M@rie site

2012 :)

2012-01-08T03:42:00.003+01:00

Hello long time!

Now is it a new year (2012). I hope this new year will good. January school start again (10th) it Will be 1,5 years left to i have finished my uni programme. I looking forward to that day.

19th i have cf and diabetes clinic, i looking forward to try mix insuline (lantus & humalg) in one pen and you not need to inject yourself with insuline more than maybe 2-3 times/day. Now i take lantus longacting insuline in the morning and humalog everytime i eat, it be at least 6-7 times/day.

2th of february 5th transplant anniversary yay i goong to my transplant center for an check up. To see everything is all right.

I also wait to get a time for kidneystone surgery. Hopefully soon! The kidneystones keep building up :( and the docs don't know why.

This is my plan for the comming months. I hope i can be abel to travle this year too.

Summer

2011-07-17T00:16:00.008+02:00

www.wtg2011.com

Hello

It has been a busy year wuth school. its finally summer yay :D so far this summer i have been to Gothenbrug, Rome, Italy and to my home town. They held the WORLD TRANSPLANT GAMES In Gothenburg this year and i went there as an volunteer. Tried to answer people´s question about organ donation and handed out organ donor cards Hopefully people sign the organ donor cards as uts important, whether they say NO or YES to organ donation. Because other people will learn about it and rhan it is easier for your friends and family.

Rome, Italy 4 days.
I was there with my sister. we had a good time. Walk alot to see the tourist things. like Colicum.

4 years transplant anniversary :)

2011-02-02T16:04:00.003+01:00

Today is my 4 years transplant anniversary:) It is amazing to me that i have came as far as i have did now due to the bad start with the fungus infection that almost killed me. My life is going forward atm i study a programme at the uni (education of health) it is fun, i live in a studentapartment and love it.
Health: My biggest problem is at the moment my kidneys (37%) and kidney stones, the problem started in 2009 and last year did i have 2 surgies to removed the kidney stones. My lungs and heartvalve seems to do fine. I going for my 4 years transplant check-up 7-9 feb. hopefully everything are ok than.
Hugs

MERRY CHRISTMAS

2010-12-24T14:01:00.002+01:00

MERRY CHRISTMAS AND A HAPPY NEW YEAR
I WISH ALL MY FRIENDS A HAPPY AND HEALTHY CHRISTMAS.
I HOPE 2011 GOING TO BE A GOOD YEAR FOR ALL OF YOU :)
ALL MY BEST /MARIE

Finally :)

2010-12-22T16:39:00.003+01:00

Hey again
i know it has been a very long time like 5months or so since i wrote something on my webblog, but now an update is comming finally:)
I am now one step closer to hopefully finish one of my gols i always dreamed of to be able to get one day, a educatiom. I have started the uni, study a programme called education of health (hälsopedagog) and school is going ok. the programme is 3 years so hope i will be able to study the 3 years now.

Health update
As some of you know i have had problem with kidneystones the past year and in April (2010) i had a surgery to get the kidneystone out it went fine. But in September (2010) the kidneystone problem started all over again so i was to the ER and the doctor said it was kidneystone because i said i had have it twice before, so i got morphine shot and could go home but i went back to the ER a few days later this time also thinking it was kidneystones agaoin i was in so much pain and i could not pee it was pronanly necause i was very dessicated so i got IV´S. After i had have IV´S for awile it worked yay :) but the doctor was not sure if i had urinary tract infection, he said the urinetest was not very clear anyway i did an x-ray and they could not see any kidneystones but the doctor said i should go back to the ER to do a ct scan, i got morphine shots and morphonepills i could take at home (not worked ) but i got home once again not feeling good so i decided to call my CF doc so i got a time there and the urinetest showed i had urinary tract infection and i did get antibiotics.
The ct scan i did showed i had a big kidneystone and once again i had a kidneystone surgery, at my birthday so i was not happy but in the end it went well. the last ct acan i did show it was all clear so i cross my fingers the kidneystomes mever comming back.
My lungs are fine :)
/Marie

The christmas he-goat

2010-12-17T23:54:00.006+01:00

This is a tradition from 1966 in the city called Gävle in Sweden. the christmas he-goat comming up 1th december every year.

little update

2010-04-09T23:21:00.003+02:00

Hey long time. i am doing good, i am studying to get my grades up and tomorrow i going to do the test (högskoleprovet) it can be a easier way to get in to a univerity and be able to choose a programme you really want to go.

It has also been my third transplant anniversary (2/2). i didn´t do so much light a candel for my donor.

i have been to Scotland too some pics comming later.
hugs Marie

This text to the song is really nice

2010-04-09T23:04:00.002+02:00

Have you ever made a wish
a wish for kingdom
for a little brother or sister
a wish that you could fly
be a superhero or a princess
that world was a better place
or scared
sick children could get well and play forever
we make that wish everyday
and through the selfless actions
of dedicared people
well make that wish come true

My swimming competition

2009-12-13T19:14:00.002+01:00

Long time

2009-12-12T19:06:00.006+01:00

Hey long time
i can start with october. In the beginning of october i had really problem with my stomach. I got alot of stuff to get my stomach to work, but it was nothing really that helped. One day i got really bad pain in my stomach , i could not lie down or sit, the best thing was to move around. So in the evening did mum drive me to the ER. There could the doctor say it was kidney stone but it was not only that the doctor was worried about, He listen to my heart and lungs too and said the lungs was great but he could hear some sound that was not normal on my heart. He decide that i needed to stay in the hospital. I did a heart eko (?) test and it was ok. after the hospital stay i should come back after 2 weeks to do a kidney test , to see if the stone had disaper and do a heart ultra sound test to see if everything is ok.
I did both tests and the kidney test showed that the kidney stone was gone YAY. The heart ultra sound test was ok the doctor think it could be the heart valve i got little more than 2years ago that could do the sound but i should not worry yet.
November/December
I have had alot of clinic visits
Diabetes check up it was my best H1abc (long time bloodsugar test) since 2003. so my doctor was very happy. My eye check up . my eyes are the same but not going to be any better i think , my doctor said its not so good idea that i going to cykle or absolutly not drive a car. my eyes are BAD. its sad but i guess its thats life.
I have start swimming and i had my first competition and it whent very well. i got 2 silver medals.
I swimming for the handicap team here in my home town.. i like it.

