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!

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6 Responses to “Status update II”

  1. Sam Says:

    Running Crazy???? NAHHHHHHH…..and knees are a poor excuse for not running! Mine are like a roadmap.

  2. Jennifer Says:

    Awww, Ulf…thanks! You’ve been one of my great encouragers as well…it goes both ways 🙂 I HOPE that you can get in in six months…wouldn’t that be awesome?!?
    I think everyone puts on winter pounds…we can’t get out much and it’s just draggy and sluggy and we have all sorts of yummy comfort foods!! 🙂

  3. Ann Kristin Says:

    Hei,
    Bare lurer på hvorfor du ikke tar operasjonen på Haukeland.. Ventetiden er jo ekstremt mye kortere der, og da slipper du å slite enda mer enn du gjør nå.. Så kan du ta selve opptrening/oppfølgingen her i oslo?

  4. Ulf Says:

    Hei Ann Kristin!

    Grunnen er den at Haukeland ikke tilbyr å operer inn HiRes90K-implantatet som Advanced Bionics produserer. Denne kan så apparatet som heter Harmony bruke. Harmony gir muligheter til programmering av lyd langt ut over andre modeller på markedet i dag. Bl.a. kan den simulere 120 frekvenskanaler, sånn at hørselen får “høyere oppløsning”. Det betyr at f.eks. musikk vil høres bedre ut. For meg er det å ha mulighet til fremtidige programforbedringer (80% ubenyttet datakapasitet i Harmony!) og dette med musikk-mulighetene det viktigste. Venter da heller litt ekstra fremfor å sette inn noe jeg tror vil være dårligere for meg…

    I bunn og grunn blir valget av implantat et persolig valg. Det kommer an på hva man vektlegger. De er ikke dårlige de andre implantatene altså….

    Ulf

  5. roberta Says:

    Great! Be patient 🙂
    Roberta

  6. Abbie Says:

    I should be thanking you for letting me your friend 🙂 Thanks a lot Ulf!


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