Ambulance Time Once Again!

On August tenth we had to call an ambulance yet again!
I had been in bed for weeks at that stage nursing a savage pain on the right side of my abdomen. This wasn’t the first time it has happened, and probably wont be the last! It got to a stage where I was trying to manage the pain myself at home, trying to avoid going into hospital, but I had to face facts and call it as it got too bad to manage on our own this time.

The Ambulance arrived promptly and began to tend to me. They were a crew of two, Male and female, and were excellent. Friendly, Professional, funny easing the mood when needed and seemed to take a genuine interest in what both Keith and I had to say and contribute.

Unlike the last few ambulance calls, this visit from them wasn’t rushed. It was calm, sedate and gave us time to properly prepare to go into A&E. While they took their time trying to locate a vein on my foot, Keith ran upstairs to the computer, got ready and printed off an A4 sheet with simple information on it about me and my condition, highlighting the main issues I present with, medication I am on and what would be needed when first admitted like fluids, Pain control and Catheterisation, etc.

The reason for this sheet was because through previous experience we have found to be constantly repeating ourselves while giving out my information to different people and yet only parts of the overall story get heard by all different people and nobody has the full story! This time we  said we would try getting this sheet in as a common denominator of information in my files so that everyone will be literally be on the same page regarding my care and see what happens. It was worth a try at least.

After getting a vein in my foot and administering some morphine for pain relief, we were eventually ready to go to the hospital and the ambulance crew were brilliant with everything as well as taking on the information sheet, which they said they thought it was a fantastic idea and wished more people were that organised!

We quickly made it to the hospital, after getting more Morphine on the Ambulance, I was brought straight into the A&E main area, Thankfully I wasn’t rushed into Resus at any stage this time, it was calm and sedate and a far better visit this time round.

I was delighted to hear back from the Female paramedic that she passed on the sheet Keith had given her, to the triage nurse and that the nurse also commented on what a good idea it was to have all the main things highlighted on one page where everyone can see it. She said she would put it in my file so that all the doctors would see it too. So far so good for our little A4 sheet!

While waiting around for a short while, waiting on the triage nurse to find a place to put me as it was busy in A&E that day, The Paramedics were chatting to me and told me they knew some student and new paramedics who were doing papers based on me for some exam that was due the next week! Morto! I found it funny that they would pick me based on my rare or under diagnosed EDS condition or as I like to call it, ‘my awkwardness!’ :p

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.

After spending no more 24hours in A&E this time around, I was admitted to the surgical ward. While in the A&E I had all the usual tests, xrays, scopes, exams, the usual trouble of about 50 different doctors trying to get a vein after a brief moment of being cocky and saying something like, “Oh I’m good at this, don’t you worry”, or,”Oh really? Bad veins, huh? well, I like a challenge!” and then just end up being unsuccessful anyway! That always provides me with a giggle especially towards the cocky ones who think I wont post a problem, cha! Say that to me after 20 mins of trying hopelessly! :p Being admitted after 24hours was quick though, considering that I have often had to wait over 46hours before.

I always like being admitted to the surgical ward. Not only does everything seem to be more up to date and cleaner, but Compared to the medical wards, The mood on the ward is generally brighter both from the staff and the patients. The Nurses seem to genuinely care, are not as dismissive as others I have encountered on the medical wards. They get upset when you get upset, they don’t like to see you in pain or discomfort and as much as they are able, they won’t keep you in pain for long and will treat you asap when they are asked to, a lot of the time, they don’t even need to be asked, they will notice themselves and will get you what you need to help ease your discomfort. Also, the electric beds are well cool! :p

I saw My Surgical team the next morning bright and early and they took the situation serious when they saw I had lost over 3.5 stone with the nausea, vomiting and general pain and discomfort I have been having with my gut issues.

As well  as my pain team to cover my Occipital and Sacroilliac joint Nerve Blocks which were due once again, They called in a dietician, a tissue viability nurse to talk about any difficulties I may be having with the chair, thankfully theres nothing serious going on there but she wanted to refer me to a Dermatologist for a small bit of irritation caused by the chair that was easily sorted with some long term antibiotics (starting with an 8 week course and if it needs to continue after that it could go up to 16 weeks), will just have to wait and see how it works. Then they wanted to get a serious OT assessment for me as my own local OT never properly assessed me for manual chair or a bed, given my situation, these are the two basic things my surgical team wanted to be covered while I was admitted.