Hugs/Marie

Lungfunctions test´s

2009-09-16T12:56:00.002+02:00

Hey!15th September. I was to the hospital because i should do lung functions tests. The person who did the tests could not say the results of the tests that do me so nervous because I want to know if it is good or not so good. I going to ask my cf doctor when I do have my check-up.. 28th September do I have the check-up. Wish me luck.
Hugs /Marie

Vårruset 2009

2009-06-05T16:38:00.002+02:00

Vårruset is a race for women . to walk , run . 5 or 10km.
Its in 17 citys around the country.

My mum and i walk 5km and decide we should do it for grandfather because it was on the same day as he died. We should have walk the race even if it had not happend.

<3An angel has come to heaven<3

2009-06-05T12:08:00.007+02:00

25/10-1929 - 4/6-2009

After weeks been fighting for his life with ups and downs. My grandfather lost his life 4th june 2009.

He will be missed.

Breathe easy

Check up at the eye clinic!

2009-06-01T15:41:00.010+02:00

Time 10,30

Check up at the eye clinic.

My friend Johanna was followed me to the hospital.

Sunderby Hospital

We were there in good time, but anyway needed to wait to almost 11.00 even if i had time 10.30. hmm some times very busy.

First i did the normal sightboard test. Today i could only see the big text on the first row:/ .
I got eye drops so my doctor could measure the pressure in the eye´s.In the bad eye the pressure was really low and in the better eye do i not remember what he told me, but ok i guess.
My right eye (the better one)were stable and i could stop with the eye drops.

My left eye has still the oil ,but its to dangerous to do another surgery to remove the oil. If they should do a surgery could the risk be that i be blind on that eye. I Not want that.

I have not much vision left on that eye because the retina is half on the place were it shall be and half loose.

I going to countine wuth the eye drops in my left eye once a day.

My doctor told me they can not do anymore so my eyesight can not improve. He didn´t think it could be any better than its now.

But i still hope it can be.

/Marie

Blood-test day

2009-05-26T10:51:00.002+02:00

Yes every third week a nurse comming home to me and take blood-tests. Its for different medicine. Like Prograf (a rejection med), See so the levle is ok. Other blood-tests too.

/Marie

gultzaudden

2009-05-19T23:36:00.019+02:00

Marie and Johanna.

Pictures from a beach (gultzaudden) near where i live. It is not as big but a lot of pepole use to be here in the summer, and very nice area to walk around.

My friend and i took a walk after dinner. It was nice and really good weather. We use to walk almost every day. It is good training for my race that my mom and i going to walk. it is 5km.

/Marie

swimming

2009-05-17T22:48:00.005+02:00

I have start swimming. Once a week, Good training. I really want to

compete in the European Heart & Lung Transplant Games. It is in Sweden next year :)

The 13th European Games will be staged in Vaxjo, Sweden.
30th June - 4th July 2010.

So i hope i can be there.

Hugs/Marie

SNOW!!!

2009-05-02T22:30:00.002+02:00

May and it is still snow outside... But not so much :) I looking forward to the summer and warmer weather. The spring is comming quckly now but no so warm yet 7 c deg.

/Marie

London . England

2009-04-23T23:17:00.014+02:00

Shopping in London!
From friday to monday (27-30/3), Yeah ofcourse not only shopping but almost. :) My friend and i where out to a club one night, it was fun and the feeling to have energy to dance all night is really good. So we had a good time but our feets did hurt a lot but not only because we whent out we where shopping in the afternnon:).

Shopping at Portobello road market, is a big market with a lot of things.
Oxford street , lots of stores.
In Victoria where we had our hotel did we not find much but it was stores there too.
Starbucks and coffe latte :)

We really want back to London. maybe to the olympics, who knows. :)

Hugs/Marie

Hello

2009-04-23T22:11:00.001+02:00

Teneriffe

2009-04-15T10:37:00.010+02:00

One week in Teneriffe (Spain). I had a good time , nice swimmingpool, and good hotel. The days were mostly ok with sun but the weather was not that warm like 19-24 c deg. But anyway as good so you could be on the beach and swimmingpool. Good restaurants around the hotel. :)

We did one turist thing "the yellow submarine " 25 meter under the sea level, there we saw fishes . It was cool to see not the ordinary you use to do. The only chance for me to be 25meter under sea level because i´m not allowed to dive with tubes. Because of my transplant and hearvalve surgery, it is to risky.

/Marie

SHOPAHOLICS BEKÄNNELSER

2009-03-25T20:55:00.004+01:00

SHOPAHOLICS BEKÄNNELSER

Emile (my contact person) and i was to the cinema and saw Shopaholics
confession´s. The movie was fun and romantic :).
It´s about a girl who like to shop a lot,

Movie

2009-03-16T22:33:00.004+01:00

A really good swedish thriller. Men who hates Women. based on a book.

I saw this movie with my mum and her boyfriend. Time 2h 32m. It was really worth to sit that long.

Scale 1-5 stars, I get the movie *****

Stockholm today and tomorrow

2009-03-06T23:12:00.003+01:00

I am in stockholm, Swedens capital. Today and tomorrow:D To visit my best friend and go shopping, drink latte :P and just have a great time.

hugs/Marie

My 2 years check up/ 2 års kontroll

2009-02-13T22:26:00.005+01:00

Finally a update from my 2 years check up.

At monday 2th february , my mum and i flow to Gothenburg, We had a nice day and only relax at the hotelroom. In the evening we ate dinner at a china restaurant because it was my 2 years anniversary day.

3th february
Hospital day, lung x-ray, heart ultrasound, eye doctor check up and kidny test.

4th february
Cykletest, all diffrent lungfunction tests and met my lung tx doctor.

Everything was good, only some changes of medications.
Now 2,5 mg predisolon, got some iron tablets because my HB was to low.
My doctor will lower my fungus meds to the summer if i get the side-effects back. Sensitive against sunlight, redness and acne in the face. Not fun at all, hope it is better to the summer.

Keep your fingers crossed please.

Hugs /Marie

Suport childrenhearts !/ Stöd barnhjärtan!

2009-02-13T22:11:00.006+01:00

Give more childhearts the chance to pat longer!

