Updates and Everything Falls In March!

I have been so unwell over the last few months that I have missed and had to reschedule a lot of hospital appointments and now they all seem to have come in March!

I was last admitted to hospital in November last but never got around to writing about it, I was in for a week with another bout of agonizing pain in my right side and gut, all stemming from the Sphincter of Oddi Dysfunction/ Gallbladder pain I had been having all along and that already hospitalised me over 4 times in the one year previously. They took real note of my weight loss this time and started me on new calorie drinks, some new meds, as well as doing some further tests, ultrasounds and abdominal X-Rays all leading up to a second ERCP on the 28th of March, of which I will write about below!

Yesterday I had a manual wheelchair assessment with my Occupational Therapist, I have now been measured and fitted for a new manual chair as my current one is loose, rickety and near impossible for himself and myself to push, not to mention that it is far too big for me at a size 18 where I need a size 14 or 15. Yesterday, I was fitted for the new Invacare Action 3NG  (In Ocean Blue!) and have been put on the funding list for it, which means if approved, I will get the chair through the HSE but if not I simply wont get it at all, especially since I was already approved for a new Motorised Wheelchair (Invacare Spectra XTR2 Pictures Below) a few months ago (But is only good for outdoor local use and we do not have a modified car to transport it so I need a manual one to use in the home and transport) There is no guarantee that I will get approval for the manual one, We will just have to wait and see.

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March kicks off with my birthday on the 5th, I have nothing planned only to celebrate with hospital appointments which start on Monday the 6th with a follow up appointment with my doctors who look after my Pots care in UHL. This usually involves looking at the current meds I am on, seeing if they need an update, they ask about my symptoms to date and see if I require another Tilt Table Test or some other tests etc. This will have been my first ‘Pots’ appointment in over a year now so it will be good to catch up and see if any changes are needed.

 

Wednesday of that same week, the 8th, follows with a Urology appointment to check my kidney and bladder function. This Urodynamics Test needs to be done every 6 months or so now that I rely on catheters for painful urinary retention, it can leave you more prone to kidney and bladder infections and kidney dysfunction so that needs to be checked frequently to try and catch infections and Kidney dysfunction as early as possible to prevent any damage.

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Image of a Type 1 Arnold-Chiari Malformation. The cerebellum has descended 7mm and there are herniated cerebellar tonsils into the foramen magnum. – Wikipedia

The next day, Thursday the 9th, I have an MRI of my neck and spine, as ordered by my Pain Specialist, to try and rule out Chiari Malformation or other complications because of the severe pain and headaches I am getting coming from around the base of my skull/ top of my neck area, I already get ‘Occipital Nerve Blocks’, for that and ‘Sacroiliac Joint Nerve Blocks’, for the pain I get in my lower back and hips, but I find these nerve blocks are only helpful for a very short period of time (sometimes, if at all!) and are not advised for long term treatment. I have been getting them on and off for over 3 years now altogether as well as continuously taking two types of Opiates (Fast and slow release), meds for neuropathic pain, anti-inflammatories and also muscle relaxants, daily, even with all of these and the injections there has been no proper ‘cure’, especially for the severe neck and head pain, if anything that has gotten worse, so he wanted to investigate that further. We spoke and he explained that he understands that EDSers usually don’t show any evidence of Chiari during a lying down MRI, it is preferred that an upright MRI is performed for a more honest view, however there is no upright MRI in Ireland, one of the closest being in London. I may not need an upright one at all, we will see what the lie down one shows first but he said he would refer me to London if needs be. I will also be returning to London, (privately as none of this is covered by the HSE!) to see another GI specialist that specialises in EDS very soon and I will also see what that specialist suggests I do because the pain and headaches have me bedbound most days now and have worsened my quality of life, where it was very low to begin with! ūüė¶

The following Wednesday the 15th I am back down to Cork University Hospital to see the new private GI specialist I started seeing in November just gone. I won’t mention Names here but, he was recommended to me by a good few people on the Irish EDS related Facebook Pages stating that he is an excellent GI specialist who is very well read up on EDS (Also having studied and worked with the private GI Consultant who specialises in EDS, in London, that I had already heard about (and spoke about in the previous paragraph) and had planned to go and see.) It was recommended that I see him before going straight to London as he can do (in Cork) a lot of the tests they do in London, so I said I would give him a go, and I am so glad I did.

