9 1/2 month: My story on national television

March 11th 2013 the most acknowledged health program on the national television channel in Norway, NRK Puls, did a reportage on my story. This was in the context of “The modern patient” – we who don’t wait for our doctors to recommend a treatment, but pursue a treatment and go ahead on our own. I was very pleased with the program – it is scary to be exposed like this on your most vulnerable, but NRK are very professional and the angle was very representative for how we experienced the process.

I suppose the language will be a problem for many of you, but if you just want to look at the filming, there are three sequences with me in the treatment process, giving a good impression of the experience, and a studio-interview in the end.

http://tv.nrk.no/serie/puls#t=0s

This is me and the program host right after the studio interview:

Elin og Helene etter intervjuet

9 months: Spring is coming after a tough winter

First: Sorry for not blogging in english for three months. I hope you have been able to translate the norwegian blog via google.

This will be a short summary, and a update now that I am 9 months post transplant.

during the winther, I have had a rough cold both in december, january and february. It is obvious that my new immunsystem needs a lot of practice! The problem is that they act like 7 year olds playing football: Everyone following the ball, no one takes care of the rest. So the improvements from the autumn has mostly been gone this winter.

There has been some good things, though. A short trip to Florida to celebrate the new year, beautiful weather, nice to visit family. We actually rented a bike in Miami, had a totally perfect two hour ride on South Beach, gave me a lot of flow-feeling to stay with me for a long time.

I started the nwe year with a “portfolio de-cluttering”, realizing that I have to consentrate on the things that are most important for me in the future, and that I must accept that I probably never will be able to multitask at the level I have done so far.  So I have to prioritize the things that is really important to me: My family and my job.

So, now I am 9 months post transplant. And after some tought winter months, things have finally changed. They have changed mostly because I have managed to get back to the mental platform I was on before Sweden: Noticing what is working, what is good and what I can do. I do yoga twice a day, I medidate and do physical training.

I am working again, holding a lot of courses. It is hard work, long days and intense concentration. So it is so wonderful to be able to do it just like I want to.

The physical improvements are noticeable again: My left leg is almost perfect, my hands are stronger…a lot of small, almost not noticeable improvements.  Today I went for a walk around the neighborhood. I turned on the gps-app, but soon realized that any comparison would be fuitless: In Tonsberg the snow is melting, the roads are incredible icy and slippery, I had to tip-toe carefully, walk in the snow on the side, wait for driving cars….. At home, I checked the time. 20 seconds faster than the same route in august! This is wonderful, and means that the changes has been so small, and even so important 🙂

My roject evaluation, originalle due at 6 months, was supposed to be done at a hospital nearby. But they refuse to help me. The reason? “We offer specialized rehabilitation for pasients with neurological diseases.”  Well, maybe that means that I no longer have a neurological disease?  I am still working on getting a real evaluation in may.

The most exciting right now: On monday march 11th, the Norwegian national television will present my story, NRK Puls. I am really looking forward to that 🙂

6 months: Slowly rewinding

Oh yes, it is working. No doubt about it. Slowly, I can notice improvements. Saturday was my 6 month anniversary for the HSCT, and the progress is very positive. I can sleep for a whole night, and drive for 1,5 hours without stopping at any gas station to pee. I am writing normally on the keyboard. I can hold courses for a whole day without planning when to sit down, and what to hold on to. I can be instuctor for the TKD children and move almost normal, and even show some techniques. I still get special treatment on my own training practice, but I am able to work on the basic techniques, I can even stretch without my muscles totally panic.

I challenged myself on saturday. Before I left for Sweden in april, I ran 400 m on the outdoor running track. I was sure that would not be an option in november, because of the snow. But did we see any? Absolutely no snow – and no excuse. It was a cold run, and I had to walk for some meters in the last curve (I might have been able to run all the way if there had been two televison camera team like in april…), but managed to do something like a sprint to finish the run. In april the time was 2.36, now it was 2.48. But the word “run” and “sprint” are wrong, I hardly broke the rules of race walk…… The run in may will be different!

