Feel Like A Fraud

[Beth_19]

Dear All,

Okay so here is my story.

I was diagnosed as asthmatic as a young child (long family history of asthma, plus several bronchitis infections in first 2 years) and was on inhalers up until I was 19 when I stopped using them with advice from my GP as I was symptom free. I have remained pretty much symptom free for the last 10 years (occasionally borrowed mum's reliever if things got a little tight and it always helped).

At Christmas 2015 I got that horrible flu-like virus which knocked me for six. After two months of struggling with a cough and wheeze I went to the docs who said it was infection and asthma. I had antibiotics and started on my inhalers again. 

Since that time I've struggled and had episodes of severe coughing which left me gasping for breathe. I agreed to go back to the doctors and he said I had gone from a stage 0 symptom free asthmatic to a stage 5 severe asthmatic in four months. He wanted me to go to hospital but I asked if I could be treated at home I would prefer it. He reluctantly agreed but with strict instructions for me to go to hospital if I worsened at all.

I ended up in hospital the following day and ended up staying in two nights. Fortunately I responded after a couple of hours of intense treatment and was allowed home after confirming my lungs were functioning at 75%, which the consultant was happy with. 

I've been home a couple of weeks now and I'm still on high dose steriods, inhalers, etc. My peak flow varies from 300 too 400, (used to be 400 or above).

My problem is I feel like a fraud at the moment. When I was in hospital I can acknowledge I was very poorly and you could hear the wheeze etc see it all in my obs. However now I am home I still have chest tightness and shortness of breathe on doing any activity but no wheeze. My family keep saying they want me to go back to hospital but I don't want to be told there is nothing wrong / they can do and feel even more like a fraud and have wasted precious resources.

I'm due to see my doctor tomorrow for post-discharge check-up.

Does anyone else feel this way? What helps you get over these feelings?

[Kashwi]

I have pretty much gone through exactly the same as you! 

I have been asthmatic since childhood now 20 and caught the same horrible flu virus just before Christmas and ended up in hospital in January for 10 days 

I went from mild asthma to having recently being told my asthma is now brittle!!

I have been admitted 5 time since Jamuary one of which resulted in an ITU admission! 

I always try to stay out of hospital and go to my go who 9/10 times sends me straight to hospital anyway! I also never wheeze so do not let that put you off.

I completely understand how you are feeling!  

What medications are you on? 

[Beth_19 in reply to Kashwi]

currently on sereitide, ventalin, and steroids. 

i think im gonna be back to hospital tonight cant form full sentence without taking a break and feel like some put my lungs in a compresser.

thanks for replying 

[Kashwi in reply to Beth_19]

Let us know how you get on!

[Beth_19 in reply to Kashwi]

Thanks I did end up back In hospital pretty much right after my last message and was discharged tonight. 

This time it really did make me feel like a fraud as they kept saying my O2 sats (they didn't check blood oxygen just used pulseox machine) were fine, that my chest was clear and that my peak flow was reasonable, (which I will admit it generally has been even when I was younger but I've always had a good peak flow as I was a singer its only been the last time I was in that my peak flow plummeted), but I couldn't string two words together without gasping and feeling like I'm suffocating.

Anyway because my heart and blood pressure were all over the place, one minute through the roof the next through the floor and one doc detected a wheeze at the bottom of my lungs they admitted me.

I had nebulizers and IV steriods along with a shot of strong antibiotics "just in case" during the first night and while things settled my chest and back were still so tight I was struggling to speak in full sentences. When the doc came back he said he could detect a slight wheeze in the upper quadrant this time, and that he was going to try a sodium nebulizer plus a salbutamol neb to see if that combination would help open up my airways.  Stayed in another night on this mixture and it seems to have settled everything down to a reasonable level so I was discharged today.

The thing is when the doc came to see me on the ward (junior in gen med not consultant) she turned round and said it wasn't my asthma but a virus which was making me feel so bad, because she took my peak flow after I had just had a nebulizer and it was a healthy 410 - well hell yeah it was I just had a decent dose of neb and hadn't moved from my chair in like 20 minutes (earlier that morning the ward nurse had commented on how horrible I sounded after I had showered! 