I have to say first that My Limerick GI Team in UHL are fantastic in that they have tried almost every test they could to see what is causing all my gut trouble. Since starting all the GI investigations in December 2014, up to now, they found out that I have ‘Gut Dysmotility‘ and ‘Sphincter of Oddi Dysfunction‘,¬† but beyond medicating and treating me for those, they do not know what is causing my Nausea, Vomiting, Trouble Swallowing and Severe Gut Pain that has hospalised me more than 4 times in the last year, nor do they know why I have lost over 3.5 stone and continue to lose weight even though I am keeping my calorific intake as high as possible on as many days of the week that I physically can. The team have read up on EDS where they have needed to and continue to educate themselves as we continue to investigate (The tests in Limerick are ongoing, even with another ERCP Operation with Bile Duct Sphincterotomy (where they cut the muscle) at the end of this month) but I feel we are still coming to a dead end, Especially when the symptoms have eased only a little and ultimately continue to cause daily trouble and the head GI specialist of the Limerick Team came to me already and said that it would probably be better if I went to London to see what ‘The EDS Experts’ have to say. So on hearing about the GI doctor in CUH who knew his EDS, I made an appointment and went down to see him and get his advice before I decided to go straight to London.

 

The first Cork appointment came in November and I was pleasantly surprised when I met him. He was very well read with regards to EDS, listened to my full medical history, symptoms, complaints, procedures, tests and operations that I already had. Went through the medications I was on and went through some with me that I had never heard of before but he wanted to do a few tests and X-Rays before changing my medications. When he heard I was interested in going to the GI specialist who he trained under over in London, he was delighted to refer me over and suggested that it was a great idea to get his opinion as he would have the most expertise when it came to treating GI trouble in EDS patients and he thinks this London specialist should be able to help me.

He immediately wrote up a referral letter as I was there as well as booking me in for some new tests in Cork hospital that are not available in Limerick. He said these test appointments would be sent to me in the coming weeks after the appointment and sure enough, they did, they came through very fast, a lot faster than I have experienced in Limerick. I had a Barium Swallow X-Ray done in January and still waiting on the results of that which will probably be given during the clinic appointment I have on Wednesday the 15th of March and I am currently waiting on a Gastric Emptying Test appointment which should arrive, I am told, in the next few weeks. Either way I am very impressed with this Cork based GI Specialist who knows his EDS, I will certainly stick with him, as well as the Limerick team, for now while I wait for my London appointment to come through.

Not finished yet! I have a Gynae appointment in the Maternity Hospital on Monday the 20th. Then that Friday the 24th I have an EEG back at the UHL and finally, The Big One! I have another ERCP operation thingy with a Bile Duct Sphincterotomy the following and last Tuesday of the Month, the 28th.

 

The ERCP and Sphincterotomy is to treat the severe pain, nausea and vomiting I am having because of what the GI doctors in Limerick think is Sphincter of Oddi Dysfunction. I have written and You can read about SOD and the ERCP procedures HERE.

I have already had the first ERCP procedure where they injected Botox into the SOD and you can read all about how (Kinda bad, though it inevitably worked!) that went HERE.

and that’s it!! That covers all appointments for March only! Every month there is usually something and it feels like, I only get out for doctors appointments these days! but what can you do?! ūüôā

Lette xxx

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The Good, The Bad and The Emergency! – Part 2

Continuing from Part 1…

 

the last thing I remember was falling forward…

 

Time feels like it passes differently when I find myself in these situations. I remember flashes of disjointed memories but in no discernable order. I pieced together the following description from a combination of these memories and from what I heard back from the nurses and doctors following the incident.

I wake to severe pain in my head and neck, cold and shivering hard. There’s a pillow under my head.

It takes a moment for me to realise that I was lying on the floor and had my eyes closed. I groan in pain as soon as I try to move, it was the first sound I remember hearing, then it sounded like someone slowly turned the volume up around me.

A mumbling sound reached my ears and as the volume returns to normal, I recognise a woman’s voice speaking, telling me to stay still and that everything was going to be OK. Is she talking to me? I can’t remember what happened…

The space around me seems to expand some more and I can hear a number of people talking in serious tones all around me.

