h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

So, saw Dr yesterday.
Got to hospital early, then Dr was running late, so was a hour and a half later than it sould have been
had the ECG first, weight, BP etc.

Dr was very througher in checking me over.

its a 4.5 CM annurism in the aorta, CT or MRI scan to come to see how far it goes, and if its abdominal as well as thoraxic.

Told I can't do strenerous exercise, so no mor erowing machines, no running, no weights over 20 KG.

ins brillient.

no idea to cause; I should have high BP to get this, I've never had a high BP (to anyones knowledge), and even wheilst the Dr examined me, she at one point got concerned; my BP was so low

so no clue as to the cause of it no treatment as such, unless it gets another centimeter bigger, in which case I get excisting opperations to happen - betablockers would be normal treatment; but as I don't have a high BP to treat, that doesn't make any sense, may consider using angiotensin blockers/antagnists, err, which I can't quite recall what they do, but I think they might interfer with my adrenals, as I'm sure its the angiotensyn systems which regulate aldosterone productions from the adrenals (regulates sodium and potassium and BP that way/route)

Utterly exausted, no slep in past three nights, just a few naps some afternoons, though I couldn't nape this afternoon as palpiations/internal vibrations too disturbing, so I got up

neuropathy getting worse in finger,s which is odd, as its ment to get better (which it did), after end of chemotherapy, so I'm thinking maybe its not neuropathy from chemo at all, but due to untreated penitious anemia, they diagnosied back in feb/March 2015, but refused to treat; still waiting for results of new test for penitious anemia, they did last wednesday. I assume they'll not bother telling me the results, so guess I'll phone them at some point this week.
I think if the test comes back positive for penitious anemia, and thereby, showing I've had it, untreated for over two years, I'll get a solicitor involved; the neurological dammage, such as neuropathys from untreated penitious anema, is or can be, perminant, which is nice. (plus it may ahve ment that the neuropathy I got during chemo wasn't casued by the chemo drugs; hence I had one drug less for half my chemo than I should have had ).

feeeling really very annoyed and peed off really, witih everything now.


Went to gym this mroning, explained to trainer what the Dr said about reducing intensity of training... so I did forty minutes walking with incline and varied speed, on the treadmill... enough to get a sweat by the end and raise heart/breathing rate, but its not decent strength on the rowing machine exercise, or going hard on the cross trainer etc.... - and i've no real idea how much is too much, or too strenerous.... maybe I need a heart monitor wrist thing... - only of course I cna't use them as I can't see the display, and to my knowledge there isn't an accessible one about really as a wearable type watch device

Tried to nap this afternoon but coudln't.... and now thinking about dinner... probably for the omeda 3 and 6.... I think we've got macceral err, however its spent in the freezer

popped out for a walk last night, for something to do, and briefly popped into a nearby pub, for a pint... well, two

onwards and upwards, - do I get a prize if I aquire enough diseases/conditions? - enlarged aorta is a bit common though... compared to my useual range of mor rare conditions - maybe I need a trip to an exotic location and pick up some really obscure tropical disease, just for fun.... - that oughta really play havvock with my steroids dosing asides anything else
so tired... <sleepy. and unable to sleep...

Just sitting here not knowing what to say



Mol

Don't you dare be trying to get out of meeting me this summer!

