An update about the CI-situation in Norway feb 29th 2008 (in Norwegian)

This article is from hlf.no

Garanterte CI-operasjoner – og måtte gå

Styremøtet på Rikshospitalet torsdag ble meget dramatisk. Først garanterte direktør Åge Danielsen at Rikshospitalet vil levere CI-operasjoner til voksne og barn som bestilt i oppdragsdokumentet fra helseministeren. Så fikk han sparken.

Klokken 00.20 natt til fredag fikk administrerende direktør Åge Danielsen ved Rikshospitalet sparken av styret. Han røk for å ha holdt tilbake informasjon om byggingen av det omstridte sykehotellet på Radiumhospitalet.

For hørselshemmede var det også knyttet stor spenning til de foreslåtte kuttene ved ØNH-avdelingens CI-team. Fem stillinger var foreslått kuttet i CI-teamet i tillegg til de fem som ble vedtatt kuttet under forrige innsparingsrunde 15. januar. CI-teamet består av åtte personer. Både HLF og fagfolkene ved ØNH-avdelingen har derfor fryktet at hele CI-tilbudet ved Rikshospitalet ville bli utradert.

– En seier for døve barn og voksne

På direkte spørsmål fra styret under budsjettbehandlingen bekreftet imidlertid Danielsen at CI-operasjonene vil bli levert i henhold til oppdragsdokumentet fra helseministeren. Dette innebærer 100 voksenoperasjoner i 2008 og at landsfunksjonen for barn opprettholdes. Det reduserte måltallet fra 227 til 200 implantater vil ramme dem som trenger revisjon av implantatene.

– Denne garantien fra sykehusadminstrasjonen til styret er en seier for døve barn og voksne som trenger hørselsoperasjon, sier HLFs generalsekretær Geir Lippestad, som har engasjert seg sterkt i saken etter at de dramatiske kuttforslagene ble kjent.

– Uforsvarlig situasjon
Fortsatt er det imidlertid en meget krevende situasjon ved ØNH-avdelingen på Rikshospitalet. For to uker siden trakk avdelingens leder Bente Mortensen og nestleder Kjell Brøndbo seg fra sine stillinger i protest mot de varslede kuttene.

– Det har oppstått uforsvarlig situasjon ut fra de oppgavene vi har. Blant annet er det kritisk at antall sengeplasser er redusert fra 27 til 20 ved avdelingen, sier tidligere avdelingsleder Bente Mortensen. Hun har trukket seg som leder ved ØNH-avdelingen, som blant annet har eneansvar for pasienter med hode-/halskreft i helseregionen.

Til tross for den nå avgåtte sykehusdirektørens CI-garanti, vil det bli kraftige nedskjæringer i den såkalte ØPO-klinikken, som i tillegg til øre-nese-hals inneholder plastikk- og ortopedisk kirurgi.

Overlege Marie Bunne forteller at ØNH-avdelingen har over 900 pasienter som venter på å komme inn til utredning for kompliserte hørselsproblemer, hull på trommehinnen, kronisk betennelse på hørebenet og andre tilstander knyttet til øre og hørsel. I tillegg har avdelingen mellom 700 og 800 pasienter som enten er i systemet eller er funnet kvalifisert for operasjon. Avdelingen skal også følge opp nyfødte som blir oppdaget under hørselscreeningen på Ullevål og Asker og Bærum sykehus.

– Til tross for at sykehuset nå garanterer CI-operasjonene, står ØNH-avdelingen på Rikshospitalet overfor store utfordringer, sier Lippestad. Han lover at HLF vil følge situasjonen ved sykehuset tett i tiden fremover.

The health debate in Norway (it’s all about personal prestige and money, not the patients…)

Just wrote a short piece in a comment-field about the political game that is ongoing in health-Norway right now: (sorry for not translating to english right now)

This is in response to the main article in Dagbladets online news this morning.

