Things continue to improve…

Just a little update as I am now 3 weeks post op.

I am still getting the odd tingles, muscle cramps and twitches but they are easing off a bit now. The weirdest ones are my stomach muscles just under my ribs suddenly cramp up which always makes me jump!

It is hard to guess how much energy I have as it still varies. Yesterday I went for lunch with a friend and spent and hour wandering around a garden centre (I know, I’m getting old and a day out to a garden centre is now suddenly really appealing) before eating and then then still felt like I could have done some more. My friend was very sensible and told me to take it easy and not to push it so we came home for a cuppa and a natter instead.

The strange novelty of being able to walk normally has not worn off. I have an urge to strut around and nudge other shoppers and say “Hey, look at me walk! See no stick! See no waddle!”  - I manage to restrain myself. My friend suddenly said “My god, I never realised you were that much taller than me!” so it’s not just in my head that I seem to have grown an inch! No longer hunched over, no longer feeling like all my muscles are made of mush means I can stand upright naturally.

The last two days have been  an up and a down. On the downside I had one bad day when I was getting lots of low calcium symptoms and felt a bit foggy again which was scary but it passed – I just need to trust my body is trying to adjust and this is going to take time. On the up side though, it has become clear that something has changed a great deal with my eyesight. I realised quite early on that it has improved and everything was much clearer but over the last two days seeing things further away from  me has been quite different. I can only describe it as if you had a rotten old television for ages where the picture was ok but a bit rough and then you suddenly buy a top of the range plasma high definition model with bells on…

I knew I was having trouble focusing on things, especially if they were moving, but wondered how much was down to my cataracts (if I close my left eye I still have double vision in my right caused by a split cataract) Suddenly I am amazed to see everything has become very 3D again and it is making me wander around gazing at things (and probably looking a bit simple). I noticed it first in my garden while hanging out the washing – the garden just looked incredibly beautiful and, well just very 3D if that makes any sense. I’m guessing my eye muscles are working much better now and are able to focus, in fact my friend yesterday commented on how I was actually looking her in the eyes when I was talking to her rather than just kind of gazing at her (obviously I have been wandering around with a vacant glazed stare for the last three years folks).

My sense of smell seems to be coming back, it never completely went but was very subdued  - boiling peas mad me notice that, wow it made such a strong scent suddenly. I am so less irritable too, times when I KNOW I would have nagged the boys or got grumpy with someone come and pass with me just not feeling like that at all – is that just the stress lifting or is it true that, as I have read, that parathyroid disease actually affects your personality?

It is a bit overwhelming to be honest and I am sure partly it is because my hormones will be bouncing around too at the moment but I keep getting a little emotional. I have spent so long feeling like the life was being sucked out of me that to have these moments of clarity of thought and vision, to have the calmer me and the energy returning is too good to believe. Still early days, still tiring after a while, still problems with low calcium, still no guarantees this is going to work but today I am feeling good.

I am going to drive everybody insane (“Hey look, I can walk!’” “Wow, have you noticed how 3D everything is!” ” I don’t feel utterly exhausted and like I am dying today!”) but for now they will just have to put up with me. I just hope I never forget this feeling, never forget how the simpler things in life we so easily take for granted and how good it feel just to feel simply ‘ok’.

A rather cautious “wow”

Ok, apologies first for taking so long to post. To begin with it was because I felt so very rough and then life has just been madly busy so I’ve only just got round to having time to explain how things have been. Lets start from the beginning…

I was strangely not that nervous the night before the op, my Dad had booked us into a cheap hotel for the night so there was no long drive to London in the morning. We stopped for a meal on the way and watched the Arsenal game in the evening before turning in for the night. I slept well and we were up at 6 the next morning, threw some clothes on and made our way to the hospital.

Things could not have gone more smoothly and the staff could not have been nicer – what a perfect experience the whole thing was. I have been critical of the medical profession over the last couple of years and their shortcomings but this part was to be completely perfect. As soon as I arrived I was told I was first on the list so I was rushed through all the paperwork and in my hospital gown and those sexy surgical stockings before I knew it. All the staff were so warm and friendly, that makes so much difference to the whole experience doesn’t it?

