Goodbye old life – Hello new life! (?)

Wow… I’m still here!

neuronsMore than 4 long years after the neurons (picture on the left) in my brain formed the thought of getting a Cochlear Implant for the first time, I’m finally here. At the doorstep of a new reality. A new perception of the world of sounds promising improved social interaction and perhaps even music.

Back in 2005 my son had his first day at school, Microsoft’s Windows Vista was still to be officially launched, Pope John Paul II had just died and Pope Benedict XVI became his successor, the superjumbo Airbus A380 had it’s maiden flight from Toulouse, the Kuwaiti women were granted the right to vote (on my birthday), Lance Armstrong wins his 7th (and so far the last) Tour de France and the hurricane Katrina wreaks havoc in the US city of New Orleans and surrounding areas.

Now, in 2009, my son is in 4th grade (!), has a new set of front teeth and has grown almost 50 cm, Windows 7 is just around the corner, Barack Obama is the new US President, Lance Armstrong made a comeback to Tour de France and the world is desperately trying to shake off the effects of the worst global financial recession since 1930.

This time of waiting for CI has been hard and exhausting. I want to direct a very criticizing finger at Norwegian health authorities (forget about party-lines, this goes for all politicians and all policymakers!):

norsk_flagg_stang It is de-motivating, devastating and beyond understanding to have to wait 4 years for a life-improving sense enhancing procedure such as the Cochlear Implant! It is counter effective, both in terms of pure financials for the society and in human capital. Instead of returning quickly to a productive life and continuing as a healthy member of the taxpayers force, individuals such as myself are forced into years of life suspending professional and personal social life hibernation. It is such a place where the personal price is high, and the society’s costs are growing into grotesque proportions!

I have a 3 point petition:

1. Sense improving technology such as the Cochlear Implants is the future, embrace it! Build and strengthen national CI competence right now!

2. Stop being afraid it costs too much! In the end it costs much more to stall, let alone not doing it! It’s plain common sense! It is a CHEAP investment into human capital! Build for the future!

3. Grant all who might benefit from it, bilateral CI! In return I can promise you happier and much more productive deaf citizens of Norway!

I can’t say that the 4 years that has passed since my brain created the first thoughts about putting a Cochlear Implant into my head has been boring, far from it. They have been eventful!

research-sanity-1 Related to my condition; I went through 2 years of psychological therapy, countless visits at the hospital asking about when I could get the operation done (nagging), I said goodbye to my beloved music, I went through many life changing decisions, all in order to survive and maintain a life in order to be able to father my son the best I could and to remain sane, healthy and alive.

Yes, it’s been the fight of my lifetime so far! I had many small and big defeats, such as the day I admitted to myself that I was no longer fit for the A4 working life, or when I had to accept that I had to wait 4 years for that life-changing all-important cochlear implant…

But it’s a lot nicer to count my victories 🙂 I remained on my feet, I did not succumb to self-pity, I have been a somewhat decent father to my beloved son, I actively worked my brain from a medium depression state into a better functioning state with a more realistic view of myself, the world around me and it’s expectations from me. I made my life better, in spite of the borderline progressive deafness and it’s challenges. I lived my life to the maximum of my capabilities. I started my own company (in order for me to be able to work as much as I could/can). I got closer to my family and I found a very promising life-partner! I did not waste my time :-)  Sometimes challenges bring out the best in you.

At last, but not least; this blog has been my salvation, brainchild, hope and joy. I started ci4me2007 in the last weeks of 2006. I had such high hopes for it to become the year that I would finally get my CI. Now, 157 (counting this one) posts later, with 45.000 accumulated views (that means 45.000 opened pages), it’s almost nostalgic to look back. I wonder what will become of this blog now.

doorsA new chapter in my life begins the day after tomorrow. I owe the ones that are next in line for CI, wherever they might be, to be able to access my experiences both good and bad, just as I have been able to read about Michael Chorost (read his book!), Jennifer, Abbie, Sam, Jeff, and many, many others, and more recently; Kate, Movale, CIborg.

It’s time to walk through that door of perception, and shape my new world, and my life along with it. Wish me luck!

See you on the other side! 😀

In the Queue of my life, no 44 – (Part 5 of 7)

Secretary of State Sundsbø: – The responsibility lies on Health South-East .

Secretary of State, Dagfinn Sundsbø (SP, Centrum Party) in the Department for Health and Care says to Din Hørsel taht the department have been briefed about the situation for CI-surgeries in the region of Health South-East. – There has been concerns for the difficult situation at Rikshospitalet. We’ve been informed that illness among staff has been a large contributor to the currently difficult situation. But we strongly believe Rikshospitalet will be able to turn this around and that they are doing whatever is possible in order to maintain the set number of CI-surgeries for 2008.

He tells us that the development of the situation are closely monitored via follow-up meeting throughout the fall of 2008. – Health South-East has a clear understanding and acceptance of the demand set by the department as for how many surgeries shall be performed this year, he says.

According to the State Secretary, the Rikshospitalet are working at a project for increasing the surgery capacity by means of eliminating the needs for putting CI-patients into beds post-procedurally. – That project has a high priority and is expected to be implemented some time in October. The Otolaryngology department has drafted a plan for treating more patients. The plan is being finalized and is currently being studied by the hospital management, he says.

