?

Log in

No account? Create an account

The Funeral

today i am very much aware of and grateful for that i am alive and healthy.

i went to the funeral today. it was painful. painfully quiet and awkward, like funerals in my country almost always seem to be. painful to see how many lives this man's passing have pushed off balance. painful to know i'm never going to know his dark humor and hear his insane laugh ever again. painful imagining how many of the funeral guests were unaware of what he was really going through during the months leading up to his demise. his beautiful heart-stricken teenage daughter clutched the coffin, sobbing uncontrollably. does she know? or does she ask herself every night "what happened to my dad?" and what do i know, when it comes to that? i know squat about what his situation really was. i can only begin to imagine what treatment did to him and what his support system looked like...

a great many conflicting thoughts have buzzed though my mind today. about "coming out" during treatment, about relying on relatives and friends, about explaining the physical side effects and the chemical depression so people really get it, about coming to terms and being honest with oneself and one's limitations. for me, mostly relying on myself (and my knowledge of the health care system) instead of family turned out to be the answer. but i still made it public, to them and to most of my friends. for this guy, i suspect family could have ment salvation. now most of them will never know, never have a chance to share with him. he should have told more people. chances are, someone would have been there when the deciding minutes were ticking by. to save him.

i feel sick to my stomach thinking about his death. so instead i force my mind over and over again into thinking of him laughing. if there is one person whose laugh i should like to hear from beyond the grave, it is this man's. he had the most crazy, infectious cackling. i hope he is spreading it, like a virus, wherever he is right now!

Life and Death

i am past my one year EOT anniversary now and hardly ever think about my treatment anymore. it already seems like distant past. life is more or less the same as it ever was. for me, at least. not everyone is that lucky.

this morning i got the news that a friend of the family has passed away. he was in treatment. for the same subtype i was. at the same clinic. but he started out with liver and kidney problems, he had diabetes, and a history of heart problems. and he got all the severe side-effects i only got a little taste of, including the chemically induced depression. i don't know exactly what happened, but he missed dialysis one day and someone went to his home to look for him...

and i have a really bad conscience about it. last time i saw him was before he started treatment. i gave him all the tips and experience i could at that time and told him he was welcome to contact me anytime. but i haven't even talked to him on the phone since then. (i only heard second hand reports of his progress; he did test negative last time i heard.) it's not like he and i were friends and hung out before this (we hardly ever spoke at all) but i should have gone by with a packet of coffee like i intended to. just to see how he was doing.

but i was afraid. i think i knew deep down that something would go wrong, and i was too afraid and too selfish to do anything about it.

long story short; he waited too long to do treatment. and whatever his support system looked like - we failed him.

some lessons we learn too late.

:-(

Time flies when you're having fun

it's about then months now past EOT. i'm in good health and enjoying my HCV free life. some weeks ago i got my first real cold since i started treatment, naturally just days after having bragged how long it had been since last i had a cold. :) got a teeny problem with an asthma cough after it (i usually do) but it's gone now after having used to inhaler for a while. and after having stayed the same weight for about 6 months after treatment my weight is now on its way up again. but i have a mad appetite and i've got my sweet tooth back with a revenge, so it's my own damned fault if get back to my pre-treatment weight. also, i've had a small but irritating rash in the palm of my hand since about three months past EOT. i thought it was an allergic reaction at first but it's not responding to cortisone and i can't connect it to any particular allergen. i guess i need to go and get it checked before it gets worse. figures that i should get skin problems AFTER treatment.! ;-) but all in all, life is pretty darned good here on the other side...

Tags:

Setting Sail


got the results of the protein profile today with a nice little colored chart and all. the comment underneath simply says:

no signs of inflammation. previously known IgG M-component, today not clearly visible.

i still have an ever so slightly elevated IgG but they can't see the monoclonal component anymore! not that anything was really wrong to start with, but it seems like something in my body is setting itself right, at long last...


and mirror, mirror, on the wall, who has the fairest liver of them all?! :)


i'm all set then. clean bill of health, ready for the next phase of my life! if i can keep my current weight (still almost where i left off at end of treatment!) and manage a little more physical activities i should (knock on wood) have a pretty good chance of a very healthy middle-age. i'm throwing myself out into adventures already in june with an exciting 12 day sailing trip around spitsbergen, svalbard. 
there is nothing i can't do. and there is no time to do it like the present.
let's go!!

Tying up loose ends

it's wednesday and i have just turned in my big bin of used needles at the hospital pharmacy. i kept them all this time until i had the proof of SVR in black and white, for fear of jinxing it somehow! :) but now they're gone. feels great!!!

i saw my doc and one of the nurses monday at the "final" appointment. there wasn't much to say except pleasantries about how good things have gone, yada, yada. my ALAT has set another record low - it's now less than half of what it was before treatment, which was within normal range even then. also, i got the result of the PCR test in my hand and my doc explained that all the medical records the hospital has access to have been "wiped clean" - no more hep warning. she's also going to send letters to my GP clinic and my dentist, informing them of my new status. i'll get a letter myself too, to show any other clinics that i might want to convince.

except for awaiting that letter, there's only one other thing i'm waiting for and that's the result of the final protein profile. my doc promised me a follow up of the M-component now six months after treatment and we drew the blood for that on monday. i don't expect it to have changed, but you just never know, do you... in any case, there's nothing more my hep doc can do for me so if something has turned up regarding the M-component she'll have to refer me to a hematologist.

