin
i am NOT a Dr and only offer this to you from my own experience. Please research Haritaki capsules. I get the Cona Nature brand from Amazon. Haritaki comes from the flower of a tree in India. There it is known as the king of medicine. I take ofev 100mg twice daily and I take two haritaki capsules each morning. I can’t find the article that was on the PF Foundation page but the University of Alabama did a study with mice using chebulic acid ( haritaki)from these flowers. It actually reversed the scarring in their lungs. I have taken it for two years and my Ct scans have gone from moderate to minimal scarring. My lung function test have improved and I’m maintaining an average O2 level around 96%.
As stated I am NOT a Dr and am not replacing what your Dr says. I had to be my own advocate to look outside the box. My mom and two other family members also had PF. My children are taking haritaki in hopes to avoid PF.
prayers for you and all who suffer with PF. -
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Hi Gavin,
I’m so sorry you’re having such a hard time both with your illness and your medical team. Not being familiar with the medical program you have it’s hard to make suggestions. But the first thing I would do is change doctors! Or maybe you can attend pulmonary rehab. This would help you learn how to calm yourself through breathing exercises when you get out of breath and it would also help you exercise so that you can maintain some strength in your body. You will be in my prayers. Remember we are WARRIORS and need to do the best we can for ourselves. There aren’t many people out there that will advocate for us. Hugs to you!
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Gavin,
Best thing is to start screaming loudly at your health provider. The progression of PF diseases is unpredictable. I was OK until I had an serious exacerbation and ended up in an ICU, followed by an emergency lung transplant.
Having sats below 90, tachycardia and a really low long capacity is a reason for getting monitorwd closely rather than being fobbed off.
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What you need too do is to ask for a Walking Breath test. When I had mine a person came to my home at my doctor’s request. She took a resting oxygen amount on her o2 meter. I walked for a distance with no oxygen supplementation and she again took a oxygen level and then I rested for about 5 minutes and she took another reading. She then announced that my recovery rate was too slow so I definitely needed oxygen supplementation. She suggested I try taking oxygen at a higher level of supplementation than I had previously used. My pulmonary doctor approved the higher rate and then I could control my breathlessness much more easily.
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Kim, i have ordered some Haritaki and am hoping that i can have the same results that you have had. However, i am on my tenth year so i may be to far gone, but i am willing to try anything. I have sent am e mail to my pulmonologist but have not heard back yet. Would you tell me what dose and how often you take it. Chuck Gerson
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You must learn to control the anxiety you feel when you think you can not get enough air, the anxiety keeps you from getting the air you need, get a grip acknowledge the facts of this disease and force yourself to focus on something else when you feel the anxiety creeping in. I use audio books to listen to so I can fall asleep, I also do breathing exercises (pursed lip breathing helps me a lot) I force myself to calm down. sign up on your computer or what ever you use for “1st class medical thrive” it is a site for people with pulmonary issue and has many valuable teaching methods for people like us. Also above all you need a different Pulmonologist and to be on Oxygen, there is medication that will slow down the progression of the fibrosis, insist that you get the help that you need, I can’t understand how a Pulmonologist can be so indifferent to your situation your stats are too low when they are in the 80’s . Good luck, don’t give up, you can live more years than you think if you take good care of yourself.
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Hi Gavin,
i am so sorry and I feel your pain. I have a problem with the receptionists in the medical community 3 months later still don’t have a true diagnosis. What most people will never understand is how not breathing sets off anxiety like crazy !! They say smell a rose and blow out a candle. I’m sorry you don’t have an e tank, when I get anxious I set my e tank to 15 liters and use a non rebreather mask until I feel better and a fan works too I sleep with one. I wish you luck and hope it all gets managed soon!
Dee
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