My neurologist had forgotten to send the application for the rehab-hospital, so the 6 months check up there will be delayed. I am halfway through the vaccine-programme, and everything is fine thanks to the people working in the chemistry.

My blood tests are finally all good – late october (by 5 months) all my values were inside the reference area. Finally!

I just wanted to show you the picture of the geographically distribution I have on this blog:

I hope this interest will indicate the pressure that eventually will be put on the doctors to offer this treatment world wide. We are a big and international group holding each other informed and updated on the treatment and the results. There will be impossible for the doctors to ignore this. When I first heard about this, I only knew about Hanna, George and Carmel. When I was in Stockholm, Kevin and Melissa was treated at the same time. Today I am aware of more than 10 people getting HSCT all over the word at the same time: Karolinska, Heidelberg, Tel Aviv, Bangalore, Moscow, Johannesburg, Chicago….. Heidelberg has now accepted both SPMS and PPMS for this treatment. I really like the development. Even norwegian doctors will have to keep updated eventually 🙂

I am looking forward to the rest of this adventure!

 

Week 25: Speed record

This week is my second consecutive week with intensive coursing – today I have finished my third 2-day course in Project Leadership, and I have another one tomorrow and friday. I love holding these courses, but it is quite tough, being on stage for 7-8 hours each day – yet: I am feeling great, and these two last days I have been on high heels all day!

Today I walked to a dinner meeting after work, and after that I did one hour of shopping. And then, I made the speed record on my walk back to the apartment: 400 meters in 3 1/2 minute – thats a speed of 7 km/h – or 4,3 mph. Its the fastes I have walked (in new time) – and just one minute longer than running 400 m in april. After that exhausting day! So happy and proud, and it just confirmes what I have been thinking this past week:

YES, I am feeling better, YES, it is working, YES, it’s reversing old damage, YES, it was worth the money 🙂

And yes, I will probably fall hard after this rise, but I am used to that now, and it doesn’t matter as long as the trend is so clear!

Week 24: Train and streetcar

I love being back at work. It is exhausting to be “on stage” for 7 hours each day, but I get so much energy and inspiration from my seminar-participants 🙂 This week and next are really fully booked, but I could obviously not keep up this pace for a long time.

I stopped taking the train in june last year – and I stopped taking the bus and streetcar to the venues a long time before that. It was just too exhausting – and to scary, walking stairs with the suitcase, the distance to and from the station, balancing into the trains….  Well, yesterday I took the train to Oslo (1,5 hours) and today I took the streetcar from the venue. The walking, the carrying, the balancing went all well – and I didn’t get as tired as I feared. I am not all fine with this, but I am optimistic that it will continue to get easier with time.

I want to set a new standard for how I relax after my courses. Instead of just sinking down in front of a screen, today I did almost one hour of yoga, stretching and meditation. The balance is worse again – probably because I’m tired – but otherwise it felt wonderful 🙂

Week 23+ : Back at work

I am sorry for sunch a long time without any updates. In general, I can say that I now – 5 1/2 moths post transplant – are feeling much better, I definitively notice improvements from before treatment, and I am now back at work.

I just love being back at work. I just have to acknowledge that this is my priority now, and I will get more tired than before, so for a periode it will all be about work, rest, eat and sleep.

I started getting back to work with participating on a lot of couses and seminars. That was fantastic inspiring, giving me a lot of ideas and energy for my new working life. Noticing that I am able to follow normal schedule, using high heels, being concentrated and create a lot of new stuff – it is all very energizing.

On the other side, I just have to realize that the progress is very much like one step ahead and two steps back again. I still struggle with the muscle cramping, weak right leg and drop foot when I get tired. But even though I am impatient to notice more progress – there is no doubt that there are improvements on previous damage. I have better balanse, I can walk further and faster, and there are a lot of small signs that might be subjective, but absoultely positive. Now I just hope that there will be possible to measure the progress on my 6 month evaluation.

Day 125: I am able to run!

Two things today: Blood test and going to the gym.

Was at my usual doctor, to get a blood test. I have struggled with strong muscle kramps, especially bad this night and morning, so I am curious if this will show on the test. And I am starting vaccination next week, that will be nice.

