Dear 2015

This post was nearly ready to be published last week when we had the devastating news that Willow had a tumour in her breast, should the X-rays showed that it had spread, we would have to make the hard decision to let her go. Due to the intense emotional distress this caused both hubby and I, we decided together that I would skip a week of the blog until we knew what the future held, life with or without Willow.

 I am happy to report the tumour hadn’t spread and it was successfully removed. The tumour was a mixture of benign and malignant cells so from now on we will keep a close eye on her. So here it is the post I prepared before even knowing that 2015 was going to be a roller coaster.

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Dear 2015,

I know that you are just a few days old but I wanted to give you a heads up, 2014 was a bit shit health wise if I am honest and I would sincerely like it if you would give me an easier 12 months. Although with awful PoTs symptoms starting on New Years Eve, I think its clear what your evil intentions are.
2014 was going swimmingly until I had a glucose loading tilt table test to confirm the diagnosis of postprandial hypotension in February. However it also changed my diagnosis from PoTs to severe Autonomic Dysfunction making my diagnosis even harder to explain to the myriad of medical professionals I would encounter during the remainder of the year.
Following the TTT my health took a massive decline. Just five days after the tilt table test (TTT – for short) I was bed bound and hooked up to my oxygen concentrator 24 hours a day for a week. I was inducing stress levels in my husband that I didn’t think were possible to survive without provoking a heart attack. No one had any answers, all my gp could suggest was going back onto fludrocortisone (florinef for you in the USA) and increasing my fluids. My hospital consultant was on holiday, so my gp and I were winging it. As always my main aim is to stay out of hospital because dealing with idiots when I am unwell drives me nuts, even well-meaning idiots. When I say idiots I mean the ones that although well-meaning presume they are experts in my condition after 5 minutes on google.
Thankfully that time I avoided a hospital stay, the next admission in April 2014 was planned. This was for a trial of the drug Octreotide to see if I could tolerate it and if it prevented my postprandial episodes as I refer to them as. The drug worked but the whole trial was farcical, with me being discharged after only injecting the drug once myself and arguing continually with the nursing staff who kept trying to give me the drug hours before meal times which as I later found out due to my own mistakes would have produced horrendous hypoglycemic attacks. I was also discharged with very little information and with my gp having no way of ordering the syringes or needles I needed to inject the drug because they weren’t available on the pharmacy list which gp’s can order from. This took several months to rectify, oh and I have failed to mention that I had no information regarding the disposal of the sharps bin either. As I said farcical.
May and June 2014 saw repeated bouts of cellulitis and I was very lucky not to need I.V antibiotics to sort it out. I had blood tests and antibiotics coming out of my ears but no cause for these repeated infections was ever found. I am just lucky I guess. I had no appreciation before hand how ill cellulitis can make you feel. The first bout started with what we presume was a spider bite on my knee, the second bout started after I had a manicure and the third and fourth bouts happened after I was bitten repeatedly by mosquito’s. I was very poorly but as always I chose to ignore it as I have found burying my head in the sand always works well. Spot the lie.
The end of June was equally dramatic with Acute Urinary Retention occurring on the 20th June resulting in me being admitted to hospital on the 21st June with a blocked catheter. If I thought I had lost my dignity when having a smear test (PAP test in the USA) in the past I was in for a rude awakening when having catheters fitted and subsequently removed. By the time a catheter becomes necessary you no longer care what it will take to relieve the agony of an overly full bladder. I have very little recollection of these events and I kind of understand women who say they forget the indignity and pain of childbirth. I think I have blocked the memories from my mind. Only to be remembered when I read the blog posts these incidents are contained within.
So six months in and 2014 had been one of the most eventful years of my professional sick persons career. So 2015 I would be grateful if you could keep the drama to a minimum. I don’t mind drama as in I have a winning lottery ticket or a National Newspaper wants me to write a regular column for them, that’s fine. I just don’t want the health drama for me or any of my loved ones. There is too much drama in the world already without adding a whole new level of shitty health problems.
The following six months weren’t remotely better, they just presented different challenges. From March onwards the back pain I had been suffering with since 1999 decided to ramp up a gear. I found out in September I have arthritis in my spine and a flattening of one of my discs. My palpitations, feeling faint etc have been worse for the last six months which has meant me staying on the dose of 3 fludrocortisone tablets a day. The steroids help but the bring other issues such as sleep problems and constant hunger. My weight has gone up and down like a yo-yo in the last 12 months. An outsider may think “weight should be the least of your problems” and I agree it should but I am so unhappy when I can’t fit into my clothes. I can cope with my health being awful as long as I don’t put on lots of weight. My weight seems to be the final straw. With my back pain being as bad as it was I spent much of the summer in bed in vast amounts of pain. With further reduced mobility I ended up putting on weight.
One good part of 2014 was finding out the answer to why my back was painful and discovering that gentle Pilate’s could strengthen more core muscles enough to alleviate that pain. I found joy in completing the exercises and used my Pilate’s time as me time. I could relax and found myself feeling calmer…..until my knees really started to hurt. I think the strengthened core muscles changed my gait which then altered the pressure on my knees or maybe the pain in my back was masking the pain in my knees. It doesn’t matter because in December 2014 I could add early onset arthritis in my right knee and  possibly all of my fingers.
December 2014 was eventful due to another bout of Acute Urinary Retention and a urinary tract infection to boot. So again 2015 I beg of you don’t meddle on the health front please. The last 12 months was hard to deal with and I am no longer bouncing back like I used to. My husband really can not continually cope with this level of stress. As a result of my declining health he has now put on several stone in weight as he is a stress eater. I want him with me for a long time, so please lay off me for a while so that he feels he has some kind of control in his life.
Last year I made a huge list of New Years Resolutions, it was the first time I had done so for many years. Looking back at the list I realise I didn’t accomplish any of them due to the health issues. That was a bitter pill to swallow.
One of my resolutions wasn’t affected by my health, I wanted to get back into creative writing…..I didn’t, I got back into blogging after an 18 month break. It has been one of the most rewarding things I have done. I have made a very special friend who I would never have met without my blog. I was nominated for a Wego Health Activist Blog award and I more than doubled my readership in the space of ten months. Something I am extremely proud of.
So if I maybe so bold 2015, I have provided you with my personal wish list for the next 12 months. I know you can’t cure my numerous medical conditions but you can be kind.
– I feel its time you gave me a break on the health front, just keep me ticking along with the conditions / symptoms I am used to. Don’t go throwing me any curve balls because I really don’t think I have the energy to cope with them.
– Please limit my exposure to idiots in the medical field. I have been worn down by the constant exposure to them last year. Let someone else have them for a change or just educate them a bit better before you release them on the general public. I can’t be the one to educate them all the time.
– Before one of my well-meaning acquaintances sends me the link to a blog where someone cured their PoTs through adopting a sugar-free, Vegan diet may you give them a change of heart or make their Internet connection go down until they decide I have probably already seen it several times.
– If they do send it let me receive it far more graciously than I did in 2014 but then again maybe not a little sarcasm never hurt anyone.
– If I do go into Acute Urinary Retention again can you make it on a day when I have shaved my legs and waxed my bikini line? It just makes me feel better to know that these are done if someone is going to be rummaging around in my lady parts.
– Please don’t let it be this year that my smear is due for the reasons above plus it is painful due to my retrograde cervix and dislocating my right hip when I adopted the “position” last time.
– If any insects or arachnids bite me this summer please let me avoid cellulitis and high dose antibiotics. By attack number 4 it got quite boring and the medication made me feel really nauseous.
– Please get my gp to admit fully that I have arthritis in my fingers. Seemingly them swelling up, being stiff and painful just isn’t enough proof when I already have arthritis in my spine and knee. Please stop him holding onto the belief that its my stretchy ligaments causing the problem and admit it is EDS causing early onset arthritis.
There are lots of things I could ask of you 2015 but I really don’t want to appear greedy. If you could just make it a smoother ride this year for me and my loved ones it would be greatly appreciated. I know there will always be bumps in the road so let me face them as I faced the ones in 2014, with humour and wit.

