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!)

The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

I am delighted to say that Irish Dysautonomia Awareness has been entered into this years “Health & Well Being” – Personal Blog – Category in the blog awards nominations and hopefully will make the long list at least, that’s where it got last year so to make that again would be really nice! 🙂

If YOU would (Please) like to Nominate this blog Please click HERE (Give it a minute to load, it can be slow!) or click the image below and follow the instructions. I would greatly appreciate your input, THANK YOU! You need to register with the site but you can do so quickly and easily  by signing in with your Facebook and you can control what information you give them.

Please enter The Title of the blog: Irish Dysautonomia Awareness,
Also pop in the URL of this Blog which is: https://irishdysautonomia.wordpress.com
also please be sure to enter it into the ‘Health & Well Being’ – Personal Blog – Category.
Thank you ever so much!

Please click here and enter the info to Nominate this blog! – THANK YOU!

This year there is also an entry to nominate your favorite Blog Post from the blog here. In the last number of months the post that has raised most interest seems to be this one:
‘The Good, The Bad & The Emergency – Part 1’

I would also greatly appreciate if you have the time, to maybe nominate that blog post Please and thank you most kindly! as far as I can figure, there’s no harm in trying! 🙂

It is the same process as the first, please click Here:
Hit ‘Nominate a Blog’ – Enter the ‘Blog Post’ Title as: The Good, The Bad & The Emergency – Part 1

The Blog Post link is : https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

The Category is ‘Best Blog Post’ – Personal Blog

Please Click Here and Enter ‘Blog Post’ Details (As I have laid out above) for Nomination – Thank You

Thank you so very much for you time in doing this each and every year, I may be back to you for more support if we make it to the ‘public vote’ part but even if it doesn’t get anywhere, a few more people will view the blog as a result of just entering and further our much needed awareness, even just a teeny bit.

Thank you once again,

Lette – Fainting Goat!

The Good, The Bad and The Emergency! – Part 1

*Please Find Part 2 of this post ‘HERE’

WOW!

It has been a long while, so sorry about that, so much has happened and I needed time to recover and get myself straight again before I decided to update.

Harolds Cross happened, and it was great!… while it lasted! Of course, we all know, nothing goes straight forward for me so yeah, there’s a bit of a story to go with it!
The day before I went up, I got my hair cut… It was A DISASTER! No, seriously, Look…

Me pulling the pissiest face ever! Never go to a cheap hairdressers! Jeebus! Lesson learned!

Then on March 15th I also got another new diagnosis (Neurogenic Bladder Dysfunction!)…yeay!
Lets just get straight into it shall we?

Harolds Cross – Rheumatic and Musculoskeletal Disease Unit (RMDU)

I’ll start with Harold’s Cross.

I got called up there for 2 weeks at the start of February, not really knowing what to expect, I had asked for other peoples experiences of the place in some of the Facebook support groups and I got very mixed reactions. Some people loved the place and couldn’t praise it high enough, yet at the same time, there were just as many negative replies from people who didn’t find it any good for them, at all.

I made up my mind that everyone is different and I wouldn’t know how I feel about the place until I gave it a good go myself!

Up early and ready to rock!

Up I went on the Monday morning. It was freezing hard and we had to be on the road leaving Limerick very early in order to arrive up in Dublin for 9am. We met no less than three car accidents on the way out of Limerick because of the state of the roads but thankfully it eased off passed Tipperary and then we were well on our way.

Icy roads at sunrise

Of course, I got us lost on the way through Dublin and that was with a SatNav, I know, it takes talent to get lost using one of those but there ya go!! We did finally arrive and in I went.

Harolds Cross is very large, with lots of different areas to cater for different medical needs, everything from inpatient palliative end of life care to week stays and day cases for varying degrees of physical disability and the individual treatments involved.

I was immediately struck by how clean and bright the place was and how very friendly the staff were. As soon as anyone saw the chair I was asked if I needed help with anything.

Once I was all signed in, I was escorted upstairs to my ward for the week, The ‘Sacred Heart’ ward and I was assigned to bed 13 under the consultant Prof. V.

13 seems to be my lucky number! I have gotten this bed number, 4 or 5 times already during hospital stays!

 

As soon as I was in the ward I was delighted to see it was spacious and open with two separate units, the first had three beds with men in them, then through an opening in the centre of the ward you come through to a bigger area of six beds, all women and this is where I was. The ladies all introduced themselves and everyone was so friendly, I was made feel very welcome and even more delighted to know there were another two EDS patients in the unit with me! One on my ward and another in the ward upstairs.

I was assigned a wonderfully kind young nurse with an English accent and she sat down for ages with me taking all my details and full medical history, telling me everything that I will experience going forward, what will happen, what is available and where to find everything. Everything sounded great so far.