Wind moves my hair as someone walks with a purpose passed my head and as the breeze hits my forehead, I can feel a layer of sweat sitting on my skin.

I am confused, hurting and feel like shouting out in pain but I find it so difficult to move and actually impossible to talk. I am unable to figure out what happened or even where I was at the time, I wanted to know where my husband was but when I tried to voice my worries I found nothing came out.

Someone started to caress my cheek and spoke softly trying to reassure me. It was only then I realised that someone was sitting up against me, holding me still with her hip and her arm around my body.

People were talking hurriedly, asking for files to be sent, people to be contacted, equipment needed, then I heard heavy footsteps walk in behind me. Someone said the ambulance had arrived. I still didn’t understand.

A pinch in my right arm, it didn’t work, need to try another one… Another pinch at the back of the hand this time…

A softly spoken female with an English accent started explaining the situation to a male with a Dublin accent.

She gave my name, age, went through generally all my medical conditions going into more detail about the EDS as the male said he had never heard of it before. When he asked what happened today I heard her say to him that I had been down here in physio when I fell off the chair I had been on and had a seizure.

The male started asking different people questions as to what they saw, how long had I been sick before this happened, did anyone see if I had hit my head in the fall.

I felt another sharp pinch, this time in my left arm, someone saying they had tried a few times for a vein but had failed, then they asked for some heat packs and towels.

A female doctor introduced herself to me, kneeling down at my left side. She explained that I had a ‘bit of a faint’, and just to be safe they were going to send me to St. James’s hospital to check that I was alright.

Though I had my eyes open, from what I can remember anyway, for the life of me I can’t remember faces, or names or what was going on around me, a lot of these snapshot memories are made up from feelings associated with what happened and from what people were saying to me at the time.

I feel sudden warmth on both my arms as a woman speaks softly into my ear saying:
“that’s only heat packs and towels hun, we are trying to get a vein”

It was only when I had felt the warmth that I could begin to comprehend just how cold I had been lying on the hard floor. People started asking me questions. I wasn’t able to¬†answer them.

The Dublin male was asking should they strap me to a body board to be safe incase I had hit my head, but then he said, with the condition I had, that the board would make me very sore and uncomfortable and he didn’t want to do that to me! He decided to wrap me in blankets so they could lift me up onto the trolly without pulling on my arms and legs. Once on the trolly, they used the blankets to cushion and support my head, neck and around the edges of my body to give as much support as possible without hurting me.

I felt another pinch in my left arm again and It failed yet again. I heard the male with a Dublin accent say it was ok, that they would try to get one in the ambulance.

They finally got me into the ambulance and started heading towards St. James’s hospital. The Dublin guy was asking me some general questions, I can’t even remember what they were now but, I tried to communicate with him through gestures and nodding, though my neck seared with red hot pain any time I moved!

He began to take my blood pressure, temperature and quickly scribbled down some notes in a pad he had in one of his leg pockets.

I began to feel funny again, the world all became silent except for my racing heartbeat and ‘Darth Vader’ breathing!

Oily darkness began to envelop my vision, I tried to fight it, but, the darkness won…

 

 

A bitter, almost metallic taste in my mouth…

Darkness…

Someone trying to reassure me, explaining that I was now in Resus and being looked after, they are holding my hands…

Darkness…

A number of serious and hurried voices, pressure around my face as someone presses an oxygen mask over my nose and mouth, severe head and neck pain and I catch glimpse of a large silver scissors, cold against my skin as they begin to cut off my clothes…

Darkness… This time it feels like it lasts a long time…

I wake with a phone in my hand, I’m still in resus, wearing a blue paper gown and covered in pale blue blankets. I am a tangle of multi coloured monitor wires all keeping an eye on my vitals, an IV Phenytoin fusion is connected to the cannula in my left hand. There are beeps and people talking all around me with an occasional metallic ‘Clanging’ sound like someone putting metal instruments on a metal top table. ¬†My husband is on the phone… I can’t understand what is being said or what is going on… They take the phone off of me and all I remember feeling at the time was scared¬†because I knew who was on the phone but I couldn’t communicate with him because of whatever drugs they had pumped into me, I was completely out of it but still worried that my husband had no idea what had happened.

I didn’t really have any idea what happened, then, the darkness came back again and I slept.