I do seem to be doing a bit poorly health wise the past few years... I'm sure its just a pasing phase.... I hope so... just getting a bit more of my so-called 'normal' back woudl be nice.... though that seems more and more distant as time goes on still need to push endocrine more, if I just had that bit more energy I think I'd switch now to a differnt hospital, but, taht's just such a difficult thing when I've so litle concentration, mental or physical energy/endurance and of course no guarentee that it'd produce any better treatment or understanding by the Drs and could indeed thereby setback treatment, - may be worth me waiting until I finish teh growth hormone trial, and get that fixed and know I've met the criteria, to get funding for it, so that could carry on indefinately if/as needed - then I could move the testosterone injections from the hospital here, to the local GP surgery (I really would prefer not too, as the nurses there will do a terrible job of IM injections, but that only means it might hurt a lot, which I guess doesn't really matter), then I could consider getting the referal to a differnt hospital, for the remainder of the 'treatment', and try get a reassessment of the hormonels done, by a differnt hospital, who might do things differntly, or better, or at least more accurately and thinkingly... the heart thing, no idea, could just be anything; may be congenital, from ten fifteen years ago when I smoked, from a period when I had high BP but didn't know, possibly even a side effect from the crisis last May or.... well, just 'luck' they happened to find it now, or... some other process going on, or related somehow to the hormone stuff.... - likewide something lik the penitious anemia, if I have got that, and get the IM B12 injections, I might suddenly find its 'fixed' or helped with a lot of remaining problems, memory, fatigue, energy, concentration, neuropathy, the cold hands/feet, the temperature intollerance and abnormalities, the 'heart palpitations' can be B12 related, etc, - maybe even fix some of the weird mental stuff, like the feeling distant, disconnected from both the world and my own body, I guess might even be linked to B12, as it can effect neurones I think all over the body, pressure temp sensory neurones etc, balance, coordination ones (I guess maybe) in the meantime, at least I've got the whole losing weight thing for something to do, and gym even if as a reduced thing, due to the heart nonsense - everyone has to die of soemthing though... maybe I should set up a sweepstak so everyone can place a bet on what I eventually carp it from

Probably something stupid and mundane... A friend of mine from that site nearly died from a novocaine overdose combined with a latex reaction because her dentist didn't read the allergy/medical history paper. If her husband hadn't come home when he did, she would've<yikes

Knowing you, my dear friend, you will hang in there and annoy yet another team of for many years to come

with that! I'm sure you will succeed!



PS: I think you have enough on your plate as it is, of course. Why don't you leave some of the fancier stuff for others?

Drs here at least or at least the ones I see, can't calculate the dosage of the main meds they script every day, and don't know the interactions that one ought not to do... I spent half of 2015 taking antibiotics that have reallly bad side efects in combination with the steroids I take (at the time) each day then I'm scripted a differnt steroids by a Dr who can't do his four times table, so I get put on 6 MG not 5 MG to start, then a differnt Dr in same dept, doesn't realise fluid retention is a steroid side effect - two days after nearly dieing in a crisis, last may, I had to basically shout at a nurse/ward nurse discharging me from hospital, as she didn't know what any of the meds I was on were, and kept telling me the totally wrong dosage of each med I was taking until basically I think she caved in, and just walked out on me - personally I just wanted to get home so I could wash, they'd left me in bed, at the hospital after the crisis and nearly dieing, withiout giving me oppertunity to wash, after constant requests; I don't think I was being over picky asking to wash; I was covered in my own dried on vomit afterall but apparently taht's fine to leave a patient covered in their own vomit. ,sigh>

Mind, i still think the best, was the nurse, who told me "you shouldn't pick your nose", when I complained of constant nose bleeds, just before I was discahrged...... next time I reentered that hospital was the nose bleeds resolving into a brain hemoridge that left me blind in my second eye... - I'd have thought the bleeding from nose, plus eye sockets and ears oughta have triggered some kind of recognition as a fairly serious thing, happening in a patient on a head trauma ward but, apparently not I'm not bitter, I'm just... confused at such incompetance repeated constantly and not just ignorance of complicated specicifical stuff, or knowledge, just ... ignormant of waht I'd call common sense mostly I just seem to get stuck with the stupid Drs who can't think, and I've even been thinking that to myself when seeing a Dr a few days after I've had one of my two brain hemoridges, I seemed to be thinkgin clearer than they were, even whilst I couldn't do 'word recall' properly due to the stroke sideeffects
I'm not entirely sure if this 'not feeling', and 'not caring' thing I get now is just a side effet of meds, or treatment/ailments, or just a recognition in my subconscious that , no matter what I say, to whichever Dr, and whatever the facts and blood results etc., point too, the net result is, just random stuff that makes no sense in context, everything that happens is entirely independant of everything else, so I figure there isn't any point no longer worrying, as seemingly nothing I do can make any differnce... . .

