Another Hospital Adventure Part Two

Last week I wrote about just the first 24 hours of my three-day hospital stay, if you missed it you can find it Here.. This week’s blog post will be about the remaining two days.

Day two

I woke up happy in the knowledge that Jay would be coming to visit me, we had feared had we not been able to arrange a sitter for the dogs he wouldn’t have been able to visit (thank you I.C).

 

Quite early in the morning one of my neurologists came to see me to give me the MRI scan results (which were negative) and to advise me that an anaesthetist would be coming to speak to me, he told me I needed to convince her to do the epidural blood patch. I should have realised then that she wasn’t on-board with it but it went over my head. He also discussed occipital nerve blocks (injections in the base of my skull) to see if that made any difference. If they didn’t it was more proof that the leak was real, he told me for the moment we wouldn’t be doing the caffeine infusion if I was getting a blood patch the following day.

 

Within about 30-40 minutes the anaesthetist popped around to have a chat. We spoke about my various medical conditions, the pro’s and cons of an epidural blood patch, the procedure itself and the protocols for recovery. The meeting seemed very positive and it felt like it was a go. Halfway through the meeting Jay turned up and he was able to give his input on how incapacitated I have been etc.

 

After she left we decided to have a coffee downstairs in the restaurant but as we were about to leave the neurologist came to see us and asked how the meeting had gone. We told him she had gone away to do some research ( and I had pointed her towards CSF Leak Association ), she would get back to me and that we both felt the meeting had gone well. He then asked me to go back to the ward as he wanted to do the occipital nerve block injections.

 

He did say the usual “short scratch coming” which at the moment still feels like the understatement of the year. I pride myself on my high pain threshold after having a lumbar puncture when the local anaesthetic had worn off, putting up with the most horrendous bowel adhesion pain for 6 months before they operated. Nothing prepared me for how painful this was. The doctor felt around the base of my skull asking which part was most painful and then injected local anaesthetic into that area. I was injected 4 times, the worst bit on the following three was knowing how sore number one had been. The pain made me sweat almost immediately and tears pricked my eyes. I have very colourful language and was mindful that we were on the ward, so managed to limit myself to the odd “Jesus Christ” and “Shit the bed”. I have no idea where shit the bed came from it’s not something I use ever but it helped.

 

The feeling of numbness was exceptionally weird, the back of my head felt like it was missing and the tips of my ears went numb. I was determined to go and have a coffee (and a fag to be honest) so immediately after the injections were administered I left the ward. As I had spent so much time lying flat I knew I would get an hour or so upright. My days are spent lying down so I can get the odd hour here and there to get stuff like having a shower done. It’s not a great way to live but it works for me at the moment and you have to play with the cards you have been dealt. At the moment I have an extraordinary bad hand but I am just waiting for a fresh deal.

 

Jay could only spend a few hours with me and they raced by. The times when I had visitors (my parents visited every day) went the quickest. The ward I was in was classed as short stay, essentially you were there until they could get you a bed on a proper ward, so patients were always changing over. By Thursday afternoon I was the only original patient left from those I was in with on Wednesday.

 

In the afternoon the anaesthetist returned, she caught me wheeling myself back from the toilet. Her opening statement was “You look better after those nerve blocks”. I didn’t look better, I didn’t look any better than I had done that morning. The only difference was the back of my head was completely numb. My head was still pounding every time I was upright. I knew with her opening gambit the news wasn’t going to be good.

 

She had decided that she wasn’t going to do the patch, she blamed the fact I had EDS (something I hate because ever doctor who refuses to treat me does this despite all the literature telling them the only difference in surgical approach is the closing of wounds. I find it incredibly lazy and insulting). To be fair I don’t really remember much of the conversation as I was crying so hard. She told me she thought the best thing I could do was be referred to pain management. She seemed to think that this was the perfect solution, me lying down for the rest of my life stoned off my bonce on pain meds.

 

I cried on and off for the rest of the afternoon. It was a mixture of anger and frustration, I knew I couldn’t tell Jay at this point because he had left thinking that the blood patch was being done the following day and that potentially I would be fixed. I rang my mum, who talked me out of self discharging, I can say truthfully if she hadn’t had been on the end of the phone I would have just packed up my belongings and got a taxi. I was so frustrated with it all that I couldn’t see the point in being separated from the dogs and my husband any longer. My parents drove across the city to come to see me and to give me the medical information they had printed off about CSF leaks and epidural blood patches.