Later I woke in a small room in another part of A&E, finding myself lying very awkwardly on a trolly, my ear and neck crushed sideways into my right shoulder with red hot searing pain down the back of my skull and neck… I am still attached to an IV.

Darkness… DANGNABBIT!!! I was in a lot of pain, I couldn’t move myself and knew I had to do something about it but could never stay awake long enough to find someone to help before I passed out again.

Sometime later I feel wetness under my left side. I open my eyes to find a pool of blood coming from my hand and wrist, trickling down my forearm and soaking the bed sheet from under my elbow. It seemed to be coming from a vein that they must have removed a cannula¬†from, separate to the drip that was currently being used. There was a plaster over it but as it was bleeding so heavily the plaster was now hanging off and blood oozed very slowly but freely from the tiny puncture hole in my skin. A nurse just happened to walk passed at the time I was making some sense of all this so I got her attention and showed her what was going on. She brought some fresh bandages and cleaning stuff,¬†cleaned me up, dried me off and put a fresh bandage over it this time instead of a plaster so that it wouldn’t come off again.

While I had her there I got her to help fix my neck position, I had a voice again but it was hardly there, it took some time to get my point across but we got there in the end! She even found me a pillow and the immediate comfort I felt brought on heavy dark sleep again!

A Sudden shocking pain in my wrist! I open my eyes to see a blond lady dressed in regular clothes, no nurses outfit or doctors coat. she apologises and explains that she is testing my artery for blood gases as the test they did earlier in resus was abnormal. She had to inject straight into the artery on my wrist and it was a level of pain I had never felt before, wow! She apologised once again, took her sample and went off about her business.

Darkness… unusual dreams… pain, vomiting…

The same nurse who fixed my bleeding hand¬†and got me a pillow earlier, woke me later to change my IV¬†from the infusion to a simple saline solution and to tell me there was now a bed for me on a ward upstairs, it was 01:30am and it felt like I could have been at this hospital for days. I had no concept of how much time had already passed. I thought about my husband and if he knew what was going on. It only then dawned on me that I had no phone with me, or any means of contact to anyone! The only clothes I had on when coming in here had been cut off in the Resus room, put into a dark green¬†,’patients belongings’, bag that¬†now sat in the bedside locker next to the ward bed I now found myself in. I had nothing else other than the blue paper gown they put on me in Resus. I asked if I could call him, knowing he would be awake waiting to hear news, even at this hour.

They refused, saying it was too late and that I needed rest. I was upset at the thought of not being able to contact him but I was too drained and doped to argue.

They gave me a proper material gown, instead of the paper blue one I had on from Resuss so that I could be more comfortable for the night. They gave me my night time meds I was due and I slept restlessly again until woken by the medical team later that morning.

They asked me every question under the sun, what had happened? how had I been feeling before it happened? has it happened before? if yes, when? what happened then? has it been investigated? if so what tests have been done? in what hospitals were you tested? who is your neurologist? which hospital? is it ok if we call them to access your files and your previous history of seizures?…

They told me it was the next day, Wednesday, to me it felt like I was there a week already! They hadn’t yet called my husband to say what had happened and they wanted to me to stay over the weekend until at least next Monday for observation and some further testing.

I explained to them that I had already had lots of tests for this and that they would only be duplicating the tests that already had been done. I said I would take their advice of course, they know best, but I suggested that if it was ok that I would like to get home to Limerick to my own neurologist to continue the testing that had already started down here. They agreed this wouldn’t be a problem but that they would like to go over my files first to make sure that everything is being tested as they would like it to be and they wanted to make sure my own Neurologist would look after me when I return down here.

They said they had given me benzodiazepines to try and treat the seizures, I explained that I was allergic to them, the doctor who was speaking with me said that was highly unlikely and said she would leave me home with 2 doses of Benzos just to make sure I was covered for the journey home! I asked her kindly if she would take a look at my files first and then decide from there. She agreed.

In between heavy sleep a friendly¬†male¬†nurse came over regularly to check on me, administer medication and to check my IV’s. I kept asking to ring my hubby but they kept saying it was too early. I didn’t care about the time, I knew he would be up ¬†waiting to hear what was going on. I had a vague memory of hearing him speak to me on a phone in Resus but I couldn’t tell if I had dreamed it or not!

