My hospital stay – part two

I am well aware in my last post that I didn’t even touch upon the whole point of my admission which was the octreotide trial. If you’ve read the last post you will understand why!


My admission for the octreotide trial was planned, although the first admission date had been cancelled it went ahead the following week. My understanding of a “planned” admission is that all medications, tests, and the like have been ordered and are ready and waiting and that staff have been briefed about why you are being admitted and given a clear view of your medical condition so that you receive optimal care.


Maybe my expectations are too high, I come from a retail background where daily we did things like handovers, planning and contingency plans. Everyone (99% of the time) was briefed, knew what role they had to play in the endeavour and someone was responsible and accountable for the plan being executed. If any part of the plan did not deliver, we would look at the root causes of what went wrong and ensure the same mistake didn’t happen again. Sometimes events happen that you could not have foreseen but this is how a business operates and to a large extent ( I am not saying the NHS should be carved up by private companies I am 110% against that) the NHS should be operating ( where it allows ) along these models. By not doing this it means its opening itself up as a target for those who want to do away with this magnificent organisation which is a tragedy. There does need to be serious reform, layers of management stripped away, investment in frontline staff and not the closing down of local emergency medicine units  but what it needs the most is communication between staff / departments and between medical professionals and patients.


Why is it people set so little store by communication? It amazes me, as communication is key within any organisation, the NHS even more so when failing to communicate can lead to serious mistakes costing lives.


The first major obstacle when arriving on the ward was the staff, although having had access to my medical notes, clearly had very little understanding what severe autonomic dysfunction was or how it affects me. They talked about my condition in front of me but at no time actually asked me. All they perceived the problem to be was low blood pressure and an increased risk of falls, if only! This lead to the ridiculous situation where they insisted I was escorted to the toilet (which never happened, due to me making my own way there and back) and insisting that I was accompanied and watched whilst showering but that was the extent of my care. 


Yet at the same time when they made my bed the following morning they were quite happy to leave me standing whilst I waited for them to finish as they had placed all the clean linen on the chair. Leaving me the only option of sitting on my wheelchair, whose brakes had been left off when they had moved it, so I rolled back into the bedside cabinet. Face Palms!


It was agreed that the octreotide trial would start the first evening of my stay. However the pharmacy seemed reluctant to give the medication to the ward. Despite being notified of my admission and being chased up from 3pm onwards the octreotide did not arrive until 18:45. My dinner had been served at 17:00 so I had to sit and watch it slowly congeal as the drug needed to be administered before I ate. I also had the domestic staff popping their heads in every ten minutes asking why I hadn’t eaten, “did I not like it?”and “did I want something else?” I can’t fault them for this approach, on a dementia ward it can be a battle to get some patients to eat. I was bloody starving having not eaten through nerves, so inside I was crying knowing that I would have to wait until the octreotide arrived.



Congealing baked potato with baked beans and a yogurt warming to room temperature!


Eventually I got my injection and a cheese sandwich was located for me. I have found a cheese sandwich is the safest option for a vegetarian when in hospital. (It probably doesn’t contain vegetarian cheese but I am not that strict when it comes to cheese etc). People still seem to struggle with the concept of vegetarianism. Once when admitted on another “planned” admission I was given a baked potato with Tuna and mayonnaise as the vegetarian meal. The nurse was quite miffed when I pointed out this wasn’t a vegetarian meal. She hastily scrapped the tuna off my baked potato and handed it back to me. I managed to piss her off again when I said that I wanted something else, opting for a cheese sandwich that was prepacked and had no meat surreptitiously scraped off it. Eating off the hospital menu is much safer as it accommodates for all, however arrive in the afternoon when the person who vacated your bed prior to your arrival, has ordered from that days menu and that’s what turns up as your evening meal, vegetarian or not!


I still had a small postprandial episode, I was expecting as much due to not having eaten all day. Plus a sandwich is pure carbohydrate and that makes it much worse although with me any food group will do it. I did notice that although I ended up falling asleep for 20 minutes I didn’t wake up as confused (for some reason though I woke up and thought I was back in my bedroom at my parents house, where I haven’t lived since 1996!) and the tachycardia that preceded my doze wasn’t as forceful. This was exciting stuff as it meant the drug was working. I did have a small amount of gall bladder pain and a bit of bloating but it was minimal.


My octreotide was being used in an off label way to treat postprandial hypotension by stopping the blood pooling in my abdomen. The staff were familiar with the drug having issued it to patients before just never in this context which became abundantly clear the following morning.


