Sunday 13 December 2015

Nil by Mouth

My poor Stacy is still in Watford General Hospital and it's now 3 and a half weeks!  If you remember it started with a Crohn's attack and a chest infection almost 4 weeks ago.

Larry and I have been ill since last Tuesday so that was the last time we saw her until today.  We have spoken to her every day.

We still aren't well but she was really fed up and I could tell, because she texted me yesterday not to phone so I got really upset and didn't sleep at all last night.  I tried everything to get to sleep but it just wasn't happening.  I texted Stacy but no answer.  Finally I phoned around 10ish and she sounded absolutely awful.

What did I do?  I thought sod it just go there and spend 5 minutes with her but don't get close.  Also to take up my Kindle because her one has stopped working even though it's only a year old, if that.

So we both got dressed and Larry took me because he hates the way I take off and put on the wheelchair from the car and the new hoist is so slow it's like a turtle and I'm not very good at it to be honest, but I'm only telling you guys.  Larry NEVER reads FB he thinks it's terrible and he never reads my blogs either, so I'm safe so long as YOU don't tell him.

I went in and Stacy was hooked up to two new drips and was totally out of it.  She is also nil by mouth which further concerned me as it means she isn't taking any of her medication.

I asked the nurse what was going on and if the Crohns team had been to see Stacy, because Stacy told me they were coming.  The nurse looked at me like 'and who do you think you are?'  So I said to the nice nurse 'I'm her mother'.  The nurse stepped back and apologised and said 'Sorry, I thought you were her sister.'  I can take that. Don't know how Stacy would feel about it.  Does that mean she looks really old or I look really young.  I'll go for the second option, but really don't think I do.

The nurse told me that the surgeon and his team were coming tomorrow to discuss what to do as Stacy was still in a lot of pain.  I really didn't take that well at all.  I told her that under no circumstances could they possibly operate because she has, apart from everything else, PVOD.  The Nurse had absolutely no idea what this was.  Surprise Surprise!  I explained the basic ins and outs of it but am still not sure she understood me.  She gave me the phone number of the ward so I, Larry, could phone in the morning and let the day staff know exactly what is wrong with her and to warn the Surgeons that if they operate they will kill her.

Stacy was sleeping this whole time except for when I tried to wake her up by gently shaking her leg and she opened her eyes and I left her an Apple plug and my Kindle, which I can manage without because I have other ways of reading - like my phone which is fine to read on. But I'm not sure she will remember I was there.

When Stacy is awake she really is fed up with being in hospital and I certainly don't blame her.  She isn't well and has spent most of the last 5 months in one hospital or another.  It really sucks!!!  And I really feel for her.

The whole thing is truly heartbreaking.  I so want her to be able to go on an unforgettable holiday and I so hope she gets better soon to be able to go.  The pledges have stopped because my goal was reached, but I didn't think they would and I hate being greedy but as my son said I should have checked how much everything was going to cost before I put a sum up.  I just thought of a number and away we went, regardless if the amount is enough or not.

Please get better soon my Stacy because we love and miss you, and if you were well we would be seeing you all the time but we don't want you to get sicker by catching whatever we have.

All my Love Forever

Mum xxxxxx

Tuesday 8 December 2015

Stacy is still in Watford General

What more can I say?  It will be three weeks on Thursday minus the day she was sent home.  She is fed up being in there and I've run out of things to tell her or say to her - boring old fart I am.

The only thing I have to tell you is that her father, also known as my husband, is ill too.  So I guess we won't be going there tomorrow.

I have started up a Bucket List on my Pinterest Board which I am totally addicted to and I have on there all kinds of stuff like cooking and cross stitch and quilting and baking and now Stacy's Bucket List which only has one thing on it and that is a cruise liner.

Stupid me when I started the CrowdFunding page I never even thought of how much the insurance would be for her with everything that is wrong with her.

When we went away last year there was not so much wrong with her. Certainly she had Crohns, and Avascular Necrosis (that's where there is no blood getting to her hips so she needs new ones), Insulin dependent Diabetes and Fibromyalgia (have to buy those Gingerbread Thins from M&S - I was in there today and bought her fruit but forgot the Gingerbread Thins) which were the main things wrong with her then but this Pulminary Hypertension thing (PVOD) is a whole new ballgame because it is terminal.  But it has to be declared along with everything else.

