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Monday, 14 November 2011

Hyperemesis Gravidarum Pregnancy Three? Four Weeks

I am currently four weeks pregnant.  I am feeling worse than the shorter pregnancies but better than the previous hyperemesis pregnancies so I am hopeful that a) the pregnancy will last long enough and b) I will not be as ill as I was last time.

So far the times I have felt the worst have been when J was over an hour late making breakfast on Saturday morning and when I walked about 100 metres from the car to church on Sunday morning.  I find standing makes me feel much worse so I did not stand for the singing at church and abandoned attempting to sing half way through the first song.  After the service, J went and drove the car up to the chapel to pick me.  If I wanted to I could actually do all those things but I can tell how much worse they make me feel and knowing that it has a cumulative effect I know it is not worth it in the long run to make myself do things that make me worse just because at this stage I'm not actually being sick.  Next week we will only go to one service as it was definitely a mistake to go to two.

Aside from the usual pregnancy multivitamin, I am taking B vitamins, homeopathic remedies, an anti emetic and other supplements such as ginger capsules.  I am wearing sea bands and to make sure I eat/drink frequently enough I have three meals, three snacks and twelve drinks per day scheduled (along with all the things I'm taking) on my iPod.  J gets up at seven and gives me drinks and breakfast in bed before he goes to work and I get up at 8.30 when he goes out.  I have a two hour rest in bed in the afternoon while A has quiet time and aim to be in bed around nine in the evening.  I made and froze lots of dinners before I was pregnant so J gets one out and puts it in a bowl in the fridge the evening before so that I can just pop it in the microwave when he is due home.

So far the plans/preparations/reorgaqnisation I have done mean that although J has taken over some of the things I usually do his workload is not dramatically increased and he still has time to spend with me.  And although I am not able to take her out, A can play in the garden and I am still able to do all the usual "school" type things with her.

So far so good.  I am really hopeful that by taking pre-emptive medication and doing everything possible that might help pre-emptively rather than reactively I will be less ill.

Wednesday, 12 October 2011

Hyperemesis Gravidarum Pregnancy Two: Part Three - Hospital Continued

I had been getting a vibe through Thursday and Friday from the midwives caring for me that they didn't think I was really that ill and that I was just "choosing" not to eat. On the Thursday I had been given a "vitamin" tablet and "folic acid" (on a subsequent day they were claimed to be "thiamine" and "iron" but my medical records say they were thiamine and folic acid) and even though I said I could not take them, the midwife had left them by my bedside in a paper cup. On the Friday when I was offered them I again said I couldn't take them but the midwife insisted on leaving them and seemed very annoyed with me when she returned an hour later to find I hadn't taken them even though I had told her I couldn't. She was even more annoyed when she discovered the previous day's tablets where they had been left as if I had been deliberately accepting medication and leaving it lying around when in fact I had made it clear that I could not and therefore would not take it.

That evening my suspicions were confirmed when I overheard the same midwife talking about me. She said she felt sorry for my daughter because I had spoiled her Christmas as I had made myself ill by "refusing" to eat and that if I just stopped "refusing" to eat then I would get better. I knew she was talking about me since she used my full name and considering how far I was from the nurses' station I imagine half the patients in the ward would have heard what she had to say about me. Since the ward was much quieter that night and I was exhausted with having been kept awake by women in labour the first night and babies crying the second night I slept all night long. My third dose of metoclopramide was due in the middle of the night but again I was not given this presumably because I was just "making" myself ill by "refusing" to eat.

This attitude to hyperemesis gravidarum was seemingly widespread; while the healthcare assistants were changing the empty beds in my room that day they discussed pregnancy sickness and how in their day you "just carried on" and it was unheard of for people to end up being admitted to hospital with it because "you just got on with things". (Which is funny because I thought that in their day people died of it but I suppose the people who died of it weren't around to tell the tale.) The healthcare assistants' unprofessionalism was not limited to hyperemesis gravidarum - they also thought that any pregnant woman with swine flu had herself to blame (while there was a pregnant woman lying seriously ill with swine flu elsewhere on the ward) and were unable to wait for me to get out of the bed before starting to strip it.

On Christmas morning a doctor was asked to review me because I was "refusing" anti emetics (i.e. I said that cyclizine made me worse and metoclopramide hadn't helped so I wanted to be given something else). Unfortunately not only had all the anti emetic doses not been recorded but most times I had been sick weren't recorded (and I have just discovered that the records claim I drank 200ml on the Thursday when I had maybe a dozen sips of orange juice) so the doctor did not believe either that I was as ill as I said or that I had had enough medication to be able to tell if it worked (even though I was able to recite to her the times of all the doses). She said that she had to follow the hospital "protocol" and that if I continued with metoclopramide for the rest of the day and it didn't work she would be able to give me something else so I agreed to continue with the metoclopramide.