At 6am I was awoken by the nurse that I had argued with about pain relief and bedsores. She was brandishing a hypodermic needle and telling me it was time for my octreotide injection. Having been in hospital more times than I care to remember, I knew that breakfast would not be served until at the earliest 8am. The injection was supposed to be administered 20-30 minutes before food. So we had a problem. I asked quite casually if breakfast was coming shortly and was informed no. I pointed out the injection had to be done shortly prior to food, I was informed breakfast would be in the next few hours and was that ok? The obvious answer was no. I have to give credit here to the nurse, although we clearly didn’t get along, she suggested she got me some toast and a cup of coffee and then she would do my injection. Disaster averted.


In my notes the time given for my injection was 6am, which had been written up by either a doctor who hadn’t seen me, doctor nice but useless or someone who had forgotten the purpose of my stay. Another error of communication, or staff ignoring the instructions of others. This was starting to grate on me that my case wasn’t being handled properly. It was only the fact that I was alert enough and strong enough to advocate my own care that this injection was not administered without food. Which I now know through accidentally forgetting to eat after giving myself an injection would have sent me into a full on hypoglycemic attack.


Injection administered I happily ate my toast and slurped my coffee. I noticed that after my injections I was getting a strange headache in the base of my skull and a strange feeling in my tongue accompanied by a metallic taste. I hadn’t had the horrific reaction I had feared which is usually projectile vomiting and profuse diarrhoea. Hence why I had packed numerous pairs of underwear and pajama bottoms!


My consultant popped his head around the door at around 9am, I had a frank discussion with him about the fact that staff were trying to give me the octreotide injections without food and that my pain wasn’t being managed. He told me that he thought that I would be better off at home where I could look after myself, administer my own pain medications etc and that he would keep me on the same dose that I was recieving now. As we were coming up to the Easter bank holiday he also gave me his own private mobile (cell) phone number to contact him If I had any problems. A&E or an emergency doctor, which would be the only healthcare accessible over the bank holiday weekend would be unable to deal with my case. Far better should things go pear shaped over the weekend that I should be able to contact him directly. I was touched by this gesture, some people may say its just good doctoring and whilst yes it is, this level of care or compassion had never been shown to me before in a hospital setting. With most hospital doctors I have found its a case of out of sight out of mind. Dr B would surprise me again in a few days time.


I would only be allowed to go home on that day, if I had been shown how to inject the octreotide. I was told that a nurse would come and show me how to do the injections and would make sure I was happy with it before I would be discharged. That was the theory, in practice the only words to describe it adequately are piss poor.


At 12:30pm my nurse came in with all the kit ready to show me how to subcutaneously inject my octreotide. I asked if lunch was on its way as the exercise would have to be abandoned if it wasn’t. I wonder how many of you have guessed what happened next…



An arty shot of the injection kit left in my room because you guessed it lunch wasn’t coming!


An hour elapsed before lunch arrived and no sooner had my plate been set down my nurse arrived to “teach” me how to inject. I have put the word in teach in inverted commas as it was a joke. No diabetic patient who injects multiple times daily would have left hospital with such a brief teaching session on injecting themselves. I was handed a syringe asked to load a certain amount into it and check for air bubbles. All of which I did ok. I was then told to pick a spot on my stomach, pinch the skin and inject myself with the diamond shaped side of the needle pointing upwards and push the plunger down. Again I did all of this ok however I wasn’t told to release the pinched skin and count to three and then remove the needle. I removed it with the skin still pinched so a large amount of what I had injected oozed back out again. That was it, that was my teaching session on injecting myself. No oranges to practice on, no question and answer session, the nurse just packed everything up and left the room.


Injecting myself was no big deal but once I left hospital I actually learnt more from asking questions on facebook than I was ever taught in hospital which shouldn’t have happened. I found out that the gastrointestinal symptoms are much less if you leave having food until 40 minutes after the injection. I also learnt that octreotide injections can be drawn up and stored at room temperature for two weeks which means the injections sting less. 


In hospital one dose was taken from each octreotide vial and then it was thrown away. This meant 75% of an expensive medication was simply tossed into a sharps bin, thats criminal! I get three doses out of one vial, I lose 25% of the meds due to it being drawn up through one needle and then I change needles to carry out the injection but I am not throwing away 75%. This stuff doesn’t have to be kept in a fridge if being used in the next two weeks. So only one vial of the medication needed to be used during my stay instead of three. I know that this drug in Australia costs thousands of dollars a month to be on. Its expensive stuff, to not load other syringes up with it when you open the vial seems lazy and not cost effective. When I discussed this with my gp over the phone I could literally hear him rolling his eyes! When the NHS and the country is in a period of austerity why was this drug being thrown away? I could have been sent home with the preloaded syringes. They wouldn’t have gone to waste.