I never include Larry & my illnesses because let's face it neither is life threatening and if he has a hypo because of his diabetes it's no big deal he just takes these tablets that taste like that horrible sweet drink that I can't spell but it looks a sort of orangey yellow colour and is vile - but he likes it.  With my MS nothing is going to happen and if it does so be it I treat it with the contempt it deserves.

So that's all for today and I guess we won't be seeing Stacy or the children tomorrow either.  Saw all of them on Sunday and oh yes I'm going to collect Lily (12) from school tomorrow because she is practicing for her play after school.  But I can't look after the two little ones on my own, wish I could.  

Thursday 3 December 2015

Stacy is in Watford General AGAIN

Watford General Hospital is a 521-bed acute District General Hospital in Watford, Hertfordshire, operated by West Hertfordshire Hospitals NHS Trust along with Hemel Hempstead General Hospital in Hemel ... Wikipedia
Stacy was released from hospital Tuesday afternoon.  Yesterday afternoon Larry (her dad and my DH) went and picked up the medicines they didn't have ready yesterday from Watford General Hospital.  No big deal honestly because she has so much medication it is totally untrue.

Then when he got home we got a call from the the Warden Assisted block of flats that she lives in to say Stacy wasn't responding again - all I can say is thank g-d for Beverley who is one of the Wardens there and is amazing.

We raced up there, thankfully it's only around a mile away from where we live, and she was sleeping on the couch and hadn't eaten anything nor taken any of her medication. She wasn't very responsive and when she was she was yelling to leave her alone.  Stacy never yells and this just wasn't her.

It's now 22:11 (yesterday) and we haven't been home long, because I phoned up the doctors to get somebody to come out and see her and luckily enough for me the girl that answered the phone was a friend of mine. Instead of of sending out a doctor Lindsey had my favourite doctor call me.

Dr. Jo called and told me that the hospital had phoned the practice this morning and another doctor (who shall remain nameless but is very lovely) answered the call from the hospital who said that they wanted Stacy to have another blood test either today or tomorrow. Well did she let rip - I wouldn't have liked to have been on the other end of that phone.  She wanted to know why they had discharged her without telling her and why they had discharged her after only being well for one day.

Dr. Jo said to leave it to her.  She phoned up the hospital and told them in no uncertain terms that they had no right discharging her without a proper care package being in place firstly and secondly how could they discharge somebody so ill who had only been okay for one day after being in there for just under two weeks (one day under two weeks).

We followed the ambulance and stayed with Stacy from around 3 this afternoon until we left at around 8:15 this evening because Stacy had been sleeping for a while by then and Dr. Jo had made arrangements for Stacy to go back to AAU (Acute Admissions Unit).

Do you know I think I hate the NHS right now.  They owe my daughter a duty of care and all they are worried about it is the shortage of beds they have and getting the people out of them as fast as possible.  Well, if they hadn't closed down so many hospitals in Hertfordshire, they wouldn't be in the trouble they are in now. Watford General Hospital is the only hospital for miles and miles and it isn't big enough or have enough staff and no wonder it is under Special Measures which means, I think, they aren't doing their jobs properly.  How can they be expected to.

Okay it isn't the NHS I hate it's Hertfordshire County Council for closing hospitals left right and centre, closing schools and building houses on the land - not them but developers.

According to Hertsmere's Statistics there are over 100,000 people living in some of the areas the WFG covers and they have 521 beds!!!!

The caption above, under the small photo of WFG, via Wikipedia says that Hemel Hempstead hospital is a General Hospital but it isn't anymore.  They have closed down the A&E so anyone that goes to A&E at WFG and needs hospitalization goes into one of the 521 beds at Watford.

Where do Hertsmere County Council expect the sick people to go.  WFG is so short of beds it's untrue. And where do they expect the children that have moved to these new houses in Borehamwood and live in all these new houses to go to school?  There isn't enough of either.

There is a CrowdFunding page here
because all Stacy wants is a holiday with us.  Watford General says she can't fly but Hammersmith Hospital says she can.  So who knows.

Love Pxxx

Wednesday 2 December 2015

The past two weeks

Stacy lives in a Warden Assisted block of flats, or apartments as they now call them in England.  The Brits are taking all our terms now and just using them.  And so says this Yank!

