So here we are at the end of another month, it has been 3 months since my operation now (28th May) and in some ways it seems a very long time ago....a lot of things have happened.
I get asked a lot now how I am feeling, I think the best answer is "about as good as I did before the operation". What I mean by that is I can go out and walk for 2 miles without needing a respirator or a sleep, my fitness is gradually getting better and most of my supplementary symptoms have passed. I still couldn't run down the road, but I could walk quite fast :-)
I still have the tingly/numb sensation in my foot, which although annoying I am used to now and I hope it will pass without any further visits to the doctors. We'll see....
Also you may remember Diabetes Insipidus (DI) from an earlier post, and me taking Desmopressin to alleviate the symptoms. Well, for some time I have been taking a lower dose than recommended and this has been working fine. I decided last weekend to stop taking the tablets altogether to see what happened, expecting the excessive night-time drinking and wee-ing to resume, but it didn't. And as of last night, it still hasn't. Now the Endocrine consultant Dr. Kar said that I had "transient" DI which I guess by the literal definition of the word means it can come and go, and right now it seems to have gone. Which is brilliant because I was not keen on taking those tablets, but we'll have to wait and see. It kind of makes up for having to take the Hydrocortisone tablets forever I suppose.
I have another appointment with Dr. Kar next week to discuss the way forward, he seems pretty positive, but I am hoping he can sort out my Testosterone levels, as I need my fitness and muscle levels to increase, and I think this will help. He said all my other hormone levels are "stable", hopefully I'll find out whether that is stable=good or stable=inadequate next week.
I return to work full time next week too, so most parts of my life are returning to normal, and after 3 months it is not a moment too soon. This doesn't include being able to drive yet, which is really getting on my wick....hurry up the DVLA!!
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Friday 30 August 2013
Friday 23 August 2013
August 2013 - the results are in, already
I'm not sure what happened to "the results will be in during the next couple of weeks, and we'll invite you back in to see the consultant", in fact I had a phone call late yesterday afternoon with the results of my 'Short Synacthen Test'.
I could tell from the tone of Jean, the Nurse Specialist, who called me that it was not good news. I was told that they look for a score of 500 in terms of the amount of Cortisol that is produced in the test - I'm not sure what measurement '500' is. My score was 73, i.e. not good enough by a mile.
What this means is that I will need to take Hydrocortisone steroid tablets forever to replace what my body cannot produce. It also means I will need to carry a blue steroid card in my wallet (to inform emergency services staff I'm on steroids) and also learn how to inject myself with emergency Hydrocortisone in case I need to. In the normal course of events I just take the tablets and everything is hunky dory, if I get ill, then I double my tablet dose. If however I get really ill and I am being sick and cannot keep my tablets down (as happened a few weeks ago) I need to get an injection into me to make sure I get my Hydrocortisone dose.
I have been invited to an 'education day' at the QA Hospital where they talk me through what all this means in practice, and show me how to do the injection.
It is very disappointing to learn that my body is permanently defective in this way, particularly having been through all that I have been through, but as I said in my last blog post, I was kind of thinking the worse, so my fears have been confirmed. My theory was that if my body could have produced the burst of Cortisol that I needed, I wouldn't have got so ill so quickly those few weeks ago....so logic suggested that something may be amiss.
The next step is to understand whether my Pituitary gland is able to produce any messages at all, and whether my other hormones are screwed up as well. Looks like I'd better get used to a regime of tablet taking - but all things considered, it could be a lot worse if all I have to do is take tablets.
73 out of 500, I never was very good at tests :-(
I could tell from the tone of Jean, the Nurse Specialist, who called me that it was not good news. I was told that they look for a score of 500 in terms of the amount of Cortisol that is produced in the test - I'm not sure what measurement '500' is. My score was 73, i.e. not good enough by a mile.
What this means is that I will need to take Hydrocortisone steroid tablets forever to replace what my body cannot produce. It also means I will need to carry a blue steroid card in my wallet (to inform emergency services staff I'm on steroids) and also learn how to inject myself with emergency Hydrocortisone in case I need to. In the normal course of events I just take the tablets and everything is hunky dory, if I get ill, then I double my tablet dose. If however I get really ill and I am being sick and cannot keep my tablets down (as happened a few weeks ago) I need to get an injection into me to make sure I get my Hydrocortisone dose.
I have been invited to an 'education day' at the QA Hospital where they talk me through what all this means in practice, and show me how to do the injection.
It is very disappointing to learn that my body is permanently defective in this way, particularly having been through all that I have been through, but as I said in my last blog post, I was kind of thinking the worse, so my fears have been confirmed. My theory was that if my body could have produced the burst of Cortisol that I needed, I wouldn't have got so ill so quickly those few weeks ago....so logic suggested that something may be amiss.