2 years with new lungs/ 2 år med nya lungor

2009-02-02T11:42:00.004+01:00

2 years with new lungs yeaaaah :)

I going to Gothenburg today, for 2 years check up.

Hugs/Marie

2 years ago since i got the call for my lungtransplant :)

2009-02-01T19:35:00.005+01:00

2 years today 1 february since i received a double lungtransplant :)

I light a wax candle to honour my donator today . A round lunch time 1 february 2007, i got the call for transplant.
I still remember what i did that day. I am so grateful to got a second chance of life.

Even if it is a very sad day for a famliy out there today. But they took a good decision. I an grateful :)

My transplant day is february 2th, because my surgery took very long time.

Hugs /Marie

magnification

2009-01-28T11:12:00.004+01:00

The magnifying glass i use ,so i can chat on my computer. Wish i could have the magnifying programme to my laptop, but so far the programme is not working on my laptop.

Förstoringsglaset jag använder är för att jag ska se när jag chattar, skriver email etc på min dator. Jag önskar att jag kunde ha syncentralens förstorings program som finns till datorer, men det programmet funkar inte till min dator. Datorn bara chrachar. :(

So i use my mums old computer because it is better magnifying on that one but still not sufficient .

Jag använder min mammas gammla dator för att det är bättre förstoring på den, M en inte tillräkligt ändå.

/Marie

A good day outside

2009-01-24T20:31:00.007+01:00

Hello i had a good day outside today. a nice winter white day, perfect for iceskateing. a round the habors in Lulea. The ice was ok.

After a nice day outside we (my sister, her boyfriend and i) whent home to change clothes and get ready for a sort walk in to the city, to most "window shopping" but i did´t buy anything . So after that we whent to the icehockey arena(Coop Arena) where our ice hockey team playing their games (Lulea hockey). they was playing aganist a team called Sodertalje and won with 5-0 yeah :) 3 new points and closer to take a safe place in the playoff :)

I had a awesome day . :)

Hugs/Marie

Nice Text

2009-01-15T21:06:00.004+01:00

Ta aldrig någon för givet. Ha alla dina vänner nära ditt hjärta, för du kanske vaknar en dag och upptäcker att du förlorat en diamant när du var för upptagen att samla på stenar. Det är bättre att ha få diamanter än många stenar.

Comming in english soon

cf clinic check up

2009-01-09T08:50:00.003+01:00

I had check up at my cf clinic, i did lungfunctions test (50%) the same as last time. my sats was good 98-100% amazing. even if that was good i got antibiotics (heracellin 750mg) 2x3 /day in a week. because of my bad cold. start the meds today. hope it helping.

/Marie

2009

2009-01-01T15:06:00.007+01:00

Yes a new year . 2009 .
i hope it will be a good year for many people. hope rhe wishes comming true.
A HAPPY AND HEALTHY 2009

Ett nytt år 2009, Jag hoppas på ett bra år för många människor. Att drömmarna slår in.
Glatt och friskt 2009

White Christmas

2008-12-25T23:45:00.005+01:00

We got a white christmas ...again... it is so nice. Today my mum,sister and i did go out for a walk this morning, and this pics are are from today.

/Marie

Extra check up at the eye clinic

2008-12-18T13:57:00.004+01:00

Today at 8,30 i had a check up at rhe eye clinic. just to be sure everything was ok. yes it was mostly ok and its NO sign of the fungus infection good news ,the infection is gone yeess so could stop the antibiotics now. but i still have inflamation in the eye , so i got back some eyedrops and going to countine with that to i meet him next time, hm in january.
Its clearier than before but i still see black dotts,just hope its no fungus dotts,anyway nothing what my doc could see. i still not can read normal texts ,like on the computer,books etc just hope it going to be better soon.
So my wish for x-mas maybe not be true.
Hugs /Marie

:Pontus bowling luleå

2008-12-18T13:29:00.006+01:00

Yeaaah i have christmas holiday now whoohoo. Today as the last day in school my class where to the bowlinghall. it was a lot of fun.

http://www.bowlingkompaniet.nu/index-filer/Page403.htm

Hugs/Marie

Swedish idol 2008

2008-12-13T00:53:00.004+01:00

KEVIN BORG

http://www.youtube.com/watch?v=pfPj9dDywwk

The Swedish idol 2008 Kevin Borg
Listen to the winning song idol 2008 by clicking on the link.

eye update again

2008-12-09T19:42:00.004+01:00

Eye update, the medication i got to treat the infectionwith did not help at all. so i called my doc ,and i got a new medication and he said if this not help in 2 days you must call back and probally come in for a check up. and we decide what to do than.

keep your fingers crossed it will help.

hugs/Marie

eye surgery

2008-12-05T15:02:00.003+01:00

eye surgery
As you know i had my eye surgery on november 27th, The operation took 3 hours a bit longer than normal (1 hour.).because she (doc)was very vareful and took it easy. the operation whent fine, going to take awaile to i see any diffrent . but they could not say how much better it could be, just hope for the best.

4/12
I had a checkup at my hospital here in Luleå, my eye look ok but i had a infection sadly, so i got antibiotics for that. so hope it will clear soon,

Hugs /Marie

Icehockey

2008-11-24T17:29:00.009+01:00

Luleå vs Skellefteå today 9/12.

http://www.luleahockey.se/
22/11-08
Icehockey game . Lulwå vs Brynäs
It eas a good start from Luleå hockey. They did 3 goals but than Brynäs did 3 goals too and over time. not much happend so 1 point to both teams . But Luleå hockey is still on playoff place.
/Marie

2 weeks left

2008-11-17T00:16:00.005+01:00

On the 27th of november i going to have hopefully my last eye surgery. Going to be in Gothenburg at the eye specialist hospital. They going to take away cataract in the eye and maybe the oil too witch has protect the fungus to do more damage,So will see how muxh vision i can get back after the surgery. Hopefully can i read on the x-mas presents this year. :)

Keep your fingers crossed for me please.. I need it.
/Marie

My birthday

2008-10-15T18:18:00.005+02:00

I am 24 years old today jippi:)
I have been in school today and then to the city.
hugs

School

2008-08-29T08:43:00.004+02:00

The news i have start school, a course in english a. i hope fo get a higher grade. it going ok so far.i hope to be finished with this course as soon as possible. two days per week, its enough for me at the moment. because i get very easuly tired,from starr on the computer,listen to books. then i use to get a headach

hugs/Marie.