Almost two weeks ago one of the Wardens at the flats where Stacy is in Bushey Heath, Beverley, was passing Stacy's flat (look I live in England where they have always been called Flats) when she heard noises and rang the bell but there was no answer, so she used her key to gain entry.  Stacy was sort of in her bed talking absolute gibberish.  We were called and went to the local hospital to find out what was happening, this was on Thursday the whatever of November - not last Thursday but the one before.

We got there and the only things coming out of her mouth were gobbledy gook!  What Stacy thought she was saying and what she was saying were two completely different things.  But she seemed to get worse and harder for the doctor and nurses to deal with whilst we were there.  So we left on their instructions.  We went and bought her a new dressing gown (bathrobe) because she had burnt a hole in the new one we bought in August and had some lunch (I think), but I know we just stayed in Watford for around an hour or so.  

We went back again and she was in the Resuscitation Ward which scared us silly (I would use a word like shit here but it might offend some people so I won't).

They next day she was moved to AAU which stands for Acute Admissions Unit and was in a ward, still not being understand.  By this time they had taken bloods etc and now moved her to a single room because they weren't sure if she was having a Crohns attack or not and just to be careful in case it was an infection they thought as she was being so sick etc. she would be better on her own.  The doctors ascertained she was having a Crohns attack so more steroids were intravenously administered and she had a chest infection so they also gave her intravenous antibiotics for the next week and she got remarkably better. So they moved her to the Crohn's Ward. All was going swimmingly until last Saturday, when she had been in for over a week, and Stacy said she really didn't feel well.  She said she was getting pins and needles all over her body and everything was sort of tingling.

On Sunday, when she felt worse, they did more blood tests and an ECG (Electro Cardio Gram) and found out Stacy was lacking in oxygen and her level was down to around 82 instead of the 98 it was supposed to be.  From the blood tests they found she was lacking in various minerals that one needs to live. Stacy now had two cannulas, one in each arm with two or three on each, and was given oxygen by that nose thing you see on TV, calcium, potassium and magnesium because these were the things she was lacking in her body. What a nightmare to be honest.

Stacy this past Sunday
The lack of oxygen was from the PVOD and they performed an ECG and kept her on a heart monitor for two days.  This really scared us witless and I really thought it was the end last Sunday.

Thankfully, however, by Monday she was feeling a lot better and the scare, this time, stopped.  However she was still tingling and had pins and needles all over and this was due to lack of calcium still.  She is now under an Endocrinologist, this relates to the Endocrinology Unit at Hammersmith, but in the meantime before we get back to Hammersmith next week, she has been assigned one by Watford General.

So that's all that has been happening.  Not fun but hey nobody ever said that life was meant to be fun.  

Until next time

Pat xxx 

Monday 30 November 2015

So Tell Me What is PVOD?

Stacy did not have any of the symptoms for Pulmonary Hypertension, as far as us laymen knew, except she was swelling up like she'd been given huge doses of steroids and couldn't even open her eyes because her face was that swollen.  When Watford General discharged her in June they said they were referring her to Hammersmith Hospital. Much later on, after she eventually went to Hammersmith I found I had her discharge papers from Watford General and on them it said Pulmonary Hypertension?  So I guess they knew, or guessed, but never referred her and then in August her face blew up again and our GP (General Practitioner) was called and he referred her immediately to Hammersmith Hospital and the rest is history.


There is a disease called Pulmonary Hypertension.  It is rare, but not nearly as rare as what Stacy has.  What Stacy has is a different genre of this rare disease.  

Pulmonary hypertension is raised blood pressure within the pulmonary arteries, which are the blood vessels that supply the lungs.  So you can have really low blood pressure (like Stacy has) and yet still have Pulmonary Hypertension which is really high blood pressure in your lungs.

PH is a serious medical condition that can damage the right side of the heart making the heart less efficient at pumping blood around the body and getting oxygen to the muscles. Stacy, at this point in time (last August), had a litre of liquid between the lining of her lung and her the outside wall of her lung.
(If you click on the link above you can read all about Pulmonary Hypertension)

The doctor we saw at Hammersmith Hospital, didn't tell us outright what was wrong with Stacy but just said it was incurable.  My reaction was 'big deal neither is MS and I live with it just fine'.  That was on the Wednesday and on the Thursday the head of the Pulmonary Hypertension unit came and spoke to us.  He said that there were only about 0.1 cases of PVOD in Europe so that makes Stacy one in ten million, and that what she has is rare even in the realm of rare diseases and that it is called, by the acronym, PVOD.