 

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Emergency Admission / Weekend from hell part two

*WARNING*

 

As with part one of this post I am going to warn you now, it will contain graphic content, if your eating stop reading now, if you have easily offended sensibilities this post is not for you. The language contained in the post will be a little fruity, think drunken sailor on crack! I apologise in advance but this is going to be a “real life” post and there will be no fluffy bunnies or unicorns featured within it. This is what its like to be chronically ill.


If you want to know what an absolute bitch of disorder EDS can be and you aren’t afraid of the mention of lady parts continue. 

 

 

 

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After the doctor had finally cannulated me and got the blood she needed she got the nurse to draw up three different drugs. The first was Zofran (generic name Ondansetron) an anti sickness medication, the second was oramorph and the third was buscopan. As soon as the nurse started to inject the Zofran my arm was on fire. I have had IV meds that had stung / burned before but she had given no warning this would do so. As she then put the buscopan in the burning got even worse and I started to scratch at my arm. As she got halfway through administering the morphine I told her to stop. She told me “morphine can make you itchy” I told her “I take morphine regularly but it doesn’t make my arm itch, it makes my legs and abdomen itch”. She then said she would flush the cannula to see if that helped at all, it made it worse and I begged her to stop. As I looked at my arm every vein had turned bright red and the underside of my arm from the wrist to above the elbow looked like it had been scalded by boiling water.


The nurse promptly checked my blood pressure which was fine (actually a little high for me at 114/80 but I was in pain) and then left the room for 20 minutes. Now as I always say I am not a medical expert but if someone is having a violent reaction to a medication and has nearly been in anaphylaxis before, would the “safe” thing to do be to leave them in a room with the door shut and unable to call for help if the reaction got worse? My answer would be no but apparently thats a perfectly safe thing to do at my local hospital.


I kept setting off alarms on the monitoring equipment, when I am very tired or in pain I stop taking breaths. Its not deliberate but its like my body forgets to breathe. My oxygen saturation did not drop below 100% (which as a smoker and sometimes heavy smoker I was pleased about) but I was now going for over a minute without taking a breath, the alarm sounds at under 8 breaths a minute. This isn’t the first time I have set monitoring equipment off in this department and every time it provokes no response from the medical staff. Thats a little disconcerting when you are in the middle of an allergic reaction!


Eventually the nurse came back into the room with a porter and I was informed I was being moved up to a ward. The nurse that had been “treating” me, seemed to have a compulsion to pull on the catheter tubing at every available opportunity, despite me telling her that this really hurt.


