Airway Stenosis Patients Association - ASPA

Airway Stenosis Patients Association - ASPA The Airway Stenosis Patients Association is a support network for anyone affected by Airway Stenosis Airway Stenosis Patients Association was founded in 2013.

We are closely supported by Charing Cross Hospital (ENT), who specialise in airway problems. Thank you for all your ongoing support. Best Wishes
Kelly Stephens

02/09/2020

Group Anoucement
So in the next few weeks I will re setting up the ASAP page. Because this page has been set up on a business format which has made it difficult for myself to make any changes or add informational content to the page and for anyone else to add additional information. I will be sending out invitations to all of the members listed on this page. Thank you so.much for the wonderful interactions that have been happening recently. I look forward to interacting with you further within the new page.

Best wishes
Kelly Stephens

31/08/2020

When you are having a bad day with Airway Stenosis, what kind of symptoms due suffer? 😔 ###x

Today my husband and I celebrated our 4th Wedding Anniversary. It has been a roller coaster of a 4 years due to my Airwa...
27/08/2020

Today my husband and I celebrated our 4th Wedding Anniversary. It has been a roller coaster of a 4 years due to my Airway stenosis. I am so thankful for every day we get share as husband and wife.
Is anyone celebrating a special occasion today? I would love to here from any of you 🍾🥂💐 ###x

23/08/2020

So a question to all the members, my airway stenosis was caused by trauma when I was a premature baby. How was your stenosis caused and at what age?

I look forward to reading all your responses?

23/08/2020
22/08/2020

Rules of the Group

1. Please respect each other points of views and opinions. If you have a difference of opinion please respond in a considerate respectful manner. This groups intention is to build each other up, support and encourage each other. Any inappropriate behaviour will result in instant removal and ban of the offending group member.

2. Please do not advertise businesses without the permission of the administrators. If you wish to advertise anything of any sort please email the information the facebook group messenger and await either permission or refusal of the administrators.

3. Please do not discuss politics or religion. This includes any references, quotes, readings and prayers of religion. Please only discuss topics relevant to the facebook group.

4. Please respect the privacy of all our members and do not share any personal information, stories or images of our group members outside of this facebook group without their permission to do so.

5. Please do not share information from other support groups of any sort without their permission. We need to respect the privacy, hard work and dedication of each support group.

6. Please do not use this page as a platform for selling items, advertising, sharing spam or fund raising for personal advantages.

On Sunday in Bude, Cornwall I had the pleasure and honour to meet up Catherine Anderson the founder of Living with Idiop...
18/08/2020

On Sunday in Bude, Cornwall I had the pleasure and honour to meet up Catherine Anderson the founder of Living with Idiopathic Subglottic Stenosis page. We had a lovely catch up a latte (me) and half a pint of Doom Bar (Catherine). She gave me some valuable incite, advise and has offered her help and support as I decided the way forward with this page. As Stenosis patients we both have a broad understand and experience of living with our condition. I am looking forward to what the future may hold :) ###x

It has been a very long time since there has been any activity by myself within this group. Firstly I need to apologise ...
26/06/2020

It has been a very long time since there has been any activity by myself within this group. Firstly I need to apologise to all the member of the group. The last two years have been immensely difficult. My husband and myself have gone through a couple of very personal tragedies and health battles on my behalf. End of January this gave ne the hardest fight of my airway stenosis life.
On the morning of Sunday 26th January I started suffering chest pain 10 days after being discharged from Derriford hospital recovering from a viral airway infection. By the evening the chest pain was radiating from my left side of my chest to my armpit into my left shoulder blade. I called the out of hours GP, who sent a paramedic to my home. I was spiking a 37.8 temp, for the week prior to this I had severe headaches, ringing in my ears, sweating but no cough at all. As I was boarded into a ambulance I suffered an airway spasm so assumed it was another air infection. I went to hospital had a chest x-ray and bloods. My bloods were through the roof but chest x-ray was clear. I had a long tiring night of airway spasms and no sleep.
On Monday 27th January whilst my best friend was visiting me in hospital I suffered another airway spasms. This spasm was the hardest of my life and a battle I could not win. I was rushed to theatre, I assumed I would be woken up hours later. Unknown to me I was put into a drug induced coma and taken to the Intensive Care Unit (also known as Critical Care Unit), upon which I stayed in for 12 days.
On Tuesday 28th January whilst in the coma my chest was x-rayed and my left lung was found to have viral pneumonia. Within that 12 day coma I developed right sided hospital pneumonia. On day 11 of the drug induced coma a tracheostomy was put in situ but unfortunately hours later for whatever reason the tracheostomy became dislodged. On Day 12 of the drug induced coma a second tracheostomy was put in situ. I was then gradually awoken from the coma.
As I woke up from the coma I was only able to turn my head side to side. I could not move any aspect of my body, I was literally completely physically debilitated, confused, very scared and unable to communicate to to the post operative tracheostomy in situ.
I spent a further week in intensive care being gradually rehabilitated from self feeding myself, self personal care to standing a few steps with a zimmer frame. Over time I was detached the tubes and wires from all the machines I was connected too. The nursing care I received was phenomenal, I will be forever thankful for the wonderful medical nursing care which saved my life.
I was moved to the ENT ward spent almost two weeks abilitating, self caring for the tracheostomy. Seen and treated by a nutritionist, speech and language therapist, physiotherapist, occupational therapist, dietician. By the time I was discharged managing to self care and walking small distances with a zimmer frame. Yet again the medical and nursing care was phenomenal and I will be eternally thankful for the rest of my life.
Since being discharged I have been on and still on a long journey of rehabilitation physically, mentally and emotionally. It has been such a long exhausting journey which has been continuing as I live day to day with a tracheostomy which has come with a lot of its own problems.