I'm still thinking its well impressive, how I had to pay my GP £25, for a letter to the gym, which told them I was fit to do any exercise; whilst he, and the hospital, had the results of the cardiac scan, showing I wasn't at all - I wonder how much my efforts at the gym the past few months, on teh back of that utterl incorrect GP letter, ahve managed to stretch and extend my 4.5 annurism to a size nearer the critical 5.5 - 6 CM dilation guess I'll find out when I get the MRI or CT for cardiology to assess the spread of the annurism, and see if its thorax alone or in the abdomin too , I assume they'll reassess its size then and see what if any treatment is or isn't needed... I realy don't much fancy the idea of an opperation; I don't credit the cooperation of the hospital departments sufficiently, for them to understand my necessiity to have IV drip of constant steorid during an opperation for a non endocrine related thing, due to the secondary adrenal insufficiency, and suspect a high chance of negledgence at that point being a likely source of potential final curtainness.... (Ill stash in a supply of meds with me, but I cna't exactly pop tablets whilst I'm under a general anasetic)

Nethertheless.... off the final circuit training tomorrow; its the end of the 12 week die/nutrition thing I've been attending, although I've no idea if the circuit training represents something more exertion than I'm ment to do now, or not... I've tried reading up on what is, and what isn't too much, bt the information is fabulusuly contradictory.... - reduce risk of rupture, by ... loosing weight, exerciing, eating healthy, blah blah blah.... but, don't trigger an annurisimal rupture by... exercising... OK... do do X, but don't do X. as clear as ... somethign really not very clear ,erm> hmm.... is sex too much exertion?! nononononono nah... obiously not... surely...
May try pop into endocrine nurses tomorrow, at hospital, if we're there a bit earlyk and they're about, to see if there are any of the bloods back from last wednesday (morning testosterone, plus the B12 stuff, and TBC and standard stuff...)
Must be bed time soon, not slept since... err... nope I cna't recal wehn... a couple days back I think ago... - naturally I'm just starting to wake up now, as the steroids have worn off mostly, for the day I've injcted my growth hormone though, and taken melatonin, so I guess it oughta be bed, after soem more fennel tea - this new Turkish fennel tea we're trying is goregous..... and about a quid cheaper than the stuff we used to buy

As much as I hate to hear of even further medical issues, I am somewhat amused by the idea of a team of paralegals (or whatever you call solicitors assistants over there) delving into years of your posts in your journal here which, while quite bizarre and often indecipherable, provide a thorough record of trials and tribulations of medical malpractice and incompetency you've endured if you do decide to finally resort to legal action.

Oh, they're going to have so much fun learning about you. From Bee to your epic trips to Lush, it should be such a wonderful change from typical torts and other boring law terms.

I may have to go through the valts myself and disect any relivent information and details out of the badly written scribblings of my battered (and deep fried) frazled remians of my central processing unit visa my brain - afterall I'd not want a counter claim made by my solicitors, against me, for mental torture

oo! got a 'blue envelope' through from hospital today; the blue envelopes on the doorstep always herold the arrival of an appointment... this one I think is for the next endocrine clinic, though its possibly for a testosterone injection; they dont' of course, actually say what the appointment is, that would be too ing useful - unless they're for a CT scan, MRI or other investigative process, in which case they tell you which process, Il.E., for an MRI, or a DXI scan, or a CT, etc, but then don't tell you for which department its for, or for which specialist, or for which Dr, which is also very useful; heck, as they don't tell you who the scan/procedure is for, you don't know which scanner unit to turn up to at the hospital - yes, the 'styem' works that effeciently here.....

letters with phrases such as ; "your consultant has requested..... a MRI/CT/ultrasound/;' etc, are fabulusly wonderous to get, when you've got... 1, 2, 3, no, now at least 4 consultants at teh hospital, 5, and 6, if I include neurosurgery and neurology, although those final two deparetments whiped me off their records the day after I had the last hemoridge

Sorry to hear you've got another thing to add to your list...