I have no pain at all when a catheter is fitted (which is odd as on some websites the pain associated with this is on a level with a lumbar puncture). My pain starts as soon as the balloon which keeps the catheter in place is inflated. After that for about 12 hours I can’t sit down without pain and any slight tug or knock of the tube is excruciating. Despite telling the nurse this it seemed to be her mission to mess about with the tubing at every opportunity. So yet again I was in agony due to someone else either a) disbelieving what I was telling them or b) she just didn’t care.


I thought I would be heading for EMU (emergency Medical Unit) which is an awful ward to be on. The nurses are terrible on this ward, having been on it on several occasions, I can tell you a crash course in empathy, compassion and the basics of nursing is needed. Instead I was going onto a “proper” ward with proper nurses you know the caring kind that Florence herself would be proud of.


I was seen by the nurse on this ward within minutes of being admitted. I am really sorry but I can’t remember her name. She was a bubbly blonde woman with a lovely brummie accent. She did everything properly, I was asked about my mobility, how they could help me (with toileting, washing and dressing), who my next of kin was, religion, diet and how my bowels worked etc. This is how it is supposed to be done, by someone who asks probing questions and assumes nothing. This nurse and the other nurses and healthcare assistants on this ward are a credit to the hospital and if I am honest had I not had that kind of nursing care I would have discharged myself.


I probably sound like a stickler for rules and possibly a person with aspergers tendencies. I am not that person, I do however get infuriated by laziness and assumptions. Laziness and assumptions don’t provide good medical care. As a medical professional you need to listen and understand your patient. If they don’t do that I start to lose faith in their abilities. A patient is a person, not a condition or a plaything for you to practice your skills on. Treat me with courtesy, respect and that I am not an idiot and it will go a long way. Treat me as if I am below average intelligence and without respect and you will have a hostile patient on your hands. Its a shame more medical professionals don’t apply that approach, yes they have medical knowledge but learning about a disease or condition does not make you the expert. Living with it 24/7 does.


At around 1am I saw a student doctor. Now normally I enjoy interacting with student doctors, they are young, enthusiastic and eager to absorb any information they can about a condition they haven’t come across before. This one seemed to have a language processing deficit, not ideal. Again despite telling her the catheter had only been fitted the day before, the conversation seemed to be a little like the film groundhog day. I dont know why it was impossible to believe that it had been fitted on Friday, it was now the early hours of Sunday. But she was insistent the catheter had been in for a week. I wish that I had brought in the paperwork from the district nurse when I set off to hospital as clearly as a patient I was unable to distinguish 24 hours from a week. Maybe she had the assumption that as I used a wheelchair my disability was mental rather than physical?


As a good patient and a professional sick person I had brought all my medication with me. Yet despite all this the student doctor added medications that I don’t take to my drug chart and got the dosages incorrect. Despite having all the pharmacy labels on them. How that is possible? I am at a loss to understand.


She was very through in her exam, my abdomen was palpated and my chest was listened to. She then did a basic neurological exam, checking the power in my legs and my reflexes. It startled her that my left leg was cold whilst my right leg was hot. Again having repeatedly told them that my autonomic nervous system is screwed, I couldn’t understand why this would be so “amazing”. 

 

I am interested in medicine I always have been. Plus without this basic understanding I would never have discovered what was wrong with me. However she nearly died of shock when I told her that I knew she was checking for cauda-equina-syndrome. I knew that this check would culminate with a finger being inserted into my rectum. Having had numerous operations on my bowels no hospital visit would be complete without this examination!


She disappeared outside the curtain and then returned with a nurse. I asked “are you selling tickets?” the nurse laughed but the joke seemed lost on the doctor. As I assumed the finger up your bottom position, the nurse tried to explain what was happening, I interrupted explaining this wasn’t the first time I had been subjected to this examination. The weirdest thing about it was you have to grab the inserted finger with the muscles of your anus. It takes a little bit of thinking about as its not something one does on a regular basis. I passed with flying colours, although I am a little unsure if thats something to boast about?

 

Doctors that treat me are always obsessed about constipation due to the opiates I take. I rarely suffer from constipation I can open my bowels up to four times a day, despite all the morphine I take. I am coming to the conclusion that this annoys them as I should be on a diet of laxatives like most people would be when they take opiates. The only thing that does make me constipated is codeine.

 

 As she whipped her finger out of my rectum she said ” Your rectum is completely empty, you’re not constipated”. Now having informed the doctor of the fact I don’t suffer with constipation, this wasn’t a surprise to me. My bowels are so regular you could set your watch by them. Sometimes like on early Saturday morning when my bowel had switched off on the Friday as my bladder had done, it went into freak operating mode and I was stuck on the toilet for 90 minutes. Again the doctor wouldn’t believe me that I didn’t have diarrhea, it was normal stuff. I wanted to place a bet with her that at 8am I would have a normal poo but as she hadn’t listened to anything I had said previously it would have been a wasted effort. And yes bang on 8am I had a poo (in case you were wondering!).

 

As this student doctor was on a surgical rotation I expected her to have a little knowledge about surgery – silly me. She had clearly read my notes as when she saw the scar on my stomach she asked if that was from the intussusception at age 3. I told her no, that was a scar from having adhesions removed in 1998 and subsequent exploratory operations, the last one being in 2002. She then spent a couple of minutes looking at my abdomen. She said to me “I can’t see any scars form laparoscopic surgery”. 