 

I didn’t see any other doctor after the news that the blood patch wasn’t going ahead. I want to think it was because they were as frustrated as I was although the thought has crossed my mind that they had heard about me losing my shit with the catering staff and were in hiding.

 

I rang Jamie later in the evening to tell him that the epidural blood patch would not be going ahead. I managed to hold it together and not cry whilst I was talking to him. We were both exceptionally angry as we had been sold the hospital stay on the premise that I would have a blood patch, that I could possibly get better. He had lost a week’s holiday pay taking the time off. It was such a blow to both of us that we are still angry about it. I should never have been admitted if they didn’t have the anaesthetist on-board.

 

Day Three

I woke up in agony with my back and spent the usual amount of time begging for pain relief. I wish I was allowed to administer my own medications in hospital but as they are controlled drugs I am not allowed. So I am at the mercy of the nurses and how busy they are. My head was also really bad as I had spent too much time upright the previous day. I couldn’t lift my head of the pillow without intense stabbing pains. My eyes were also extremely sensitive to light so from 6am I was wearing sunglasses.

 

My back never copes with hospital beds and always causes me lots of problems. Quite often it will take me a good 48-72 hours to get my pain levels back under control after a hospital visit, which is simply ridiculous. In hospital I had been confined to my bed as I couldn’t sit in the chair as my head wouldn’t allow this. At home I can lie down on the sofa or on my bed and the changing surfaces stops my back getting too angry. However today I could quite happily rip my spine and surrounding muscles out as I am in agony with muscles that are in spasm. Pain makes me emotional and tired, which is not a good combination. Any tears in front of a doctor and you are immediately labelled as depressed.

 

I saw a different neurologist first thing in the morning who advised me that the caffeine infusion would be going ahead. In my notes the pharmacist had left a message informing the doctors I would need an ECG before the infusion. To which this doctor said I didn’t. Without a definite yes or no on the ECG my treatment was delayed further. All I was concerned about at this point was getting home and I was getting frustrated that no one was taking any action. By 10am I was washed, dressed and packed, that is how serious I was about leaving. I was also beyond exhausted, although I had been sleeping whilst in the hospital I was constantly being woken up by people being moved into the bay. My bed was right beside the door and no matter how careful the porters were my bed ended up being bashed by the door as they wheeled a bed through. It would hit the end of my bed so hard that the whole thing would shake. People were in and out constantly so my no matter what time of the day or night it was my bed was being knocked.

 

Between approximately 10-11am I saw my usual neurologist who apologised for the change in plan, he was as surprised as I was that the anaesthetist had refused to do the epidural blood patch. He assured me that he and the consultant would come up with a plan. (I have now been home two weeks and have yet to have had any correspondence with them.I know things move slowly in the NHS and I am one of many patients, it’s just life is particularly tough at the moment). The plan for today was that I would have an ECG and as long as that was normal they would go ahead with the caffeine infusion.

 

Our bay was being looked after by the dream team today and I am not being sarcastic. The two nurses we had and the health care assistants were brilliant, really funny, got stuff done quickly and were in and out all the time. In the two days prior to this we were lucky if we saw anyone at all for hours at a stretch. One of the nurses was the lovely lady who had come to my rescue on the first night when I had the issue with food (Cottage pie, Fish pie anyone?) and we had a male nurse as well. I don’t know who was more unlucky, me or the male nurse as he was the one going to be doing my ECG. If you have never had an ECG, they basically stick a bunch of sticky pads on your body in various places. It can be a bit embarrassing for all involved if you have a large chest (that’s me) as a lot of the stickers have to go around and under your bosom. Years ago I had a very embarrassed male nurse putting the stickers on and he could barely bring himself to touch my breasts to put the stickers underneath. Now when I have an ECG I grab the bull by the horns and grab them myself cupping them out-of-the-way to spare both our blushes.

 

As expected my ECG was normal and half an hour later the caffeine infusion was started. I was warned prior to it starting that if I got palpitations, felt weird etc I was to call for a nurse. I really didn’t think I would feel anything as I drink so much coffee these days as caffeine boosts CSF production. Some days the coffee helps a lot and other days it makes no difference at all. The infusion would take about two hours to run and after that I would be free to leave the hospital. It was a very long two hours!

 

Just as the IV was started lunch was served to our bay. The catering staff out did themselves, managing to give 5 people the wrong lunches and I ended up without one. When we tried to get the catering assistant to sort it out, she left the bay without speaking. We ended up calling a nurse to then get hold of the catering supervisor to sort the cock-up out. I eventually got my vegan curry, however the lady across from me who suffered from Coeliac disease couldn’t get a guarantee from the catering staff that her meal was indeed gluten-free. I on the other hand never ever want to eat curry again.