The Dietician was concerned for my weight loss compared to my height and prescribed a high fiber, high calorie diet as well as Fortisip Calorie drinks to take twice a day along with my usual daily food intake to help at least maintain my current weight if not try to increase it. Sshe also prescribed a new tummy med to take with the other ones I am on to try and help with the nausea and vomiting as well as to try and increase appetite. So I have now started these and I was thinking of doing quick video reviews of the different drink flavours on offer, if you are interested that is! Let me know and I will do it if you like 🙂

Throughout there was non stop testing to find out what was causing the pain in the right side. Xrays, Ultrasounds, CAT and MRI scans, Scopes, blood tests, you name it, it was done.

In the Ultrasound Room!

One outcome is that they have ruled out any Gallbladder issues. There definitely seems to be Sphincter of Oddi, Severe Gut Dysmotility and Neurogenic Bladder Dysfunction problems, as well as a large and painful Lymph node on the inside of my right hip which is causing a lot of pain too and is currently under investigation, all these are contributing to the pain as well as the Ehlers Danlos Pain itself, but they have ruled out Gallbladder and Appendix issues, which is good!

I had 2 major cardiac events while I was in, though I had been battling low Bp all week, these events were the opposite, they came out of nowhere in the middle of the night, they were raging high bp and very fast heartrate, the ecg showed some abnormalities but thankfully they didn’t stay long (about 2 or 3 hours) and after they administered some medication to lower my bp and hr, I seemed to return to my regular low bp self, they were scary though as the pain in my chest when it happened was frightening and I was soaked through with a tempreture. The nurses seemed concerned as Long story  events came out of nowhere. Thankfully though after a few hours I returned to normal and could get some sleep.

Long story short, I got to see everyone that was called for me except OT. The final team was the pain team with the good professor who loves to give injections and this time was no different! He administered my usual Occipital and Sacroiliac joint nerve blocks under ultrasound which he did at my ward bed, he had a little portable ultrasound machine or at least that’s what it looked like and he went for it there and then. The pain team in conjunction with the anestetic team said that I may have chronic piritonitis ( information or even tearing of the abdominal lining that holds your organs) this is still being investigated and will continue as an outpatient appointment along with all the other teams I had to meet while I was in.

The surgical team try everything they can and they are so good to want to learn but they still are not sure exactly what is causing the severe pain and weight loss. I had mentioned to them about a Gastroenterologist specialist in Cork university hospital who is very well up on EDS and speaks regularly as well as trained under Prof Aziz over in London whom I hope to see as soon as i am able to travel. They said go to see him, just to see if he can help and my surgical team said they would be delighted to consult with both him and Aziz going forward as they are of the mind that more on the overall team to help me then the better!

In the meantime my team wanted to bring my case up at an EGM (emergency general meeting) where the head consultants and specialists of a department get together and discus special cases at a count table meeting so that other people’s views and suggestions can be taken on board, then once they have news they  will call me for a new outpatient appointment or send me for further tests if required.

 Unfortunately the OT never turned up and there were questions as to wether she would turn up anyway as she usually only sees Stroke and Neurology patients so my surgical team along with the head nurse on the ward rang her boss as well as had to write a letter in order to argue the case as to why they felt I was a special enough case for her to make an exception and come and see me, alas I was left waiting all over the weekend just to see her and she never turned up so my team decided to send me home at this stage with some new meds and a ton of outpatient appointments and they would follow up with her to get me a much needed appointment as my local OT isn’t really doing what she is supposed to do. 

In the meantime I have made a new appointment to see that Gastro specialist in Cork, his name is Akbar and I have heard great things so I really hope he can help. That appointment is on the 20th of this month (September) and of course I’ll fill you in on how that and any subsequent appointments go.

For now, I’ll just chill and try to recover 🙂

Thank you as always for taking the time to read.

Lette ( the fainting goat!)

Limbo Legs!