I managed to get home that night after a lengthy wait for the pharmacy to get the octreotide dispensed. The nurse in charge of my medications on discharge was the most miserable person I have ever had to deal with and I’ve met lots of miserable people over the years! She didn’t crack a smile once and answered any questions with as few words as possible. When I asked for a sharps bin to dispose of my used needles at home you would have thought I had asked for a bar of gold bullion. I had to remind her constantly to get my opiates out of the wards controlled drugs cupboard and also my steroids from the fridge.


I couldn’t wait to escape, just as we were about to leave a healthcare assistant that I have got to know over the last few years as she helps at Dr B’s clinic popped her head in to say hello. I was greeted with the usual hug and kiss from her which I could see from nurse ratchets expression did not go down well! After a brief chat with S, the lovely HCA we made a break for it, narrowly avoiding being crushed by the doors on the way out.


At home injecting was fine if a little nerve wracking. The first day I did it without my husband in the house my hands shook! Having heard how nervous I was he suggested that I draw 3 doses worth of octreotide up at one time and store them ready for injecting. That way I wasn’t putting pressure on myself to load up the syringes and then inject. A very sensible idea which has helped me loads!


In hospital I had been having two doses of octreotide a day so I continued with this. By the Sunday I had become very cocky and upped this dose to three, big mistake! I was up all night being hideously ill.


On the Monday ( Easter Monday) at 930am aprox my Consultant rang completely out of the blue, to check how I was. I told him things had gone ok until I upped it to three times a day. He told me not to inject that day and start again on the Tuesday at one injection a day.


I am still all these months later stuck at one injection a day as I can not tolerate anymore than that, which is a shame as it works so well. Presently due to the bouts of cellulitis, I have stopped my injections as the antibiotics I am on really mess up my innards. I am also loath to give myself an open wound every day when the cause for my two bouts of cellulitis in a month is unknown. Once I have stopped the antibiotics and been free from infection for a few days I will start them up again. Without them the postprandial hypotension has been a nightmare. 


My kit including the worlds smallest sharps bin (sarcasm alert!). And yes thats a dog biscuit tin that I am storing my needles and syringes in!



Octreotide trial, the results!

On Monday 14th April I made the call that I had been a little apprehensive to make, I rang the ward to see if there was a bed available for my octreotide trial. The answer was a resounding yes and then the nerves kicked in big time, up until then I had been relatively calm.

The disasters of my stay will be fodder for a future blog post (s) when I feel less like I’ve had a bus and then several cars run over me. However for those of you interested in the results I thought I would do a quick update today (Wednesday 16th April) ready to be published on  Thursday 17th April 2014.

I managed to get home a little after 24 hours on the ward and by this point I had tolerated three injections of 25mcg, one of which I had done myself. The injections are subcutaneous so theres no finding a vein which would be a complete disaster for me. If a hospital phlebotomist has problems and they take blood all day everyday theres no hope for an amateur like me!

The injections need to be done in conjunction with a meal as my symptoms are at their worst in the two hours after I eat. The first injection stung a little, the needle going in doesn’t hurt its the octreotide going in that does. However I’ve had some great advice from fellow users courtesy of facebook and know that it is best to get the dose up to room temperature before injecting it.

With the first injection given to me on Monday evening, I still had a little episode after eating where I went to sleep and then woke up confused thinking I was back at my parents house in a completely different city. The confusion didn’t last long and I came out of it pretty quickly.

My second injection took place at around 7am on Tuesday morning and I had a few slices of toast to see how my body coped with another carbohydrate heavy meal ( it really doesn’t matter what I eat, protein or carbs I will crash all the same but carbs are the worst). After 45 minutes I had some tachycardia but it wasn’t as forceful as normal (by forceful I mean it didn’t feel like my heart was trying to break out of my chest. That’s how it normally feels after I’ve eaten) I did have a little sleep of 20 minutes but I had, had such an awful nights sleep that at some point during the day a nap would have been called for.

At around 930am my consultant popped in to find out how I was doing. I really don’t like being in hospital and the usual confident young(ish) woman that he has got to know over the last few years had vanished. Before him was a quivering wreck that was close to tears with the stress of it all. Hospitals / doctors / anything remotely medical makes me extremely anxious these days due to horrific past experiences, so I think he was genuinely shocked at the state I was in. Having told me the day before that I was going to be kept in all week and I had managed to bargain him down to Wednesday morning, he decided that I could go home later on that day provided I suffered no side effects from lunch times injection and that I did the injection myself!