Sundsbø says that the reason of the unfortunate situation that has unveiled, is caused by a number of unfortunate coincidences. The Otolaryngology section had a heavy burden of illness, and also had trouble recruiting new staff for compensation. Reduced number of beds available to the section will be compensated by the establishment of the “one-day treatment” project, he says to Din Hørsel. – We’ve also been informed that another problem area is the pre-qualifying CI-examination capacity, Sundsbø tells.

108 patients are currently waiting for CI at Rikshospitalet. [my comment: at current rate the 108th patient has to wait more than 2 years]

In the Queue of my life, no 44 – (Part 4 of 7)

Rikshospitalets goals for CI operations in 2008 will not be met.

As of September 1st, Rikshospitalet has performed 25 CI operations on adults. – We will not be able to achieve the goal of 100 operations for 2008, Rikshospitalet says in a statement.

The former health-minister Sylvia Brustad (labour party), ordered Health-South-East (Helse Sør-Øst) to perform 100 CI operations on adults. Despite the warned budget cuts at the Otolaryngology-section at Rikshospitalet last winter, the State Secretary Rigmor Aasrud from the Health and Care Department (HOD) stated in February 2008 that the order for 100 operations remained valid.

For all the adult patients in line for CI examination to decide medical eligibility, waiting to get back to working life, this is a very meager comfort when the summer turns into autumn. Leader for section for hearing, chief medical officer, Marie Bunne, says to Din Hørsel that they only managed 25 operations on adults so far this year. She does not deny that the hospital is in a very difficult situation on the background that the order was for 100 operations. – We do our best, but we will not be able to meet this order, she states.

Can not reach last year’s capacity

Last year the Otolaryngology-section carried out 50 new operations on adults. – Given the present situation, we have great challenges exceeding that number, she informs. Her analysis of the situation is that the hospital has been given an order without the needed resources. In order to fulfill the order, the section need an increase in the resources of 33 percent. – We have the countrywide responsibility for operating CI into children. They are given the highest priority, and we are able to operate all the children, Bunne says. The Rikshospitalet has a capacity of 150 operations per year. Included in this figure is also re-surgeries and some number-two implants. Bunne informs that the hospital faces huge challenges in respect of reaching this capacity after the budget cuts earlier. The Otolaryngology-section had no reduction in number of positions, but the capacity for CI-surgeries are directly related to the fact that the hospital are saving the number of beds and operating rooms available, she informs us. This fact disables us from reaching our normal capacity, the chief medical officer states.

Medical priorities

The Otolaryngology-section also receives other patients that are prioritized before adult CI-surgeries. – Cancer patients and people with chronic destructive ear infections. The chief medical officer makes a point of the follow up post surgery. In many ways the patients become life-time clients with needs of controls and support when problems arise. The Otolaryngology-section faces an accumulated amount of patients that has received CI and need regular follow-up. – If nothing is done with increasing the budget frames in accordance to this increase in demand, our ability to help new CI-patients will most certainly decrease.

The section leader is not happy about the situation Rikshospitalet faces on the subject of new CI surgeries for adults. – We are forced to make painful medical priorities given the extremely tight budgetary situation, she says. She continuously reports status at the section and what resources the section is in possession of. – The hospital management are aware of the contradictions between resources and the formerly requested results, she states.

Staff willing to sacrifice leisure time for shorter CI-queues

The section leader has a few short-term strategies that might improve the situation a little. – By the end of the year we will perform some CI-surgeries as “day-surgeries”, meaning that the patients won’t spend a night at the hospital after the surgery. The knowledge around CI surgeries are now so solid that the medical staff thinks it is about time to run a trial for this “CI day-surgery”. But this will in best case scenario mean that the hospital will be back to “normal” operating capacity (my comment: i.e. 50 surgeries, still only 50% of capacity as ordered by health minister). It is not the lack of will on our part, she continues. The section has very dedicated staff. – We could have been able to reduce the waiting time a little by performing CI surgeries as “projects”, Bunne informs us. In clear text it means that the staff are willing to use their leisure time to perform surgeries. – Such a solution demand that further funding are released, she says. The chief medical officer has herself taken initiative for investigating the possibility if resources from the “faster back to work”-fund can be release to such a project…

In the Queue of my life, no 44 – (Part 3 of 7)

…article continues…

 

Invest in my health

The health bureaucracy system has grown into a monster that seemingly no one is able to really control. The health care costs money, we all know that. But now I have cost the society more money in welfare benefits than a surgery on both ears costs, and I still have to wait another year. I lack words in an attempt to describe how pointless and Kafkaesque I think this whole situation is, he says resigned,

He observed the budget cuts at Rikshospitalet last spring with disbelief. Cutbacks on bed-days and OR time has direct effect on the capacity for CI-operations.
– My point in this mess is about the dividend between what we as a nation invest in health and what is being used for welfare benefits. In my case the state bleeds money totally unnecessary. To illustrate the pointlessness of it: this money could have been spent on further increase in CI-surgical capacity, improving after-surgery-support capacity or more cancer treatments at the hospital! It is a vicious circle: the more you save on health, the more money leaks into the welfare and the less BNP we are able to produce. My opinion about this is that it is an example of irresponsible management of the taxpayers money, Ulf says.