 

Despite it being gone 1am, I knew I was dealing with an idiot (or if I wasnt writing a blog a FW – you work out that abbreviation!). Surgery increases your risk of adhesions by about 50%, I had already told her I had adhesions removed in 1998 – so thats 2 surgeries. Once you have bad adhesions, as I do, laparoscopic surgery isn’t possible. A student on a surgical rotation should know this, its a basic piece of knowledge. Plus if she had felt my scar and  around belly button you can actually feel the thickening of the tissue and the bottom of my scar is tethered meaning it goes through the skin and has stuck to the abdominal wall. Maybe it was her first day but I wasn’t the one pretending to be the expert. Which is what annoys me about some doctors, they poo poo (pardon the pun!)  what you tell them as they can’t stand it when the gaping holes in their knowledge are exposed.

 


As we were going through my medications the doctor asked me if I was allergic to IV morphine. I nearly choked, I asked her why she had said that, apparently the nurse from A & E had written in my notes I was allergic to it. I angrily pointed out that as I had been taking morphine for two years ( shoved the packet under her nose) and buscopan all day (that packed was waved at her also) didn’t she find it more likely that the reaction I had suffered would have come from an IV medication that I had never had before? To me that seems logical but apparently not for this doctor. I asked her to write the name of the anti sickness medication down to ensure that I am never given it again, which she did.


The ward was noisy and sleep was elusive. I came to the conclusion that I would have had more sleep had I curled up on the floor of Paddington station. Patients  were in and out all night. Doctors were taking medical histories at 3 in the morning. It was a hive of activity but a place of sleep it was not.


Overnight I had drained 1800ml into the catheter bag, another impressive feat. I had less pain, no spasms and was in general feeling a lot better. When I am feeling better I want to go home and not linger. 


As no one had secured my medications in the bedside locker, I self medicated my morning tablets. I had already missed my evening ones and due to that my back was throwing its usual hissy fit when it comes into contact with a hospital mattress. Yes you heard right on this ward controlled drugs were not confiscated on admission. On this ward the nurses gave me the “self medicating” disclaimer form to sign and then put my medications into a locker. They checked through my drug chart to ensure that I had taken everything and thats when we discovered the student doctor had entered medications on my chart that I didn’t take. I explained to the nurse the error, it didn’t seem to come as a surprise to her, which was worrying. She asked me what doctor I had seen “was it the one with the red hair?” Obviously her reputation precedes her.


Breakfast was served just after 8am and as it was the first thing I had eaten in close to 24 hours I then promptly fell asleep due to a post prandial hypotension episode. I was woken up by the sound of voices, my case was being discussed whilst I slept. As a patient it was quite clear my actual presence wasn’t necessary. 


On seeing that I had come to the Surgeon in charge introduced himself. Then the idiot student doctor continued her patient presentation. I watched her and as she said “This patient has been diagnosed with Ehlers Danlos syndrome hypermobility type, the patient states she also has autonomic nervous system dysfunction” she paused and rolled her eyes. 


As she was stood to the side of me, I think she thought I couldn’t see what she had just done. I don’t state I have ANS dysfunction my medical records do and the medical tests I have endured prove it. If they don’t believe the diagnosis how on earth can they look after me? This was like a red rag to a bull and I hoisted myself up so that I was no longer lying flat on my back.


The surgeon then said ” right we are white carding you to urology, who you will see tomorrow and then we will go from there”. I then responded with “I am sorry, I am sure you’re a lovely person but I am not staying. I dont play the hospital game of lying around waiting for a department to fit me in. My plan is you take the catheter out, I prove I can urinate and then I go home.”


There was a collective gasp from the junior doctors who had accompanied the surgeon to my bedside. He responded with ” You can’t go home, you are in urinary retention”


Me: ” No you don’t seem to understand me, the catheter is coming out and I am going home”


S: ” You are being stupid, you’ve had two bouts of urinary retention in 48 hours”


To which after being called stupid I said 


” The catheter caused the last bout of urinary retention by causing my bladder to go into spasm. I want it out and I am going home” 


By this point I was incredibly angry at being called stupid, I don’t think a doctor has ever called me stupid before, well not to my face, possibly hidden away in my notes somewhere. Had he actually asked my opinion and explained his position instead of presenting it as a fait accompli I would have listened. But he was an idiot and continued


S :”You’re being stupid, I will let you go home but you have to keep the catheter in”


Me :” No I am going home, you are taking the catheter out and then you are referring me as an outpatient to urology. I don’t do hospitals and I don’t feel safe here” 


S: “You’re being stupid, you won’t be able to urinate once the catheter is removed”


Me: “If the catheter is removed and I can’t urinate, I will stay. If not I am going home.”


At this point the surgeon, who I believe had never had his authority questioned before gave up.


“Get the catheter out and she can go home” He then flounced off taking his minions with him.


I will state for the record here I am not a doctor and I am not suggesting I know better than the doctors caring for me. If you are in acute urinary retention you need medical help and you need it quickly. I take responsibility for my own actions. I strongly urge you to follow your own doctors advice.

 

 

However lets look at the facts 

 

– my bladder was no longer in spasm


– the catheter had drained 1800 mls overnight and was continuing to drain, therefore I was no longer in urinary retention.


– the second bout of urinary retention had been caused by the catheter either a) being blocked or b) the valve at the base of my bladder clamping down on the catheter.