In Stockholm and met Marjolein

2008-07-18T01:20:00.006+02:00

16/7-2008. Stockholm our capital. Alice (my little sister)and I meet Marjolein,her sister and two friends to them when they came to Stockholm for one day. On the way on their Scandinavia trip. It was a ok weather both sun and windy. We whent to alot of stores and had lunch break were most of us had chickensalad,the chickensalad was ok.icecream did we have too,really nice.

It was a really great day.and fun to meet Marjolein again plus the other pepole too.

Hugs/Marie

Holiday in Alicante,Spain

2008-07-18T00:21:00.007+02:00

I have been 2 weeks outside Alicante (in Spain) with my dad and sisters plus a few more pepole. We had rent a house so than we had our own swimmingpool.it was also 2 cats that we didnt know if they belong to the house or not,so we gave them catfood so they not should run around and jump up on the chairs everytime we should eat. so their nickname was micky mouse and mimmi pigg. We whent a few times to the beach and it was really nice too.One day we whent to a safaripark where you could go by car the first small parks and than the last park you could walk around and look at animals.it was great.the weather was almost great the whole time we where here in Spain-

hugs/ marie

eye check up

2008-06-06T18:32:00.006+02:00

June 4th eye check up at the hospital. it whent really well even if it was nothing changed from last time. but more hopefull news. in the end of summer i going to decide if i want to do another eye surgery,and than if i say yes to that,the surgery can do so my vision be alot better and i not need plus 6 on my glasses. sounds promesing if it going well.

lung and diabetes check up

2008-05-20T17:31:00.006+02:00

its on the side of the hospital.

hey today i had 2 check ups at the hospital. first at my lung doc. i did lungfunctions test and it was between 45 and 50% a bit lower than last test i had done but not to worry so much just check at home so it not going lower. my weight was up yea so not need calogen drinks atm but we save the drinks we have left in case. my kidney test was normal that was amazing. sll in all my doc said i looked so much better than last and was happy.

So to next check up,it was to my diabetes doc, and i asked about a insulin pump but she wanted that i should wait till my bloodsugar was more in control.ao now i going to take more insulin when i eat to double as much as before.for exempel 2units but i take than 4units. and my lantus change that to 14 unit inatad of 12unita.

it went well today

hugs, marie

My trip to the Netherlands

2008-05-10T16:25:00.015+02:00

Fainally i got to meet Marjolein.i was in the Netherlands from april 27th to may 7th.it was 10 really good days.im so happy it fainally met when we had talk about it so long. We did alot of things.like whent to a swimmingpool,shopping,museums and more. i hada really fun and great time there.

d

Marjolein and her family are wonderful persons. really great to meet them. i looking forward to meet Marjolein and her sister in sweden this summer.

HUGS

/Marie

Msries miracel

2008-04-10T13:15:00.006+02:00

Maries Miracel,

Happy tears tonight.

CF SHOW

2008-04-02T17:32:00.008+02:00

Swedish cf buterfly

HEY THIS IS SOME PICTURES FROM THE SWEDISH CYSTIC FIBROSIS SHOW. iT WAS A GREAT SHOW WHO COLLECT MONEY TO CYSTIC FIBROSIS RECARTCH.

Easter holiday

2008-04-02T14:41:00.005+02:00

Hey the time fly away and easter has past now.it was a great easter with lots of food and lots lots of candy. i was sick too i hadstomach virus and stayed some days in the hospital,but im doing alot better now. i start to get my muscles back so i not use my wheelchair now.

monday march 31th we had a cf show in stockholm to do so ppl know more about what cf is and collect money to cf. it was a great show.

quick update

hugs
Marie

pic

2008-02-08T14:08:00.002+01:00

update

2008-02-08T13:23:00.002+01:00

Hello everyone

Now it is a new year 2008, i have been on iv antibiotics again for 10 days to get the infection under control. i was to my transplant center feb 3th, all tests was ok so i didn t need to do a bronc,yeasterday i was to the hospital in my home town and took away my needle ,cvk in the neck.. yeahhh..

2 February it was 1 year for my new lungs. First i whent to the city with my mum and sister, after awaile my mum and i whent to the icehockey game, luleå hockey vs timrå ik, glad my team won the game 2-1 and i got a new hockey sticker from my favoritte player. I had dinner on a china resturant.. it was a really great day.

hugs/marie

i am back

2007-12-02T20:45:00.001+01:00

hello i am finally back and at home :D. After 4 months in diffrent hospitals. my journy begun a morning when i woke up in grandfatjhers hous, mu left eye was red and irritating so first we was thinking it was a eye infection . this srarted on friday and on sunday when my eyedid not look any better so we called the hospital who was closest my grandfathers city. On monday we whent too the hospital and could see a doctor quickly. Aftershehadlooked in my eye she said this is serius and we must send you to another hospital nnow ifwehavea chans to save your eye.
I was 2 weeks at the other hospital and did 2 or 3 surgries on keft eye. than they could not do so much more after they hadalso tried with antibiotics, fungus andvirus iv meds,so they send me to my home hospital , i wasthere for 1 week and tha n my doctor send me to my transplant center , i shoulddo asurgery on the left eye again but thesurgery didntggo aheas because i got high fever and hard to breathe,after awaile i wassend back to the transplant hospital from the eye specalist hospitak. no one did knowwhat it wasbefore they did aultrasound on the heart and find fungus on one of the heart valves and they pit me to sleep in 12 days before they could do somthing,after that they did a heart surgery and i got a new heart valvethan many hard days in icu,learn to stand up,walk etc again, at last i come to ths transplant ward and my goal was to come home before my birthday and i did even if i spend little nore than a month in my home hospital.
my eyes is both effected now from the fungus and the eyes are still notl not good,but nmy kidnyes are better but still on dialysis2times per week.

hugs.. marie

24/7Sunderbyn

2007-07-24T19:46:00.002+02:00

Sunderby Hospital

Today i got out of the hospital in umea. but only to get a transportation to my home hospital in lulea. They going to try to lowering my immune meds(rejection meds)to get the cmv infection away easier and have a check on the eye too so it not get worse. Still red and not look so nice but anyway better than before :D

Hugs/Marie

Update again 23/7

2007-07-23T19:52:00.002+02:00

Umea Uni Hospital--->

After the operation... still tired..