Alle debattinnleggene her har litt rett. Det er blitt en catch22-situasjon og nå er det et svarte-per spill som bare går ut over pasientene. Det er som Brustad sa: “dette er kompliserte saker, og det blir mer bråk.”
Tror generelt på det gode i mennesker, men at aktørene er fanget i et system som er basert på noen gamle dogmer og styringsmekanismer som ikke fungerer i møtet med den tøffe nykapitalismen!
Det må gjøres flere ting:

1. spesialisering MÅ SENTRALISERES og SATSES på! Bygg opp fagmiljøene og BESKYTT disse miljøene! (ikke kutt som de gjør med CI-teamet på RH!!!)
2. generell helse ute i distriktene må opprettholdes (bl.a. mottak og fødestuer)
3. byråkratiseringen av helse-Norge må reverseres, alt for mye henvisninger, papir-skyfling og for lite behandling…
4. Sett ned en kommisjon for å vurdere om det kan spares i administrative stillinger…
5. få legene til å gjøre legearbeid, overlat administrasjon til spesialutdannede (innen helseadministrasjon) sykepleiere med f.eks 10 års ansiennitet (en overlege kan være rådgiver til denne administrative person)
6. Helsenorge KAN IKKE DRIVES bare etter KOMMERSIELLE PRINSIPPER! Det handler om mennesker og omsorg!
7. Vi har råd til å betale oss ut av problemer, og politiske ansvarlige kan begynne å styre sykehusene mer direkte med direktiver. Feigt og umoralsk av politikerne og sykehusledelsen å skyve pasienter foran seg i dette spillet!
8. La pengene følge pasienten! Få en sammenheng mellom trygd og helse! Gi makta til pasientene!

I was on national news today

Here is original video from NRK. The piece where I appear begins about 7 minutes into the news… It’s in Norwegian, of course 😉
http://www1.nrk.no/nett-tv/klipp/342000

I’m working on the video-file, but unfortunately the overstream.net-service written about here earlier is undergoing maintenance due to high demand (!!!).
Will post video here later with English captions…

For English speakers: the story is about the management-board at the premier hospital in Norway, the Rikshospitalet, has presented a budget proposal that will lead to a removal of CI-operations here in Oslo (see the list in the video). This piece is related to the debate going on these days. There are a lot of troubles concerning the Norwegian health-care system these days, and now the health minister, Sylvia Brustad has said that this year there will be no extra money in the budget for the hospitals. Her reaction to the problems is that “this is what I as a minister gave you, and if you spend more, well, then that’s a problem you will have to deal with yourself”. Here is an article explaining the background for today’s news-story with me as an exponent for the group that in the end will suffer because politicians and hospital-bureaucrats are not able to cooperate; the patients. Instead they are busy playing the blame-game… Shame on them! (OK, OK; it’s very simplified, and probably not an accurate picture, but it’s my opinion right now.)

It’s getting late, so I don’t have time to give you the whole picture now, but here’s a list of English news-sites about Norway

Status update II

Where to begin??? Well, since my last “Status update from Nov. 6th 2007” (where everything is still valid, I won’t repeat everything) some things has changed.

Overall everything is a little bit worse. Tinnitus is loud, perhaps more constant, fatigue is a bit more severe. I get tired a lot faster from a lot less sound. Headaches are frequent.
It’s gotten to the point where I can’t stand the sound of pretty much anything. Even faint fan-noise is uncomfortable. I’m pretty much intolerable to any sound now.
Less than a year ago I was able to listen to music, now I have my hearing aids turned off more than they are on… I rely more and more on my lip-reading skills…

Bilateral CI-operation is still my number one priority. Other than that I continue to take care of my 7 year old son, my fantastic girlfriend (so grateful to have you in my life, honey!!!), family and myself as best as I can. My psychologist has helped me to be able to be comfortable with the fact that there’s not much more I can do. So instead of feeling lost in a black hole, filled with despair, I relax as much as I can, think positive as much as I can and so on. But I have to admit that some times I get the blues and wished that CI-operation could be in the past instead of in the future. But then again, that’s something to look forward to, right?