By now I felt that the hospital staff did not believe I was that ill and were not going to do anything other than provide IV fluids and anti emetics which didn't help even though I was unable to eat and drink and had consumed next to no food in the previous few days and was showing no signs of being able to. I was concerned that if it continued it might cause longer term harm to my health (and possibly as a result harm to the baby) and although he didn't tell me at the time, J was concerned that if things continued the way they were I might die. He did express his concern a number of times and ask whether I could have a glucose drip as I was still ketotic and receiving no nutrition but was always fobbed of with the rather patronising assurance that he didn't need to worry as the baby would be okay which would have been rather a moot point had I died. So on Christmas morning in desperation I phoned J and asked him to find a private hospital who could take me as I couldn't see any other way that I could get decent treatment. Unfortunately there are none in our region who will treat pregnant women so I had no choice but to stay put.

I was given the metoclopramide as agreed and then two hours later was told I was supposed to be given cyclizine in addition to the metoclopramide. Although it had made me worse before I was so ill and so desperate that I agreed to take it. This was a mistake as I ended up with arm tremors and was unable to stay conscious while A opened the two Christmas presents J had been able to find at home and bring in. When the next dose was offered I declined the cyclizine and only accepted the metoclopramide.

Since the next dose of metoclopramide would be due the following day, I considered that I had tried metoclopramide for "the rest of the day" and enquired about being given a different anti emetic but this never materialised and I was offered (and refused to take) metoclopramide and cyclizine for the remainder of my stay. (Of course I wasn't offered the dose that would have been due in the middle of the night so even without my declining I still would not have had a full 24 hours worth of metoclopramide anyway.)

Once I stopped taking either of the anti emetics I started to improve and was finally discharged on Monday 27th December five days after being admitted. Initially I was told I would be discharged with cyclizine and metoclopramide so I told the doctor that cyclizine made me worse and metoclopramide didn't help so she said she would think about what to give me. When the time came for me to be discharged the midwife said I was being discharged with cyclizine. I told her I couldn't have it as it made me worse so she said I would be discharged with nothing.

The clinical summary of my stay sent to my GP states, "she was started on IVT and regular antiemetics. she responded well to treatment and was discharged on regular antiemetics" with the anti emetics I was discharged on listed as cyclizine and metoclopramide and the date of discharge as "Dec 24 2010".

Wednesday, 5 October 2011

Hyperemesis Gravidarum Pregnancy Two: Part Two - Admission to Hospital

As with my previous HG pregnancy I had been admitted to hospital less than twelve hours after being told by an out of hours GP that I did not need to be admitted. The previous time I had been given excellent treatment and had improved fairly quickly. This time was the opposite.

All the routine things were done such as taking my history, running through the treatment plan (which was as I expected having been through it before), patronising me with reassurance that I didn't need to worry because the baby would still get the nutrition it needed, inserting a canula (this time they only needed to go one size down) and doing various tests. Being dehydrated and having provided a urine sample at the GP I was unsurprisingly unable to provide another one. Despite the fact that I had drunk nothing, four hours later when I was finally given IV fluids they seem surprised that I was still unable to produce one.

In the evening I was offered a "warfarin" injection to reduce the risk of deep vein thrombosis which I declined. Warfarin is particularly dangerous to the unborn child but as I later found out when I obtained a copy of my hospital records it was actually low molecular weight heparin they were offering me and not warfarin.

My first anti emetic was finally given about twelve hours after I was admitted at around 11pm (although recorded in my notes as 7pm). Within a few hours I was feeling much worse so when I said I couldn't manage oral painkillers I was given the antiemetic intravenously. I managed to swallow the pain killers but was sick before the midwife had time to walk to the next person. Even though I had been admitted for hyperemesis nobody had thought to provide me with sick bowls but I had with me the yoghurt pots I had carried for the journey so was able to use one of them.

I was offered the same anti emetic (cyclizine) two or three times the next day (Thursday) but since it had made me worse, I said I didn't want it as it didn't work. Eventually one of the midwives told me that I needed to take it because if I didn't I wouldn't be given anything else. I told her that as I was pregnant I did not want to take unnecessary medication, that since the cyclizine did not work it was an unnecessary medication and that it was unreasonable to refuse to give me something else just because I wouldn't take something that wasn't working. She took my point and at 5.30pm I was given metoclopramide. Although there appears to be no record of this dose anywhere in my notes, when I requested a further dose at midnight I was told I needed to wait a further two hours as apparently it was eight hourly. I asked if there was anything else I could have and the midwife said she would ask a doctor for something else. Although I was awake most of the night due to the crying babies in the postnatal room next to the room I was in, I was not given any anti emetics until the next morning and my records say I was "sleeping" at multiple times through the night which presumably means that I was lying still with my eyes shut as one usually does when attempting to sleep.