The eye now, not so nice...

So Monday(23/7) update ,

Today my eye looked the same as on sunday, so not worse anyway. i did a ultrasound on the eye..it was ok i think.. Now we going to see if i can get tablets so i not need iv´s antibiotics. I maybe can go home on Wednesday :)

Hugs/Marie

Update from the operation!

2007-07-22T10:39:00.001+02:00

Hospital-->

Update from the last operation on friday July 20th!
After the operation, still tired!

The Operation went well, They only needed to take out the jelly thing who was in the eye and replace it with water,so not needed a new lens luckily :).

Today is the first time my doctor see in the eye and more clearly than before so its GOOD news :), Its less inflamation in the front of the eye too, but more under the eye is it still more inflamation and they can´t do so much about it.Seems like the medicine helping anyway :).I can´t see any better still but the doctor said it could take a long time but anyway i´m happy with the results today hopefully for more good news tomorrow :).

Some pictures from outside the hospital :)

Hugs /Marie

Umea University Hospital!

2007-07-17T18:23:00.001+02:00

Umea(Umeå) University hospital (NUS)!

Last weekend i woke up at my grandfathers house with a swollen,red eye and couldn´t see at all with it. So we called the hospital in Sundsvall (a city 1 hour from my grandfather) and went to the hospital on monday morning. There they checked my eye and said it was really serious a bad inflamation or infection in the eye, so they send us to another bigger hospital in Umea. I have had a small surgery on the eye were they took some culture to find bacteria. Yes they finally find somthing CMV Virus (not so good). So i´m on medicine against CMV and somthing more i think..

1 week later!
I´m still in the hospital because of eye problem (CMV Virus). Today my eye looked not worse but not better either. So will see what happend.

Update!

Friday july 20th i going to do a second operation on my left eye. They are going to try to get the infection out and do so not my eye is so blurry anymore. They are going to take the jelly part in the eye out and replace it with water. If they find the lens is blurry too they will replace it with a plastic lens.

Thats the plan for now.

Midsummer 2007

2007-07-01T18:07:00.003+02:00

Midsummer 2007

fixing a midsummer wreath

midsummer wreath

Me

All 3 sisters Yeh the midsummer updates came late too. Sorry again. have not been on the internet so much latly. We had a good time. To bad Marjolein could not come this time. but we both decided to take it another time when we both feel better. So looking forward till we meet another time :D.

we did a game and was 2 teams, we should build the highest tower..

/Marie

A trip!

2007-07-01T17:38:00.002+02:00

Some pics from the trip!
Nice Flower

a church in Kalmar!

Long time no updates sorry.

First i can say we (My little sister, dad and me) went to a city called Kalmar, where we stayed for 2 nights. After that we went to Karlskrona, where my other little sister going in school. We pick her up and her stuff. Alot of stuff because when school start to the fall she going to be in another city. We all went to Öland too (a island in Sweden). than after like more than 6 hours drive back we where finally home. tired but happy:)
The map of Öland.
On the way to Öland.
Hugs/Marie

Sweden´s National Day (6/6)

2007-06-06T22:30:00.001+02:00

Today it was Sweden´s national day :). I didn´t do so much only went to a store and bought a pair of shorts :). Later i watched football(soccer) at tv, it was Sweden against Iceland. Sweden won with 5-0 YES! :D

Hugs/Marie

WOW 4 months since my transplant

2007-06-02T16:11:00.002+02:00

Hello now its 4 months since i had my double lung transplant.
Little update on my health so far. My lungs doing very well :) but have had some problems with headache the last days, taking panodil but not help so much.
Hope it will go away soon.

Today Sweden playing a game against Danmark. its for the european champion. hope Sweden win the game :D

Hugs/Marie

Luleå Stadsmara, Saturday may 19th 2007

2007-05-15T14:56:00.004+02:00

The picture from the news paper. Marie walking.

The Map for the race i going to walk! :D

I have walk this race two times before when i was in school.
May 17th 2003. number 5162 GY Time 1:39:23 370 Örnen(school name)
and May 18th 2002.

The race is called Luleåstadsmara. I going to walk 6km and its the last km at the race. I have walk this race 2 times before but than with oxygen. This time i do it without oxygen for the first time YAY.. I so looking forward to this.

More update.
The Start.Im there somewhere :)

223(Place in goal) 3030(start number) time 1:01:52 Diff 40:52 time per km 10:18
I started 14.30 and the weather wasn´t the best. it was raining alot so it took awile to finished the race. I walk 6km without oxygen of course :D it went very well and i didn´t stop at all (only when i drop my glove hehe).

I have not been able to walk a race in more than 2 years because my lungs have not been so good. But now i have new lungs and i was very happy when i finished this race and got my medal.I was proud of myself :). So will see when the next race will be :)
Goal!
Hugs/Marie

Good links :D

2007-05-10T20:25:00.002+02:00

My links do not work on the linkfeld.. so i try to post them here than.

First the Swedish Cystic Fibrosis (CF) website:
www.rfcf.se
Swedish organ donation website:
www.livsviktigt.se
American cf website:
www.cysticfibrosis.com
World Transplant games website:
http://www.wtgf.org/
Cf2chat website:
http://www.cf2chat.com/index.html

Going for my 3month check up at the tx clinic

2007-05-09T13:30:00.002+02:00

Airplane :D

I going to Gothenburg today for my 3month check up. X.ray,lungfunction,bronc tests and meet my doctor. The first 2 days i live at my friends house so going to be fun. When i going to do the bronc on friday i need to stay in the hospital. Hopefully im a 0 this time too = no rejection. Wish me luck.
Sahlgrenska university hospital (SU)
More update
Wednesday (10/5) I was landing in Gothenburg than my friend (Simon) and his dad pick me up at the airport :) Than we went to their house and i meet 2 of Simons friends.We watched tv and a movie. Thursday (11/5) I had some tests in the hospital and Simon went with me (thats nice :D), First i had x-ray,than lungfunction test,blood tests and meet my doctor. Friday(12/5) i woke up 4am because the taxi not wanted to came later than 5am (it took 30 mins to the hospital),i needed to be there 06.15 am yuck tired .. because i should do a bronctest. (look if i had any rejection from my lungs). I got a shot so i should calm down and a sleep pill but i was not tired at all so the nurses believe that i had not take the meds. but i had. Only late reaction on it i guess becaue later after the bronc i was sleeping a long time. hehe...