The letting go of things

long time, no see!

i haven't written anything in many weeks now. partly because i was tired of focusing so on the HCV issue once the taxing treatment was over and partly because i quickly got so much better that i simply forgot to think about it. especially during february when i went to india for two weeks and had the vacation of a lifetime (i think this was actually my third or fourth vacation "of a lifetime", but it was definitely the most colorful and soul touching). and i basically ate everything i came across, including ice cream, drank fruit juices, walked barefoot, waded in fresh water, petted animals and got bitten by mosquitoes - all the usual things they warn you about - and didn't pick up a single bug! not even a hint of delhi belly. actually, i haven't had a single cold or any other disease since end of treatment. my health is strong, my energy is high (high for me, that is), and thanks to still being on half dose ADs i hardly ever feel down either. things couldn't be better. or could it?

yes it could!!!

because today i got a phone call from one of the nurses at the clinic. even though i meet my doc on monday she thought i should spend the weekend celebrating instead of worrying. my six month test that i went in for a couple of weeks ago came back negative. i have SVRed!

i beat the virus.


and i'll update again next week, with more details.

Well post treatment

i'm now so many weeks post treatment i'm not counting them anymore. days go by when i don't think about the virus and the treatment. great feeling! my health is fine, i have no complaints. though i haven't been able to stop with the ADs. when i tried to reduce from half dose i got that unbalanced feeling i recognized from treatment, so for now i'm staying on them. i'm ok with that. surprisingly, my weight is still the same as when i ended treatment. but i'm ok with that too. :)

in a few weeks i go on a long vacation and in march i'm up for the 6 month test.

Tags:

an "undetectable"!!!

this means i have a pretty good chance of achieving the hepper holy grail of sustained viral response in another three month's time! a recent study using an advanced qualitative assay called TMA, which has a lower detection limit of 9.6 IU/ml, showed that a 12 week test is nearly as predictive (99.7%) of SVR as the standard 24 week test is. the detection limit of the PCR assay my clinic uses is 15 IU and i took the test a little less than 12 weeks post treatment, but the risk of late relapse is now extremely low. so merry christmas to me!!! :)

i also got other good news: my hemoglobin is within normal range again and my ALAT has set another record low. the iron panel also came back good: TIBC, serum iron and saturation are basically the same as 3 weeks post treatment while my ferritin has dropped from a clearly elevated 375 ug/L to 32 (mean for females = 50)! i have been keeping off iron supplements (but have eaten lots of red meat and i often use cast iron cookware) so the increased blood cell production has used up almost all the excess iron in my body. i can now go back to my regular multi vitamin/mineral supplement with iron, yay!

i don't have much else to report. the side effects have all abated and i feel fine. have even managed to avoid colds and influenza so far. i'm still on half dose AD (because i was feeling just a wee bit unbalanced anticipating the PCR result) but will continue tapering them now. also, i got my hep A shot* this morning so now (well, two weeks from now) i'm protected both against that and hep B. discussed other vaccines with my hep doc today because of my upcoming trip to india but she tells me i don't even need to get the diphtheria/tetanus/pertussis/polio boost and i needen't bother with cholera/ETEC or malaria either if i'm careful and bring emergency fever/diarrhea remedies. :-O okay then...

*havrix - very hard to get hold of right now (in sweden at least) due to production difficulties and high demand. so beware if you're planning an exotic vacation and need to get hepatitis protection!!


well then, according to this meme i tried this morning...

In 2011, heptagon69 resolves to...
Learn to play the std.
Pay for my copegus on time.
Overcome my secret fear of pegasys.
Cut down to ten virus a day.
Apply for a new alt.
Be nicer to hepatitis_c_log.
 
Get your own New Year's Resolutions:

 ... but now i really needen't bother with any of these resolutions except maybe being nicer to friends and, depending on what's meant by it, "learning to play the STD". ;-)

merry christmas and a happy healthy new year to you!

EOT +11 weeks

continuing to improve as far as the nerve tingling goes (barely noticeable), hands still aching a little but not enough to hinder me at work, sleep ok, mood perhaps a little more fluctuating than before (on ½ dose ADs now) but i'm keeping my spirit up.

went in for blood work this morning, a week early, to be sure i have the result of the PCR before christmas. but since it's an "unofficial" test and most relapsers test positive already after one month anyway it doesn't really matter much when it's taken.

and i keep reminding myself that it doesn't matter much if the result is positive or negative. just knowing will be a christmas present in itself, since i am blessed with good health otherwise and can start laying a plan for the next few years of my life. because one way or the other, i'm going to give the universe some payback. ;-)
 

Tags:

EOT + 10 weeks

energy is back up again this week despite some minor sleep problems, my hands still ache but not at all as bad, and the tingling in my leg has receded somewhat. interestingly enough i noticed directly after posting last week that i've been taking less than ½ dose of my new multi-vitamin/mineral supplement instead of full dose, so i immediately increased it! i also started taking extra vitamin D again (had stopped taking them after EOT when my appetite increased). and already i feel better - coincidence, placebo? perhaps. but it might also make a biochemical difference...