I was to meet with the consultant first, he would come to see me on the wednesday of each week. Then the Doctor and nurses would look after my needs in between. the pharmacist would review my meds, and make sure everything was up to date and OK to see if anything needed to be added or taken away etc. I would be assigned an EDS aware physiotherapist to work with my individual needs on a daily basis and an occupational therapist to cover everything else like home needs, medical aids and equipment, pain management etc. other services included Podiatry, a specialist foot care clinic that could fit you for orthotics, a social worker who gave advice on social welfare, back to work or college needs as well as a stand in as a bit of a psychologist if you needed to vent! There were relaxation classes and specialist talks on various weeks covering things like pain management and the like.

I was utterly delighted to find out that they had Therapy Dogs that come and visit the centre regularly and I was lucky enough to get to meet ‘Rian’ one day on the first week, a beautiful, great big, gentle, golden retriever that I spent time giving rubs and loves to! 🙂
On the ward then, as well as handing out and sorting your medication, food (which was mostly fresh or freshly made that morning as well as doing what they could to cater for special diets and allergies!) and some other needs, you could also request hot or cold packs if you needed to sooth sore, achy joints and muscles. I thought that was a lovely touch to be honest and I wish it was available in all hospitals. Hot packs, for me anyway, bring another level of comfort that cant be touched by conventional medicine.

The food, staff and facilities were really great and they did what they could to cater to special dietary needs!

They have a hydrotherapy pool also so this should have been part of my treatment while I was up there, however, they were in the middle of renovations and unfortunately a couple of weeks prior to my going up, one of the building machines ended up bursting a water pipe and put the pool out of use for the time I was there. This was a huge pity as I feel the water would have helped hugely in the exercise and also in helping the muscles to relax and recover while there, but it was not to be this time anyway!

The first day was all about settling in and finding my feet around the place, after the traveling up and all the new sights to take in, I was tired and ready to rest. The very next morning I met the consultant.

Sleepy time in Bed 13!

He was friendly, had clearly read through my file and extensive medical history and went through all that with me. He was clued in about EDS, but just generally I found. Anything he said to me, wasn’t new, it didn’t blow me out of the water by any means but he knew what needed to be done to help, he was reasonable and didn’t pretend to know more than what he did, which I appreciate in any doctor.

With his advice my treatment was about to begin properly, the doctor and pharmacist went through my medications and it was determined that, because of the issues in my gut and the fast weight loss I experienced, I was more than likely not eating enough calories most days, and on the days I was eating enough, I seemed to be not retaining the nutrients and calories and as such, continue to lose weight and energy. They tried me on a few different types of nutrient drinks to help me along and wow… they all tasted rancid! I cant have lactose or wheat so I could only chose from a handful of watery, metallic tasting ickiness!!

Forti-yuck!

However, I was there for treatment, and I was going to give it a good go so I drank them but as I was particularly nauseous that week, a lot of what I ate and drink didn’t stay down.

The next big chunk of treatment, probably the biggest was physiotherapy. My assigned lady, lets call her, ‘A’, she was a gem! She really took her time during our first assessment together where she examined my body, all the problem areas and even finding problem areas that I didn’t even know were problem areas!!

I found her to be very good, very clued in about EDS and was extremely careful not to push the areas that caused most trouble. She understood that ‘feeling’ the muscles and joints being used was ok, but there should be no pain.  She was all about increasing mobility out of the wheelchair but she never dismissed the chair and it was always there for when I needed it as of course I would need it continuously going forward. She understood that EDS isn’t curable but that exercise would help better define the weak muscles and as such they would help keep the joints tighter and better hold them in place, preventing further subluxes and dislocations. Other than that, bringing up my general fitness was another priority that would only benefit me going forward.

Once the assessment was all done, she had a printed, individualised exercise program ready for me to follow on a daily basis which included a simple warm up on a bike, starting at 2 to 3 mins with no resistance, if I could even reach that, hopefully as I continue the week, ill be able to increase that time by tiny amounts. From there I had floor exercises to follow that concentrated on my lower body problem joint and muscle areas. After these I had some standing exercises to concentrate on problem upper areas of my body, followed finally by some work on the parallel bars to help practice walking short distances, resistance band exercises and finished with a cool down, simple stretches to some areas and lastly relaxation on a physio bed with heat packs.

My constant companion in the physio room!

 

Though I had been very ill the first week with vomiting, it had still gone amazingly well.  I arrived on the tuesday and found everything to be excellently run at the center. The staff, the food, the facilities everything had been really good and before I knew it it was friday evening and time to be coming home again for the weekend rest before going back up the following Monday morning. This was both a welcome and a tormenting touch to the whole stay.

Getting up and down from Dublin to Limerick was not easy, there were early starts, long journeys in the car which are tough with chronic illness at the best of times and no sooner you get settled back home for the weekend, you are getting ready to drag everything back up to Dublin again. Going by train wasn’t really an option, even with free travel, traveling with chronic illness is unfriendly to other passengers when I need to vomit after 20mins of vibration! Getting from the train station to Harolds cross with bag and baggage wasn’t really feasible either, needing to travel with a wheelchair and carrying crutches, other medical aids and a ton of medication wouldn’t have been easy, so driving straight there and back in our own car, at our own leisure was a more comfortable option for us.