After being given my "anti emetic" on Friday morning I was much worse again and on enquiry later in the day I was told I had been given cyclizine rather than the metoclopramide I was supposed to have been given (neither is recorded in my notes as having been given). This meant that instead of receiving three doses in 24 hours I had been given one dose, missed one dose and been given the wrong thing before being given a second dose of metoclopramide.

By now it was Christmas Eve and they seemed to be keen to discharge everyone regardless of how ill they were. One lady who was readmitted with sickness the day after me had been discharged prematurely the day prior to her readmission and another lady who had been in overnight and promised certain medication was then discharged with paracetamol - both commented that they just seemed to want to get everyone out without regard to whether they were ready just because it was Christmas.

Even though I was worse and had only consumed a quarter slice of toast and a few sips of orange juice since being admitted the doctor who saw me that morning had me taken off the drip and told me to drink a glass of water per hour with a view to me going home that afternoon. Although I knew it to be futile I did make some attempts at drinking but every time I had a single sip of water I vomited violently and was unable to make another attempt for some time. I was only actually sick six times that day but the frequent retching in between (which was just as bad - whether anything came out or not was a moot point really) made it impossible for me to consume anything. After three hours off the drip they realised I was becoming increasingly dehydrated again and resumed intravenous rehydration although according to my notes they still hoped to discharge me later that day.

Wednesday, 28 September 2011

Hyperemesis Gravidarum Pregnancy Two: Part One - Descent into sickness

Since I was so ill in my first pregnancy (too ill to look after myself let alone a baby or toddler) we felt we needed to allow a large age gap before another pregnancy in case I was ill again and A was 3 1/2 when I next had hyperemesis gravidarum.  In some ways I was relieved when I realised it was a hyperemesis pregnancy as I had recently had miscarriages of non-hyperemesis pregnancies and the sickness made me feel more confident of a good outcome.  (In my first pregnancy the doctors kept telling me that the good news about having bad sickness was a much lower risk of miscarriage but at the time when you are that sick you don't really care.)

In the intervening years since my first pregnancy I had forgotten how bad it was.  In some ways the actual sickness is not the worst thing.  The worst thing is that people do not believe how bad it is.  I had people say that they were able to carry on working during pregnancy because they just had to keep going even though they felt sick.  As if I could keep going but was just choosing not to.  Many people who have only had morning sickness seem to think that the reason you are ill is because nobody has told you that you just need to eat ginger or eat before you get up in the morning or eat crackers or whatever it was that helped ease their much milder sickness/nausea.

As a result I actually started looking into how serious hyperemesis gravidarum is.  Until the introduction of intravenous rehydration in the 1940's it was actually the leading cause of death in pregnancy:

"Hyperemesis gravidarum was a significant cause of maternal death before 1940. In Great Britain, mortality decreased from 159 deaths per million births from 1931-1940 to 3 deaths per million births from 1951-1960. Charlotte Brontë is thought to have died of hyperemesis gravidarum in 1855. In the United States, 7 deaths from hyperemesis gravidarum were reported in the 1930s. Today, although hyperemesis gravidarum is still associated with significant morbidity, it is still a rare cause of maternal mortality.
...
Hyperemesis gravidarum is a debilitating illness that can cause severe suffering, which profoundly affects both patients and their families. In about half of the women there is an adverse effect on spousal relationships, and 55% have feelings of depression. In one study of 140 women with hyperemesis gravidarum, 27% required multiple hospitalizations.
(from http://emedicine.medscape.com/article/254751-overview ).

It was only at this point that I realised that without the IV fluids, it is quite possible that I might have died in my first pregnancy.

I saw my GP for an anti emetic but within a week I went back because I was being so sick.  Unfortunately whilst not easing enough for me to not be losing weight my sickness did vary enough that when I saw him I was not ketotic so he sent me home with a different anti emetic and told me to come back if I got worse and that if I became ketotic he would refer me to the hospital.

The rest of that day (Monday) I wasn't sick but the following day I started being sick again and when I checked in the afternoon I was ketotic so I asked J to book me a doctors appointment for first thing Wednesday morning.  As the evening progressed I realised that I needed to be admitted to hospital for IV fluids so J phoned the out of hours service.  The doctor he spoke to said that he should bring me in and if I tested positive for ketones he would have me admitted to hospital.  Unfortunately by the time we got there (after J had packed me a hospital bag and got A up and ready to go out) there had been a shift change and the doctor who saw me seemed to think the best possible thing was to keep me out of hospital for as long as possible and gave me a buccal version of the anti emetic I already had.  This did make me well enough to take a few sips of water overnight and the following morning I saw my GP who promptly referred me for hospital admission.