speaking of biochemical things, i just started tapering the ADs a few days ago and will do it very carefully over the next 3 ½ weeks. (so if i don't like what i end up with around new years i can increase again and be fine in time for my trip to india in february.)

i've also requested and received forms for blood work to be done the week before christmas - a PCR plus Hb, ALAT and an iron panel (so i can follow up the one i did at +3 weeks). of course i would have loved a full checkup with thyroids etc but since i'm pretty healthy it's not warranted so i didn't even ask for it. hopefully they will have the PCR result ready on the 23rd when i go to the clinic to get my hep A vaccination. the nurse even managed to book an appointment with my doc that morning so if anything looks weird i can lobby for further testing right away. i'm also hoping to say hi to the counselor while i am there, she expressed a wish to hear from me when i talked to her on the phone at EOT.

okey dokey! ... tick tock, tick tock... :)

EOT +9 weeks - on pins and needles

i wanted to start this post with saying life has returned to normal, but then i hesitated. what is normal supposed to be?

sure, i have felt pretty darned good these weeks since i last posted. work has been fun, i've felt more clearheaded, and i've had more energy to deal with everyday stuff and for doing fun stuff like taking solo nature walks and seeing friends. my appetite has been healthy (bordering on unhealthy because my sugar craving is back to "normal"!) but i haven't gained much weight yet. i haven't had any colds or other infections (though they are certainly present in my surroundings!), and i can't remember the last time i had a headache that wasn't coupled to PMS. sleepwise i've been pretty good although i have been waking up too early in the mornings. (i haven't used zolpidem at all.) i'm still on ADs but thinking about quitting them slowly during december, mainly because it's a bummer having to remember to take them every day now that i don't have to live my life according to other tablets any more.

however, this last week or so i've felt my energy level plunge. i wake up tired and disoriented by the sound of the alarm clock, i stand for ever under steaming hot water in the shower before i can brave stepping out into the cold, both my hands have been weak and aching to the point of hindering me a bit at work, and a strange symptom i've been noticing since about three weeks after EOT have shown persistency and grown; an irritating tingling sensation in my right foot and lower leg. it's almost like the pins and needles feeling you have when a limb has gone numb and is "waking up" again. it's of course most noticeable when i lie down to sleep but i feel it constantly now. it's not strong enough (yet) to keep me from going to sleep but it's darned irritating anyway and of course i'm fretting about what is causing this neuropathy. to be honest, the last year or so i've sometimes felt as if my cell phone, which i keep in or near my right hand trouser pocket, was vibrating when i stood in a certain position because i had a nerve tingling going down my leg. it wasn't often though and not uncomfortable so i put it aside. perhaps i should have it checked out now that my foot is bothering me.

other than this, i'm fine and longing for it to be +12 weeks already...

EOT +6 weeks - Dreaming of Things to Come


i've had another good week, though almost a little hyper with some problems going to sleep. hope it's just temporary... speaking of sleep though, i've noticed that i'm dreaming a whole lot more (or remembering the dreams better) now than during treatment. but most of the dreams have a theme centered around betrayal, invasion, exposure, helplessness or abandonment. people on treatment usually experience the opposite, with a raise in anxiety-laden dreams while on the meds. i guess i 'm just wired differently, because i had very few dreams during my 48 weeks! :)

the tone of my dreams now are pretty easy to interpret. my subconscious is worried that the virus has survived. but consciously i think i'm doing pretty well not fretting about it. what would i gain from it? it won't make any difference to me because i've decided (98% sure) that i won't embark on another treatment right away anyway. if the PCR is positive in december then it's just a question of monitoring levels and living at least a couple of years taking advantage of whatever opportunities life throws at me before i launch the next attack. after this experience i know exactly what to do and not do next time around, i know a lot more about my inner strength, plus i know i'm in very good general health. i've aced almost all my other tests this year, including the three cancer screenings - mammography, birthmarks and pap smear. all clear! :) christmas can be white or blue, i don't care. i'm going to have some fun next year! 

that's my plan anyway. "best laid"...

Tags:

EOT + 5 weeks


five weeks post treatment and it still feels a little odd not to "shoot  up" when friday arrives!! :) 

i continue to feel pretty good. however, can't say i've felt any clear improvement from last week. but i had my period this week and with it came a stubborn headache, so no wonder...  the restless legs that irritated me last week haven't bothered me much though, and i haven't gotten any URIs yet (the flu season has just started here) so that's two things to be grateful for.

and my sleep is getting better. i still wake up too early but i don't experience problems going to (or back to) sleep anymore. haven't touched the zolpidem at all this week. but then i'm on vacation this week and next, it might get harder again once i go back to work. hopefully not!