The x-ray look ok, Lungfunction was ok just a little bit better than last time but good its better anyway. blood test was ok i guess not got the result from the blood tests yet.. Bronc test went ok i was a 0 YAY no rejection at all:) but the bad news i have still some kind of fungus in my lungs,so going to know next week if i need to do somthing about it.

Saturday i had more blood tests, check the level on my prograf meds. I need to change it again to 3 in the morning and 3 in the evening.

Sunday i went home to Luleå :).

But after all i had a great time in Gothenburg.

Hugs /Marie

Ice Hockey World Championship 2007

2007-05-03T01:01:00.002+02:00

Yes maybe another GOLD in Russia!

Yeah Sweden has won all their games so far Yay .
Group A. Sweden - Italy 7-1 , Latvia- Sweden 2-8 and Sweden - Switzerland6-0 :D.

Sweden- Danmark 5-2. So they lost the game against Russia :( Sweden-Russia 2-4
Sweden-Canada 1-4. Brons game against Russia .. Sweden-Russia 1-3.

Ok anyway well done SWEDEN even if we didn´t get any medal this time.

/Marie

May 2th I celebrate 3months with my new lungs:D

2007-05-03T00:45:00.001+02:00

I celebrate my 3months day like this. I went to the city and check out all stores hehe i was looking after a pair of shoes but could not find any with good price and shoes who look good. better luck next time. After i ordered china food( deep fry chicken one of my favo food) to dinner. it was great. In the eveing i watched ice hockey (Sweden vs Switzerland) Sweden won with 6-0 YAY:D. I went to my friend later and watched a movie called just my luck, it was ok.

It was a good day for me YaY :D

Now im on my way to bed.
Hugs/Marie

1 May

2007-05-01T15:19:00.002+02:00

Today it is exactly 3 months since i got my call for my double lung transplant! WOW the time going fast. Allready 3 months :D

Riiiinnnngggg.......

Hugs/Marie

Walpurgis night (Valborgsmässoafton)

2007-05-01T10:18:00.001+02:00

Walpurgis night (Valborgsmässoafton)
Valborg is a day here in Sweden when we celebrate that the spring is coming. Traditional base on the holy Valborgs cult against evil spirit and witch faith. In Finland and Sweden the weekend celebrate through to burn stake (Valborg fires) and fireworks.
Some pictures :)

I went to a beach with my friends. We had a small fire and had a small barbecue. It was nice. We were there to like 01.00 am.

Our fire :)

Than we went to my apartment and play games (TP). It was alot of fun. After the game everyone went home.

Hugs /Marie

fire day :)

2007-04-25T20:07:00.001+02:00

Today i went to the cottage with my grandmother. We fire some trees :) and we ate lunch and had a good time :)

Mathematic course & University courses!

2007-04-17T01:28:00.001+02:00

I going to start a mathematic course but on distance tuition. So i going to work at home and do the tests in school. One of the reson are it´s because i´m not allowed to be around so much pepole at the moment. It has only been 2months since i had my double lung transplant. So must be careful. I do not like math in real but i need to have it so i can search higher education at the university :).

I have also apply for courses at different universits here in Sweden.

1. Medical Genetic (4,5hp)
2. Dutch (15hp)
3. Logical (7,5hp)
4. Business logical ( 7,5hp)
5. Webdesign (15hp)

Hp = university points!

Almost all courses are distance tuition and start in the autumn(fall). Not sure yet if i going to study some of this courses but it´s good to apply anyway.

Hugs /Marie

News Paper Article about me...

2007-04-13T16:20:00.001+02:00

A article in the news paper about me and i told them about my life and i got the call for the transplant. But it´s in Swedish sorry..
The link.
http://www.nsd.se/artikel.aspx?artid=56276&cat=18&pageIndex=0&arkiv=False

Hugs/Marie

Bike day.

2007-04-13T16:07:00.001+02:00

Today it was a lovely day and the spring is coming slowly to Luleå. So i took the opportunity to ride my bike to my moms work (its 4.6km) So i did a good job anyway what i think:D. It was the first time in a very long time i cycle so it was tough speically for my legs. But i did it :)

Hugs /Marie

Happy Easter!

2007-04-06T10:25:00.003+02:00

Happy Easter To Everyone :)

2 months check up!

2007-04-05T00:23:00.001+02:00

Sahlgrenska University Hospital (SU)Gothenburg .

X-Ray machine, Called the giraffe :D

Hello i had my 2month check up april 2 to april 4. The first day i did blood tests,x-ray and lungfunctions test and met the doctor. April 3 i did the bronc test (that show if you have a rejection or not) and than after the bronc test i needed to do another x-ray to see that everything was ok so it wasn´t no bleed or somthing.

The first x-ray was fine no more fluid anymore, i did the lungfunctions test 3 diffrent blow tests and i pass 2 of them, the third one i was blowing to bad :(. My fvc was 1,57 and fev1 was 1,25 if i remeber right hehe. it was pretty good anyway for me. The blood tests has i not get the answer at yet but hopefully they are ok.

The Second x-ray didn´t not look as good as the first one but anyway i think it was ok because my doctor did not say anything about it.

My bronc test went fine and the lungs looked good. After i was really really tired and dizzy (maybe to much sleep meds hehe) I woke up at the tx ward again with oxygen but only at 1/2 liter and after some hours i could take it away yay :). My oxygen sats was 99% really record for me wow .

I can now take 40 mg of the Furosemid and only take 1 calitabs pill. mon,wen and friday. for 2 weeks and than stop .Blood tests every other week now too.

I going to know if i need to countine with the fungus meds or not when i get the culture back from the bronc test that they took.

I going to take new blood tests next week.

Thats the update for this time..

Hugs Kisses /Marie

Flying to Gothenburg today!

2007-04-01T12:10:00.001+02:00

Just a quick update, I flying down to Gothenburg for my 2month check up at the transplant centre today. All tests start tomorrow (april 2) and i going to be there till at least april 4. Wish me luck Hope everyone doing well.