The previous time I had been in hospital for three days and had improved fairly quickly so since I had managed to control the sickness better (due to experience) and had only lost five pounds by the time I was admitted I was fairly optimistic that I would soon be improved and thought I may only be in for two days which would have allowed me to be home before Christmas Day.  Unfortunately this was not to be.

Wednesday, 21 September 2011

Hyperemesis Gravidarum Pregnancy One

Before my first pregnancy I had never even heard of hyperemesis gravidarum.  I had heard of morning sickness and knew that some people had it bad enough to need medication but I had absolutely no idea that pregnancy sickness could be so bad.

The first time I was sick was at three weeks pregnant.  The next week I hardly got anything done because I felt rotten and then when we went on holiday the next week we had to greatly reduce our planned walks as I just couldn't manage them without feeling very ill.  Little knowing how bad it would get, it was actually a great relief when I got a positive pregnancy test at five weeks as I'd been beginning to wonder if something was seriously wrong with me.

Around five and a half weeks I had to see the out of hours doctor because I was unable to keep anything down and was given an injection and some tablets to take.  Over the next week as they didn't work I was given various different tablets and the morning after being told by two different out of hours doctors that I did not need to be admitted to hospital I saw my GP who actually took notice of the fact that I'd lost a stone in weight and referred me to be assessed at the hospital.  The doctor who admitted me thought I was so bad that he actually set up the drip himself almost immediately and asked us why we'd waited so long.  Because I was so dehydrated he had to ask for a child sized cannula as my veins were so small.

After three days of IV fluids and medication, I was well enough to be discharged.  When I asked about being given medication to take at home I was told that they don't give you medication when you leave and you just had to be readmitted if you get bad enough.

Even after I'd been in hospital, people generally didn't seem to realise how ill I was.  One person asked how I'd managed to be admitted to hospital when she hadn't but then in the next breath said that she only took the anti emetics if she was sick three times in a day as it interfered with her life too much to not be able to drive.  At the time I would have loved to only be sick three times in a day and for anti emetics to actually make a difference.  And driving was a moot point since I was so ill I had no life for lack of driving to interfere with.

Although I was sick all the way through the pregnancy, it did decrease over time to the point that in the second half of my pregnancy I was occasionally able to manage the three minute walk to the doctor's surgery for my midwife appointments.  One day when visiting some friends we went for a walk but two minutes down the hill J had to go and get the car to drive me back.  In the early days when I was too ill to read or sit at the computer I watched daytime TV to relieve the boredom of sitting at home on my own all day doing nothing other than attempting to eat and drink and not be sick too much.  Unfortunately daytime TV is mind numbingly boring and I was very relieved when I felt well enough to read albeit only easy reading such as children's fiction.

My typical day in pregnancy looked something like this:
0800: Eat breakfast in bed, clean teeth in bed and go back to sleep.
1100: Get up. Watch TV or read a book.
1230: Get dressed with J's help (he came home for lunch almost every day while I was pregnant to look after me). Talk to J while he makes lunch then eat lunch.
1315: Watch the news/other TV.
1430: Do a few admin jobs on the computer if well enough.
1530: Watch TV/DVD/read a book.
1630: Sleep
1800: Get up and watch the news.
1900: Eat dinner then watch TV/read while J washes up and does a few other jobs.
2100: Go to bed.

I quite often had a long bath in the evening to break up the monotony but it was quite tiring and created even more work for J who was already working full time, doing everything essential that I usually did and looking after me.  I was constantly tired but at least sleeping 12-16 hours a day meant that I didn't have so many hours of feeling sick, tired, bored and lonely to endure.

The transformation when A was born was amazing.  Two weeks before she was born, I would hand J paper tissues to put in the bin because the bin was a meter away but two weeks after she was born I was easily going for two mile walks every day.  In the week after she was born I did more household jobs (not counting baby related tasks) than I'd done in the month before (possibly even more than the whole pregnancy - I only cooked one meal beyond four weeks pregnant).  Some friends thought it was strange that I was happy to stay at home all day and wasn't bothered about meeting up as they said they would get lonely staying at home "on their own" all day.  But for me the contrast with pregnancy was so huge that I was perfectly content.  I wasn't sitting at home on my own any more - I had A with me and I was no longer doing nothing so I was too busy to be lonely.  I actually felt quite baffled that suddenly people wanted to meet up/visit now that I didn't need it after I'd been stuck at home on my own for months on end without them ever offering to visit.

And that was my first pregnancy.

Saturday, 17 September 2011

Welcome

The purpose of this blog is twofold.  Firstly it is a place for me to record my own experience of and thoughts on hyperemesis gravidarum and secondly it is shared in the hope that it will cause others to be better informed about an illness which due to lack of knowledge and understanding causes both great misery and loss of life.