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Initially I felt nothing as the drip started. It was only on the 30-40 minute mark I started to feel strange. I felt like every muscle in my body was twitching or vibrating and I felt really buzzy. I started to get palpitations which I thought were more to do with postprandial hypotension or reactive hypoglycemia. I did call for a nurse and my observations were taken, my blood pressure was just bizarre 121/66 ( a wide pulse pressure of 55 should be nearer 30) and a pulse of around 75. So there was no need for concern and the infusion could continue.

 

As time went on I noticed that my head pain had reduced and I was now able to sit up without grabbing at my head. This effect lasted for 5 hours, believe me to be headache free for 5 hours was absolute bliss. It also reduced my head pain for the following 5 days. By the time the infusion finished I was sat up and no longer had to lie down. I had my sunglasses off because my eyes weren’t light sensitive and they remained that way for the  following 5 days.

 

I managed to leave hospital at around 3:30pm with a diagnosis in writing of Spontaneous Intracranial hypo-tension (SIH) or in layman’s terms a cerebrospinal fluid leak. I suppose even though I hated every minute of being in hospital at least I have that diagnosis, which has been backed up by the occipital nerve block injections and the results of the caffeine infusion.

 

We are still raising money via Help me walk the dogs again for a new wheelchair and power trike attachment so I am able to get up to Woodbury Common and walk the dogs again. We have now raised £1400 of the £5000 we want to raise. Hubby is getting his back waxed on 31st July and as you can see from the picture he is pretty hairy! You can sponsor him via my go fund me campaign. The waxing is being recorded and it will be released on YouTube and via my blog.

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Many thanks

Rach

 

And Breathe part two

I am exhausted, I have been “normal” and been out of the house two days in a row and not for completely medical reasons.

For regular blog followers who don’t follow the The Myasthenia Kid on Facebook, my mum’s operation was cancelled on Monday 12th at 3pm, she has now been booked in on 28th April. So fingers crossed it is third time lucky. It is quite stressful waiting for her to have this operation. She needs it so desperately and the pain is so bad for her. Every day I worry she is going to have a bad fall and end up breaking bones. So we wait and hope that it will happen on 28th.
I had my dermatology appointment today for my dodgy mole. I had two dermatologists look at it and they are not concerned at all. I have been discharged from their service however if I have any concerns in the future I am to contact my gp. I have many raised moles on my body so I don’t think it will be the last time I will be seeing them. The consultant I saw was really lovely, the registrar was not very welcoming – not rude but you could tell he was either shy or just felt out of his depth with my medical history. Before even looking at the mole he was panicking about local anaesthetics as they don’t work very well on me. He asked me how I manage to have dental work, I told him most of my dental work is done at the speed of light as I burn through locals very quickly. He went quite pale.

He seemed quite unprepared as one of my moles I needed checked was in an intimate area. He asked me to undress but provided no blanket or gown for me to cover myself with. When I told him I wasn’t going to sit half-naked unless I had something to cover myself up with he quickly went and got me a gown. I was really surprised that he thought this was ok, when moments earlier he was asking me if I needed a chaperone, despite my husband being in the same room. It seemed he was more interested in keeping himself protected than protecting my dignity!

As both my moles were ok we were in and out in around 15 minutes. I had booked a dog sitter for 4 hours – just in case, so hubby and I were furbaby free (furniture would not be eaten and the dogs would not be serenading the neighbours). We headed off into the city to have a mooch around the shops. It was the first time we had been out of the house together for a non medical reason for probably 6-12 months. No that wasn’t a typo that’s how long its been. I actually can’t remember the last time we were out together alone.
I also went out yesterday for non medical reasons (as in no gp or hospital appointments). My friend H took me out to the local garden centre. It was quite a big deal, as previously when friends have taken me out I have used crutches or my sticks rather than my chariot. I have a really big issue about my friends seeing me in my wheelchair or me needing them to push me. Yesterday marked the first time ever that I had been out in my chariot with a friend. I was very nervous about it. H needed a crash course on assembling the chair and she picked it up like a pro. I decided that I was going to propel myself as doing that means whomever is with me can walk along side me and chat rather than have me have to turn around and speak to them. You don’t think about these things until you are in a wheelchair.
As its been a while since I have been out in my chair I had forgotten exactly how wheelchair unfriendly the outside world is. I managed to leave a nice black line down a newly painted white plinth because it was just a few millimetres too small for me to get past comfortably. I also managed to destroy one Wellington boot stand. Normally that would leave me mortified but for some reason it drove me to hysterics. I wasn’t even embarrassed that I had knocked it over. Poor H had to hurriedly pick them up whilst I negotiated an even tighter right turn. Luckily that was the extent of the damage caused.
I stayed out for 2 1/2 hours (go me!) it left me utterly exhausted. I went to bed for two hours when I got home but as usual when I have been out I return wired tired / amped. My head is buzzing from the excitement of being out of the house my body is wanting to melt down. I battled on until 7pm and then crashed spectacularly, falling asleep, well actually it was more of a horrific postprandial episode that I didn’t come around from until 10pm and then it was only briefly.
For some reason the postprandial collapses are worse than normal and due to one starting right now I am going to leave this and come back when it’s over!