As ever in my amateur opinion, it sounds like it is another side effect of cortisol overdose - if cortisol acts to reduce blood pressure in the event of a stress by relaxing the arteries, and you're not under such stress and have low blood pressure, your arteries might not dilate in a smooth way...

I'll certainly be mentioning the heart thing, at the next endo ap.... err... July I think that is - the excess mortality seen with panhypopituitarism is due to heart problems, though normally that is athlorosclerosis and corinary artery disease (I think), rather than aortic annurism (I thinks) shall have to check through the papers on excess mortality in panhypopit again I can't quite recall them now TBH - possibly also, an idea that occurs to me; potential fluid inbalance, too much fluid in the blood raises BP of course, which I may have had in the past, as things to do with the adrenals can regulate fluid in the blood etc, though from memory I didn't seem to ever have any problem with my aldosterone levels, though I guess it could be a SIADH thing, which apparently I had* but now don't have

final circuit training session exausted; and I was taking it slightly easier! - but ...

'Student of the class' awared.... goes to me - they want to use me as a case study, as I've lost so much weight and gained back quite a lot of health, during the 12 week course

usefully, the guy there, si going to refer me to another thing, so I might get some new thing to do; possibly a guideed (helped/assisted) swimming at the local sports centre/pool

they recorded my weight today at 95 KG I think, (though that is clothed of course), and my starting weight was 107 KG My BP today, befor ecircuit training was 114 over 80 which seems a bit on the low side to me

now cooking quiche (salmon and broccoli M&S), with tortaloni (sainsburys, spinich and ricotta), we'll have salad (lettuce cucumber, tomato and red bell pepper maybe also some shallote onion), to go with that - trying to cook a quich under the grill (broken oven), is not as easy as it might be... acuttally I oughta go check on it

I was wondering if working out in a pool would be good for you, lessen the exertion but keep up the exercise.


I really need more exercise myself, but walks and bike rides are all I seem to do. Oh well.

We do a lot of walking.... well, like otday, we got a bus to the hospital for circuit training, but went half the way on foot, and got the bus from the rail station, and then walking through the hospital, plus back from the bus after, a good hour or more walking and we try to get out every day, useually just half an hour in town, or round nearby, but often also adding in an hours walk... - only way I can cycle is on the machines at the gym, of course

I've never been a fan of swimming; my technique was always dredful I think, so it was more me struggling not to drown than actually swimming gracefully through the water - maybe I could try get some advice re my swimming technique, been a long while since I last swam though, I think.... - just hope I don't react as badly to the chlorine as i used too, its a good option in terms of exercise, keeping fit, and not over-exertion for the heart thing, although may represent a danger for my immune system, with potential infection perhaps, though I'm not sure...I may try give it a go, anyhows, just see how I get on if not, theres still the gym, if more limited than before by what I can do, plus I may think about rejoining yoga or pilatez (sp?) my posture could certainly do with that

There are other exercises you can do in the pool besides just swimming. Working out in water adds resistance without impact. There's water aerobics and various exercises utilizing pool noodles and such. We don't have a pool noodle smiley do we?

I've been thinking about suggesting swimming to you for a long time. I go 3-5 times a week, private health club inside a hotel, with a hot tub, sauna and steam room poolside too. My previous one was a saline pool, and where I go now is only lightly chlorinated. It's warm, with graduated steps to get in and out and plenty of pool noodles and such. Check out what's nearby, maybe a hotel has facilities that you can sign up to use?
For example if this is near you, there's a one day pass so you can try for free: http://www.qhotels.co.uk/our-locations/the-cambridge-belfry/health-club/

Mum's hospital is about a 60 mile drive SE from you, I can't fault the hematology treatment she's had, all the staff are wonderful with her and we're kept informed about her medication, they answer all her questions and explain what she's taking and why. And they trust an 81 year old with carpal tunnel to do her own injections, which as I've said before, she does with her eyes shut anyway!