also, i think i've gained 1 kilo this week. appetite is waaay up since the meds cleared my system! i don't think i really realized how much less food i ate during treatment. i hope i don't gain every kilo back too soon. i've gotten used to wearing skinny pants with a belt. :)

and as far as my eyes go, the spots in my vitreous are still there of course but i think i've learned to accept them now because they don't irritate me as much anymore. but i have been turning down the lights a lot at home (used to be a lux addict!) and i bought myself a pair of fitovers that i have been wearing a lot outside and while driving, so that has helped making the spots less visible.



and the future is so bright i almost need to wear them at night! ;-)

EOT +4 weeks

i feel pretty good! working full days has been ok (except for monday when i got really tired) and mentally and emotionally i feel pretty stable, but each day there's a different little thing to complain about. i sleep ok one night and completely bomb the next, i get bad restless legs one evening and not the next, and today i've walked around feeling like my heart was stuck in my throat the whole day (without being anxious or physically exerted). the tenderness around the liver is almost all gone though and my appetite is definitely on its way up. strange new post treatment land...

Iron results - hmmm...

three weeks after end of treatment my...

Hb has climbed to 115, which is just under the limit for women (and 86% of my baseline value)
MCV (mean cell volume) is fine at 97 fL
leukocytes have climbed a bit but are still too low (about half of my baseline value)
thrombocytes, as usual, are fine (about the same as 4 weeks into treatment)

serum iron is a bit under the norm at 9 umol/L (mean 19, ref interv 10-29)
TIBC (total iron binding capacity) is at 56 umol/L (ref interv 46-70)
if i calculate transferrin saturation correctly it's at 16% (=normal)
and ferritin is elevated at 375 ug/L (should not be higher than 175)

well... my untrained eye (and the GP i talked to) says i'm not iron deficient and i'm really happy my Hb has risen that much already, but other than that i'm not really sure what this combination of results is saying. i expected the ferritin level to be high, but i think i'll give the hep clinic a call next week and discuss my iron status related to the liver tenderness (which actually is barely noticeable right now) and see if they possibly want to check inflammation markers...
i think i'm starting to feel a change now. still feel like gasping for air once in a while and my heart is still beating heavily enough for me to notice some times, but i haven't had any headaches this week and haven't noticed the pulse in my ears either. there's a little more spring in my step and i've been getting comments at work that i've started to "glow". i keep looking at my palms but i can't really tell if they look any redder. but they feel redder. :) i had a blood count and iron panel done this morning and will hopefully get the results early next week. i wanted to check my iron status to see if i should start taking iron to push up the hemoglobin faster. don't want to supplement unless my body is running out of iron now as the blood production is starting up again (two weeks should be enough to sufficiently lower the concentration of riba and interferon and then it takes the erythropoiesis about a week to let out fresh new red blood cells.)

on the minus side i have to say that my sleep is still crappy. this is the first week i've tried getting along without the zolpidem (only took one pill this whole week) - the result is i wake up a lot during the night and i'm unable to go back to sleep after 4.30 in the morning. i'm not fretting about it though, that would only make my sleep issue into something bigger than it is.

what i am fretting about, though, is a slightly tender/swollen feeling around my liver. :( 48 weeks of treatment has turned me into a hepochondriac. i'm imagining little lingering trojan viruses multiplying and making my liver cells burst like rotten cantaloupes. i'm temped to call my hep doc and beg for a test. but i'm not going to. unless it gets worse. for all i know it could just be the liver adjusting to a new chemistry without all those meds and busy synthesizing proteins for my new blood. ehh... :-/

*crossing fingers*

EOT +2 weeks

16 days off the meds, and not much to show for it. had a sore throat a couple of days ago but it went away without developing into anything, and friday i was slightly nauseous the whole day but that passed too. but i'm still very tired, feels like i'm breathing too shallow (keep wanting to gasp for air), i keep hearing my own pulse, sudden headaches keep plaguing me, the spots in my vision are bothersome, and i think i dropped another kilo this week. i read somewhere that the half life of ribavirin is about 12 days so i should still have a considerable amount in me, and on top of that i'm wondering if the fact that it took me a while to develop the anemia might mean i will be slow coming out of it too. time, and possibly a blood test this week, will tell... 

however, small signs of the meds leaving my system are 1) my mouth is starting to feel a little less dry and 2) i have (TMI warning!) ordinary snot-colored snot instead of just crusty old clots in my nose. :) also, it seems like there are digestive changes afoot (TMI warning again!!) - oddly enough i've experienced a much more regular and dry stool while on treatment (practically shooting out sheep pellets for most of the 48 weeks!) and that seems to becoming a thing of the past now. most heppers on treatment seem to be plagued by the opposite situation and i've been puzzled about it. oh well...

only a week left of sick leave now.

The EOT consultation

it's been quite a stressful week at work (with lots of confusion, confrontations and emergency meetings) and i've had some problems with the old one-sided headache (which stretches into my jaw now - should go to the dentist to check that out!) but i've also been feeling strangely happy and positive this week. (which, basically, is out of the ordinary for me!)  :) some sort of quiet euphoria has come over me and the world looks a lot more beautiful suddenly than just a week ago. weird... but physically (and sleep-wise) i haven't felt any improvement yet. it's only a week today since i stopped the meds.

i saw my dear hep doc today though, and as usual she took her time and went through all my questions with me.