Anyhoo the gen med consultant did end up coming to see me and he was surprised at how level my SATs were but how hard I was working to maintain it. He said he could see I was making effort just to talk and maintain my breath. He said he was happy I was out of danger and for me to continue under the dedicated resp team from my last discharge and gave me steroids to see me through until I see them so they can decide where to go from there. They've put down on file that it was a "mild exacerbation of asthma".

I do understand how hard it is for them especially with conditions such as asthma, but this has been a real eye opener for me. 

My mum is an asthmatic and has terrible peak flows; regularly can't get above 300 but her asthma is well controlled and she functions well. My peak flows have been high but I couldn't breathe without extreme effort.

I'm glad I'm not the only one who feels like this, its horrible. 

[akela6th in reply to Beth_19]

From our messages I understand what you are going through I was told by drs not just about results and readings but how you are clinically. Hope you are bit more settled and able to breathe a little well alot easier xxx

[Beth_19 in reply to akela6th]

Thank you I really do appreciate you taking the time to respond to me, its really helped alleviate some of my fears over going to hospital about this.

I am feeling much more settled, its so lovely to be able to take a breath in without actually having to make a concerted full-bodied effort. I'm still well from being my normal self but I'm home and feeling more comfortable so I am happy with that.

Thank you again.

[Thompson_2009 in reply to Beth_19]

If you have not already been to hospital already then please go. If you are on steroid tablets and still cannot breath then it's severe asthma i would say. Steroids always clear my asthma. Do not take chances with asthma, you are not a fraud, you need medical help. Asthma sometimes can take a while to get under control and being on the right meds it key to controlling it. get better soon. 

[Beth_19 in reply to Thompson_2009]

thanks I did end up going almost straight after my last message, a further two nights in hospital just been released. 

I just feel like I'm going to go and be struggling and for them to say "well your sats are fine there is nothing wrong with you" and in a way they sought of did for the O2 sats, but my heart and blood pressure were going crazy so they couldn't let me go.

They've put it down as a mild exacerbation of asthma.

[Thompson_2009 in reply to Beth_19]

Hi Beth

Just because your stats are fine does not mean you are not having an asthma attack. How you feel and peak flow are how to gauge it. i have a peak flow of 650 fine, suffering from asthma 450, below 450 steroids, below 200, hospital. everyone is different.

I can have a peak flow of 650 and still be wheezy and a puff or two and it goes.

I have had asthma 16 years and am in my fifties so got it late. I know my asthma and now the doctors do. See the doctor and get on the right meds and you will get it under control but it takes a little while.

But if you feel really bad at any time, go to the hospital, do not take chances with asthma

Also when you get breathless, take a puff and then sit on the end of a chair and put your hands on your legs with elbows pointing forward to open up your lungs and breath slow and deep. don't panic it makes it worse.

You can control it to an extent just by breathing and staying calm.

all the best.

[Beth_19 in reply to Thompson_2009]

thanks for the reply. I've always mainly gone off how I felt as my peak flows have generally usually been good. 

When I was younger my peak flow would start out bad in the morning (around 300) and then improve as the day went on (up to 500). I took up singing when I was young as well and that upped my peak flow level too with all the breath control.  

My first admission is the first time my peak flow has seriously tanked and stayed down for any sustained period. 

My second admission (just got out after two nights in) I maintained my peak flows reasonably well, but something I did notice is that my first two attempts were usually quite low and then my third would be decent (and they always take the higher number), they also took them quite a bit after I had nebulizers so I would expect my flow to be reasonable then.

Yes when I was speaking to the consultant on my first admission he asked if I would be okay to join a course which helps deal with the panic you feel when you are struggling to breath and how to reduce that impact. I jumped at the chance, anything I can do to practically help myself is something I want to try.

I will  try your tip as well thank you.

[akela6th in reply to Thompson_2009]

Totally agree you as the asthmatic know your body and must never take risks when it comes to asthma!!