Ulf challenges the authorities to think of everybody who waits in health-queues as valuable customers to the hospitals and for the society.
– If our hospitals don’t have capacity to operate, it is about time we allow immediate treatment in other countries. The capacity is there. Economically we save money, no matter what.

In the Queue of my life, no 44 – (Part 2 of 7)

article continues…

Psychological burden

Ulf is a part time dad for an 8 year old boy.
– It is demanding for me as near deaf to be single dad for an active toddler which is very communicative. For me it developed in an unhealthy direction where I problematized the whole situation and got psychological problems. I “buried” myself in problems and developed insomnia-issues.
– Sleeping disorders are often closely related to one’s general well being, he says. He his grateful for the existence of “Center for hearing and psychological health” at Gaustad in Oslo. This center saved me, he says.

Has a dream

The big dream is to get CI on both ears.
– Next step is that I hope to be able to realize a career and get up someplace where I can make a difference.

I feel I have so much inside me and that I have a good grasp of the world around me. I believe I could make an impact someplace. In order to accomplish such a dream, I am totally dependant of the tool an advanced CI-implant represents, he says.
– In regards to my relationship to my 8 year old son, it is a dream that I have more surplus in order to stimulate him further in the direction of knowledge and activities. I simply hope I can become a better father, he says.

He fears that the dream of simultaneous bilateral CI remains just that; a dream. Today there is only children that automatically has a right to get bilateral CI. For economic reasons most adults only receive unilateral CI and the burden of proof is on him, in order to prove that he will benefit better from two rather than one CI. This provokes the 36-year old.
– If you develop bad eyesight on both eyes, would you be happy to have to document that you need glasses on both eyes? – It’s just plain outrageous, Ulf states.

My story got published

A few weeks back the latest issue of the membership magazine “Din Hørsel” (“Your Hearing”) was sent out to all members of the Norwegian Association for HoH. In this issue is an interview with none other than yours truly 🙂

I’m proud to be a small part of the fight for better medical care for people who need CI in Norway.

So far I have received no official responses to this. I keep hoping it’ll tickle into the minds of the people in positions to do something about this difficult situation that hundreds of people like me are enduring here in Norway.

I will of course translate this article to English, but you have to be patient with me, since I will be attending a school reunion this coming weekend.

I’ll be back!  🙂

Costly health-savings in Norway

(Published in Aftenposten (link is to english version) Aften Friday June 27th 2008 page 19. Translation slightly adjusted and abridged for non-Norwegian readers))

 

To wait year after year for a operation that is expected to enhance my level of function is meaningless and represents an irresponsible management of our society’s common economic funds. The Norwegian Government is pumping out enormous amounts of unnecessary welfare-money to patients that are forced to wait for a considerably long time for their solution in health-queues.

I have recently become deaf and I am a father of a lively 8 year old. I have waited for more than one year here in Norway for a operation known as Cochlea-implants. This operation is available at Rikshospitalet and is designed to give me improved speech comprehension. The level of functioning and performing will most likely be radically improved as a result. Rikshospitalet has given me a guarantee of treatment expiring early 2010! (it means that before that date, I have no other options than to wait for the hospital to offer me the treatment. After that date, I am eligible to get the surgery done in another country and thus covered by the Norwegian state.)

Really expensive health-queues

It is pure madness that medically disabled people aren’t treated fast in order to step back into the lines of tax-contributing citizens. As a receiver of medical welfare I burden the society with tens of thousands of Norwegian crowns every month. I am a IT-worker and Norway screams for more heads and has done so for a long time now.
Within this last year the sum of welfare spent on me is the equivalent of a complete surgery on one ear. As I write this I estimate that it has reached the amount equivalent to simultaneous surgery on both ears.

The real results

I watched the process of cutbacks at Rikshospitalet a while back with disbelief. I was interviewed about this on NRK about this on February 27th this year.
Where is the connection between health and welfare in Norway? The money is far better spent on faster treatment of patients. Isn’t that an obvious investment??

”Faster back”?

The Norwegian Parliament authorized the establishment of a 604 million NOK foundation in 2007 called “Faster back to work”. The funding of this foundation continues and are even expanded in 2008. This foundation can be the beginning of what I think is needed.

Why can not Rikshospitalet apply for funding from this foundation for my CI-operation? Can someone explain to me why the guarantee for my surgery has been set to 3 years at Rikshospitalet? Who decided this and what criteria is the basis of the decision? In my opinion it would be better if I had been given the freedom to seek my treatment elsewhere given the fact that the Norwegian health-system know I have to wait 2 or 3 years first!

New dogma for a new time

I challenge all parties involved to think of everybody who wait for health improving operation as valuable clients/customers for the hospitals and society! If the hospitals fail to meed the demand for treatment, I believe it is about time we allow for immediate international treatment. The capacity exist in other countries, and economically we all save money by doing so!