I was shown to a ward of 4 beds, and given a bed next to the window and just had time to pack my things in the cupboard when I was taken down to theatre. That’s when the nerves suddenly kicked in. The anesthetist was joking around with me though and made me laugh, bless him. I had the first shot of whatever it is that makes you a bit head spinning and giggly and from then on I was fine not even minding having the camera up my nose and down the throat to check the vocal chords. Another shot of drugs and I was out…

I have vague memories of the recovery room but I don’t remember the trip back up to the ward, just gradually becoming aware that I was back. The pain wasn’t too bad and I felt no sickness, just drifting in and out of sleep. The nurses were a little concerned that my blood pressure was too low so were trying to get me to drink water and kept raising my feet up. I was feeling some tingling in my feet, hands and mouth which I knew meant low calcium so they got a doctor to come and give me some calcium. I was sick once, I’m sure more from the constant drinking of gallons of water and them raising the foot of my bed up to a mad angle to try and raise my blood pressure!

One of the surgeons came by to see how I was doing early in the afternoon and explained how they had actually found that I had hyperplasia and all four glands were greatly enlarged. They had taken out three, leaving one in the hope it would give  me a chance of living with that one functioning well enough to regulate my calcium. He was clear that this was far from a great outcome and that a simple parathyroid adenoma would have been easy to cure – this not so. I must admit to a few tears once he had gone. Partly relief the op was over, partly the fear that this was now far from over and I would not be fixed. He had talked about the option of removing the last gland and being on permanent medication for life if this did not work and I knew this was not a good outcome at all and is difficult to manage. I felt rather low.

So I stayed the night, gradually feeling better but hurting a bit more but the nurses were great with checking on me and keeping my pain meds up. The doctor came round in the morning again to see me and said blood tests were showing my calcium was a bit low but everything else was fine. He did another examination of my vocal chords with the old camera up the nose and down the throat – ew, not such a breeze this time while not off my head on anesthetic. I was sent home with a huge bottle of calcium tablets with instructions to take them when I got the tingles, which I was actually getting quite a lot of.

Ah, home again. Confused as to how I felt, brilliant that the op was over, brilliant that they had found the problem and had a go at correcting it. Yet worried that this was complicated, this might not work at all and I may be heading for a whole lot of more problems. I felt better after a bit of googling told me I had 80% chance of everything being fine – just one in five people in my position have a recurrence of the raised calcium or have the remaining gland not function well enough. I can live with those odds, they were better than I thought.

So to recovering. I had read up enough before hand to not be surprised by any of symptoms I had after the op but they were very unpleasant indeed for a while. I had awful anxiety, waves of panic that would come out of nowhere – I was told this was due to the low calcium and the rest of my hormones going a bit loopy. I was very dizzy and light headed, the anesthetic
from the operation can do this as well as the hormones shifts from the sudden change in calcium. I had terrible waves of tingling in my feet and hands and muscles where twitching all over my body – a very weird feeling. The doctor who discharged me at the hospital said my body was going to react like this, it was used to having large amounts of calcium and might react strongly but just take the calcium tablets and it will calm down.

Unfortunately I was struggling to get my appetite back and the calcium tablets on an empty stomach…well without being too graphic they upset my tummy a little. For a few days I felt very poorly and really down – this was hard work. My throat hurt a great deal, not surprising after having breathing tubes and two cameras stuck down it as well as the surgery itself – it felt like a very bad throat infection for several days. My sons were happily camping with their dad so I had time to recover quietly and my lovely family, friends and neighbours where brilliant. I had people to make me meals, keep me company and people knocking on the door with soup, cards and magazines to cheer me up…I’m very lucky indeed to have such good people around me and I didn’t take them for granted.

So I felt completely rubbish. And yet something was very different, I could think very much more clearly. Though I felt dizzy and tired, the clarity of thought was very obvious and very exciting. My ankles and feet were no longer swollen and when I walked there was hardly any bone pain left. As I got a bit stronger I noticed my walking was different too, I had lost the ‘waddle’ and was walking taller, more naturally. Wow.

From every day feeling terrible, I began to have some not so bad days thrown in. Little by little I began to feel stronger and the anxiety and tingles began to fade. My eyesight noticeably improved and I just felt what I can only describe as ‘lighter’ – both physically and emotionally.

I felt nervous going out for the first couple of times, I didn’t feel like I needed the stick any more but I took it folded up in my bag just in case as I popped to the corner shop. I felt dizzy and odd but excited that I could walk normally and oh so much quicker than before! I had to cut the second trip short when I suddenly felt awful in a supermarket but I knew I had pushed my luck a bit by staying out too long.