EOT test results:
PCR assumed negative but actually not tested, only frozen for comparison if i happen to relapse
ALAT exactly the same as one month ago, which was the lowest ever
Hb had dropped from my steady 100 to 94 (good time to stop then!)  :)
but leukocytes, neuts and thrombocytes were up a bit
creatinine ok (more or less the same as always)
TSH and T4 free - both ok
glucose good, HBA1c a little low, insulin good (and compared to the first test my HOMA-1 score has improved to 1.25 from 1.58)
all the lipids are the same as before (good)
BMI down from 26 to 22

eyes: she recommended waiting two months before getting new glasses to give my vision a chance to settle while coming off the meds.

stopping the interferon abruptly - does that make one sensitive to viral infections? not that she has noticed, though many patients complain about feeling "low or uneasy" for about a month after having had their daily/weekly medication routine suddenly end. 

how fast can i expect my Hb and neuts to recover? should be fine within a month. if i think something is not right with me a month from now i'm welcome to call.

how soon should i get vaccinated for hep A and do i need a hep B boost? hep A; first shot (havrix) three months from now, then a booster shot six months after. my hep B titer is fine. (no other considerations necessary for a trip to central/south india in february.)

how long does she recommend i stay on the ADs? at least a month, and then tapering for a month with one pill every other day.

sleep problems: got new prescription for zolpidem so i can wean myself off slowly.

should i get a referral to have my protein profile further investigated? she'll check the protein profile again six months from now and we'll decide on that. (but they basically never refer people to specialists based on my kind of results.)

how often can i get post treatment checkups? three month blood cells+ALAT+PCR granted!! plus the usual one at six months. i'm also welcome to call if i'm worried about late relapse after that.

do i still have a duty to report my hcv status at medical visits in the future if i do SVR (at six months)? nope, none at all.

and if i relapse...
how often do i need to get checkups? once a year
will she require a new biopsy? not if i decide to treat again, and not for at least three years otherwise
can i treat again and do i get to modify my treatment protocol? yes, if i want to. but STAT-C probably won't be available for another three years. if i treat again without them i'm in for 72 weeks. i can start at 1400 mg riba and do priming for four weeks if i want, but i stay on the same interferon dose. (she hinted at new studies showing there's actually a possibility to reduce the standard IFN dose for naive patients?)


so... all in all, very good news!!! :-D


now i'm just waiting for the meds to clear my system, and in the meantime i'm going to get some other minor things (gyn stuff and birth marks) checked out just to get everything out of the way before my sick leave ends in october...
 


"Where do we go from here?"

... buffy the hepC slayer wants to know...


it's my 2nd day without ribas. how odd it feels not to have to remember them twice a day anymore! now i just have to remember to take vitamins and ADs. obviously it's too soon to feel any change. it's a usual fluey weekend for me, this time with bad tinnitus. and that left-sided pounding headache made a new debut yesterday (probably because of all the work stress). sleep has been pretty worthless. still, i'm in quite a good mood. and i've made a huge batch of yummy spicy chicken soup with chili, lime and ginger to keep me going through the week. :)

on friday i have the final treatment appointment with my liver doc. she's booked full for the next several months so i'd better get my list of questions ready to ask her. aside from evaluating the latest blood results (including PCR, thyroid, glucose and lipids) i need to discuss the following:

the result of my eye exam. i want to be sure she notes my floaters as a side effect. (my gut says they are, and not just a sign of aging.)

now that i've abruptly stopped the weekly shots of interferon, will i be extra sensitive to viral infections for a while before my natural interferon production is up to speed again? (nasty colds have been swarming around me since beginning of treatment but i haven't suffered any of them.)

how fast can i expect my Hb and neuts to recover?

how soon should i get vaccinated for hep A and do i need a hep B boost? (especially if i'm thinking of going to india in february.)

how long does she recommend i stay on the ADs?

should i get a referral to have my protein profile further investigated? (the last result came with a comment that urine testing could be of value.)

how often can i get post treatment checkups? the protocol only gives a PCR six months after EOT to verify SVR, but since ~99% of the relapses they measure at 6 months occur already within 3 months, i'd like to know sooner than later. but on the other hand, even 1 year after EOT there are studies that show a ~1% relapse risk, so can i get one then too? or at least get extra ALAT checks, although since i had excellent levels before treatment that might not give a clear enough indication.

do i still have a duty to report my hcv status at medical visits in the future if i do SVR?

and if i relapse, how often do i need to get checkups and will she require a new biopsy? can i treat again (with or without STAT-C drugs) and do i get to modify the treatment protocol with higher start doses, ribavirin priming and supplements?


this list will surely grow during the week to come...

 


ZERO - and we have liftoff!


had a bad night with fever spells, tummy ache and little sleep. then about a thousand vials of blood were drawn from me early this morning (on a fasting stomach), and then i suffered through a catastrophic day at work. yet i couldn't be less bothered by it all. :) 

i just took my 49th subcutaneous shot and the last* of my two thousand three hundred (or so) retard pink pills. and so, i'm...



for this time, at least... :-/

i'm having chocolate balls for supper tonight and in my fridge there's a blushing bottle of bubbly just waiting to be taken advantage of. (in a month's time when the meds are gone from my system). woohoo!!! :-D


btw; my weight reached exactly -10 kgs this week.