At around 13:30 I did my very first injection, having been talked through it by the nurse. All went well until she forgot to tell me that the skin that I had pinched to put the injection in, had to be let go of before removing the needle – otherwise what you have injected oozes out! I haven’t made that mistake again!

I’ve suffered no  hideous side effects from the octreotide. All I have experienced so far is a strange metallic / salty taste around 20 minutes after injecting, a strange burning feeling in my mouth and throat, a minuscule amount of nausea and an empty feeling in my stomach. None of these symptoms are so dire that it would want to make me discontinue the medication.

Even on the tiny dose that I have taken there have been improvements. Today I’ve had no tachycardia after eating, on checking my blood pressure it was a healthy 115/80 with a pulse of 68. I never have a normal blood pressure unless I am in a lot of pain or I am incredibly stressed and my pulse never goes below 80 beats per minute. It usually resides in the 90 -100 zone, so a low pulse rate is incredible. I also took a shower whilst the octreotide was still in my system ( it leaves the body after 90 minutes) and I had no blood pooling in my legs. Normally when I shower they are a livid pulsating purple colour and at the same time my internal organs feel like they are falling out of my body onto the shower tray beneath me.

However I need to stress this isn’t a cure, for want of a better word my autonomic nervous system is screwed and my condition is worsening. I will only improve whilst the drug is active in my system. There is a slow release injectable version of this drug but I am in the trial phase at the moment and that won’t be considered until my consultant and I are sure that the drug is improving my condition.

As soon as the drug wears off my heart rate soars and my blood pressure plummets. For the 90 minutes whilst its working, so far I haven’t noticed any change in energy levels but then I have a hospital visit to get over! So the injection currently improves my post prandial hypotension and tachycardia for 90 minutes three times a day. The rest of the time I still have tachycardia, orthostatic intolerance and painful joints due to the Ehlers Danlos Syndrome.

I know that this is a much shorter post than normal for me but I am exhausted!

This is the “sharps bin” and pack of syringes I have taken home with me! The bin is enormous and we are now trying to work out storage solutions for all my syringes so the house doesn’t look quite so goulish! I am thinking about getting some nice fabric and making a drawstring type bag to cover the outside of the sharps bin!

Palpitations, arrhythmia – heart stuff!

Since my nose dive early February I have been experiencing the worst palpitations I’ve ever had. I have the feeling of my heart pounding for hours on end, before the nose dive it was just a few minutes numerous times a day particularly on exertion. Its new to me and new is scary especially when I’ve been told I have an arrhythmia.

The arrhythmia was discovered during the tilt table test last month. I listened to my consultant as he stroked his beard and said over and over again “wow, I’ve never seen this before”. When I asked him what he was referring to he said during the tilt my heart never sustained a rhythm but went all over the place and my blood pressure never steadied. It dropped and rose all over the shop. It didn’t seem that surprising to me as I’ve witnessed it on hospital equipment and my own medical equipment. I actually went into hospital due to the weird heart rhythm in May 2011. As it was a bank holiday and my condition wasn’t acute they decided to release me with a promise of a follow up to a cardiologist something that never happened.

Bank holidays are never a great time to be admitted into a UK hospital as their are fewer nursing staff and even fewer drs. The Dr that saw me admitted he had spent 30 minutes googling my condition before he came to see me. I really hate the fact this is a rare condition and most drs course of action is to just leave it alone or wait and see. That’s because both of these approaches do nothing to help me. Hence my reticence now of going to hospital when things get rough.

A worrying development on the palpitation front is the new style ones, which can only be described thus, I feel like there is a balloon expanding in my chest the feeling goes up into my throat and then makes me cough several times. I will be honest I’ve had these in the past too, mainly when stressed out. However these are also happening several times a day. Although they take seconds to end they leave me feeling dizzy, fatigued and with a horrible ache in my chest. I think I need to call my gp about this on Monday and let him freak out about these as well.

I just wondered if any of my readers had also come across these horrid little things as well? I would be most I interested to hear if any of you have. I will of course update you on any progress I make towards seeing a cardiologist.

 Presently my gp is waiting for me to have the drug trial in April before referring me to see the cardiologist, those in the UK will know that what he’s actually waiting for is the change in the financial year now that the budgets have been handed over to the gp’s.  A good gp he maybe but budgets are tight and its not currently considered an emergency. Things may change after Mondays phone call!