So it’s a cautious “wow”. Things are still far from perfect but I haven’t felt so good in years. I wake up feeling refreshed in the morning and I’m not exactly leaping out of bed but I have so much more energy. I have cleared out rooms and done more housework this week than I have in the past 6 months! I went to the shops yesterday and enjoyed just wandering around browsing, instead of just getting in and grabbing what I needed and getting out before I ran out of steam. Friends and family say they are starting to see the old me back, colour in my cheeks and a smile on my face. I can concentrate enough to watch programmes on TV and hold proper conversations with people – it’s slowly dawning on me how very ill I had become and how limited my life had grown.

I still have more energy to reclaim, I tire easily because I am over doing things now – I think the body has a way to go to catch up with the brain. I can feel my body is still adjusting, I feel odd sometimes and there are strange sensations and twitches now and again. My scar is healing nicely, you won’t even notice it soon. I go back to Hammersmith in a week or so to get some blood tests to see what is happening and I understand I will be monitored for quite a while until they feel everything is balancing itself out.

I feel it is almost bad luck to be excited at how many things have improved, it is early days and it is unknown what this last little parathyroid gland is going to do over the coming months or years. Yet today I feel good, tomorrow can take care of itself. Phew.

 

 

A very quick update

Just got back home. Guess who had to have something unusual? I had hyperplasia so 3.5 glands taken out, left the half in the neck. Told this makes it more complicated but 80% chance I’m  fixed and calcium and PTH back in normal range at the moment. Will blog all the gory details after I have recovered a bit – not feeling too bad! x

Wish Me Luck!

Boys gone to their dads, my little over night bag packed. So I am off to the smoke – my dad is picking me up in a while and we will drive to London and book into our hotel ready for the early start in the morning. I have to be on the ward by 6.45am but I have no idea when the actual operation will be during the day.

So it’s here we go my friends…wish me luck!!!!!!!

This time next week…

Yep, this time next week I will be having the operation.

Feeling excited and nervous and just a tiny bit odd that I’m so close to what I have been pressing for over the last couple of years. This has been a long time coming. As I make preparations for next week I have been thinking about the long road it has been to get here, the battles with doctors, the endless blood tests and hours spent hanging around in hospitals, tears of frustration shed after yet another doctor dismissed me, finding that dead patient in the next hospital bed in the middle of the night, the wasted days of being simply not well enough to do anything…

My friend came over last night and we were laughing about all the daft and annoying things that have happened – got to laugh in the end haven’t you? What isn’t funny though is that my kids were 7 and 9 when this all started and now they are the grand age of 10 and 12, there is a lot of growing up in those years and they had to do it with their single mum struggling to have the energy to keep on top of things. People tell me I didn’t deserve to have to wait this long for treatment but I’m old enough and ugly enough to cope – my boys didn’t deserve to not have the best of me for so long and at such an important time of their lives.

For a while there has been plans for ‘When Mum Is Better’ from all three of us, ‘When Mum Is Better’ we can go for days out again or lark around in the park, ‘When Mum Is Better’ they can have their bedroom redecorated (pirates are WAY too young now!) ‘When Mum Is Better’ she can drive again and not run out of energy within an hour, ‘When Mum is Better’ we can go away on a great big holiday!!!

Ah, almost there I keep telling them, almost there.

A month to go to the op

First of all thank you for all your messages, I’m touched by how many people take the time to get in contact. This is a lonely illness to have as you know nobody else who has it, no notes to compare or others experience to draw from. It is an illness that is hard to explain to others, an illness that does odd things to your body and makes you feel so unlike yourself that it is a relief when you make contact with other people in the same boat.

So here I am a month away from the op and it is slowly becoming a reality. Plans are being put in place to have the kids looked after for a while, lifts to London are booked and I’ve made sure the cats will be fed while I’m away!

I’ve been trying to put all this to the back of my mind and keep busy as dwelling on all the ifs and buts does no good to anyone and waiting is difficult enough. As the date draws closer my mind is on it more and I’ve slipped back to typing out the word parathyroid into my laptop and reading it all again. Sometimes that is satisfying as I look down the symptom lists and tick them all off (I’m not mad then, these weird symptoms are all down to this condition) or read happy messages from people cured who rave about the amazing trip back to their old self. Sometimes it makes me angry as I start to ponder how long I have felt so unwell and how illness has stripped so much from my life.