Firstly I would like to thank EDS Awareness Ireland for sharing my diagnosis story, over on their page this week as part of their awareness raising drive. I appreciate any awareness, especially of the lack of proper support in this country for care or any awareness of the condition itself is always welcome. These folks do a great job 🙂

So, Limbo Legs? Sounds like a funky dance right? Well, You could say that! :p

Lately, has been strange…

I currently cant walk independently… or, at all in fact. Even when I use crutches, all my weight is in my arms and I soon lose strength to hold myself up and the legs just crumple from under me.

There has been many a time before where my legs have been less than co-operative but I have managed to, ‘walk it out’ or recover to some degree where I get back to what you would consider normal. This feels different.

There is sharp deep pain in the joints, especially the right hip, knee and ankle. This leg was first to give me trouble. Then my left leg started to give trouble because I was over compensating with it to take pressure off the other leg!! In the end the pain became such that, when I stand, my joints crumple under my weight, *Fat Bitch! LOL! Ah no, seriously, it kinda strange not being able to stand up. It makes you miss it almost immediately!

Thankfully work is keeping me busy and distracted, I am still enjoying it, which is the main thing and it is something that I enjoy concentrating on. It keeps me from getting pissed off at the fact that I always have to ask for help with stuff and getting around.

Wednesday morning I have a doctors appointment to assess the situation further. I made a few phone calls to the rheumatologists secretaries in both hospitals. The public one and the private one. They both had me down as being, ‘routine’ on the public waiting list since April 2011 and could not give me a date, not even a guess as to when I might be called.

I simply cant afford to go private and I can only do so much as a public patient. I will see what the doc says Wednesday morning and go from there. When I rang the rheumatologists secretary, she told me to get an updated ‘urgent’ letter from my GP and to send it in. Only then will they be able to check my files and see if I am suitable to give an expedited appointment to!

Until then, I will stay seated in my office chair, where i can be wheeled from room to room!

it works, bitches! :p 😀

 

 

Updated: Dysautonomia Diagnosis Story – 2013

Hi Folks, this is like a blog rewind posting today – I have updated my Diagnosis story to do a write up over on the EDS Awareness Ireland Facebook page as they are doing an awareness drive and I thought throwing in my own story will only add to the awareness raising, but it needed an update, so here it is again with a few amendments 🙂

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This is going to be quite a long post and those of you who know me already may have read this already on my personal blog but I wanted to share this here for new people to the condition. I hate the thoughts of ‘doom and gloom’ posts which I am adamant will be very rare on this site, but I do want people to understand what can happen with this condition.

This is what happened to me and how I found out I had Dysautonomia.

On the morning of Tuesday the 5th of April I woke like any other day preparing for work and the events I had planned for, I stepped out of bed to immediate dizziness and nausea, as I found my way to the bathroom the symptoms worsened and I called my husband and told him what was going on, just as he ran to me and put his arms around me, the world went black and I had a full syncope episode and passed out.

He gently placed me on the floor in the recovery position, was very worried and I slowly came round, shaking uncontrollably, “I think you stopped breathing!”, he said and we tried to get up off the floor and the lights went out again. This continued at least 10+ times over the course of an hour where every time I straightened my legs I would lose consciousness and stop breathing until I came around again. My husband was freaking out and I was too out of it to realize what was going on. He called our GP and was advised to immediately get me to the Accident & Emergency of The Mid Western Regional Hospital here in Limerick.

My Father in Law was at the house helping my better half build and finish off our new workshed out the back, He helped him carry me down the stairs and in that time I had passed out again. I woke up sitting on the hall floor with the front door open and all I remember was thinking, “Sweet Jesus the neighbors!”, I was embarrassed, confused and started crying with confused emotion.
The hubby carried me out to the car and while he ran in to get a few things for the hospital trip I waited in the car trying to control my breathing. He came out and started the car, as soon as the motor started up I felt the dizziness and nausea kick in worse than ever it had been that morning, I began to hyperventilate and lost consciousness for the majority of the journey. Poor hubby thought the worst and stepped on the accelerator and went as fast as the car would allow.

After the most harrowing car journey either of us have ever taken we arrived at the hospital with me out cold in the passenger seat. In hindsight, should this happen again, we will call an ambulance! ( UPDATE *2013 – actually happened twice since where I have had to call an ambulance!)