Its something I must consider, the swimming sid eof things... - so long as I can do it at a reasonable level of streneous.... I've gotten to increasde the level at the gym, I'm working at; as I've gotten fitter, and only now I'm told I'm ment to reduce that due to the annurism (which they knew about well before I started a at teh gym, with all the nurses etc., in endocrine saying 'go for it', and my GP writing a letter to the gym (charing me £25 for the letter), saying I had no medical condition that limited my physical activity; writing that letter months after the heart scan had identified the annurism.... I get confused as to the health service, its just, wrong, or not working in som way when they ignore on pupose information that could protect me, and actively incourage me to do things to dammage my health and indanger my life - to be hoenst, I don't have much to do anymore with the cancer people at the hospital, I'm a finished person as far as they're concerned, with just the six monthly checkups now, but I do get to phone them if anything crops up cancer symptom wise (all so vague I can't monitor them mind as most of the hormones produce the same side effects as those of the changes I'm ment to watch out for in terms of cancer relapse; but oncology don't seem to be able to understand or chose to ignore my words when I tell them this, and asked for advice...)



not slept properly in last three... or four days... woke this monring, so so so tired then went to gym

forty minutes, bike, then cross trainer/ski machine, then treadmill felt better than I had in days... and on coming home, showered, then went for a walk round town, got a few things, then had a nap... slept more in that nap than I had the past two or three days/nights combined now cooking dinner.... new potatos, salad and mackrel fillets grilled... - had tuna with avocado in a wrap for a late lunch after we got back from town

I think for the swimming/pool thing, I might be better off at the sports center thing, where there are people to help, as I'd basicaly be on my own were it in another pool, and I assume not being able to see will make doing stuff awkward if I'm not to collide with pool sides, edges, or other swimmers etc and I am a terrible swimmer - all the hotel type ones near here, are further out of town, the sort of fitness/health spa hotel places... - I assume I'm not propbably ment to do the sauna thing anymore, which is annoying as I only discovered them really last year, when at teh spa hotel just out of town, with Dragon Queen before the wedding and my body does have an inability to cope with temperature cahnges now, due to the hormone thing (I assume) ; I can't stand the heat, never was taht good with it, but now it makes me very ill feeling, and simularly, if it then drops by half a degree, all my fingers lose their ability to feel anything, and go white at the end (neuropathy I assume no idea, the Drs refuse to examine the nerve dammage, which was put odwn to propbably being the chemotherapy medication vinblastin) - like today it was boiling hot out; but by the time we got to the gym, my hands had lost all feeling as there was a slight wind, that was obviously enough to cool my hands slightly - basically my body can't react to any changes in the 'external conditions', not, where at least, those changes the body should do, are ment to be regulated by, or in conjunction with the hormones I don't make - oddly, and nothing explained by endocrine or neurology is that a lot of my symptoms ar emore like hypothalamic (brain) dammage, tahn they are like direct pitutiary dammage (hypothalamus signals to pituitary, to tell pitutiary to release its hormones, and then the pitutiary signals to the other glands like adrenal to t teell them to secret their hormones ) - but once one is diagnosed, no one cares what causes it, as the treatment is the same; just treat symptoms not underlaying cause and no differnential treatment based on cause, apparently, within the NHS anyhows its so frustrating understanding this stuff, and having top Drs world leaders in their field, (one of my Drs just made fellow of the national society), who, clearly, eitehr don't understand it, or can't understand it, or if they do, can't have the funds or time to do anything more than the basic not much at all treatment side of things...