The next step is to understand whether my Pituitary gland is able to produce any messages at all, and whether my other hormones are screwed up as well. Looks like I'd better get used to a regime of tablet taking - but all things considered, it could be a lot worse if all I have to do is take tablets.
73 out of 500, I never was very good at tests :-(
Tuesday 20 August 2013
August 2013 - the 'Test'
So finally the big day arrived, the 'Short Synacthen Test'. This meant that despite the high importance placed on me taking Hydorcortisone tablets regularly, I needed to stop taking the tablets 24 hours before the test. A whole 24 hours without my lifeblood steroid tablets, but how did I feel first thing this morning? Well, I had a stonking headache and felt a bit lacklustre but otherwise no ill effects. But I was very nervous about the test, principally about having a Cannula jammed into my arm.
So at 10:30 sharp we turned up and was seen by the Endocrine nurse specialist, who weighs me and takes my blood pressure and I give a urine sample, all fairly straightforward so far. She then explains what happens during the test, Cannula, blood sample, Synacthen injection in the bum cheek, blood sample 30 mins later then another blood sample 30 mins later, Cannula out....go home.
So in the event, the nurse whacks the Cannula (or "Venflon" as she referred to it) into the vein without drama, and there I am with this contraption dangling from my arm, a long tube to which she attaches a syringe to draw the blood from, loads of it - in between blood samples she injects saline solution into the tube, and my arm, to flush the tube out of blood to stop it blocking up, lovely. Then the injection in the bum and then a 5 minute lay down to make sure I don't suffer any ill effects from the synthetic drug, designed to simulate the message from my Pituitary to my Adrenal glands to produce loads of Cortisol. 5 minutes later, no ill effects and we're sent off to the waiting room with a lovely cup of coffee (and tea for Deb).
30 minutes later, I get called back for the second blood sample, then again 30 minutes later. Before I know it the Cannula is out and we are on our way.
The results should be with us in 1 to 2 weeks, the nurse discusses the results with Dr. Kar the consultant then he will likely call me in for an appointment to discuss, who knows what the results will be. The nurse said it is not unknown for them to repeat the Synacthen test several months later, if the first test shows I'm producing no Cortisol, then it isn't impossible that it could take some time for my Pituitary to come back online. But I'll have to wait and see.
The nurse took loads of blood and has asked for all sorts of tests to be carried out, so I should also get a snapshot picture of where all my other hormones are at too.
So, was it worth getting all nervous about? No, not really, it was all over almost before it begun....I didn't feel any ill effects and my arm didn't fall off having had the Cannula in it. The key piece of information, is the bit I won't know for a while and I'd love the result to be positive. But for the time being, I am leaning towards a negative result, then I can only be pleasantly surprised if it is good news. Roll on the results!
So at 10:30 sharp we turned up and was seen by the Endocrine nurse specialist, who weighs me and takes my blood pressure and I give a urine sample, all fairly straightforward so far. She then explains what happens during the test, Cannula, blood sample, Synacthen injection in the bum cheek, blood sample 30 mins later then another blood sample 30 mins later, Cannula out....go home.
So in the event, the nurse whacks the Cannula (or "Venflon" as she referred to it) into the vein without drama, and there I am with this contraption dangling from my arm, a long tube to which she attaches a syringe to draw the blood from, loads of it - in between blood samples she injects saline solution into the tube, and my arm, to flush the tube out of blood to stop it blocking up, lovely. Then the injection in the bum and then a 5 minute lay down to make sure I don't suffer any ill effects from the synthetic drug, designed to simulate the message from my Pituitary to my Adrenal glands to produce loads of Cortisol. 5 minutes later, no ill effects and we're sent off to the waiting room with a lovely cup of coffee (and tea for Deb).
30 minutes later, I get called back for the second blood sample, then again 30 minutes later. Before I know it the Cannula is out and we are on our way.
The results should be with us in 1 to 2 weeks, the nurse discusses the results with Dr. Kar the consultant then he will likely call me in for an appointment to discuss, who knows what the results will be. The nurse said it is not unknown for them to repeat the Synacthen test several months later, if the first test shows I'm producing no Cortisol, then it isn't impossible that it could take some time for my Pituitary to come back online. But I'll have to wait and see.
The nurse took loads of blood and has asked for all sorts of tests to be carried out, so I should also get a snapshot picture of where all my other hormones are at too.
So, was it worth getting all nervous about? No, not really, it was all over almost before it begun....I didn't feel any ill effects and my arm didn't fall off having had the Cannula in it. The key piece of information, is the bit I won't know for a while and I'd love the result to be positive. But for the time being, I am leaning towards a negative result, then I can only be pleasantly surprised if it is good news. Roll on the results!
Thursday 15 August 2013
August 2013 - great news on the back front!