The second thing I wanted to discuss was when I first took over this page I was excited and passionate about airway stenosis. especially as I have lived with it myself for 46 years. I wanted to see where I could go with it but felt frequently as times this page was being compared and members advised to go to other pages. I felt my confidence knocked and passion diminished. I feel that all of us who live with airway stenosis have so much experience and knowledge of living with this condition. I feel that we should embrace all support groups and give encouragement to what each of us can bring to each other in all groups. I am a full supporter and member of a few of the groups and think they are all outstanding and excellent. This page was originally founded by another airway stenosis member. Someone who I admire greatly and was honoured to be given the opportunity to run this page. Though it has been a difficult few years I am determined to keep fighting forward in life and with in this group. I hope that I can go forward within this page. I am open to new ideas and embrace all advice and guidance to what will help to improve this page.

I wish everyone to be safe and well especially in the crisis we are facing.

Best Wishes
Kelly Stephens
###x

10/07/2019

This could be useful when travelling out and about :)

Something we all long and hope for with our condition 👏 ###x
11/01/2019

Something we all long and hope for with our condition 👏 ###x

Many times when we struggle for breath but those around us breathe with ease, this how it can feel at times towards them...
10/01/2019

Many times when we struggle for breath but those around us breathe with ease, this how it can feel at times towards them ###x

09/01/2019

I wrote this poem in 2015, from my own experiences and of those of fellow patients I have met in hospital during my surgeries :)

Whisper of a voice, our breathy talk,
Shortness of breath, aching legs, we need to slowly walk.
Please forgive us for excessive yawning.
Off to bed early, sleeping when day is past dawning.
Our breathing difficulties, from our throats within.
Tiredness, breathless, paling lips and skin,
Forgetful, shivers and sweats, our memory on go slow.
Because our oxygen levels have fallen so low
Being unable to work, to keep a job bringing in a regular pay
Days off sick, disciplines, final warnings stressful days
There are days we can give above and beyond our best,
On the other days all we can do is to sit and rest.

Shortness of breath trying to read the children’s books
To be able to play in the park, without getting awkward looks.
To be able to join in all of the family fun and games
But having to sit back out of breath, feeling lame.
At times our restricted breathing gets extremely tough,
To a point when we feel so tired and pushed beyond enough.
Various operations required time after time, as and when.
Never knowing when our airways will let us down again.
Our breathing can bring moments we endlessly endure.
When will they finally find that long awaited cure.

We smile, we cry, we laugh and get scared put on a brave face,
To be able to breathe, to know we can reach that better place.
We live each precious moment and value every day,
For each breath and we try not to waste our air away.
Each day we get stand up against the Stenosis with all our fight.
To walk the beaches, sand in our toes, the sun so warm and bright
To breathe in the freshest of air, go for walks to breathe with a gentle ease
Those precious moments any one of us would be so pleased.

December 2015

We all can relate to this during the times we struggle to breath ###x
09/01/2019

We all can relate to this during the times we struggle to breath ###x

A message to us all through the more difficult days of our condition👏 ###x
08/01/2019

A message to us all through the more difficult days of our condition👏 ###x

07/01/2019

So my first official post is to ask you all as member what would you like to see on the page and website. What would be helpful for you to live with our condition? Please feel free to either PM or make a comment below. On the website I will be creating an abbreviation page for medical terminology. A page explaining different types of surgery and medical procedures, medications, guided by the medical professionals as well as my surgeon.
I have thought of having a page where people can share how they are able to live with airway stenosis and build their lives around it, what do you all think?

I look forward to hearing from you all :) xx

Address

1 Barton Farm Cottage, Trelill
Wadebridge
PL303HT

Website

Alerts

Be the first to know and let us send you an email when Airway Stenosis Patients Association - ASPA posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Airway Stenosis Patients Association - ASPA:

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram