Some photos of my recent trip to England. Had a great time and my lungs held out brilliantly. Traveled all over the central and western part of the country from Portsmouth to Liverpool. While in London I had the pleasure of meeting long time blogging friend, Susannah and her husband Julian. How cool is that? Can’t wait to go back to see the half of this wonderful country.
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Sign in nowThanks Tammy and good luck at your marathon!
Wow! That's so much and hurts. I just had my ABG drawn only 68 times. I hope you re doing well. And, I'm also asthmatic (severe asthma) since I was 4 years old.
Hi… what's your genetic mutation?? I am mom to a daughter with Rett.
I think you\’re looking for Alin\’s website.
I had a pulmo like that. I too was her most severe patient. She was a gem and left me for another state. Sent me the nicest letter too when she left. I still miss her.
Glad you found a great pulmo.
M
Yeah, I lucked out with her. I like the the fact that she\’s willing to try new things and is very accessible. I hope you find another good one.
My Primary Care Physician is the exact same way. She calls me from time to time just to check up on me and see how I'm doing. She also has me make weekly appointments with her so she can check up on me and attempt to get me to doctors that can help me with all the secondary issues that have come from my very rare lung disease call bronchiolitis obliterans. The chemical damage that permanently damaged my lungs has now started spreading into other systems in my body and has been very difficult to deal with. I thank God every day for doctors like mine and yours who truly care about their patients.
Hi Daniel, Sorry to hear about your health problems. Are you a candidate for lung transplant ?
I would need a double lung transplant, and currently I don't qualify because I have too many other medical problems. I am struggling to find medical treatment to help all my secondary issues. I'm a disabled veteran as well.
First of all, Thanks very much for your service to this country.Sorry to hear that your having a rough time with your health. A good friend of mine had BOOP, probably not as bad as yours, but he also has COPD and requires high flow O2. .In 2009 we did the Boston marathon together. We\’re both unable to run, so we walked it. Would you happen to know what your FEV1 is? I wish I could make some recommendations for you, but Im afraid my knowledge is limited to severe asthma. I do however know a lot of pulmonologists who specialize in all kinds of respiratory conditions. Please stay strong!
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Hey, it's Epic Steve! There is way too much here for me to comment on, but I think we've talked about the bulk of it anyway :].
I think autumn's my favourite time of the year, too. Been digging it this year — of course, it's been unseasonably warm here. I think I'm happiest around 15-20*C, we hit 30+ a couple days this week. Crazy, it's freaking October. In CANADA. When will your house be ready for halloween?
Gettin' excited to hear about your trip! I hope it's full of awesome.
Also, YAY, it's WINSTON!! And AWESOME DOUG!
Good to hear from you in bloggy-form again! Keep on rockin', dude. :]
"She knows that I know my disease better than anyone and that her job as my pulmonologist is to be a facilitator and make sure I get the things I need." Love that quote.
Hope your port serves you well . . . but that it doesn't have to do its job for a LONG time! :]
<3
I agree- scouring the net for somwthing, anything about "how long is this going to last this time? Why am I not bouncing back from the hospital very fast this time" " etc. and I found nothing until this blog. Well written and exactly what I ned- I am following this course to the letter , now 8 days out from emergency room and a full day in a hospital bed! WELL DONE! and so glad you're on FB
Your cat's eyes are very nice and congratulations to that amazing achievement.
Sam Holden
Oh that's just darling. How wonderfully compiled and edited your photos are. I recognised the majority of them, even the back streets of Bath-I used to go shopping there!-and I loved that you put I used to live in Laycock. That place is exquisite but I had the worst asthma experiences ever living in my 200 year old damp cold cottage there!
We are just so relieved you didn't have breathing troubles over here and made the absolute most of an incredible whirlwind tour of our country.
Please visit again. It was such fun seeing you.
Stay Well my friend xx
It was so nice to finally get to meet you, I'm just sorry that you weren't feeling good on that day. I hope I wasn't responsible for you ending up in the hospital later that week ( I have that effect on people sometimes..lol)..
I really enjoyed my trip to England and I hope to return next year. I hope that you will feel better soon.xxxx
hi ive been too A and E this week due to asthma. i had a terrible experience. i couldnt breathe despite my inhalers and called an ambulance. the paramedics were judgemental saying they thought it was a panic attack because my oxygen sats levels were 100 percent. my peak flow was down. however they put me as a low priority and it was awful. in the end the doctor said she didnt know if it was anxiety, asthma or a chest infection and put me on antibiotics. im so angry i have suffered with asthma my whole life and because of my sats levels they assumed it was panic. i am going to complain
So sorry to hear that you were treated so poorly. This happens all the time and I hope you complain. It is rare that an O2 sat would be a 100% during a severe flare, but it is possible. O2 sat is usually the last thing to drop during an attack. It\’s also possible to have asthma and anxiety at the same time, One can cause the other. Do you have a resp consultant? You should have them write a letter on your behalf. You might consider joining my Facebook asthma group https://www.facebook.com/groups/severeasthma/” rel=”nofollow”>.https://www.facebook.com/groups/severeasthma/ Hope you feel better soon.