I am now at about number 60 on the waiting-list for the CI-screening. About 4 months ago I was at the 100th place. If that pace holds, it means about 10 patients a month, which means I could be looking for an appointment at around 6 months from now… Say august… I certainly hope so!!! I really shouldn’t complain, because I’m a lucky guy, really, who live in Norway and these kind of operations are funded by our health-care system… But things can always be better! If not for me, than maybe for the future post-linguistic-deaf person who need CI…

It will be interesting to see how the hospital will respond to my request for doing both ears simultaneously…. It’s not at all standard procedure, I know. It’s just that there’s really no alternative for me, so I might as well get both ears done at the same time…

I think the technology is ripe (Advanced Bionics Harmony with HiRes90K implants that can do 120 frequency bands), the surgery-techniques have developed and are pretty secure. Besides, operating one ear at a time is less cost-efficient than doing both at the same time. 300 000 NOK for one, and 500 000 NOK for two. That’s a whopping 20% saving! Or 100 000 NOK in plain numbers. Not to mention, my recovery will be over once and for all, and I can get back to the workforce sooner.

If the surgeries are done one at a time, I guess it will be almost 3 more years before I’ll get through it for good. In total that could be 6 years (!) of my life dominated by this CI-process…

ASCII-Man1 The long walk…

If I also take into consideration the time I spent dealing with the fact that I slowly lost my hearing, I would have to add a few years to those 6 waiting for CI. I also struggled with work since 2002. I’m up to almost 10 years of my life!!! If everything had been optimized, it could have been as short as 2 maybe 3 years….  Something could have been done a lot better by the health-care system and by the governments…

I hope that I will be able to work and function even with one CI, but I know it will take more strain on me. I know how it is to be deaf on one ear, too (all those times with defect HA, no good battery etc. etc.). And remember, CI is not fixing my hearing to a 100%, but maybe 30% of perfect hearing. Those 30% is certainly a lot more than the 0,5% I have now…. In fact, it’s more than I ever had. All my life I had approximately 20% residue hearing… And if I get more sound from all over the frequency-chart, I will be a very happy normally functioning deaf man! 🙂

Other than my deafening, my knees are shot, I’m still waiting to hear from the hospital after the initial response that my request has been recorded and acknowledged… I’m not able to do any physically challenging things like running (forget it), ice or in-line skating, swimming(!) or long walks…  I’ve been gaining kilos all throughout this winter 🙂  More of me to love 😉

Last night I finally got through the sleep-registration for detecting if I’m suffering from sleep apnea or just plain snoring… Something I decided needed to be ruled out as cause or bi-factor of my relentless fatigue…. Report is due in the mail sometime soon…

I have to thank all my blog-friends here: Thank you for sharing your experiences with the world, thank you for reading my blog and for encouraging words and support! I salute you all! You are indeed a well of good information!

Beautiful Butterfly Jen, Bionic Woman Abby, Running Crazy Sam, Michael is writing Chorost, Metal in his head Jeff, Great Cochlear Kids, Roberta from Italy (where’s your blog?) and many more!

Unconditional condition

I just sat very comfortably in my favorite chair in front of my computer for two hours, doing some work that requires concentration. I had no sounds to distract me, since I turned my hearing aids off for the work-session.
I can’t stand the sound of the fans, even though I have water-cooled most of my rig, the hard-drives give off too much heat for the whole thing to be able to run without fans… I think the sound can’t be much more than 17 – 20 dB (according to fan specifications), and that’s a faint sound, really. But my hearing aids are the most powerful there is (to my knowledge) and they’re cranked to the max. (Widex Senso Diva). So I turn them off more and more these days…

The recruitment is killing me if I don’t turn them off.

The tinnitus is there as always, but not really bothering me concentration-vise. It’s sort of comforting, since the sound now has a rather steady tone. (before it was a chaos of frequencies and variations in strength/volume)
Anyway, I sit, my head is not moving, my eyes are only fixated on the screen, and my concentration goes to the task at hand. The first hour goes fine, no problems.
The second hour I start to get physical sensations in my head. It is like pressure building slowly up.
I had a good night and I’m not tired. I have no stress to complete the work I do, and have no deadlines for anything. It’s Sunday 🙂

radThen suddenly I get these auditory sensations, it’s like a silent storm. I can feel it somehow. Not like pain, it is not unpleasant, it’s just a sensation of very weak electric current in my brain. Like a blanket of electricity sliding back and forth like the radar screen image.  It’s like a soft “wooosh” inside my brain…
The sensation that I have are connected to my ears, and at the same time they affect all of my brain (at least it feels like it does). I have no control of this sensation.