*except for about a week's worth at the bottom of the last bottle that will be good for another couple of years, in case i need to embark on a second round and want to do riba priming.

The eye exam

i had it done early this morning. the whole thing was quicker and less "painful" than i thought. but it was a bit uncomfortable to walk around with blurry vision for 2½ hours afterwards. i've never looked more beautiful though.  :)

they tested my vision, checked the pressure, the retina and macula. and yay, everything is fine!! :) there is debris in the vitreous though, so floaters confirmed. the doc recommended me to get new glasses because the ones i have are a little too strong and with a properly adjusted prescription i might not get so irritated by the spots and my eyes shouldn't get so tired. other than that, there's nothing to do but "wait and see". 


i do my end of treatment blood work later this week and already on friday the 24th i have the final (i hope!) appointment with my hep doc. :)


ONE!!!

i'm on my last week now. mood ha been up, no weight loss, eyes have not been getting worse. but i'm getting very anxious for this to be over.

TWO!!

only two weeks to go now. :-O 
practically no weight loss this week either. but then i've been more or less inert these last few weeks, spending the afternoons and weekends in bed. :-( but i called the eye clinic today and harassed a nurse into giving me an appointment - i'm scheduled for monday the 13th. she said i had been placed in a priority group with a two month waiting time. (that's a downside to socialized health care, for sure...) it'll be the first time i get an exam with atropine drops. hope it's overcast that day, this autumn sun is ruthless. incidentally, i've got my first ever mammography exam scheduled for next week. who knew end of treatment would get so exciting? :-/ ugh...

THREE!

bloody hell, i'm opening the last packet of syringes tonight!

the week has been ok. sides are pretty much the same as last week but my mood has been a little better, and weight loss this week has been negligible. had to call försäkringskassan - and talk to my boss - because i happened to notice that my doc had put me on full time sick leave instead of the 50% i want. (my contact at försäkringskassan sounded very surprised when she heard me say i'm better than what the doc's statement says. i don't think they get that very often.) :) also called the eye clinic to make sure they've received my referral - they have, but no news yet on when i can get an appointment. i suspect i won't get there until well after end of treatment. the spots in my vitreous are still bothering me. when i get home from work i have to rest my eyes for a while because the involuntary movements i make while "chasing" the spots around (esp against light backgrounds such as the sky, work surfaces and computer screens) makes them hurt. they say the brain learns how to filter them out after a while. still waiting for that to happen. maybe i'm being impatient, but having had tinnitus for many years i don't want to get "tinnitus of the eyes" too. :-/
 


Results from week 44

hemoglobin steady at 100.
plenty of thrombocytes too.
and ALAT lower than ever!!
but whites have dropped again, and neutrophils are down to 0.7 (from 1.2 four weeks earlier). seems like my gums worsen when the neuts drop, but other than that i haven't been affected by it. (knock on wood!)

FOUR

nothing much to say... another low energy week, same old stupid fatigue and minor aches and pains. had a fever last weekend. no weight loss this week though. headaches much better, so stopped acupuncture treatment. spots in my eyes still irritating me, still waiting for the referral. sick leave has been extended a bit into october. had the last blood before end of treatment drawn this week and next week i go to pick up my last set of meds. looking forward to crossing the finish line in a month's time! meanwhile, have found out that the very best thing about treatment is lying in bed in the afternoons overdosing on taped episodes of "deadliest catch". my life is pretty darned good!  ;-)

FIVE

very tired this week... period showed up three days late, shorter than normal, and no weight gain before it. had a bit of elevated temp these last two mornings. felt grumpy and exhausted today, managed a short afternoon nap but feel restless. 

tomorrow i leave for an overnight stay at a cottage with friends. (first and probably only time on this Tx i'll be traveling with a syringe.) 

next week is blood work again, and i have a phone appointment with my doc.

SIX

i've been grumpy and short-fused most of this week (good week to be off work!). feels like serious PMSing but my period is three days overdue now. weight is down 0.7 kg since last week (= ribavirin dose 22 mgs/kg). noticed a little hair loss again. i'm still in a hyper mode, can't seem to relax enough to take naps. waiting for the eye referral to come through (told the hep nurse to tell my doc about it).

shit. i just realized i need to call the clinic again next week to have my sick leave prolonged.

Eye concerns

the last week or so i have been noticing large "floaters" (spots at the back of the vitreous body). they're a bit annoying so when in town today i popped in to an optician to get a vision test done and to ask about them. no flashes, no blurriness, no loss of vision, but i have some accommodation problems and as suspected my current glasses are a little too strong for me. since i'm on medication that can cause retinopathy and my mother has macular degeneration (the inoperable kind) the optician wants to refer me to a private eye clinic. i guess i should call my clinic tomorrow and tell them about my floaters and the referral, although i doubt the floaters per se has anything to do with treatment. apparently they're very common, you get more as you grow older, and there's not much you can do about it anyway. my clinic could refer me for me free to an eye doc but i doubt i'd get to one faster, considering i don't have any telltale symptoms of retinopathy.