HI If you want to kick the sugar. You need to eat plenty of healthy proteins. Good fats. Stay away from fruits, fruit juices are any sweet veggies. They convert into sugar. Take good multi supplements. I work with someone that specialzies in this stuff. I also go to school in holistic nutrition.
you need a different doctor. I was on opiates for chonic pain went thru the struggle to get off them then after being diagnosed with COPD< Pulmonary arterial hypertension doctors insisted I go back on and so again my days are counting pills making sure I take only whats prescribed and it is alot easier to breathe and get thru the days….
Ive never taken them for pain, Ive only used them for my breathing. To me , the side effects out weigh the benefits, so after being on them for 10 years, I weaned completely off. I still use nebulized dilaudid when I my breathing gets really bad.
Brilliant article! I recently (1 week ago) had my first asthma attack and ended up in A&E, pumped up with steroids and antibiotics, and ended up in A&E again, 3 days later. Its has felt like an excruciatingly slow recovery and worrying me as to why I am not getting better. Finally on day 7 I am feeling so much better, still not 100's but i can breathe easily. Going out is still a bit of a struggle but indoors I'm fine. Hopefully the next couple of days I'll be able to feel like a normal person again.
Thanks for the article it has definitely made me feel better, and can understand the process. I was under the impression that you get better a lot quicker and this was worrying me.
Hi Stephen,
I had a severe asthma attack about 4 weeks ago, my parents didn't bring me to the hospital for it. It started when I was watching my last track meet I was depressed and mad when I was at the track meet my chest was a little tight and I had a cough I took my inhaler and it helped when I took it. Later on when I got home I was really sad that I had to quit track and I started to cry and my asthma kicked in I was breathing really heavy, my chest was extremely tight, wheezing, and it was very hard for me to answer the questions my stepmom was asking me about my asthma because I was very short of breath, I was also very dizzy when I walked. I don't think my parents realize how bad asthma can be. I'm going to a new doctor this month so hopefully he will put me on the right medication to control my asthma. I'm very limited to what I can do now I can't exercise much because it triggers an attack, I can't visit family right now because I can't be around cats for they trigger bad asthma attacks for me, parents still smoke so I try to limit my exposure to smoke.
Please write back.
I need your advice
If your breathing is as bad as you claim, you really need to be evaluated by a competent pulmonologist. Asthma Kills, don\’t mess around with and certainly don\’t exercise when you\’re in the middle of a flare. If your parents wont listen, seek help somewhere else. Talk to a counselor at School. Good luck!
I didn't know about this award… But it is worth to write about asthma, people don't know much about this illness. Is this award also for non-English or non-American blogs? May God bless You. Greetings for all asthmatics from Poland!
Thank You for the kind words! No this award is for ANYONE anywhere in the world who promotes awareness and educates others about this awful disease.
I see You had good time in England! I love gothic architecture like in London, but for me it is too big city on my taste
(For comparison: the biggest city in Poland, Warsaw – only 1,7 milion people).
Have a nice week!
I added You to my links.
Thank you ! I love to travel to new places, but it\’s difficult with crazy lungs. I hope to go back to Europe next year.
Do you have asthma too?
Yes, I have asthma too. I heard the diagnosis when I was 11. It was for me, teenager – big shock. In Poland 15-10 years ago the knowledge about asthma even among doctors were very little. Today situation here is much more better. Today I have one of the best medicines and I can live quite well. But 10 years ago it was impossible. My city is also one of the most polluted place in the world, so when we have smog, it is difficult time for me.
I wrote comment, but I don't know if it was written.
Yes, I have asthma, and I have amblyacousia.
I also love travel, I must to say, that I wasn't in about half places in my country… But Poland is very, very beatiful place on the Earth.
"Crazy lungs" – very original words!
Greetings for You.
Hi,Thank you for visiting my site again. Sorry to hear that you have asthma . Im happy to hear that you are able to receive good medicine for it. What is the name of asthma medication? Inhaler?
Ive never been to Poland, but I hope to see that part of the world someday. Btw, you\’re English is very good! (I only speak English and a little Italiano.)
If you want , please feel free to join my Asthma Support group on Facebook. We have people with asthma from all over the world.
Take Care
Steve
It is inhaler – Seretide. In the past I took two inhalers – Flixotide and Serevent, but they became very expensive last year in my country, so my doctor gave me the recipe for cheaper one and it is this same.
I speak of course Polish (it is my mother-language) and English. I can some read in Russian, but sometimes I don't understand Russian texts.