I also found seeing my hubby so briefly for the weekend was a lovely treat in the middle of my treatment but saying goodbye again can be horribly tough. I understand not everyone who is sick has a partner or ‘better half’, but I think this goes for any family members you may come home to including parents, siblings, close friends, carers etc. Seeing anyone you care about for such a short time and then saying goodbye to them again is never easy, no matter who you are!

I know Dublin is only ‘Up the road’ by some peoples standards but it’s still a good 3 hours travel time to and from the place and that takes a massive chunk out of your day. It doesn’t make the 2 hours visiting hours seem worth it when traveling up takes so long around it!
It also costs a lot on petrol so we decided to drive up and back but to leave visiting during the week as it wouldn’t be worth coming all the way up when the visiting hours are so short. Thankfully Skype made this a whole lot easier and I spent a lot of time on video chat home to himself and the pup!

As I had been very sick during the first week in Harolds Cross, vomiting almost daily down on top of the increased activity it turned out I had lost over 2 kilos after just 4 days. By the time I got home during the weekend I was in excellent spirits and couldn’t wait to get back up but I was very low on energy and spent most of the weekend sleeping to catch up on my energy reserves for the next week. This had my husband slightly worried and he wondered if I should return back up at all. I decided to give it a go anyway. I wasn’t going to be given this chance lightly again so I really wanted to give it my best shot.

Back up bright and early on Monday, I was launched into everything again straight away, Physio, OT appointments, I was to meet with the pharmacist this week too as well as the foot care clinic to get fitted for Orthotics for my very flat feet, a busy week planned, I was excited for it, but I was so very tired…

I got through Monday, but the pain and nausea started to get very bad by bed time. I had been vomiting on and off throughout the day, found it very hard to eat, even to stomach taking a drink of water. The back of my lower head and upper neck were beginning to sear with pain, I had very little sleep, was extremely uncomfortable and by Tuesday morning I started getting visual auras.

The staff were excellent. I informed them of the symptoms and they kept a close eye on me throughout my stay while I was unwell but especially this day. They kept track of my hydration and food levels, taking note of what volume I had gotten sick etc. My head was terribly heavy and my stomach was very sick. All I could do for a lot of the morning and afternoon was try and sleep.

By 2pm, I felt one of the nurses touch my shoulder and gently wake me to say,

“Lette you’re due down in physio, ‘A’ wants to know if you are going to go down or leave it today? It’s entirely up to you, take a few minutes to wake up and see what you want to do.”

I had been asleep for over an hour at this stage and had been resting all morning. I woke feeling tired but not as sick as I had been so I decided I would go down and try to do a small bit at least.

When I arrived at the physio room, ‘A’ greeted me and I told her I had been feeling very unwell. She understood and told me to take my own time, not to push myself too much and if I needed to stop at any stage to just do so.

I started my warm up on the bike and though I had managed to increase my warm up the previous week to nearly 6 mins, today I could only manage 3 minutes and it felt like the longest 3 mins of my life. Once this was done I had my floor exercises to do so grabbed my crutches and slowly hobbled my way over to the matted area with my printed program in my hand. Got down onto the mat to start my leg exercises and started to feel very strange. I slowly finished what needed to be done and I sat up to try and gather my head. ‘A’ came over and I told her I started to feel very odd. She got a chair for me and brought it over next to me. I tried to get up onto the chair and did so with massive difficulty. I felt like I was moving through treacle and my vision was begining to go black. I told her I couldnt see properly and she helped me into the chair, told me to take a quick breather and that she would be right back.

At this stage I actually couldn’t see properly at all, everything was going in and out of oily blackness alternating with swimming milky white blobs. I felt pressure build in the back of my head and push forward through my sinuses and out my ears.

I leaned forward resting my elbows on my knees, feeling a trickle of sweat tickle as it ran down my forehead, over the bridge of my nose and felt it drip off the end. Everything happened in slow motion.

The sound stopped all around me, everything now pitch black, the pressure in my head was immense, burning nausea rising in my throat which felt like it was now closing up, breathing hard, heartbeat flying…

 

heartbeat…

breath…

 

 

 

the last thing I remember was falling forward…

 

 

 

 

 

 

*Part 2 – NOW HERE!

Management of Hypermobility Syndrome – one day course – 8th March 2014

Heads up Physio Therapists (or if you would like to let your physio know about this) Dr. Jane Simmons, from Prof Rodney Graham’s team (he is known as ‘The specialist’ in the know on EDS and Dysautonomia, based in London – This is happening the day after the EDS Awareness Ireland Conference, again in Cork, would be very well worth going for your physios if they can make it :

Management of Hypermobility Syndrome – one day course
Date: Saturday 8th March, 2014
Venue: Performance Physiotherapy, 26 South Bank, Crosses Green, Cork
Contact: Sinead Murphy performancephysiocork@gmail.com
Facilitator: Dr Jane Simmonds
Organiser: Sinead Murphy MCSP

UPDATE: This is open to Physio Therapists only, so pass on the info to them 🙂