SEVEN


this last week i've been feeling more like i did in the beginning of treatment in that i have trouble with insomnia, been irritable, felt hyper and started a lot of projects that i don't have the energy to finish (among other things cleaning out a decade or so of old stuff i neither need nor want, as preparation for a possible move next year). i've also lost a good 1 kg the last week despite indulging in orgies of fried fish and mashed potatoes, mc'donalds, and chocolate cake with whipped cream. it's certainly not the worst side one could have (considering i had some spare body fat to begin with) but this is not my regular metabolism. (last time i lost weight in this manner without actually trying was when i worked as a highschool temp and has nervous diarrhea every day.) :) as far as the headaches go, they haven't been bad enough to warrant ibuprofen this week and i've started getting acupuncture.

i've encountered a "problem" this week regarding being on sick leave for a longer period. since i went on sick leave my employer has been giving me 10% sjuklön - that is you get to keep 10% of your normal pay until the 90th day. then this amount is replaced by an insurance (gruppförsäkring) that you're automatically signed up for when you start working for this employer. i got a form in the mail prompting me to fill in the same info that i've given försäkringskassan and send in copies of my sick leave papers, and at the bottom where you sign your name you also automatically give the insurance company permission to check your info with various authorities, other insurance companies, and your physicians. this also gives them right to request all your medical records and to keep a copy of them forever. there is no way on the form to choose which parties you are ok with them contacting or to limit access to your medical records, or the amount of time they get to keep them on file. i don't know if i'm prepared to have all my medical records given to an insurance company (that in turn can give them to other companies) for a hep c infection i could possibly be permantly rid of from now on! the amount of money we're talking about isn't exactly negligible but not large enough that it would make a difference either as long as i can keep working 50% the rest of treatment. so i'm leaning toward not claiming the insurance...

anyway, i have the next week off from work and after that i should begin to see the light at the end of the proverbial tunnel...

Oops again...

i think i took two antidepressants instead of sleeping pills last night, by mistake. it was not a fun night!!
but at least i'm very mellow today. :-/

Week 40 results

Hb - holding
thrombocytes - no change (apparently i can chew ibuprofen as candy!)
neutrophils - doubled! (1.2)
ALAT - still low

(Oops)

i had trouble going to sleep last night and after 1 am it finally dawned on me that i had forgotten my pegasys shot.

got up, took two sleeping pills, and prepared stuff for the injection. then i fumbled and dropped the syringe on the floor! and of course it was the last one i had at home... but the cap was still on and the syringe didn't break. the fluid just turned very, very bubbly. waited a bit for the worst of it to settle and then the jab itself went perfectly.

i like my peg shaken, not stirred. :)

EIGHT

so... i've been home for two weeks now, but will start working 50% next week again because i feel better. i have used the TENS unit on and off for the last week or so. my neck muscles seem  looser (and i don't get "hungover" after using it like the first few days) but i still get the headaches and since i can't attach the pads on my scalp i can't use it to drown out those pains. so i am still on ibuprofen and interested to see if it has affected my thrombocytes at all. and i've actually found out that the test from a month ago (week 36) showed slight inflammation because of elevated orosomucoid and that the CRP bordered on being high. also, my neutrophils at that time were down to 0.6 (at 0.5 they usually start worrying) so something really has been going on in my body and i don't feel guilty at all now for staying home these twoo weeks to "catch my breath". i visited work yesterday and the work load is more reasonable now than when i left, so that's good news. i applied for a week of vacation a long time ago and that's coming up the week after next, so that takes the pressure off too. and after that my regular hep doc will be back from her vacation and we can see what needs to be done...

although i usually go to a chem lab close to work to have my blood drawn, today i decided to drop in at the hep clinic for my week 40 checkup. it's always a pleasure to see the nurses there, they're so friendly and helpful and caring. i'm pretty impressed with any clinic in the swedish health system where staff and patients are on familiar terms and stop to have a brief chat even though they're on their way to see someone else. my nurse today had just come back from her summer vacation and had already gone through the entire patient list to see how everyone are doing and how long they have left on treatment. and my counselor, who i haven't been in contact with for a while now, happened to see me in the waiting room so we managed to touch base too. seriously, i haven't seen customer service like that anywhere else... too bad the place gets some "shadier clientele" as well. waiting in the same room as a talkative addict with TB can be a bit much when your ribavirin affected mental state isn't tiptop. :) 

what else do i need to note? ... weight has been holding this last month, tinnitus fluctuates but doesn't get too bad, so too with the aches in hands and lower legs. getting acupuncture, and probably massage as well, next week.

two months left now...
 


NINE

and i feel like i've been run over by a bus.

went to a physiotherapist yesterday and got a TENS unit on loan for my neck. had it on and off during most of the day because it felt good (and it's so easy to carry around). in the afternoon i began feeling very tired and i stopped the TENS when my muscles started to seize up at the pulse strength that felt good before.

this morning i am sore all over the area where i had the pads, plus i have very achy wrists, i have a general dull headache, my tinnitus is loud, and feel like i have a fever but i don't. and i am so very very tired.

was thinking to visit work today to hand in the new sick leave paper. not sure i'm up to it though.



on a side note; i've noticed that i'm hearing my own pulse quite often nowadays. mostly when i lie on my side but sometimes a get a pressure sensation and "woosh" sound when i'm upright too and leaning forward. i haven't heard my pulse like this since i was a kid. not sure what is up, but unless my anemia gets worse and i start experiencing chest pains i won't bother reporting it. (could just be a swollen neck muscle pushing a bit on my carotid artery.)