My left arm was beginning to hurt so much and I got a small shock when I examined it. My whole forearm was extensively bruised, from what I can only guess was the staff in resus trying to get a vein and checking my blood gasses! It looked like they tried a little too hard!

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A spot of bruising!

 

A consultant neurologist came and asked the same questions again, doctors came and went, I fell in and out of restless sleep until a nurse called my name at about 11:30am to say himself had finally gotten through to the hospital and was on the phone out in the hallway. It was only now we all realised that I was a wheelchair user so they got me some wheels, a blanket and carted me out to the phone in the main corridor outside the ward I was in. It was one of those awkward hospital wheelchairs that had tiny wheels and could only be pulled backwards to move it, that was fine until I needed to get back into my bed after the call!

He was delighted to finally get through to me, he had been trying all night. Harolds Cross called him to tell him I had been rushed to St. James’s by ambulance after having a seizure in the physio room. St. James’s never called him and though he had been calling A&E all night, the phone mainly rang off the hook, he only got answered twice, the first answer being useless as the lady on the phone couldn’t locate me in the hospital.

When he did get through to me in Resus, I was so completely out of it, I didn’t take anything he said in! He completely understood and had been super worried. Thankfully we could talk now and I filled him in on everything I could remember from my side. He wanted to come up to me straight away but I suggested¬†he should only¬†be up to collect me as soon as the doctors gave me the go ahead to go. Otherwise he could be waiting around only to be told they would be keeping me in and I strongly didn’t want that.

We came to an agreement that he would ring back in a few hours to see what the news from the doctors was by then. It was lovely to finally talk with (& understand) him! We spoke for a little while more then said our goodbyes until later.

I hung up the phone and pulled the blanket around me, I was still only in a hospital gown. No socks or slippers and it was cold in the corridor. It was only now I realised I wasn’t able to push the teeny wheeled ¬†wheelchair myself! I eventually saw the male nurse from my ward and he saw me pathetically trying to push the chair back in to the ward by somehow not using my hands as they were busy holding the blanket around me! I was flapping my right foot like an idiot in a hard effort to magically ‘waft’ the chair in the general¬†direction!

I clearly wasn’t rid of all the drugs in my system just yet!

The nurse came and rescued me from my useless attempts and when back in bed I was offered some food that I had too much difficulty eating so I just left it. I couldn’t rest properly now either, having to wait for doctors and hoping beyond hope that I’d be allowed home.

A few hours pass and I am getting conscious of the fact that my husband would be calling me back and I still hadn’t heard anything from the doctors. Finally, in what seemed like the very last minute, the female, Benzo pushing doctor from earlier came back to me!

They had gotten a copy of my files and spoke to my neurologist, all was OK for me to return to Limerick and I would be seen by my own doctors in a few weeks time. She explained that they still wanted to give me the Benzos incase I needed them on the way home in the care so it was all in the prescription and discharge letter they had given me, it was up to myself if I wanted to use them or not, though they did say my own Neuro wasn’t too keen on the idea, so then why even give them to me? Eitherway I agreed to use them if absolutely necessary and all I had to do now was wait for my beloved to ring back so I could fill him in and then¬†home come rescue me!

He rang, filled him in, I waited, snoozed fitfully (pardon the pun!) and finally a little before 6pm the husband came in to find me ready to go but I still had no clothes! Everything I had was cut off me except the tracksuit bottoms I had been wearing when I cam in so at least I could throw that on under the hospital gown and they gave me a blanket I could take home with me.

Himself carted the teeny wheeled wheelchair backwards out into the night ant towards the car. It was so cold but when I got to the car it was SO worth going out into the cold to see the sight in the back seat of our car!

There, nestled in a tiny fluffy ball right in the middle of a pile of quits, sleeping bags and pillows was my little Boo (our 6year old Cavalier King Charles Spaniel who we treat like our furry daughter and will probably be the closest thing to a daughter we ever have!) It was a treat to crawl in beside her! They had the car all warmed up, I couldn’t be upright for any great length (which seems to still be happening to this day) so the better half prepared the car with soft warm fluffy things, including our favorite pup for me to cuddle into while Keith¬†battled through traffic all the way back home to Limerick.

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Boo! 