PVOD stands for Pulmonary Veno-occlusive disease and it is difficult to diagnose and is the rarest form of PH.  Diagrams were drawn and we sort of understood, to a degree, because we were trying to take this all in, which was difficult to say the least.

So I asked him some questions, but not the right ones I guess because I really didn't want to know.  But that the only real 'cure' for this rare disease is a Heart/Lung transplant but together with everything else that Stacy has wrong with her, this was doubtful plus she is still smoking and they definitely won't do a lung transplant if you smoke.

I went home and went on the internet and typed in PVOD and was given all the information Dr. Gibbs had already given me but told that the median life expectancy was 2 years from diagnosis.  So when I saw him the next day I asked him and he said yes that was about it. I also asked him if she would suffer and he said no, so that at least is good.

So that was where we stood.  Definitely not great, in fact far from it and I really don't know how any of us will cope with this dire prediction.  All I can hope is that Dr. Gibbs is wrong but somehow I don't think so as he is where people with PH and PVOD come to from all over England, Scotland, Wales and N. Ireland because he is the best.

But this so isn't the way it's supposed to be.  She should be burying us and sitting Shiva not the other way around.  I can remember months ago, after I had been following a blog about a young mother fighting breast cancer and losing the battle and thinking, and writing to her young widower Elliot ( 'I feel really sorry for you and the children, a daughter and son, about Rosie's passing but how on earth are her parents coping.  Well now I think I'm in the same boat and can't stand it and don't really want to know.  I don't want to be where I am and neither does Larry, her dad.  Nor Stacy's brother and sister. 

Stacy is my normal lovely daughter who wouldn't hurt a fly and would give anyone, if they asked, her last penny.

Sunday 29 November 2015

The Start by Stacy's Mum

I am going to be writing this blog to keep everyone updated, that wants to be kept in the loop of how Stacy is doing.

It's been a hard 20 years for her.  When she was a teenager Stacy kept on telling me her stomach hurt and my silly rule was no temperature my kids went to school.  I took her to the Doctor constantly and he kept on saying it was nothing.  

Well it wasn't nothing.  When Stacy was 22 it was discovered that she had Crohns Disease.  So she was never telling me she had stomach ache when she didn't and boy did I ever feel bad.

She spent some time in Watford General Hospital under a Gastro man (who shall remain nameless so I don't get sued or anything and boy would I ever like to sue him).  It turned out that she had the Crohns in the small bowel instead of the large bowel which is another ball game completely.  You see if you have it in the large bowel they can give you an Ileostomy which would give the bowel time to recover.  But that was 20 years ago and things have really moved on from there. 

Her doctor at Watford labelled her a hypochondriac and every time she went into hospital with a stomach ache they just automatically put her on Steroids.  Now steroids are a wonder drug of sorts but like everything else there is a downside as well as an upside to them.  Stacy was given these drugs ad hoc when she wasn't even having a Crohns attack.  

G-d forbid they would have done a blood test before giving them.  But no!  As soon as she went into A&E the steroids were given intravenously and we were never told of the side effects and to be honest I never even looked on here to see what side effects, if any, there were.  Once they are started they have to finish the course or 5 days of intravenous steroids followed by tapering off doses by pills over a three or four week period.

So what did the steroids do, I hear you ask?  Well she now has, via the overuse of them:
  1. Osteoporosis
  2. Fibromyalgia
  3. Losing her teeth because she has no bone density from the Avascular Necrosis
  4. Avascular Necrosis - this is basically the death of the bones in her hips. The surgeon at Watford General has replaced the left hip twice and it still isn't right.  He also left her hipless for 9 months because it got infected and he removed it and didn't put it back until we complained to PAL. 
  5. Rheumatoid Arthritis  
She has other things wrong thanks to the steroids but I just can't remember them, sorry.  I know I'm a rotten mother, what can I say!

I will explain about the PVOD tomorrow because she is really poorly today and I can't write anymore.  But thank you if you are reading this.