TEN


i'm on week 36 (brain fog!) 38! countdown has started.

and i'm on 100% sick leave for the next two weeks. the pounding one-sided headache is back. no aura, no vomiting, no paralysis. but i'm exhausted. the doc i spoke to today (mine is on vacation) had no other explanation for the headache so he accepted mine (tension related trapezius) and i'm back on ibuprofen. have also started some light weightlifting and stretching. still have to find a place to go for acupuncture or TENS or something. will deal with that after the weekend.

got good news about the M component though: no change from before, and this is the second followup. i didn't bother asking but i assume there's no further need to keep checking it. and nothing else out of the ordinary in the protein profile either, i'm told.
 


Some results from week 36

looking really good!!

hemoglobin is back up to 100 (g/L) again.
leukocytes have not dropped any further compared to four weeks ago.
thrombcytes still as plentiful as ever.
glucose (fasting) the lowest measured yet. yeah, baby!!! :)
TSH is back down to baseline level (after having been doubled between week 12 and 24) and T4 free is the same as its always been.
and ALAT even sliiiightlyyy lower (not significantly though) than the "record low" four weeks ago! :)

i don't have details about leukocytes yet and still waiting on protein results, but with these results today there's no reason for me to bite my fingernails. :)

i'm a bit surprised at the Hb. i thought it had dropped a little again because i've felt more winded and fatigued this month. mouth dryness has also increased. my hands and wrists seem to be continuously aching now, maybe a faint hint of it in the lower legs as well. i used to get achy hands from work now and then (i do a lot of fine motor movements at work) but i'm only working 50% now and i have been resting a lot on my spare time, so it's not overuse. it's not too bad though. neither is the tinnitus, btw. eyes have been a little itchy but it's grass pollen season here and i'm allergic.

and i'm very glad to report that the pounding headache i was plagued by for weeks hasn't made an appearance the last few days, so i'm thinking it really was a muscle/tendon thing and having medicated it with paracetamol and ibuprofen for a while has cleared it. i really hope it doesn't come back. (i'm still a bit stiff on the left side of my neck...)

also on a positive note; i haven't dropped any weight this last week.

week 36


this week saw the summer solstice pass, and i'm on week 36 of treatment.
 

36 weeks worth of clipped pegasys syringes in a 1.4 L soda bottle.

had my blood drawn thursday and will phone the clinic at the end of next week to get the results. i'm doing good except for the headaches. they are still left-sided and come and go, but they've graduated from pulsating to pounding. i've had tense neck muscles on that side for weeks now and since i get the pains at night too (strong enough to wake me up) i think it's an inflammation rather than anemia related. thinking of getting acupuncture or some deep massage but i'm actually a bit afraid of how the release of toxin buildup is going to affect me on top of this general fatigue i'm feeling. but it's either that or chewing more pills...

Aches and weight

shouldn't have said that about headaches not being a problem. i've had one on and off the whole week. a quite annoying pulsating one, on the left side of my skull.

basically i've felt fatigued the whole week. no wonder really, since the monthly curse is upon me again. this time it seems to be lighter though. and i didn't gain my usual weight before it. basically i'm almost down my 10% body weight now and i have three months left on treatment. (i have no problems with nausea or digestion, i try to eat a lot of protein and i don't use any low fat products.)

due for week 36 blood work this upcoming week...

Still upright

it might just be my imagination hypochondria again but ever since i found out my hemoglobin was a little lower i've felt weaker and more breathless. :) took a nice walk in the woods with a friend today and it's frightening how fast i feel acid. not painfully so, mind you, but like a low steady background "noise", a distinct heaviness in the limbs. i feel it in my arms too that there isn't much strength left. holding the cast iron frying pan with one hand to scoop out its content  - uhm, no! i must have lost plenty off muscle mass because i'm almost at -7 kgs but i'm still quite "padded" in the usual places. yes yes, i know... exercise! :(

other than that and an increase in mouth dryness (which together with the slightly lower Hb makes me think my body is reacting a bit to the now hefty ~21.4 mg/kg ribavirin dose) i'm fine. i've had another minor burst of hair loss but it's not bothering me and if it's bothering other people they sure haven't said anything. :) the headaches and tinnitus are still there but not at an annoying level. and emotionally i feel pretty stable. i'm still at 10 mgs of citalopram and maybe my body is finally starting to agree with it.

now if i could just find a way to clean my house. can't remember the last time i did that. stuff is everywhere. and there's dust piled ontop of the stuff. with a coating of dirt. that's not good, is it... :)

Profile

heptagon69
just another one fighting hepatitis c

Latest Month

November 2011
S M T W T F S
  12345
6789101112
13141516171819
20212223242526
27282930   

Tags

Syndicate

RSS Atom
Powered by LiveJournal.com