But for the first time it is making me feel a bit scared, I read of how awful some people have felt after the operation as their body struggles to get the hormones and calcium back on track again. I’m scared of waking up from the operation to be told they couldn’t find the rotten parathyroid and so I still have months ahead of me of fighting to be cured.

I’m scared that the real me has been buried under this illness for so long that I won’t recognise myself when cured. How much of this more forthright and out spoken person has come from the battle of facing a difficult illness and stupid doctors and how much is this the just the illness itself which is notorious for making people cranky? Am I really rather lazy and lacking in drive in life or is that just the creeping on off this illness over the years that as sapped the spark out of me – or was there never that go getting gene in me anyway? I haven’t had the urge to go out partying so much over the last ten years and am a real homebody, happy to potter around and spend time with close friends – I had assumed I was just settling down into approaching middle age. Is that just my make up or has the illness shaped how I have behaved over the last few years? If I were to get better would I suddenly feel like living a wilder life or will I continue to enjoy my quiet one?

I have been unwell for so long that I have lost sight of where the illness stops and where I begin. Maybe that shouldn’t be something to be scared of, maybe that should be just interesting to see what happens. Yet right now everything feels so uncertain that it all seems so unsettling and I fear this month is going to feel like a very long four weeks.

Counting down the days

Just a quick hello as I pop by.

Feel awful, truly bloody awful today. Maybe it is because we had a busy time last week with lots of end of term school events, maybe it’s just a random crappy parathyroid day. I made a decision not to go on about my symptoms to my nearest and dearest so can I have a whinge please?

I hurt all over, muscles and joints feel like I have the flu. Head is whizzy, hands and feet tingly, brain not functioning. Tearful and exhausted, fingers and ankles are swollen, back is killing me. Sat down on some grass yesterday at sports day and took 2 people to get me up as I didn’t have the strength in my weak old legs to get up again. Weight creeping up due to inactivity, house falling apart from lack of TLC and kids having to fend for themselves too much. Acid reflux, weeing for England, blurred vision and double vision worse…

Come round quickly August, I’ve have enough of this now!

Update – no news!

I haven’t been blogging much lately for a number of reasons. Firstly I feel a bit worse, the fatigue is maddening and making day to day life troublesome. I am getting help getting the kids to school and with the general ferrying around but all the normal household and parent stuff is still down to me alone – treading water here!

Secondly there seems little to say at the moment. I have my date for the op so no need to be venting my frustration on here at any lack of progress or stupid delays. It’s just about counting down the days right now. I am allowing myself to make plans, to imagine how post op might be and what I can do again once fixed and back to some normality. I had planned to ignore those thoughts as a kind of self protection in case the op didn’t work but I am only human. That notorious light at the end of the tunnel is getting bigger and no harm in a bit of positive thinking now is there?!

I have been keeping busy with some bits of work on the better days and it’s been good to think of other things for a change now the ‘battle’ has temporarily ceased.

However, I have started the ball rolling with a formal complaint to my local hospital about my treatment there. I have no appetite for a legal battle and seek no compensation but I don’t want someone else to suffer the same mistakes in care that I experienced. In my mind it is very simple:

• The Endo there insisted my symptoms had no connection with any endocrinological condition that I had been diagnosed with – I have that in writing from him.
• He had diagnosed me with Primary Hyperparathyroidism and then did nothing to treat it apart from faff around with vit D for a while – and he made a mess of that. National guidelines are for a patient to have DEXA scans to check for bone damage and urine and blood tests to check for kidney damage plus scans to see if the problem parathyroid could be located – he did not arrange to do any of these.
• The guidelines are also very clear that any patient under 50 should be operated on – he told me it wouldn’t be in my interest to have an operation as the risks were ‘too high that it would make me permanently hypocalcemic’.
• His insistence that my symptoms (which are textbook for this condition) were not linked to having Primary Hyperparathyroidism resulted in unnecessary neurological tests and my GP’s conclusion that it must be down to ‘depression or stress’ and therefore caused a considerable delay in my treatment.