The last thing I remember before falling into a contented snooze was Boo cuddling into my chest, all covered up and warm, watching the city lights dance on the roof of the car, feeling truly happy to just be with the people I love and going in the right direction for the first time in a good few days… HOME!

When we arrived back at the house, Keith bundled me into the couch¬†and we just¬†wrapped our arms around each other. It was so good to be back where I felt safe. We slept where we sat and didn’t budge until we woke up hours later.

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I needed a few days to recover from the knock out of St. James’s before I could even lift the phone to Harolds Cross to thank the staff on the wards and in the physio room for all that they did. They really were remarkable and I would love to get a chance to go back up when I am a little stronger but I don’t know what the outcome of this is even to this day. I was told a report of the stay would be sent to my doctor and we could go from there but I haven’t heard anything back yet.

Even now, 2 months later, April 13th, I haven’t yet recovered. I have been mostly bed bound on a daily basis. Extreme nausea, vomiting, pain, Headaches I can hardly handle and so much pain and instability in my neck and the back of my skull. Severe orthostatic intolerance where if I make any attempt to sit up in bed most days my BP drops with violent dizziness and then drives me into a full syncope which sometimes leads to a seizure.

I am constantly in and out of hospital appointments here locally since returning home and there are lots of tests being done for lots of different things. I will follow up in my post on those and another diagnosis I got in early March, Neurogenic Bladder Dysfunction Рsexy, right?!

but first…

So, Fainting Goat,  what did you really think of Harolds Cross?

Well, as you can tell from the rant and a half above, I did love the place, the professionalism, organisation and expertise of all the staff could not be faulted, really! The place is fully kitted out with everything they need, it is spotless and runs like clockwork.The place just ‘works’!

The atmosphere in the place has a spark, its comfortable and theres always a small chat or a laugh or a joke to full on discussions on random stuff going on, Oh! and, Dogs! :p I also made some really lovely friends that I still talk to now, connected through Fizzbook! so that’s really nice ūüôā

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However, in saying that, there are a couple of¬†things, I would like¬†to mention, but all in all, it doesn’t take away from the experience I had of the place at all, These are just a few thoughts.

There are only 2 consultants in the RMDU unit to cover all inpatients. Both specialise mostly in arthritis and just generally know EDS. You only ever meet whichever one you are assigned to just once a week for no more than 5 – 15mins at most. Though I found my guy¬†very straight and helpful, he¬†didn’t put me wrong at any stage, they get feedback daily from the hands on team, but, personally, I don’t know if this is enough to truly get to know the needs of the patient. A 2 week stay there in the grand scheme of life with a chronic illness, is not a huge amount of time to work with people. Though, they do follow up stays as needed, which I do think is brilliant.

The staff are excellent, happy, friendly, punctual and procedural. But they are not prepared for an emergency. and I don’t think this is a bad thing. The unit is as it states, a rehab unit. As such, it does it’s job excellently, I can’t fault it for that. I did feel they couldn’t watch everyone all the time and some people were sick for a few days before attention was drawn to, for example: pain, outside illness or dehydration. and No, I am not necessarily talking about myself here.

Other than that, I cant say a bad word against the place. The only thing that gets me is, I feel there should be no reason in the world why more¬†specialist units like these cannot be more nationally available. I have stayed at many hospitals and been to a lot of different physio centers throughout Ireland with fully kitted out physio rooms with just a couple of patients and at most 2 physios working it at any one time (perhaps that is just bad timing on my part, these are just thoughts more than anything, I haven’t done any research for proper statistics or anything!) ¬†but I almost feel like the facilities are underutilised, understaffed and I would hazard a guess as to say under funded. ¬†I feel with just a little training on how to handle the illness, more places would be open¬†to even basically helping more people with EDS or similar illnesses.

THANK YOU HAROLDS CROSS

I will stand by saying that this facility is the epitome of successful in its field, Harolds Cross, was in my experience, just excellent at what it does and offers, even for us EDS’ers.

I want to take this opportunity to thank everyone who worked with me while I was there. Everyone was professional, friendly, helpful and seemed happy in their job. You all made me feel very welcome and I felt benefit from what I learned and did while I stayed. I greatly appreciate what each and everyone of you did with your time with me!

Unfortunately I was not able to keep up with the change in pace this time but I certainly hope there will be a next time.