I cannot tell you what a relief this is, but Southampton Neuro unit have just phoned up with the results of my MRI Scan. I have a completely healthy back, in fact very healthy for a man of my age! This means I DON'T have Cauda Equina Syndrome nor any slipped discs, I just have some slightly annoyed nerves which will probably cure themselves of their own accord.
I am one happy bunny I can tell you (jumps up and down whooping), good news for a change!
I am one happy bunny I can tell you (jumps up and down whooping), good news for a change!
Sunday 11 August 2013
August 2013 - things calming down
It has been 9 days since my last update, and that can only mean one thing....I've got less to say! I am definitely feeling 'on the mend' now, Deb and I went out for a brisk 2 mile walk today in the warm sun and I didn't feel the need for an hours nap afterwards, that is not to say that unscheduled naps don't occur because they do, but my stamina is gradually returning. I'm getting a good nights sleep most nights (our dog isn't very well right now, so there are some unscheduled interruptions) and my weight has evened out at just over 10 stone....still three quarters of a stone lighter than I was a couple of months ago.
My penchant for fresh fruit is continuing, had a satsuma today, some more melon at the end of last week, and there are some nectarines ripening in the fruit bowl....I didn't even know where the fruit bowl was that long ago. Very weird....
My bad back/numb foot continues, it hasn't got any worse although maybe slightly better, but I am still awaiting an appointment to follow up the MRI scan. From a conversation I had with the consultants secretary, it may be some weeks before this appointment comes through. Annoying, but I am learning to live with the odd feeling foot, but sitting down for any length of time is still uncomfortable (numb and at the same time painful Coccyx) and can lead to me fidgeting around. Which isn't very handy when you are trying to type on a laptop keyboard and standing up!
Also this last week I have returned to work, albeit on a part time basis. I'll be part time for the next 3 weeks to ease me back in gently. It was quite hard last week getting my brain in gear, and took some thinking sometimes to remember where I was with a particular project. I know things will start to come flooding back to me as I get back into the swing of things - I must make an effort to get into the office in Pompey some time soon, if for no other reason than to pay my lottery money!
I really need my driving licence back now, it is getting very inconvenient. My Endocrinologist sent me for an eyesight 'visual field test' which showed that my fields had returned to normal. Before the operation, there were noticeable areas at the edge of my visual field that were obscured, more than I realised. But now the tumour has been removed and the optic nerve is un-pinched, the vision has returned. I had an appointment come through from the DVLA to attend a local optician to do another field test, which according to the optician I passed with flying colours, seeing 117 out of a possible 120 pinpoints of light. He said my test results, along with a few other tests he did, would not be a problem with the DVLA. So I am hoping that once the DVLA have assessed the feedback from both of the above tests, they will conclude that I am safe to drive once again.....as safe as I ever was anyway!!
I still have my big Synacthen test to come on the 20th August, which is now only just over a week away, still not looking forward to it, but really wanting the results and then being able to move on to balancing all my other hormones. Not long to wait now hopefully.
So it seems things are slowly returning to normal, just need my back to resolve itself, the DVLA to give me my licence back, and my hormones balanced. Simples :-)
My penchant for fresh fruit is continuing, had a satsuma today, some more melon at the end of last week, and there are some nectarines ripening in the fruit bowl....I didn't even know where the fruit bowl was that long ago. Very weird....
My bad back/numb foot continues, it hasn't got any worse although maybe slightly better, but I am still awaiting an appointment to follow up the MRI scan. From a conversation I had with the consultants secretary, it may be some weeks before this appointment comes through. Annoying, but I am learning to live with the odd feeling foot, but sitting down for any length of time is still uncomfortable (numb and at the same time painful Coccyx) and can lead to me fidgeting around. Which isn't very handy when you are trying to type on a laptop keyboard and standing up!
Also this last week I have returned to work, albeit on a part time basis. I'll be part time for the next 3 weeks to ease me back in gently. It was quite hard last week getting my brain in gear, and took some thinking sometimes to remember where I was with a particular project. I know things will start to come flooding back to me as I get back into the swing of things - I must make an effort to get into the office in Pompey some time soon, if for no other reason than to pay my lottery money!
I really need my driving licence back now, it is getting very inconvenient. My Endocrinologist sent me for an eyesight 'visual field test' which showed that my fields had returned to normal. Before the operation, there were noticeable areas at the edge of my visual field that were obscured, more than I realised. But now the tumour has been removed and the optic nerve is un-pinched, the vision has returned. I had an appointment come through from the DVLA to attend a local optician to do another field test, which according to the optician I passed with flying colours, seeing 117 out of a possible 120 pinpoints of light. He said my test results, along with a few other tests he did, would not be a problem with the DVLA. So I am hoping that once the DVLA have assessed the feedback from both of the above tests, they will conclude that I am safe to drive once again.....as safe as I ever was anyway!!