Ok so I am back its is getting a bit boring now having to rest / collapse every time I eat. It has been really awful since yesterday. My heart pounds so hard in my chest it feels like my ribs are going to shatter. I become unbelievably tired as my blood pressure drops, today I recorded 79/40 just before I had to go to sleep as I couldn’t stay awake any longer. It seems to start my heart off in a funny rhythm where it pounds in my chest for the rest of the day grrr!

Anyway I digress both yesterday and today I have had a lovely time in the outside world. It makes a change from the four walls I normally view. I am beyond exhausted and I feel like I am having an out-of-body experience.

My own hospital appointment for a week of tests has been pushed back until May at my request. There was just too much going on this month for me with mum’s operation, my dermatology appointment and my sisters scan for her baby. There was no way my blood pressure was going to be my normal low, it would be raised with the stress of it all.

So I am a very tired but happy bunny today. 

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 Week Two

After what seemed like a disastrous first week on Octreotide (which I am taking for postural orthostatic tachycardia syndrome and post prandial hypotension) I am very happy to report the last week or so has been an absolute breeze! No side effects and my body seems more than able to cope on the dose that I am injecting once a day.


I had truly forgotten what its like to eat lunch and then not fall asleep / pass out (losing the whole afternoon), you know like normal people do. I’ve found my rhythm with the octreotide as long as I eat within 30-45 minutes of the injection I have no unpleasant side effects. I have noticed that sometimes it can send my blood sugar levels crashing down and it can on occasion leave me feeling a little shaky but as long as I eat on schedule that is quickly remedied.


On Saturday 26th April I managed to completely balls things up (I am on a learning curve here so mistakes are to be expected). I left it far too long between injecting and eating, approximately about an hour. The effect of this was to drop my blood sugar levels and there just wasn’t enough octreotide in my system to cover me during the digestion of my meal. Blood pooled in my abdomen, dropping my blood pressure and to cut a long story short I ended up sleeping away the afternoon. I was so angry with myself because I had messed things up but not only that when I’ve had an episode like that it makes me feel very ill for several hours afterwards. So my mistake effectively wrote off the rest of the day. It won’t be something I will be repeating in a hurry.


I am writing this on Tuesday 29th April and since Saturday I’ve been better at keeping track of the time. I am getting into a better routine and no longer feel so daunted when it comes to injecting myself. I am now contemplating going back up to two injections a day. The metallic taste has gone along with the weird headache I was experiencing initially. It seems like its the right time to move things forward. I know if things don’t go well I can stop for 24 hours and then restart on just one injection a day.


Its very hard having 90 minutes of near normalcy or improvement for me just once a day. The main difference octreotide has made is not having to retire to bed every afternoon after I have eaten. I am managing to spend a whole day out of bed which has been unheard of for quite sometime. With that though comes repercussions, the afternoon lie down used to let me recharge my batteries if I didn’t have a full on episode. It would give me some energy for the few hours I would see my husband after work. Now though by 4pm I am ready for my bed and I am having more joint pain because of sitting up for longer. I have over the last 12 months lost a lot of mobility due to my health taking a further nose dive. I am beginning to regret having 2 sofas in the lounge and wish sometimes I had got a day bed. I am going to have to start taking some time out of my afternoon to just lie down.


Its also hard dealing with the ignorance of some people who assume that octreotide is some kind of magic cure for me. It helps the PoTS issues but it doesn’t stop the pain from the EDS. It doesn’t stop the fatigue the EDS creates or from the PoTS. There is no cure for either of these conditions currently only treatments and for those of you who have followed my blog over the years you know I haven’t had an easy ride trying all those different medications.


So at some point over the next few days I will be increasing my dose back up to two injections a day. Once I have been doing it for a little while I will update you with how its been going.