– The student doctor had written my drugs chart incorrectly


-The medical staff had no basic understanding of EDS and the fact my bladder can stretch well beyond the size of most individuals making it floppy when emptied and likely to block the catheter again, leading to more painful spasms which I wanted to avoid.


– I had suffered an allergic reaction to IV Zofran and it had been ignored.


– They wouldn’t believe me when I told them the catheter had only been in since Friday.


– I had been left in excruciating pain for over an hour in A & E. When it was actually a quick fix.


– And the one that sealed the deal, they didn’t believe that my ANS is screwed


Ask yourself if you would feel safe in that environment? Would you want to stay?


I know I am not a medical professional but I knew that there was nothing to be gained from staying in hospital other than back pain.


Within minutes of the doctor leaving my bedside the nurses had removed my cannula and my catheter. As the nurse was removing my catheter she whispered ” I don’t think anyone has ever stood up to him before, well done. You manage your illness brilliantly and we know that you can go home safely. Just promise me if you can’t urinate, you won’t go home”


I solemnly promised her that I would let her know if I couldn’t wee and wouldnt leave the hospital if that was the case. I also promised that If I had any issues at all that I would return. I told her I wasn’t stupid but I wasn’t staying either.


A weaker more vulnerable patient may have been intimidated by the surgeon and his groupies. Unfortunately the older I get the less impressed I am. Having dealt with surgeons before I know that unless they can cut it out and play operation, they rapidly lose interest and then you are palmed off to another ward. Or left without a treatment plan for days on end. I wont play the hospital game anymore. I maybe coming across as  rude or arrogant but I know my body, my body doesn’t follow the rules laid out in medical textbooks and until I meet doctors who actually believe in my illness and have taken the time to educate themselves, I don’t trust them, its as simple as that. To me it would be like treating a diabetic having no knowledge about the disease / condition process. The outcome wouldn’t be good, well my condition is the same.


I did not feel that my condition warranted a hospital stay, most of which would have been massively unproductive as I have since found out my local hospital has no urology cover every other weekend. The earliest I would have been seen was sometime on Monday. At home I can manage my condition and I have a treatment plan as I consulted my gp first thing on Monday morning. Who agreed with my decision to leave – in case you are wondering.

 

I escaped from hospital with the aide of the nurses by 1020am. I didn’t wait for my discharge papers as one of the nurses had warned me they would mess me about producing them. They would either be emailed or sent to my gp. Having been in this situation before I knew it could be 2pm before I received them due to the doctors doing their rounds and writing up any orders for the nurses for all the patients they had seen. 

 

I got a hug and a kiss from the nurse who had been looking after me. I know I wasn’t there to win a popularity contest but I think it speaks volumes when a nurse treats you like this.

 

I have emailed a complaint to my local hospital and they now have 45 days to cover it up,  investigate it.

 

I am home and now living in fear of it happening again. Every time I struggle to urinate or get the burning pain at the top of my pubic bone I wonder if its starting again. Its not a fun way to live.

 

I have included two links below which I have found incredibly useful and they explain a bit about acute urinary retention and the catheterisation process. As acute urinary retention doesn’t happen that often in females (other than post operatively or due to infection) it was difficult to find information relative to me.

 

Thanks for reading.


How a catheter should be inserted, protecting the patients modesty during a deeply invasive procedure

 

The journal article I used on Saturday afternoon so I knew how to treat the initial bladder pain



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!

 

 

My hospital stay – part one

I have to bite the bullet and write this post. I have successfully put off writing it since my hospital stay in April 2014 but its time. 


I’ve been reluctant to write it as there is so much NHS bashing in the media and I don’t want to bash an institution that has brought me into the world and saved my life but like any large institution there are things that could be improved and my hospital stay was far from plain sailing. 


So if any of my readers are part of the NHS this isn’t an attack on you but please take a look at the points I am raising and look at the departments you work in. Are there things you could be doing better? Are there things that are happening that are wasting precious resources? Try and look at it as if you were a patient because if you forget that the patients are at the heart of the NHS that’s where things will go wrong.


My Consultant, a very hard working, caring, diligent man, a little caustic and with a dry sense of humour that can be hard to “get” unless you’re me and find him hysterical, is in essence a specialist in Geriatric Medicine / General Medicine. Which means whenever I speak to someone who has not come in contact with me before it leads to some confusion when I give my date of birth. I am one of his youngest patients. I came to him through being referred to the completely wrong clinic, initially he suspected that I had somatoform disorder – after all that’s what my notes said from all the other doctors that had ever seen me since 2007. He either took a chance on me when he agreed to a tilt table test or just did it to shut me up. Either way I am grateful that he listened to me when I produced my list of blood pressure and pulse readings at our first meeting.


Lets call him Dr B, I have given out so many pseudonyms in the past, I apologise if I’ve used this one before. Dr B is in charge of the ward I stayed on and its a locked ward due to the majority of his patients having dementia. Its not locked in the sense you can only escape by stealing the keys but unlike other wards in the hospital the doors close automatically and you have to hit a discreet button to get the doors to open. I have no problem with this, after all if your loved one is suffering from any form of dementia the last thing you want is to find they have absconded from the ward and are wandering the corridors. 


I’ve never been on a locked ward before so that was a little weird, plus it was a nightmare to navigate the doors for my husband who was pushing my wheelchair. There was a very small window of opportunity once the button was pushed to get me safely through without being crushed by the door.