Next thing I know someone (An A&E nurse) is pinching my right ear lobe really hard calling my name and Im dragged out of the car towards a trolly where I lost consciousness yet again! I woke in the re-suss room with an oxygen mask over my mouth and nose, surrounded by panic and I was confused. My hands and fingers were twisted from the hyperventilation and lack of oxygen, this scared me quiet a bit but had it explained to me what had just happened and all I wanted to know was where my husband had gotten to!

I eventually found myself in a room in the A&E hooked up to a stats monitor where they were keeping an eye on my fluctuating but mostly very low blood pressure and heart rate and the better half arrived in to tell me he had contacted my Mum to tell her and that she was on her way, for some reason I gave out to him for this as I didn’t want to panic her but of course it was for the best!

Hours passed, in fact a whole day of tests, x-rays, bloods, stats monitoring and they decided it was best to admit me for further observation and testing. The hubby had left me for the night as he was told to do by the staff and I was taken to a bed in a ward of the hospital where I found myself get very uncomfortable very fast, mainly just emotionally. I found myself in a ward surround by elderly ladies, I was the youngest there, my mobile phone had died, I was wide awake, feeling lonely and in a spare bed on the ward until they could sort me out properly the next morning with no curtain to give me privacy to change and I couldn’t go to the bathroom without assistance left me feeling very low.

Finally I slept and woke to heavy nausea, dry heaving and feeling completely wrecked after not having slept very well or comfortably and more testing started over the course of the next few days, almost all of which came back negative or normal. I went through nearly every test available, Bloods, X-rays, MRI, CT Scan, Hearing tests to rule out anything further related to my history of ear problems, Ultra Sounds, you name it I think I had it except for one test they had mentioned from the start of the week: The Tilt Table Test. They also had mentioned that if they couldn’t find anything in the tests I was having that I would need to be referred to a Neurologist.

While taken down for the CT Scan, I had a full syncope episode while my husband was with me and I panicked the entire ward. The re-suss team were called and I remember waking on the cold floor trembling violently and feeling embarrassed once again. The nurses down there asked if my husband was my doctor as he seemed to know what he was doing with me and knew what treatment the doctors had been given me, they were very impressed with him and so am I. They placed me on oxygen, ran the CT very quickly and sent me to my bed to sleep it off with a massive splitting headache.
Days go by and I am kept in over the weekend, I still found it difficult to walk without passing out or feeling at least extremely dizzy but I was feeling a little brighter in myself.

Monday morning comes and my doctor and his team arrive up to me again saying all the tests had been clear and I could return home in the next day but then I had another episode later that day where I was taken for a renal ultrasound and scared the crap out of the poor lady porter who hadn’t been informed of my condition and she rang the nurses on my ward to give out that I could have seriously injured myself if I had fallen out of the wheelchair I was in.

There seemed to be no communication, how could they not have informed her of my condition? Why did they want to send me home not knowing what was wrong with me and I was still passing out cold and not feeling much better? What the hell happened to being reffered to a neurologist if they couldn’t find anything and no more mention of the all important Tilt Table Test?!

Tuesday and Wednesday come and the same things happen, “You can go home, you will be fine, you just need to get up and get around a bit and you will be perfect!” I pass out yet again and this time we get very worried and very angry at the concept that all they seem to want is the bed I was in and to get me out of there not having the slightest clue what was causing it.

My husband decided to make a few phone calls Thursday morning, it was getting ridiculous and they were adamant to send me home! He called firstly the citizens advice who were useless and then rang a friend who works for the HSE and was advised to ring the Irish Patience Association, who were magical and gave us the advice we needed to schedule an appointment with the doctor and we requested our right to a 2nd opinion.

Within an hour I was scheduled for The Tilt Test for Friday morning at 11am and another Doctor (the 2nd opinion) was up to advise me of the course of action, It was amazing the way things turned around but it left me very nervous thinking I would be treated differently for ‘causing trouble’ and all I did was ask a 2nd opinion! Why did I feel so freaked about having to do it and the fact that it had to go that far to get the treatment I needed?  its just stupid!