Am I right to complain? This is a man who has trained to be an endocrinologist and should know how to treat my illness – if I can google it and work it out for myself then it should not be beyond him to get it right. He should be up to date on national guidelines on treatment and there is no excuse for the mistakes – I have very clear test results and symptoms, I am a very straightforward case.

Why complain? As I say, this is to stop this happening again to the next patient – maybe someone who doesn’t waste too many hours on their computer looking things up (my GP’s comment) and accepts what they are being told because a doctor couldn’t be that wrong.

I don’t relish it, I’m not one for confrontations and I have no wish to get somebody into trouble – but what other choice have I got?

Thank you all again for the messages and comments you send, forgive me for not always replying or taking forever to get back to you. I do read them all and it is good to hear all your news and progress too – my fuzzy head stops me from keeping on top of basic day to day stuff so sometimes I just don’t get round  to replying or simply forget you got in touch – huge apologies.

Chin up everyone still on their path to treatment and cure – we’ll get there xx

Wow

Well, well, well…I have an operation date my friends.

After a short campaign of bothering the hospital with constant requests for a date, an email popped into my inbox this afternoon and there it was – 25th August 2011.

Three more months to wait (remember back at the beginning of the year when the Endo declared I would be done within a matter of weeks?!) and then I’ll be under the knife. Wow, seems weird to actually have a date now after all this time. It suits me quite well falling in the middle of the school holidays, my ex has already booked the time off work and will have the boys staying with him for a few days. It will much easier without having to worry about getting school uniforms, packed lunches and homework done.

So now the battle to get an operation is won, it is time to now start wondering what the operation and the following weeks will hold for me. I don’t fear the op, I’m not squeamish or bothered by the thought of it…just worried that he won’t find the offending little parathyroid when he goes delving about in there. I’m not worried that it is the slightly old fashioned larger operation because they can’t find it on the imaging – quite happy for him to get in there and have a good look! I am confident have one of the best and most experienced surgeons available in the country so I know the chances of a good outcome are very good.

My last labs were calcium 2.65 (about 10.6 in USA) and PTH 25 (well over 200 in USA) – it states on the Norman website that anything over PTH 200 shows it has been there over 10 years or so – I don’t know if that’s true or not, maybe I’ll never know. Symptoms are still bad but stable for now, some rough days but still able to function (well this new kind of ‘function’ that I have adapted to which isn’t exactly extensive!!)

I simply can’t remember the last time I felt ok and I hardly dare to dream that this may almost be over.

No News

Since I got the great news I was on the waiting list, of course I’ve been eager to get a date for the op. I began calling and emailing the surgeon’s secretary to try to find out how long the waiting list was and when I would get a confirmed date. No response for ages then this week, instead of the usual answer phone message, she actually answered the phone. She said her best guess was July but she would try and tie down an exact date from the surgeon and get back to me. Not heard anything since so will resume my email and telephone campaign until they do – latest plan is to annoy them into treating me!

I’ve been feeling awful, pain is worse and walking any distance is hard. By the evening my hips and knees ache so much that I simply can’t get comfortable. Sleeping seems not so bad at the moment, less waking in the night thank goodness but the foggy head is driving me crazy. Trying to work, I sent one client 4 wrong attachments on emails before I could get the right one and she wasn’t over impressed. I found a bunch of stupid mistakes I did a few months ago that have also lost me work revenue – all the mistakes are just par for the course at the moment. I completely forgot to do one job for a client last month – just forgot, how dopey – can’t keep my daft head together at all, working is difficult.

“You look do WELL!” called out one of the mum’s at the school gates, I smiled and thanked her. Inside I wanted to scream. What is the point of saying actually I feel crap, my brain has turned to jelly, each step I take tires me further and my legs ache so much…but people just want you well.

People only try to be nice (it’s no better when people say you look so tired on really bad days, I get grumpy at that too – no leasing me!) but the ‘you look so well’ comments can be so frustrating, so upsetting when you feel so NOT very well and it feels like nobody will ever understand the extent of how much effort it takes to get through the morning.

All this aside, my sons are just wonderful. We have been having such a good few weeks, enjoying the sunshine and the house is full of good humour and laughter at the moment (they just tease me out of my grumpiness). They are growing up fast, starting to spread their wings just a little and are such good company.

Take care all my parathyroid buddies, amazed to see how many people are reading this blog now – here’s hoping you all find a way to get treated really soon xxx