On arrival we were informed that my bed wasn’t currently available and that we should go to the restaurant and wait for 30 Min’s. Again I don’t have an issue with this. A patients discharge can be held up for a variety of reasons and on the majority occasions its not the wards fault. When we came back we found the bed still wasn’t ready and we then had to wait in the staff room for over an hour.


 90 minutes or more later, my bed was ready and I was shown to my room. I had a small private room with a wash hand basin but no toilet facilities. This wasn’t ideal as it meant I would have to struggle to the toilet myself or call for a member of staff to help. The amount I drink due to excessive thirst meant if I called them continually for help I knew I would rapidly become their least favourite person.


As I have written in a previous post “Permission denied” I was swabbed for MRSA / C Diff – intimately. I had to provide a urine sample as because I am a woman I have no control over my reproductive system so I maybe pregnant. I know that people can be pregnant and not know about it but with zero maternal instinct contraception has always been high on my list of priorities. I understand they are covering their arses but it irritates me. I feel its like, you have a womb so therefore you have a reduced mental capacity. Do men have to provide a urine sample every time they rock up to A&E or when admitted to hospital?


 A short while later Dr B popped his head around the door and within the space of 5 minutes had dropped the bombshell that I would be in hospital for a week. My husband and I had planned for two days – the two days that we had been told in the previous November. I was furious as I had emailed Dr B and Dr B’s secretary in the weeks leading up to this admission asking about the length of stay and asking other questions. I never received a reply. I managed to bargain the stay down to three days. My husband had taken a weeks holiday the week before as that was when I was supposed to have been admitted. Because that was cancelled he had to take emergency holiday from work to be able to take me to hospital now. I explained that my husbands work were accommodating but this was unacceptable, that life existed outside the hospital, a life where there is a mortgage to pay, an economic downturn and employers making staff redundant. 


I understand that Dr B is a busy man, his clinic is expanding all the time. However this could have all been avoided if someone had just taken the time to communicate what would be happening during my hospital stay and the length that it would be. What if I had children and needed to sort out childcare etc, I had to sort out people to sit with my dogs as they can’t be left. So it threw all of our plans out and meant my husband had to contact his employer and tell them he may not be in work for one of the busiest weeks of the year (after Christmas).


I then had a nice friendly doctor come in and take a medical history ( again another colossal waste of time when you are resting on my vast pile of notes whilst taking it). This took over an hour and a half and I should imagine this doctor thought her visit to me was going to be a quick in and out. I had to spend the majority of the time explaining my conditions – now I could understand this if my admission had been an emergency but this was a planned admission, perhaps a perusal of my notes and a quick session on Google would have been quicker? It was also clear that she had no clue about EDS or Severe Autonomic Dysfunction, nice interpersonal skills but that won’t save my life in an emergency. I hate saying that on first impressions she was a really was a lovely person but like everyone else on the ward she was clueless about my condition.

 

Also after I left hospital I found that she had been a little creative on my discharge notes. As part of the history taking process she was supposed to examine me. This never happened however my discharge notes did not admit this omission. It was covered up with “on examination her abdomen was found to be soft and her lungs clear”. My lungs or abdomen had never been checked as she had never come back to check them. This is bad doctoring and is inexcusable if it is compounded by essentially lying on my hospital notes. So the “nice” doctor had lied another reason why I find it so hard to trust the medical profession.


As usual I asked if I could self medicate – I hate having to wait for my tablets when I am in pain. This isn’t a pop at the nurses, in the ward there clearly weren’t enough nurses or health care assistants and they were rushed off their feet. If I self medicate it means you don’t have to answer my bell and it saves you a job and it means I get my medications on time. I manage them perfectly well at home, I am not an idiot patient.


As usual because I take opiates – morphine slow release and oramorph, these have to be stored separately in the wards controlled drugs cupboard. Again I understand its for safety and its the rules but its highly irritating when you are allowed to administer these at home unsupervised. It also meant throughout my stay that my pain wasn’t well controlled as my slow release morphine tablets were given to me 2 hours late on the first day and then an hour late the next and I had to continually battle with the nurses administering my oramorph to give me the correct dose.


I am allowed to take 5ml / 10mg of liquid morphine every four hours at home should I need to. I never have because at home I stay on top of my pain. I can go days without taking oramorph as long as I stay on top of my pain. Its my last resort medication, when every other pain relief option has been exhausted. When I take it I take the prescribed 5ml / 10mg dose. It was written in my notes that this was the dose I should receive yet for some reason every nurse that I administered the oramorph when I asked for it decided to half the dose. When I asked why they wouldn’t give me the full dose I was told “you can wait an hour and see if you need the other half”. Like every patient, I know my body, I know that a half dose won’t cut the mustard, especially if my other pain medications haven’t been given to me on time.


In a lot of pain at 8pm the first evening I ended up losing my temper with the nurse on duty. It wasn’t her fault she had only just started her shift, she sat with me and explained that nurses always try and administer the lowest dose of oramorph first. I understand that’s their approach but nowhere in my notes did it say reduce my medication by half, they didn’t give me half my contraceptive pill, or one paracetamol instead of two, or one slow release morphine tablet instead of two so why ration the oramorph – it was being administered from the bottle I brought in so it wasn’t costing them anything! 