[akela6th in reply to Beth_19]

Pulse and blood going crazy was probably linked to the fact you were struggling to breathe and were probably scared. I do hope you are feeling bit better xxx

[akela6th in reply to Kashwi]

Omg we sound identical. Have you found that people don't get it when I don't have a wheeze yet feels like a belt round my chest and struggling to breathe. How have you found dealing with the whole ITU situation? I'm finding it difficult to deal with the fact I can remember voices and bits but was not able to respond even though I was not ventilated this time just totally exhausted!

[Beth_19 in reply to akela6th]

Yes that is similar to how I was describing it, it felt someone had put a strap around my chest and every time I coughed it got tighter. Depending on the doc seems to depend on whether they can detect a wheeze with me, last time I was admitted everyone agreed there was a wheeze, where as this time (last two nights) not everyone has heard one. 

Fortunately with my first admission I didn't end up in ITU but was kept on the strict monitoring bay more like HDU, but it was beyond exhausting with all the noise and trying to breathe.

this last time I was just on the normal admissions ward and then general ward as my SATS were reasonable.

[akela6th]

I feel your frustration, I too was diagnosed as teenager but over time came off inhalers just periodic need to use a blue inhaler. Some 10 + years ago had an severe asthma attack out the blue admitted to hospital where I was later found collapsed and ended up in ITU on a ventilator in another hospital for 4 days! I have just come out of hospital yesterday after what ended up being a combination of Swine Flu,pneumonia and acute exasserbation of asthma. I spent another 3 days on ITU but not ventilated this time. Discharged after 2.5 weeks only to be readmitted after 4 nights home with another infection causing flare of asthma.

Don't ignore your symptoms you know your own body it's very difficult when you don't necessarily tick all the boxes of symptoms that lead to diagnosis. Not everybody wheezes but some drs do focus mainly on the WHEEZE. I personally get the dry irritating cough and chest tightness. Sounds like you need to see Dr. Does your Dr surgery have an asthma nurse. They will be able to understand and manage yourasthma,symptoms and when to adjust your medication and when to seek attention. Prevention is the key as I am learning, hope this helps

[Beth_19 in reply to akela6th]

Hi thanks for the response. Wow you have certainly been through the wringer haven't you. I hope you are now starting on the road to recovery, sounds like you deserve a rest.

These past few weeks certainly have been an eye opener for me that is for sure. I completely understand how hard asthma is to diagnose and treat correctly but its been so hard having them say certain things. 

My first admission which I spoke of above was terrible, I've never been so poorly before and there was a lot of focus on the fact that I had a wheeze etc, but they checked my blood oxygen levels with the blood tests and not just relied on the pulse ox meter and that told them the true story. This time (I went to hospital after I posted my message and spend a further two nights in) again there was so much focus on whether there was a wheeze, the fact that my O2 sats were fine (but no blood oxygen test itself just the machine) and also my peak flow (I know a major diagnostic area for asthma).

Even when I was young I had a good peak flow, it would be low in the mornings (usually around 300) and then improve as the day went (well over 400 sometimes even 500). It got even better when I took up singing and learned breath control. Even when I've had horrible chest infections I've maintained a decent peak flow compared to many others. 

But in contrast my mum who is also asthmatic has a terrible peak flow, regularly struggles to get 300, but she is a well controlled asthmatic who leads a healthy lifestyle with minimal use of her inhalers. 

I guess I do feel like a fraud still but as my mum did say, she wouldn't have taken me to hospital if she didn't think I needed it and I am taking some solace (if thats the right word) that I'm being kept under review by the Respitatory specialist at the hospital.

Thank you again for your message.

[Kashwi]

Yeah I found it all a bit much to deal with as I live away from home for uni and at the time when I was admitted to ITU my parents were in Spain and no one could get it contact with them

I am currently just about to head to A&E as still struggling even after being nebbed this morning! I also made the discision to come home today so thing will probably get a bit complicated as not registerd with a GP down here! 

[Beth_19 in reply to Kashwi]

Oh no I hope you get sorted out.