dialysís in Finland

oompah18 · Post by **oompah18** » Sat May 16, 2009 11:46 pm

My Finnish hubby has been getting sicker & slower & yellower suddenly these past few weeks & yesterday was diagnosed with kidney failure. He´s in hosp now of course, & is going to have dialysis tomorrow apparently. I have been Googling & reading all evening & it does sound rather grim, especially as he has had high bp all his life & still high with daily medication, & a v slow pulse, another contributor. I am not in direct contact with the doctors etc but his sister is dealing with everything, as she took him in & my Finnish isn´t so hot anyway. So I have only her broken English to go on so far, but I am shell shocked & feeling totally scared about the future, with our 4 youngsters. Anyone here had experience with this. I mean, could he be in hospital for months? The sister isn´t coming to visit here again till Tuesday, I have not a single cent in the house & very little food. I have asked my friends for help already today & some have offered food, money & taking my kids for playtimes with their kids to give me a break. I guess I am writing now, just to "talk" to people, trying not to think about worst case scenario. On Monday I will contact "Koti-apu" who gave me a childminder for a couple of hours once before. I need to go & see him, but not with the kids. My eldest understands that Isi is very sick, but the others are not too bothered where he is yet. I just feel very scared & worried for him

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Rosamunda · Post by **Rosamunda** » Sun May 17, 2009 10:11 am

I don't know anything about dialysis but I think he will get good treatment in a Finnish hospital.

You can also contact the Mannerheim League who will help you take care of your children. They have branches all over Finland and exist precisely to help families like yours. www.mll.fi You should also consider contacting the municipality social affairs office where you live as they may be able to offer you some support. And your husband might be able to talk to someone in the hospital who can arrange childcare for you while you visit.

Does your family in the UK know what situation you are in? Could someone come over to help you and give you some moral support?

Take care.

biscayne · Post by **biscayne** » Sun May 17, 2009 12:25 pm

I am very sorry to hear about your situation. If your husband will require kidney dialysis from now on, that means he will need to be dialysed 3 times per week for the rest of his life. The process takes about 6 hours and he will get a "graft" in his arm - this basically looks like they have artifically enlarged a vein in his arm so that his veins don't "collapse" everytime he is on dialysis. He will be on a very restricted diet for the rest of his life too. Very low potassium, and restricted fluid intake, probably about 1000ml per day which includes "hidden" fluid such as that in fruit and vegatables. It's a hard diet to stick to, and if he is a Finn who likes his beer it will be even harder for him. The skin often becomes dry and itchy from the urea which comes to the surface, so he will need creams to keep it moisturized. The hospital should provide a diet sheet and all kinds of other information. Travel will be restricted from now on too, as he can't really be without the dialysis for more than a few days, unless the hospital decides that he can have a different type of dialysis which can be done at home, it is called CAPD. Regarding your other problems, I am assuming you are all legally in Finland and that your husband works, Finland being a social welfare country is set up to deal with exactly these kinds of things, I am sure you will be entitled to Social Welfare, have you checked out your entitlements as a mother with 4 children and a husband who is sick? Surely he will get a disability pension?

kay30 · Post by **kay30** » Sun May 17, 2009 4:11 pm

I have no information on this, but just wanted to say how very sorry I am that you are going through this. As others have already said, if you must go through this type of thing, Finland is probably amongst the best places in the world as the safety net is there for exactly this reason. Regarding communicating with doctors...I am not sure if this helps but sometimes I find I get better service in English if I email them (in English). That way, I can have my thoughts clearly organized and ask specific questions and they can think about what they want to say and respond and there is not the pressure (if they are not so handy with English) to respond quickly and instantly.

Pursuivant · Post by **Pursuivant** » Sun May 17, 2009 7:10 pm

theres http://www.munuainen.fi/ (association of kidney and liver patients) ... yes its all in Finnish, but I don't think theres a problem if you email the local chapter in English.

maurine · Post by **maurine** » Sun May 17, 2009 9:18 pm

I am so sorry about husband. I hope that everything will go well. At hospital you can also ask for the doctor in charge of your husband this can give you a chance to discuss with them about your husband condition. Most of the doctors speak very good English and i believe they can be able help too.

kay30 · Post by **kay30** » Sun May 17, 2009 9:48 pm

And here is Pursuivant's site in English thanks to Google Translate and thePatient Guide.

oompah18 · Post by **oompah18** » Sun May 17, 2009 10:43 pm

Thank you everyone for your replies. Biscayne, that really tells me what it coming, I couldn´t find that sort of info on the sites I searched, not what actually happens daily. I am going to follow all your links right now, thanks again. he had dialysis this morning but they said thaty both his kidneys have severe damage. They were checking all the many Blood pressure tablets he has taken throughout his life & that is definitely one of the main reasons he is in this state, according to what his sister has understood from them. He won´t miss drinking beer but I think he will miss barbeque sausages