I wrote about this sensation before, connected to a pre-sleep phenomenon. This is very much the same, only now I get it during daytime too…

Seconds after this “wooosh”-sensation I feel dizzy (I guess there’s some kind of activity affecting my Vestibule where the balance-nerves are situated). It’s a weak vertigo, even though I sit still, are at peace with no stress. And I know I don’t have Meniére, thank goodness…

After this my ability to concentrate is worse. It’s difficult to keep a thought for as long as I like. My mind has always been a multitasking one; while doing one thing, my mind has been working out what the next thing I should/want to do… This is impossible in the state I’m in after only two hours of working effortlessly… It’s frustrating for me, because if I’m doing something that gives me a thought that I want to pursue, the short-term memory isn’t working as I’m used to. So when I complete the task I worked on, I KNOW that there was something I thought of doing, like searching for a special kind of information, or look up a certain fact etc. etc. But it’s gone… Sometimes I sit for 10 minutes of more, pondering what it was that ignited that thought, trying to reconstruct the idea for myself… Sometimes I get it, most often I just move on… I can’t let it get to me.

In short it makes me feel like I’m cognitively amputated… The SUDOKU-thing helped me understand this better…

And by writing this now, and concentrating on the subject and all the aspects of writing, I feel I’m pushing myself… I’m starting to get a headache now… This is the part I do not understand at all…

I haven’t heard a sound all morning (it’s now 12.30, I started working at 9.30). I know my hearing is disappearing, and the tinnitus is singing it’s tune. But why is it a strain for me to do something that doesn’t affect my hearing? Why do I get this dizzy feel, why the headache, why the memory-problems, why the multitasking problem, why the feeling of fatigue? Can it be that the optical-nerve also lies close the the nerves of the auditory nerve and the balance-nerve? It is all connected somehow…

My jaws feel like they had a punch (they’re sore, like I chewed gum for a few hours). My temples hurt a little bit. The dizzy feeling is there (but I’m not having trouble with the balance, though).

This state/condition will last all day, until late at night, then I feel better again, but the paradox then is that I need to sleep. I might me tired, but want to stay up because the world feel somewhat more vivid to me. Is it connected to me originally being a B-person? I’m not extreme, have no troubles getting up in the morning whenever… (but used to)

The best, the good, the bad and the ugly

Here’s some random (scrambled brain) thoughts….

The ugly side of life:
When reality bites hard, misery loves company.
Having said that, there’s always opportunities to be found, even in bad times… Just don’t freak out. Shift your weight from one foot to the other….

The bad side of life:
When life is stalled for some reason. When things happen that stops you. When you’re sick or your body won’t co-operate with you to do the things you want…

The good side of life:
Is when you have to struggle for it. To fight for sanity, your health, your wealth and your time. Because when you know you did it yourself you feel it was all worth it. That’s when it feels good to be alive… Troubles overcome is what makes you grow and learn…

The best side of life:
Is when I know my girlfriend smiles (even as we’re 513 kilometers apart).
When she is next to me, and I have complete peace in my heart.
When my kid is happy and healthy.
Friends.
When the sun shines.
When I reach a milestone.
When things turn for the better….
When I don’t have to tell myself to don’t worry… To just be…

I keep telling myself… and I do stay in there… and I allow myself to be tired… but I don’t like it…

I don’t know… how to NOT THINK about where I am…

Who knows?

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Not hearing all voices

Last night it became very clear to me the difference between lip reading/hearing a person I know well, and lip reading/hearing someone I don’t know that well.

I visited my best friend, Rolf, for his birthday. We almost always have great conversations, this time over a nice dinner he made. I have almost no trouble understanding Rolf. Even with a little bit of background noise (like his 4 year old daughter who wants attention), I can understand most of what he says.

cupping_earAfter a while, another friend of Rolf, Alex, also came to wish him happy birthday, and since we’ve met before we engaged in a conversation about latest news in each others lives. I could not understand very well what he said, and had to ask him to repeat almost every time he said something…

Later on, in my car on my way home again, I figured it’s no wonder why people close to me have a hard time understanding how bad I really hear. Or why it’s hard to understand how bad I hear when the surrounding sound environment is quiet. I seem to function well, yet I don’t always.

Just the thought of the day I needed to put down in writing….