This evening, I went to the gym for my first class-practise in about two years. Too early for the Body Combat and Core-classes, I went for the Body Balance. Not sure if i would be able to be there all the time, but i did! It was a wonderful class, with some yoga, balance and core, and I felt comfortable modifying the wxercises I’m not strong or flexible enough to do yet.  Walking home in the rain, feeling good, and 150 m from home I got this urge to run. So I did. Dropfoot is a real hazard, but I managed, felt so energetic! Average speed: 6 km/hour. Ok, inside the house I am now dragging a right leg feeling like a timber log, but that will pass 🙂

4 months

Yesterday, mondag september 24th, was the 4 month anniversary for my transplant. And do I register improvements? Oh yes! On a lot of areas, I can see significant improvement from before transplant, my walking ability is approximatly like it was a year ago. I have considerably better stability and balance, showing when I do yoga, and when I walk longer distances. I still struggle with my right leg, dropfoot and a unstable knee, but I can walk faster and longer than before.

My challenge nowadays are the muscle cramps, making it difficult to stand up (at least without looking 90 years old). Well, people buy expensive muscle stimulators on TV-shop, I get mine for free both day and night….. I am taking blood tests now, to se if lacing of minerals is causing the “electrolyttrubbning”. Would be nice if there was a pill for this.

A small trip to Barcelona convinced me that my walking is better now than one year ago. I was able to walk 8 km (5 miles) in total one afternoon. The interesting thing is that I started out feeling exhausted (and worried about toilets), but got better as we went. Some food, coffe and shopping along might have helped. Got really traumatized in one of the fitting rooms – why do they have to have downlights? Do they understand what your skin looks like in that light?

We spent a lot of time in Sagrada la Familia, the worlds most fantastic church! And we took the elevator in one of the towers, and walked the stairs to the top. Fantastic view, and amasing to be able to walk those narrow stairs. And I have been walking outdoor without the wig for the first time 🙂

My biggest challenge now is to focus on the improvements, and not the distance yet to go until I am “normal”. I have come a long way since june! yesterday I had my first real business-meeting, and I hae participated on ordinary courses – just to get in the modus. I am really looking forward to working again!

Day 100: Alive and kicking!

When you read about HSCT, and especially the risks involved, most papers focus on the survival rate at 100 days. I would like to contribute to this statistic: Today, saturday september 1st 2012, it is 100 days since I got my stem cells back. And I am feeling real good!

Today, I re-opened my membership at the gym, and got a really heavy full body work out… no, wait, thats next year. I did walk very slowly 1 km to the gym, did some exercises – very careful not to strain any muscles – and walked (a bit unsteady) back home. It all took about one hour, and I finished at home with some basic Taekwon-Do exercises.

For the first time, I am positive that I experience improvement from before transplant, I definitively have better balance 🙂

I don’t care that my vision got a bit blurry afterwards, this is how I have always expanded my abilities: Push and rest, push and rest. So I really deserved my 30 minutes meditation in the late summer sun afterwards.

3 months – break even?

I am three months post transplant, and I think I can say that I am back at the same level of energy and physical endurance as I was when I left for Sweden. I compare this to a project, and I think I am going brake even now, ready to harvest the benefit!

On day 90 – last wednesday – I  was back in my TKD Do Bok. I didn’t do much on training, mostly basic techniques and stretching, but it was great to be back!

Saturday 24th of august was the 3 month anniversary, and we celebrated by getting a surprise in the mail from Stockholm Care (Karolinskas International Office). The final settlement shows a total of nearly 400′ NOK (about 68 USD), and we get 230′ NOK (40’USD) back, after prepaying 630′ NOK. I am so grateful that I didn’t have any complication, since that obviously would have led to a higher total amount. At the same time, I am so proud that I managed to do my “mental yoga” in the toughest week. I was so afraid to get pneumonia as a complication, and without any scientific evidence I still believe that my nightly breathing exercise helped me here. So what do we do with the refund money? We pay it back to the bank that loaned us the money…..