Things never just go straight forward, do they? Nope! and of course, this time was no exception!
In I went to the UHL on Tuesday the 21st at midday, all prepared for my ERCP procedure to be done and so I could be kicked back home that evening to recover, however, little did we realise just how long it would actually take!
They popped me on a trolly as soon as I arrived as I had been dizzy all morning and they didn’t want a risk of me fainting and deemed it best that I wait in as comfortable a position as possible as I could be waiting around for a few hours.
I said my goodbyes to Keith and the nurses told us to expect to be in until at least after 5pm. Keith went home and I lay on the trolly waiting for things to start happening. There wasn’t even signal in this particular part of the hospital for my phone so I had no internet, texting or anything to distract myself!
All was well until they needed to take some blood from me and wanted to insert an IV line. This is when all the fun started!
3 nurses tried and failed, 2 lads from the Cath Lab tried on not only my hands and arms but also on my feet (Very uncomfortable to say the least!) and failed, One of the theater consultants came out from doing an operation to take a look at my veins, checked them over and said, “Nope! I will hand it over to Dr. Moloney!” (referring to the consultant who would be doing my procedure in theater)
Finally at about 6pm, Dr. Moloney comes out of theater to take a look at my veins and decides, “We don’t need bloods anyway, not to worry about it and I will pop an IV in, in theater before the procedure”
So that ended the long wait around waiting for someone to be able to find a vein, now it was time to actually get this done! The nurse helped me into a very sexy blue paper theater outfit and pushed me into theater where there were 2 nurses, the first tall doctor who had earlier come out to check my veins and said ‘Nope!” and the good doctor himself who actually successfully found IV access after a few attempts, Excellent, time for sedation… am, about that…!
I have a sensitivity to Benzodiazepines, having ended up in ICU last year after being treated with them for seizures I started having in May 2014. It turned out the first seizure was caused by a complete once off event of a lack of oxygen to the brain after a Vasovagal Syncope where I had stopped breathing. The Ambulance staff immediately treated me with Benzos, the standard treatment to stop seizures, not realizing that the more Benzos they treated me with the worse my seizures got. I was treated for these seizures over the course of about 3 months with these drugs until such time as I ended up in the ICU before realising that it was the Benzos causing all the trouble.
Thing is, Benzos are used as sedatives in minor surgeries and procedures too, which was meant for this ERCP, so the Dr. decided to sedate me through the IV with something else they had, that would make me feel a little drunk, but I was still wide awake and feeling everything!
They sprayed the back of my throat with something nasty tasting to numb it and popped a round yellow thing in my mouth, between my teeth to keep my mouth open so that the endoscope could easily pass through. My eyes watered as the scope went down my throat, into the stomach and pushed through the duodenum.
I kicked out and squirmed in intense pain as soon as this happened. I gave the doctors and nurses a good fright too as they were under the impression that I was sedated!
The Dr. looks down at me,
“You’re still with me, yeah?”
I look directly at him while gripping my right side in pain and I nod quickly!
He looks at the nurses and said
“Ok, no cutting today, lets just do the Botox Injection to numb the site, make it quick!”
He tells the other doctor to give me extra pain relief and sedative as he quickly tries to inject the site. I feel the sharp pinches of the needle, they are completely bearable compared to the pressure and pain I feel because I presume of wherever the scope is after leaning.
The procedure is done quickly, I am given more pain relief and feel the earlier sedative continue to tingle the back of my skull but the pain is still there as I am wheeled into the recovery area to be monitored.
The Doctor comes out to check on me and says that if the pain continues I will have to be admitted. I am watched for a couple of hours where I begin to spike a temperature, a reg doctor is called for me, I am put on IV fluids and painkillers and am admitted to a ward by 8:30pm.
In the confusion of trying to get me settled into the ward, make sure that I am properly assessed and medicated, the transfer of my regular meds list (Daily meds for Pots and EDS pain, some of which I cant just suddenly stop) to the nurses on the ward went a little askew and would come back to haunt me in the next few days, but ill get to that in a minute!
After many uncomfortable, sweaty, loud and painful hours they finally found a concoction of meds and opiates that got on top of my pain enough for me to want to rest for the night without feeling the need to moan loudly and annoy others in the room. I didn’t sleep, even with a sleeping tablet and much morphine but I really needed the rest.
I ended up staying in hospital over the course of a full week, in lots of pain and having major trouble with my Gastroparesis because of the opiates I was on. They wanted to keep an eye on my bloods and me to make sure nothing dangerous happened during the ERCP, incase I may have an infection or something as I was spiking temperatures on some days but thankfully this was not the case, I was just in a lot of pain.
On one day, I requested pain meds in plenty of time as I felt pain coming on only for the nurses to have been busy and left me without for a couple of hours. I ended up fainting after returning to my bed from the bathroom and I frightened the other ladies on the ward!
It turned out that when they initially admitted me to the ward my regular meds list got taken down wrong and they hadn’t been giving me my full regimen of meds that I normally take so my bp was all over the place and on the day I was due to be released my HR went up to 163bpm but settled again later with rest.
Prior to letting me go my Gastro surgeon came to talk with me and went through my meds and everything I would need going forward to help with pain and the Gastroparesis difficulties.
It looks as though things are getting worse in that department. I am losing weight, having difficulty eating anything without severe pain, bloating, nausea and vomiting and he mentioned the possible need for a Pacemaker in the bowel in the not too distant future to help with the ‘slow’ and sometimes ‘non existent’ transit in my gut, of which he wants to discuss further on my next appointment with him which is the 15th of Sept.
I was let go home a week after being admitted on raised pain meds and antiemetics with orders to take it slow and steady until they see me next month. I have been very sore and very sick. Pretty much bed bound nearly every day since being released and have even had a small seizure for the first time in over a year but I am able to keep the bright side out. Even lying in bed there are things to watch and I am eternally grateful for my wonderful husband who provides all of my supports.
So for now I am recovering slowly, I will see the specialist again next month and until then, I will keep you all updated with things as much as I am physically able 🙂 Ideally I need to get back over to London where they are specialised in those with EDS, to meet a neurogastroenterologist however, I need to get better before being able to travel once again, can you believe it has been a whole year this month since I first went to London for treatment? that story can be read here 🙂
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Irish Dysautonomia Awareness 