Friday came and finally, I had the Tilt Test. All I had to do was lay on the table and was strapped on and hooked up to a ton of wires and monitors watching every vital sign I was emitting. They left my BP and heart rate relax and level out then tilted the table upright to 70º where I was strapped in and had to take my own weight on my feet.

I immediately felt my heart rate race and after a couple of minutes the pre syncope started to hit really bad. They advised me to try and fight it as the longer I stayed awake the more they would learn. It went on and on and I got worse and worse, sweating profusely and trembling violently all over, toes going numb and world going in and out of blackness…
The test was to last 40mins but they called it after 30mins where I heard one of the doctors say: “We have to call it, she is on Mitrodrine (to raise blood pressure and lower heart rate) and she is going to have a heart attack or something!”

This freaked me out but as soon at the table was tilted back I began to normalize once again but the searing headache of fighting the syncope stayed with me for days! Within 2 hours I had a definitive confirmed diagnosis.

I have Dysautonomia (P.O.T.S) Postural Orthostatic Tachycardia Syndrome. It is quite serious and will take time to manage. I will let you google what its about as it has a collection of symptoms but is caused by a dysfunction of my autonomic nervous system. It means long term medical treatment and I am currently on 9 tablets a day, down from originally 16 tablets a day and will be treated continuously for the next 18months at least (It could be life long but we just have to wait and see).

There are very few who have this and its hard to get information on it outside of the states as its only been 20 years that the condition has been properly identified and because I have the syncope episodes I am considered in the top 20% of the worst cases, id have to be wouldn’t I ?!!

I need life changes like how, when and what I eat and drink, Exercise very frequently for very very short periods of time when my body allows, increase salt and fatty intakes and loads of water, cut out heavy carbs and dairy products, to name but a few.

All signs of people that get this also have  EDS (hyper mobility and other symptoms) which I have just been diagnosed last week with Benign Hypermobility Syndrome as well as POTS until I get genetic testing to absolutely confirm EDS. I have been referred to a rheumatologist for further tests and investigations.

I was delighted to have a diagnosis before going home but I was so very angry to think they were about to send me home without knowing this, how could they do that?!

*UPDATE: October 1st 2012: 

As I was still waiting the following year (and still currently am waiting now at the end of 2013!) for the appointment to see the rheumatologist I had been referred to, Through a private appointment with specialist rheumatologist  Dr. Brian Mulcahy in Cork on the 1st of October 2012, I have been diagnosed with EDS type 3 – Hypermobility type (with some overlaps of other types) Directly affecting my joints and muscles and explains a long history of injuries (broken bones, subluxed and dislocated joints and torn and pulled muscles throughout my life. I will have to watch it going forward as it can be progressive but manageable when I am able.

It hasn’t been easy, I can still get very sick, have good days and bad days but mostly good thankfully. I have been well enough this year (2013) to go back to fulltime employment. I work from home which allows me to control my workload and get the rest I need. I am proud to say I have a job once again to occupy me and ill fight daily to keep that up 

I am still very active in my life and do what I can and get out when I can. The only thing that slows me these days are: fatigue which I always feel but I am getting better with managing it or bad pots flare ups which are far fewer now and I get pain a lot with the EDS, especially in my legs where I find I need to rely on crutches sometimes to get around as my hips knees and ankles can be so sore and unstable.  I am very thankful to have excellent support from my wonderful Husband, My family and my friends.

This is just the start of my journey with POTS & EDS that I wanted to share with you and I have been inspired to set up Irish Dysautonomia Awareness to help spread information in a POSITIVE and encouraging light to those who have been newly diagnosed with this rare condition and to raise awareness of the lack of proper treatments or supports here in Ireland.
also, remember: BEWARE the doom and gloomers  There is hope and great progress in current medical research.

I will continue to keep you updated all along the way and I would just like to say Thank you all for the support and please remember, if you would like to get involved in this blog in any way, please just drop me a line at: irishpotsies@gmail.com 🙂

THANK YOU!!

– The Fainting Goat 🙂

POTS Syndrome – Mayo Clinic

“Phil Fischer, M.D., discusses the latest research on Postural Orthostatic Tachycardia Syndrome (POTS)”

 

Video uploaded in 2009 and for us Irish, ‘Mono’ is Glandular Fever over here and is quite common.