Being in pain when there is no reason to be is a horrible situation to be in. I spent my entire hospital stay chasing the pain trying to get on top of it. For the 24 hours in their care the pain was horrendous and it took me 48 hours once I was home to get back on top of it. It was a situation that didn’t need to happen and clearly none of those administering my medications appreciated the level of pain I was in.

 

My pain is triggered by hospital beds, I either get a memory foam “style” mattress which means my joints have pressure applied on them that they don’t usually have or a mattress that is too soft. I know many people with EDS find memory foam mattresses a real help, I like to be different. I have a memory foam topper but underneath my mattress is hard because my body finds it so hard to support itself when I am asleep.


I clearly wasn’t her favourite patient ( she was also the nurse that I told I wouldn’t be having a bedsore check) which was made abundantly clear when she told me the lady that had been in the bed before me had the same illness as me but was much worse and had been sick 10 years. I felt like telling her “Its not a bloody competition” I kept my mouth shut as I was still waiting for my slow release morphine!

 

I think the situation was difficult for both nurses and I because they were used to compliant elderly patients who didn’t speak up for themselves. This was more than evident when I had to complain about the mess the shared toilet was in when I went to use it. The patient two rooms up from me was having explosive diarrhoea and wasn’t always making it to the toilet bowl. Despite me informing the nurses of the toilet situation and the fact I was desperate for a wee, 20 minutes later the toilet was still a no go area. I couldn’t wait any longer and I knew I would be waiting longer still if I asked for a commode. I tiptoed through the path of destruction found some toilet cleaning wipes and cleared up the other persons mess so that I could use the toilet. I shouldn’t have had to do this and it made me angry. The staff were well aware of my limited mobility and the fact I couldn’t go clean toilet hunting.

 

I chatted to the matron of the ward the following day after leaving less than positive feedback on the card the ward administrator had given me. I was told that the nurse looking after me had point blank refused to clean the toilet feeling it wasn’t in her job role. By the time the matron inspected the toilet she couldn’t see an issue, I set her straight and told her there was no issue because I had cleaned it up. Something as a patient I shouldn’t have had to do.

 

Having been a manager of people, which essentially this matron was I found it startling that her request for my nurse to clean up the mess was ignored. Perhaps this is where the problem lay in the ward that those working for the matron ignored her and essentially there was no management actually taking place in the working environment. I want to say again the matron struck me as a lovely hardworking person but her time was being used doing the jobs those working for her were refusing carry out. In a previous life when I worked staff (including managers) could be disciplined for failing to carry out a reasonable request, I would suggest that clearing up bodily fluids is reasonable set in the context of nursing and if you don’t like it perhaps nursing isn’t for you?

 

I realise I haven’t touched upon the point of my admission, the octreotide trial and that’s because that was beset with disasters also. I am saving that for part two.



Octreotide Trial one week on.

Sorting my syringes for the day.

I’m one week into my octreotide trial and things have not  been going swimmingly. Over the course of the last week I have been developing some nasty side effects of the gastrointestinal kind. Last night I was awoken at 230am and over the course of the next 6 hours I barely left the bathroom.

Over the last week I have been managing to inject myself 2-3 times a day. I was struggling with it initially, not because of having to inject myself but the issue with eating regularly. I learnt years ago to avoid post prandial hypotension to avoid where at all possible eating lunch. At school I would struggle to stay awake after lunch. At university I would regularly fall asleep in the lecture theatre and snore, loudly. This issue followed me into my workplace and to avoid falling asleep in front of a room full of new employees, avoiding lunch was the only thing I could do.

My post prandial hypotension could almost be described as a kind of narcolepsy, I can’t keep myself awake. I have no choice in the matter but to go to sleep. Fighting it makes me feel extremely ill. My eyes roll to the back of my head, my speech becomes slurred and I can not put off the inevitable, I go to sleep. My blood pressure drops so low I awaken confused, not knowing where I am. Nine times out of ten I will initially believe I am back at my parents house, a place I haven’t lived in since 1996. My confusion can last a few minutes to an hour and it is terrifying. Out of all the horrid symptoms I endure this is the worst. It will reduce to me to tears on a regular basis.

As you can imagine, after last night, I was deflated ( pardon the pun) , exhausted and in pain. However due to the amazing results I had experienced I wasn’t ready to throw the towel in just yet. I was wobbling psychologically and feeling a bit sorry for myself but I was determined to carry on.

After what can only be described as a hideous night, out of the blue my consultant rang me to find out how I was doing and to make arrangements for the tilt table test I was due to have on Tuesday 22nd April. On hearing of the disastrous night I had endured, he decided a tilt table test wasn’t going to be a good idea. I have been advised to halt the injections today (Monday 21st April) and resume tomorrow starting off again with one injection a day. I am to continue with one injection a day until I ring his secretary on Friday and let her know how I am doing and a decision will be made from there.

Some of my cyber friends are on this medication for PoTS alone and have been advised not to take it at meal times as there is an increased risk of side effects – wind (gas) , bloating, diarrhea, constipation and nausea. With post prandial hypotension the whole point is I take it with meals. However I am suffering with all but one of the side effects – constipation. How last night I wished that I was suffering with constipation!

I will see how the week goes and maybe if there is no joy I will use the drug to treat my PoTS rather than post prandial hypotension. As the drug works so well I am happy to currently persevere as long as I don’t have a repeat of last night.