Heartly greetings for You.
Take care and thank You for this site.
Whenever I go to the doctors office he checks my peak flow. However it is different from what I have at home, it measure the FEV1 I'm guessing. Because, then he says I'm breathing 2 litres when I'm feeling good and (1.5-1.7) litres when I'm feeling bad. What does that mean exactly? he never really explains that
Like you said, it depends on the type of meter they use. Most meters read in \”Liters per minute\”. If your good reading is 2.0 and your bad reading is 1.5 then your yellow zone is probably 1.5 . Your red zone would probably be around 1.25
Oh, I’m so sorry because of Your health… I’m fighting with acute infection, so I must lie in my bed. Most people with asthma in Poland (like me) can control this illness too, but sometimes even the strongest have bad time. I wish You all the best and new chance for lungs.
Hello and thank you for the kind words. Still in the very early planning stages.Haven’t decided whether or not I want transplant.
Get well soon.
I have also good pulmonologist – good doctors are like treasures. It is very important to make this job not only for money, but also with love of this and talent – something like art
) – “she” (in Polish language word “asthma” – “astma” has female gender) isn’t worth naming in other way!
I wish You all best on Your way and fight with J45, as I named in my blog asthma (according to ICD code
You can read my blog in English – I have the translator.
I experience this same. This is stereotype, that chronically ill people only stay at home, lie in bed and always are very weak. But most of chronically ill people who I know aren’t seen as chronically ill – this is the fact. Most people don’t know anything about this topic, so they think that we are healthy. Some people was talking me, that I made up my disease, what was really unpleasant.
Best wishes!
Wooow! You should be in the book of Guiness!
In my country You can’t have so many inhalers – doctor can write prescription only for 3 inhalers – it is maximum. Most prescription in Poland are written for 1-2. If doctor write one more, he or she must pay very high penalty.
It is fascinating for me to know cultural and medical differences between asthma in Poland and in USA.
Im fascinated by cultural differences as well. Here in the USA most insurance companies will authorize a 3 month supply of inhalers and nebulized medications. I one use inhaler of Albuterol per week, so this means 12 inhalers every 3 months. For nebulized Albuterol , I use 1 vial every 2-3 hours ( 8 per day) so this means 720 vials for 3 month supply. And this is just for Albuterol.
My medicine cabinet looks like a drug store.
Zim, you should join my FB group https://www.facebook.com/groups/severeasthma/ We have asthmatics from all over the world.
Pursed lip exercises literaly saved my husband’s life! His COPD (CHRONIC OBSTRUCTIVE PULMINARY DISORDER) was so bad that his physician finally told him to perform deep breathing 5-10 times a day. After two weeks, his breathing noticeably improved, and after 6 weeks he’s breathing good enough to enjoy his golf and get outdoors again.
I don’t know if it brought me here, but the answer to O2 sat question has been very helpful.
I encountered that issue when I was trying to get tamiflu on the weekend from the ER. The doc treated me like I was crazy because my O2 sat was near normal and let me go with nothing. It was a heck of a month, and nobody could do anything because the ‘window’ was closed.
Sadly, it’s a pretty common occurrence in ERs. A lot of Physicians and staff mistakenly believe that if their patients O2 sat is high, that they can’t be that sick. The fact is, most asthmatics don’t desaturate unless they are critically ill or have another disease process going on, like pneumonia.
My statistic are more “common” and of course 99% of them is in Polish language. Questions from Google are mostly about air in my city (Cracow is in the top 10 most polluted cities of world), about my church (Baptist – we are small minority in Poland, so we are “interesting” for others), about books and literature and about history.
One day I discovered question from Google in… Somali language. It was caused by lyrics of one song in this African language.
I simply came here… And I really enjoyed Your blog Stephen
Greetings for You.
Hey Steve! My late congratulations!
Do you have a spam issue on this website; I also am a blogger, and I was curious about your situation; many of us have created some nice procedures and we are looking to exchange methods with other folks, why not shoot me an email if interested.
I would say zero ER personnel understand the O2 sat issue. I don’t know that my CO2 has ever been checked either. I did have a blood gas once when I didn’t look very sick, by the doc’s estimation, and only received nebulizer treatment because my blood gas wasn’t ‘great for my age’ whatever that means. I had to wait an hour for those results, struggling for every breath. (Do people get high off neb treatments? Are these narcotic agents? What gives with the dragging of feet on this?)
The belief that O2 has to be low to have asthma has really compromised my ER care pretty much universally. Complete with snippy attitudes from physicians and slow motion care, to the point where I was using my rescue inhaler in the ER because they couldn’t be bothered.
The big problem is now I avoid the ER like the plague, at a time when my asthma is much more severe and dangerous. Not a good combination, but the ER has taught me I can’t rely on them.