Thanks again.

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…and Thank YOU to all who read these mad rants about my hospital experiences!! I do greatly appreciate your time. I don’t always talk about myself (believe it or not!) ¬†I also talk about lots of different things relating to new medical research, stories from around the world as well as around Ireland, Memes and thoughts on Dysautonomia and it’s related illnesses. I also take contributions, if you would like to share anything related on the blog, please feel free to get in touch via email and if you would like to see more please follow Irish Dysautonomia on Facebook, Twitter¬†and you can find more links around the blog here ūüôā

I will update on new stuff again in the next week, have a few appointments coming up so I’ll fill you in on those, Chao for now!

Cheers, Lette

 

Admitted To Hospital, Possible New Diagnosis

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This was me getting ready to go home so I look a lot happier than when I was admitted first!

Oh dear! it happened again!

On Monday the 30th March, I was taken to hospital by ambulance after being bed bound and in severe pain with my gallbladder all over the weekend. I held out as long as I could at home because I knew nothing would be done over the weekend if I went into A&E.
On the Monday, things just got a little too much for me and we had to call for me to be taken in.

I am very disappointed with my GP in all of this. I had gone to him a couple of weeks before this happened, with a renewal script for some very strong pain killers that were prescribed to me when I was last admitted to hospital for the same thing in December. My surgeon had prescribed these opiate based drugs for the pain that helped and were needed. When I went to my GP to renew, he said only Cancer patients get these drugs and that he wouldn’t renew my script even though a higher authority than him prescribed me what I needed!

Then, when my Gallbladder pain started up again last week, we called him about getting referred into the Acute Surgical Unit (ASU) in the University Hospital Limerick, as this was said to me the last time I was in, that if I had more pain, not to go through A&E but to be directly referred in. He didn’t come through on this either. When we rang he gave some excuse about not having my files with him in the surgery he was at (His 3 surgeries computer systems are linked, he should have had all my information in front of him!) and when he called the ASU he couldn’t organise a bed for me so when everything got too much, we just called an Ambulance anyway and I had to go through the A&E system like everyone else. Which is fine but it was unfortunate the GP couldn’t come through. He has been very angry lately when we visit him. He is constantly giving out and very bitter about the HSE (Health Service Executive) and he complains to his already sick patients, This is not just coming from me but from other patients of his that I have spoken to. To be honest I am getting sick of his attitude and shortly I will be transferring to a lovely lady doctor who has come highly recommended!

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My hand reacted strangely to the morphine, the IV line was hardly hanging in my vein too so it didn’t last long!

So I was in the A&E about 10 hours, They did a chest XRAY first, then I was being pumped full of morphine through an IV line that was barely hanging on to one of my tiny veins. The doctor in A&E had tried about 5 times to find a vein and by the time I got to the ward the Line had already failed and they had to call another doctor up to fit a new one. He had some trouble and tried about 8 times before he got one and again it was just about in the vein and he said it may only last a few hours. My veins are useless and over the next week, I had three more doctors try about 18 more times to get veins and each line would fail or they just couldn’t get access, eventually during the week they give up on me and give me oral antibiotics when I am able to take them.

Just as I was in my ward Bed and getting ready to sleep, it was about 2am and they called me for an abdominal XRAY. It was over before I knew it, I was back to bed, Injected with something that helped the pain, popped on a drip and I tried to get comfortable enough to sleep.

Not a single wink was had!

It was quiet and all on the ward but I was sore, the surroundings were different, there were beeps and talking in the background and just everything that home wasn’t!

I was uncomfortable and twisted and turned through the night and into the next morning.

The following morning the surgical team came to see me and discuss my case, The same doctor and team that had me in December. He mentioned that he was happy to see me again but not under these circumstances and he felt by looking at me that I had lost weight. They ordered an ultrasound of the gallbladder so that they could compare it to the one from December when I was in then.

At that time my gallbladder was distended and had fluid around it showing infection. It didn’t respond to the fat test and showed it had dysmotility as well as gut dysmotility.

This time the ultrasound came back normal, no sign of infection in it or in my bloods. They mentioned about the possibility of taking out the gallbladder but as it looked healthy with the worry that my EDS may slow or aggravate healing, they were reluctant, as was I!