Write more later..

Hugs /Marie

Picture of me!

2007-03-29T21:29:00.001+02:00

A new picture of me. At a cafe here in my town. :D

Happy 23th Birthday Marjolein :D

2007-03-29T21:07:00.001+02:00

To my friend in the Netherlands, Marjolein. Enjoy the special and very Great day. 23 yay and many more to come :D.

Hugs /Marie

Quick update..

2007-03-29T20:46:00.002+02:00

So now a quick update, As some of you know i have had alot of problem with my stomach the last days both becaue of cf and all new medicine i take. I called the transplant hospital on monday (26/3) and told them about my problem and the nurse said i will talk with the doctor and he will call you. Ok guess they were every busy that day becaus it took 3 days for the doctor to call me back. Happy he called anyway but my stomach problem is alot better now so we are not going to do somthing about it now.

I still inhale the fungus medicine called Fungizone, yuck taste not good and i get a sore throat from it.

Today otherwise i went to the gym :) first time this week .. hmm lazy marie lol...

On April 2 i have my 2months check up at the transplant center. Wow that it allready has been 2 months since my transplant.. time going fast..

Hugs/Marie

Live Life Then Give Life!

2007-03-20T23:17:00.000+01:00

Live Life Then Give Life!

Don´t take your organs to heaven,Heaven knows we need them here!

Gör din vilja känd, Anmäl dig till donationsregistret!

Pics from transplant hospital...

2007-03-14T23:32:00.002+01:00

Sahlgrenska University Hospital (SU) --->

A map of Sweden, all patients who have had a transplant got a needle to put on the map from where they coming from.

After surgery-->

First time out after the transplant operation. Nice

outfit hehe ->

My airplane and private pilots ;)

Hugs/Marie

New update YAY:)

2007-03-14T12:42:00.004+01:00

I know very long time since i update this site. Bad me..

Alot has happended since last time. I startred the new course (law course) in Borlänge and i had been in school for only one week. when i woke up thursday February 1st i believed it should be a normal day plus that i was free from school this day. But at 12-13.00 in the afternoon my cellphone called and i answer, the voice in the phone said hello Marie this is the coordinator from Gothenburg( transplant center) and we have a pair of lungs for you. My whole body was shaking and i said is it true and she said yes :D. After that she should call back when she had order a ambulance and a airplane. Than i called my dad and told him the news and i called Marjolein (as i said the first time i called her(Next time i call you it´s because i got the transplant call, somting like that did i say anyway). :) Yes it´s true i call her and told her i got the transplant call. Than everything went so fast a ambulance came and pick me up and drove me to the small airport in Borlänge and from there the airplane was ready and we was in Gothenburg 16.30 somthing like that and than came to the hospital and had a shower and was rolled in to the operation room.

After 2 years and 3months waiting for the special call for a double lung transplant the miracle did happened 2/1-2007, it´s the date i received 2 new beautiful lungs.The surgery took 12 hours.

Thank you all for the well wishes and cards i got :) i really appreciate that. :)
2/2 is my transplant date.its the date when the surgery was finished.
My special day i always going to remember

Hugs /Marie

Back in Falun

2007-01-22T22:22:00.002+01:00

Hello! Now i´m back in Falun and school has start too. I study a law course now and one of the books are the Statute Book of Sweden. but it´s so far a interesting course.I not looking forward to the exam.. omg..

Today i woke up 6.30 becaue my lesson started 9.00 but happy my dad drove me to the school otherwise i must take the bus and it takes 30 mins to the school. So after school i went to the shopping center :). than home and i´m very tired now.

Shopping center (Kupolen)

just a quick update.. Hugs /Marie

Long time no update!

2007-01-09T14:19:00.002+01:00

TP Disney Game

Hello i know it has been awile since i have update the site. the cf clinic i had 18th of dec went ok anyway they were more satisfied with me even if the o2 sats was almost the same as last time but i looked alot better so glad i not needed to stay in the hospital.

The day after, my sister and i took the car and drove to our mom and spend the christmas there. it was nice. Than we drove back 87 swedish miles to our dad and celebrate new year. The new year day wasn´t as fun for me because i got really ill, i had a very bad headache and no energy at all, just sat down :(.

Now i have start colimycin (antibiotics) and feeling alot better.

Pics coming up later.

Just a quick update.
Hugs/Marie

CF Clinic

2006-12-13T23:13:00.002+01:00

Hello! I had cf clinic on monday (dec 11th). I was feeling ok but the tests didn´t show the same, My O2 sats was not the best in the low 75% (on 3 liter oxygen)and of course the cf team wasn´t happy about that. My doctor think i have to much carbon dioxide (CO2) in my lungs :(. So i must use the Bi-pap alot more everyday. Hopefully do that help. I have a new check up 18th of dec with my doctor and physiotherapist.

I know my lungs are worse because i can feel it, it´s heavier to walk around and do stuff even with alot of O2 (Oxygen).

So hope for the best on monday dec 18th.

Hugs /Marie

A trip to the ER.

2006-12-02T11:27:00.003+01:00

The whole week i had not feel so great, first i was thinking i could be stressed from 2 very busy weeks at the driving school. But on wednesday, first my hearing start to disappear so i only could hear people like they were in the background but they weren´t. very scary. So in the afternoon i went to the health centre to get my flu shot and at that time i was so out of breathe so i called a taxi car to get home. I came home and was so out of breathe (even with 5liter o2)that i not could open my own door to the apartment, So my nice neighbor helped me in.I had a very high fever too (39c deg) maybe from the flu shot i don´t know,So after i talk with my mom in the phone i decide to take a taxi to the ER (emergency ward).

At the ER

I had 5 liter o2 but my o2 sats was only at 90% and got worse so the nurse increase the o2 to 6liter the o2 sats was still not great but better anyway and i had still the fever. The nurse took alot of blood tests and i talk with the doctor and she think it was best to admitted me and on iv´s antibiotics . So some time in the emergency ward because the ward i use to be admitted to they had problem with stomach disorders.

Hugs /Marie

Driving licence.

2006-11-28T20:07:00.002+01:00

As you maybe know, i trying to take my driving licence. It going ok so far, But it´s hard to have 3 lessons every day so I use alot of O2 (oxygen). But i will make it and get the driving licence.