Which is how I ended up in the hospital last time. Trying too hard to work with my pulmo on the phone to avoid the ER only to make things worse with the delay.
M
I just wanted to add, I used to be 99-100% on room air when healthy and would rarely desat. In 2006 I caught a nasty bug in Paris on vacation and my O2 started slipping. Since 2010′s severe episode, my sats are much more sensitive and a minor asthma flare up that doesn’t require anything other than an albuterol inhaler dose might push me down to 97% (one happened to coincide with a doc visit which is how I know).
My guess is the wear and tear of the asthma on my lungs is showing as I age.
M
Sad but true. Asthma has become such a common illness that unless you “look” like you’re dying, you’re not going to be given a lot priority.
Fortunately, Ive only experienced that ignorance a couple times. Maybe its because I’m notorious for going down the tubes really fast, but usually when I go to the ER I get triaged right away.
Sometimes bringing a note with you (signed by your pulmonologist ) giving a brief history and what the doctors should look for, can help.
I wouldn’t get too fixated at on O2 sats. Normal values range from 96-100% while breathing room air and these numbers also decrease as we get older.
And my cross to bear is that I look remarkably good when I am remarkably sick.
Ah irony…
M
Actually, the question that brought me here isn’t mentioned. I’m a fourteen year old girl diagnosed at five (following a hospitalization), and I’m curious to know if it’s possible to get only a 20% ish drop on a methacholine challenge (six-ish months ago) and feel pretty great during that, not at all like I do during a ‘real’ attack, and have asthma like mine feels.
I have asthma(?) induced by all sorts of stuff- excersise, allergies(!), stress, being sick, ect. Actually, it’s pretty classic moderate asthma except for the methacholine results.
I’ve been checked for heart stuff, VCD, and a lot of other stuff, and I have all the other components that tend to come with asthma.
I’m just curious if you have any input.
Thanks!! Your site is great!
Hi – Your post really helped me…I am the mother of a 16 year old girl diagnosed with Pulm Fibrosis post a bone marrow transplant and have been wondering if lung transplant shd be an option for my daughter…your post validated for me everything I have been thinking. God Bless, do drop me a mail on how you are doing.
Thank you.
You really had so much fun with your adventure experience. Nice post.
Raquel
Congratulation!
So, I wait for some reports from this event! It is very important for us.
Greetings for You
Thanks Zim,
You should join us at https://www.facebook.com/groups/severeasthma/
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I have to say that for the last couple of hours i have been hooked by the impressive articles on this site. Keep up the wonderful work.
Thanks
My 18 yr old daughter had her first asthma attack 2 weeks ago. There is no history of atsthma in our family and she has never had diagnosed asthma in the past. Her attack resulted an amubulance trip to hosipital but she was discharged several hours later with a diagnosis of ‘likely asthma’ and some medications. Less than 24 hour later she was back in hospital, eventually intubated and then air transported to a larger city hospital, where she remained in ICU for 2 nights and then a further 2 nights on the ward. This is a total shock to all of us, including I think the hoardes of doctors she has come in contact with (not so much adult onset asthma being the shock, but rather the acuteness of a first attack). It seems like you get more answers from sites like this than from doctors, so I was wondering if you thought that her attack could have been brought on by an apparent chest/respiratory infection she had for nearly 5 months prior? She was coughing a lot on and off and was finally sick of it and started feeling worse and worse, particularly in the fortnight leading up to the attack. She went to a doctor who tested her blood (high allegerns and low iron only found eventually) and offered a ventolin inhaler to give it a go (apparently it didn’t help, according to my daughter) and see if it could reduce the cough. She didn’t have a wheeze so asthma wasn’t really the prime suspect. My hopeful side is praying that now the coughing has stopped since the hospital drama, she may be free of the chest infection at last and should be fine – especially with her preventitative meds. However my worried side wonders if this is just the first of more serious attacks, including one that could end up fatal. We’ve no ideas of what her ‘triggers’ may be so don’t really know how to avoid them. Any advice, stories, thoughts would be much appreciated.
What happens if the paramedics determine that your O2 Saturation is at 90% due to an asthma attack? Just how serious does asthma become after that point?
I recently helped a victim who developed an asthma attack and it was almost frightning to see the person struggle for air even after multiple uses of the inhaler and drinking liquid benedryl straight up. I’ve got to admit I was afraid the victim was going to go into cardiac arrest. But then, firefighters on a fire truck came and helped; followed by the EMS.
this article really helped me. my grandmother is currently in the hospital and she has air trapped in her lungs.. the doctor says that there is not much they can do. but after reading this article they have several things they can do to help her survive. this article was very easy to find and i appreciate you putting it into more of an understable language.
What a story, Stephen. You are so strong to tell it. I had this happen during an endoscopy … it was not even close to what you went through. Still, it was scary enough!