The head doctor said to give him some time as he wanted to speak with a colleague, the Dean of the Medical School at University Hospital Limerick, who knew surgeons in the UK who deal with rare cases like me. So now the waiting game begins!

I have to say he and his team are excellent. They have a real interest and go to great lengths to diagnose and be careful about removing anything they shouldn’t unless they absolutely have to! They also have an interest in learning more about EDS which is great to see. Unlike some of my other doctors who just don’t seem to care at all.

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Gadgety Bed!

Most of the time I was trying to sleep on the very comfy gadgety bed that I could move into all sorts of comfy positions or stoned out of it so all I could do was lie there in a sweaty trance trying to ignore pain and wishing sleep would come to me!
My BP was very low as I hadn’t been eating for many days due to horrible nausea and vomiting so I had missed my regular meds for those days. Over the week, once the nausea was controlled I was taken off the fast and put on a light diet, I could hardly eat anyway but getting a tiny bit of nutrition really helped. I was also able to take my regular meds which helped normalise my BP and I began to feel a little human again.

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Mostly pain meds, an antibiotic and meds to raise my BP

On Friday, as it was coming up to the long weekend I was eager to get home, though still in pain and I had no clue as to what they wanted to do with me, I asked what was the possibility of me going home for the weekend? and they said no problem as long as I was prescribed everything I needed! YEAY!!! I was delighted then everything came together! I was visited by some doctors and got some information, finally!

I was seen by a pain specialist, she was going through my pain meds and what I needed to be comfortable at home until they call me into them next week where they can review everything and make a pain management plan going forward.

Later on, I was visited by a UK Surgeon, The Dean of the Medical school. He told me he trained and studied under Prof. Rodney Grahame (The Prof. in London who officially diagnosed my EDS) and highly respected his opinion. I was delighted to speak with him. He was a gentleman and explained to me what he thought was going on.

They as a surgical team discussed my case and came to the conclusion that the gallbladder may have been masking the true pain that could be coming from a thing called the ‘Sphincter of Oddi

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I know right, WHAT? Never heard of that before, but long story short, there is a little valve thingy under your gallbladder that allows bile though it to add to the pancreatic juices that feed into the digestive system to help you break down and digest your food. This sphincter opens and closes but if you have this dysfunction, it remains clamped shut and cramped and causes a back up of bile and severe abdominal pain. It is most common in people who have already had their Gallbladder taken out, I still have mine so it is a strange one!

There is a test to check for it called ERCP, endoscopic retrograde cholangio-pancreatography, a procedure that uses an endoscope and looks directly deep inside the duct system while taking pictures and measuring pressure. You have to be sedated as it is way deeper into your system they have to look than a regular esophageal, stomach endoscope or similar.

While they do this, they inject some Botox into the tiny sphincter itself which relaxes it and allows it to open again. If after about 2 weeks your pain is gone, this is a sign you have the dysfunction.

The cure for it? a series of ops where again I will be put to sleep and they have to cut the sphincter to weaken it to the point where it can’t clamp up any more. This should take a few turns because if they do it all at once and cut straight through it, there is serious risk of heavy bleeding with this so they do it in small stages over time to make it safer.

This procedure however, has never been done in the University Hospital Limerick and it is not licensed here. But they are seeing what they can do for me, if it can be done, I will be the first person they will have done this op on! If they cant license it here, I may have to go to The Matter Hospital in Dublin or even as far as the UK if needs be, however because I am being treated publicly, these procedures if done in the UK will be fully covered by the HSE. This is a huge relief!

So in the mean time, He and the surgical team looking after me are going to sit down with some other doctors in a Multi Disciplinary Meeting where they will discuss my case and how to proceed with it and once they have a plan in place they will call me in for the initial test. I feel kinda special! but I can see why this meeting needs to be done. If I do have this thing, those procedures need to be licensed and I am sure that includes some amount of paperwork!

So for now, I am happy to be home with the furry pup and himself, I am comfortable (enough) on the pain medication and I await my appointment for next week to be called back in to the Pain clinic and then the appointment to be followed up by the surgical team.

For now, I will try to relax and recover, it is hard on this medication as it has some nasty side effects, but if it helps the pain I cant complain! HA! could put that on a T-Shirt!

Anyway, that is all for now, I will update again soon ūüôā

Lette (Fainting Goat)