Quick update 17/4- 2007!

Now i have a break from the driving lessons because i´m not allowed to drive the 3 first months after my transplant. But i´m sure i will pass it all and get the driving licence when i´m ready:D

Hugs /Marie

quick update from Gothenburg !

2006-11-08T00:31:00.002+01:00

My coordinator called yesterday and told me that the transplant team have had their meeting last week, and they discussed me. They eere satisfied with the result from my tests and my coordinator said i maybe not need to wait so much longer for the call.
I hope so.

When i write this it´s over midnight here and it´s november 8th, that means i have wait exactly 2 years for the special call.

hugs/Marie

Winter pics

2006-11-03T23:30:00.000+01:00

Just a nice picture from the beach at first may, still ice on the water.

Snow!

Fountain half snow and half water.

Only some winter pics From Falun.

Hugs /Marie

Gothenburg (tx clinic)

2006-10-22T12:57:00.001+02:00

A update from Gothenburg and my transplant (tx) clinic visit.

I had alot of different tests to do. 6min walk test, ultrasound on the heart and lung x-ray. blood-tests etc. All tests show that my health is worse and not going to be any better. They do not get so many donors who are 140-150cm tall so i was high priority and it must mean somthing i hope.

My doctor still want to wait till i get the special call and hopefully soon.They had a plan B for me too if i get sicker.

Plan B. it was to take a pair of bigger lungs from a donor and cut the lungs so they fits me.But as i said they still want to wait and see if i get lungs in my own size first.

I have wait 2 years now and it´s a long time so the doctor said the call maybe coming soon.

Just a quick update from me.

Hugs /Marie

some pictures of Falun

2006-09-08T11:53:00.000+02:00

My room in the apartment :D
church
Ski thing

Fountain!

Dala Horse (they are famous for the hores).

My School!

Falun is the city i´m living in for the moment.
More pictures coming soon!
take care /Marie

Falun

2006-08-28T14:49:00.001+02:00

Hello i´m in Falun now, Where i going to live for at least 3 months because of studying. 2 courses sport and media + tv production. Going to be fun. Today i had my first day at school some infomation about the course.

The girl i have the apartment with is nice. She study somthing with meida too. Everything going well so far.

I hope to get internet as soon as i can.

Take care /Marie

cf clinic

2006-08-16T13:34:00.001+02:00

I had cf clinic today. first i did a 6 mins walk test and it didn´t go so well. when i rest with 3 liter o2 my o2 sats was at 79% not good at all, but i made to walk 6 mins anyway but it was hard after it my o2 sats was at 45% very low. I walked 510 meter. :)

I got a new mask for my bi-pap so going to try to sleep with it. 11.00 i went to the doc office and talked with my doc for awaile, He was happy i could walk 510 meter even if my o2 sats was so low. I told him i should move to Falun (another city here in Sweden) for 2.5 months. My doc said he going to talk with a lung doc in that city so i can get in contact with him or her if i want to, otherwise i do my blood tests etc at my specialist cf clinic in uppsala.

My doc wanted that i should have iv´s every 3 months again. so next course of iv´s going to be in sept. And he going to talk with the transplant center again too and he hope i get the call soon.

It was my update for today..

Hugs /Marie

Home in Luleå

2006-08-13T10:07:00.001+02:00

This Friday my little sister Alice and I took the aeroplane up to Luleå, the flight went ok and everyrhing was ok with the oxygen too even if i got a headache. I´m home in Luleå now :D. it´s great. But only going to be home like 2 weeks, after that i going to move to Falun and study there 3 months.

Hugs /Marie

Update

2006-08-11T10:25:00.001+02:00

Hello!
I have been to gothenbrug with my family, it was fun. But now i just sit here in my room and thinking about that the summer is soon over. this autumn it going to be a new challenge for me :) I going to move to a own place where i going to study 2 courses (sport and media, tv production) for like 3 months and after that i thinking about to take a intensivecourse for driving so i get my driving licence fast :).
Pictures from Gothenburg!
autographs from celebritys
(Peter Forsberg,Mats Sundin etc)
My sister, Cousin and me. My sister, Me and our friend.

Me :D

2006-07-19T16:17:00.001+02:00

Just a summer picture of me on a island here in Sweden :)

Cf clinic update again

2006-07-11T19:37:00.001+02:00

Cf clinic update again. I was feeling much better than last friday and my doctor thought i looked much better today than yesterday (i was to the clinic yesterday too) so thats good and i was feeling better today too, i only need to countine with meronem and oral anbiotics for another 2 weeks so hope it help.

My culture grow was another bacteria but can´t remember the name of it. My doctor said it was almost like pseudomonas so not to worry about it so much i guess.

Take care /Marie

Hospital all day ....

2006-07-07T23:23:00.001+02:00

Hello a quick update again, Today i didin´t feel any better so i decide to first call the cf center but now answer, My sister should go to the city where my cf center is so i follow her, and we decide to go and see if somone was working at the cf center and lucky my cf doctor was there so i told her how i was feeling and she said iv´s immediately,

So than she went to the ward and said to a nurse to give me iv´s, but it took very long time because it was somthing wrong with my port and they try with 3 diffrent needles but it didn´t work so than another doctor order a medicine and than i should wait 1 hour and see if that worked and it did :) YAY, So after like 8 hours i got my first dose of iv´s (Meronem)

I going back to my doctor tuesday and if i not feel any better i going to start another antibiotics called nebcina. So wish me luck and that everything going well.

take care Hugs /Marie

CF Clinic update

2006-07-04T10:02:00.001+02:00

I had cf clinic yesterday. It went not so good. My doctor was a bit worried about my cold so i leave a sputum test and probably going to start iv´s when the sputum result coming back. My o2 sats was at 82% with 3 liter o2 and my fev1 was 19% it was a bit better than last time but anyway low.

It was just a quick update.

Take care /Marie

The Soccer World Cup!

2006-06-11T11:02:00.001+02:00

Hello it has been a long time since i write here. The soccer world cup has begin Yeah, Sweden was playing their first game yeasterday vs Trinidad & Tobago, We didn´t play good at all and of course the game ended with 0-0 grr... But 1 point is better than 0. Next time we play vs Paraguay and we must win the game otherwise we are out :(. Wish us luck we need it :)

/Marie