I still have my big Synacthen test to come on the 20th August, which is now only just over a week away, still not looking forward to it, but really wanting the results and then being able to move on to balancing all my other hormones. Not long to wait now hopefully.
So it seems things are slowly returning to normal, just need my back to resolve itself, the DVLA to give me my licence back, and my hormones balanced. Simples :-)
Friday 2 August 2013
August 2013 - back to work, and fruit!
Well, finally I feel well enough to make it back to work, it has been a long time coming....much longer than planned. Hopefully everything will slot back into place over the coming weeks and work won't be the horrible shock I'm expecting. Getting back into a regimented way of life again probably will be hard when I've spent weeks doing my own thing and not really thinking much about anything else other than my own health and my immediate family. It will be tricky fitting in visits to see my Dad in the hospital as well as working again, but needs must. I really need my driving licence back soon.
I trundled over to see my Dad yesterday on the bus whilst Deb was at work - I can't always rely on her to take me everywhere. We are quite lucky where we live because there is a bus that goes almost past our front door to Pompey or Southampton and another one that is a 5 minute walk away that goes right past the Gosport War Memorial Hospital where Dad is. So I thought I would try it out, the journey took about 35 minutes there, and 45-50 on the way back but did cost the princely sum of £5.60 which is the same cost to go all the way to Pompey. A bit steep I thought, but it does drop you right outside the hospital. The bus was hot and stuffy and surprisingly busy, but it did the trick. Me using public transport, that doesn't happen very often.
And fruit, there's a weird thing. For most of my life I have never been a big fruit eater, somehow I've always found fruit too much like hard work, unless the juice comes ready prepared in a carton. But since I came out of hospital the second time, I have had such a yearning for sweet juicy fruit. Today I've had several lovely plums (I know, double entendres galore) that Deb found on the cheap in the local fruiterer, and also 'ripe' for consumption is a Galia melon and several Satsumas (had a gorgeous honeydew melon last week)...they may last me the weekend. I just can't get enough of the stuff, I can only assume my body is craving sweet things, as Coca Cola, Orange Squash and Lucozade is also going down by the bucket-load. Now I've always had a sweet tooth, but right now it is as sweet as it has ever been, and I can only assume that is something to do with what is going on with my body right now. The sugary drinks obviously not so good, but I've always wanted to get more into fruit....we'll see how long it lasts, probably not long knowing me.
Went back to the doctor today, who was happy with the fading of my blood-spot rash on my legs (now more brown spots than red) and my blood coagulation test was fine although my haemoglobin level is down a bit because of the blood I've lost into my skin - it has been low (albeit rising slowly) since my operation but this apparently is normal in my situation.
So there's the first update in August, now 9 and a half weeks since my operation and 6 weeks since I came out of hospital for the second time. And I've even blogged about my experience, whatever next!
I trundled over to see my Dad yesterday on the bus whilst Deb was at work - I can't always rely on her to take me everywhere. We are quite lucky where we live because there is a bus that goes almost past our front door to Pompey or Southampton and another one that is a 5 minute walk away that goes right past the Gosport War Memorial Hospital where Dad is. So I thought I would try it out, the journey took about 35 minutes there, and 45-50 on the way back but did cost the princely sum of £5.60 which is the same cost to go all the way to Pompey. A bit steep I thought, but it does drop you right outside the hospital. The bus was hot and stuffy and surprisingly busy, but it did the trick. Me using public transport, that doesn't happen very often.
And fruit, there's a weird thing. For most of my life I have never been a big fruit eater, somehow I've always found fruit too much like hard work, unless the juice comes ready prepared in a carton. But since I came out of hospital the second time, I have had such a yearning for sweet juicy fruit. Today I've had several lovely plums (I know, double entendres galore) that Deb found on the cheap in the local fruiterer, and also 'ripe' for consumption is a Galia melon and several Satsumas (had a gorgeous honeydew melon last week)...they may last me the weekend. I just can't get enough of the stuff, I can only assume my body is craving sweet things, as Coca Cola, Orange Squash and Lucozade is also going down by the bucket-load. Now I've always had a sweet tooth, but right now it is as sweet as it has ever been, and I can only assume that is something to do with what is going on with my body right now. The sugary drinks obviously not so good, but I've always wanted to get more into fruit....we'll see how long it lasts, probably not long knowing me.
Went back to the doctor today, who was happy with the fading of my blood-spot rash on my legs (now more brown spots than red) and my blood coagulation test was fine although my haemoglobin level is down a bit because of the blood I've lost into my skin - it has been low (albeit rising slowly) since my operation but this apparently is normal in my situation.
So there's the first update in August, now 9 and a half weeks since my operation and 6 weeks since I came out of hospital for the second time. And I've even blogged about my experience, whatever next!
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