It maybe that I can only tolerate one injection a day without incurring the wrath of the octreotide god. If thats the case my post prandial hypotension is always at its worst at lunch time for some reason. If I could obliterate that symptoms with little or no side effects that would be an enormous leap forward.

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!

Ocetreotide Trial

On Tuesday 8th April 2014, I am being admitted into the local hospital for a trial of the drug Octreotide. To say I am a little nervous would be an enormous understatement. Anyone who has read this blog for a few years will know that the local hospital and I don’t have a great track record.

From around 2009 – 2011 I had been diagnosed without my knowledge with somatoform / conversion disorder. My tilt table test on 21st January 2011 was going to be my last ever test on the NHS, if it had come back negative I would have been referred to the Mental Health services.

I can’t say 100% if  somatoform / conversion disorder is what I had been diagnosed with. I’ve seen reference to it in one letter – a copy of which was sent to me. I’m guessing that my Dr had found it when he looked through my notes prior to us meeting in 2011. Having brought it up with my GP, it was never expressly acknowledged but it wasn’t denied either. My GP is the sort of doctor that if you said something that was inaccurate he would put you straight, especially when challenging something another doctor had said. So I know some reference was made to my health problems all being in my mind.
http://en.wikipedia.org/wiki/Conversion_disorder  this link explains it better than I ever could.

My care at the hands of the medical professionals that I came into contact with between 2009-2011 changed dramatically. Before I had been treated as any patient would expect to be treated, professionally, courteously and with an interest in how I was doing. After 2009 things changed dramatically, all the staff I came into contact with were cold and would barely speak to me. They gave me the least amount of help they could get away with, even going so far as refusing to treat me when I had low vitamin B12 and the haematologist informed them I needed treatment as I was symptomatic. For sufferers of conversion disorder etc medical professionals believe they have to stop providing “care” as it fuels our need for medical attention. My care since 2011 and getting both my POTS and EDS diagnosis has been back to normal, caring professional and courteous.

I’ve seen my hospital notes from this time and its not a nice read. There are medical observations written in them but there are also personal attacks on my character and on my family which serve no medical purpose at all. I was devastated when I read them and these were the version which they believed wouldn’t damage my mental health.

http://www.nhs.uk/chq/Pages/1309.aspx?CategoryID=68&SubCategoryID=160

In the UK your doctor decides what you can and cant see in your medical notes. The neurologist I had been under since 2007 declined to allow me to see anything he had written about me in the 3 years I was in his care. It makes you wonder what he was hiding and why?

So hospitals now fill me with a great deal of fear. Even when I see my consultant who treats my autonomic dysfunction, I can never completely trust him. I’ve already had a couple of doctors be nice to my face and then write absolute rubbish about me in my notes. When you’ve seen this first hand its very hard to trust people in the medical profession as you are just waiting for it to happen again because previously 99 times out of 100 it happened.

I spend every hospital visit waiting to be told that the doctors have changed their minds, I don’t have autonomic dysfunction and that all the care I have been provided with since 2011 will evaporate. I suffer with terrible anxiety before any trips to my outpatient appointments, it causes sleepless nights and for me to shut down and become uncommunicative, such is the psychological damage the previous doctors have wreaked upon me.

As you can imagine the prospect of two days as an inpatient is causing the old anxieties to surface. If its bad now ( the time of writing this post is Wednesday 2nd April 2014) what the hell am I going to be like by Tuesday (8/04/2014)?

When the hospital letter arrived confirming the dates for my admission the first thing I checked was which ward of the hospital was I being placed on. If it had been the ward I had previously seen so much of, I would have cancelled there and then. There is no way on earth I will ever go back to that ward. Thankfully I am being admitted to a ward I have never heard of. There is a remote possibility that I will come into contact with my previous medical team, I can live with that and that’s what MP3 players are made for!

I don’t know what the drug trial will involve so I can’t really tell you much about it. The drug I will be trying is called Ocetreotide
http://en.wikipedia.org/wiki/Octreotide  and it is injected subcutaneously ( under the skin). I am imagining there will be at least one tilt table test to check if the drug has worked or not ( another thing I’m not looking forward to as my health has been in the toilet since the last one).  I have bought some lucozade to take with me as at the last tilt table test http://en.wikipedia.org/wiki/Tilt_table_test my consultant forgot to bring some. Luckily we had brought some with us knowing how busy my consultant can be! So I will also be coming prepared this time. They like doing the tests with lucozade as this gives the most dramatic results in people with post prandial hypotension.    http://heartdisease.about.com/od/syncopefainting/a/Postprandial-Hypotension.htm

The first day of the trial is to see if I can tolerate Ocetreotide, if I cant the trial will be aborted. The second day, if I have tolerated it and the tilt table test confirms that it has reduced or got rid of my symptoms, will be spent learning how to inject myself. Once they are happy that I can do that I will be allowed to go home and then the fun may begin with getting the local care commissioning group to allow the drug to be prescribed to me as a) the cost and b) its being used off label. So even now I don’t know if I will be coming home with the drug if the trial is successful or if I will have to see if my GP will be allowed to prescribe it. Talk about jumping through hoops!

I’ve included a few links in this post so that you can find information easily should you wish to find out more.

Obviously I will update you in future posts! Of course my admission to hospital depends on whether or not a bed is available so I could be worrying myself sick over nothing!

***quick update Monday 7th April I received a telephone call to say the trial has been moved to the 14th April. **

Frankie!