. I guess the travelling aspect too, I hadn´t even thought of that. Can he attempt to play sport again? I had better look that up too, as he does volleyball, football & cycling.
Anyway, thankfully, the kids have been angels this weekend, I have contacted loads of friends & family to ask for help in different ways, so we shall see. I don´t know if he will be allowed to work again, I hadn´t even considered that either, but he is a lecturer in computer programming at Uni....
Thanks everyone

raamv · Post by **raamv** » Sun May 17, 2009 11:53 pm

Sorry for the condition of your hubby!! Hope the kids are ok!!
Generally a severe kidney damage to both of them is likely to lead to a "search" for another ..But that means years and depends on the blood type etc..
The thing about Dialysis is that it makes people very very tired ( Came close to getting it because of an "unknown" undiagnosable virus infection making my kidneys fail )..So tired that that they are pretty much unable to work for a day after getting it.
Make sure that you contact your Husband's Union to find out how it will work with all the possibilities of getting disabilities, help and for how long time, what is the KELA help, What is the help if no one can work etc ..
Also, If he had health insurance, what is covered, what is not, about dialysis coverage, transportation to and fro, equipment costs etc..
Be prepared mentally and if you need help and venting out, Please do post here..and Hopefully we can give at least moral support if not more..

biscayne · Post by **biscayne** » Mon May 18, 2009 9:38 am

Hello again,

I just wanted to say that, although of course the most important thing is your husband and his health, I would suggest (just my suggestion) that you get moving on the social welfare/financial element of things immediately and leave no stone unturned. Of course, I don't know the exact situation, but, if your husband will be on dialysis for the rest of his life, it is unlikely that he will be able to continue in the workforce. It is possible, and some people do manage, but it is unlikely. Therefore, you have the very real probablity of the loss of his income. I would find out your entitlements (and his) ASAP, and get them organized ASAP. The reason I suggest this, is because if you can organize things so that money is coming in, rent or mortage being paid, bills sorted, food on the table etc., it at least takes that element of stress off of you, because you will now have a whole other type of stress to deal with. You will cope better if you have fewer things to worry about. As regards medical coverage, my understanding is he will be 100% covered for dialysis and medications and hospital stays relating to it, he shouldn't need any private insurance to be covered for it as it is a long-term chronic illness and because there is an "urgent" element to it, he doesn't need to wait. As far as travel goes, sometimes arrangements can be made with other dialysis centres, so people can go on holiday and be dialyized at the nearest centre. You can ask about that when all the other stuff is sorted. Good luck, and I really wish you all the very best.

oompah18 · Post by **oompah18** » Tue May 19, 2009 12:23 am

Word has got round the village & today I have had offers of food, money, childcare, transport & translation, by other mums! Someone is already working on the social services bit for me & someone else told his employers (which we had all forgotten about!) so things are being started at that end. Tomorrow I go to see him, while someone has the kids, as the doctors want to ask me about his usual daily diet (meat & 2 veg sort of family

) They are now discussing the possibility that he may have caught that mosquito bug thingy, is it myrräkuume... but they are sstill a long way off finding all the causes of his problem. they expect him to be hospitalised indefinitely... Luckily his close family have said they will pay all our bills (mortgage etc) for the short term , till things get sorted. His sister visited him today & reported that he is responding well to dialysis, that´s a start anyway. Thanks again Biscayne especially, I am getting things started. ...
Kids are still being little angels, but I am so tired. Am pondering over his mental state. he has always said he would never retire, work till you drop, is his mentality. I am not sure how he would cope without his job, I have a feekling he would become a recluse in his computer work room at home... BUT of course there are the kids to keep us all busy. Long way to go, but thanks for the support, perhaps I SHOULD get to bed a little earlier.....

raamv · Post by **raamv** » Tue May 19, 2009 12:37 am

oompah18 wrote:Word has got round the village & today I have had offers of food, money, childcare, transport & translation, by other mums! Someone is already working on the social services bit for me & someone else told his employers (which we had all forgotten about!) so things are being started at that end. Tomorrow I go to see him, while someone has the kids, as the doctors want to ask me about his usual daily diet (meat & 2 veg sort of family ) They are now discussing the possibility that he may have caught that mosquito bug thingy, is it myrräkuume... but they are sstill a long way off finding all the causes of his problem. they expect him to be hospitalised indefinitely... Luckily his close family have said they will pay all our bills (mortgage etc) for the short term , till things get sorted. His sister visited him today & reported that he is responding well to dialysis, that´s a start anyway. Thanks again Biscayne especially, I am getting things started. ...
Kids are still being little angels, but I am so tired. Am pondering over his mental state. he has always said he would never retire, work till you drop, is his mentality. I am not sure how he would cope without his job, I have a feekling he would become a recluse in his computer work room at home... BUT of course there are the kids to keep us all busy. Long way to go, but thanks for the support, perhaps I SHOULD get to bed a little earlier.....

This has also been going on for some time... Just today I heard that a couple got myyräkuume 1 week of each other with both being in the hospital..
I was in a similar situation but tested negative for myyräkuume!! But the virus that never was found was similar in nature and left my kidney's failing..and almost left me with Dialysis..But with daily intake of lots of liquids and 10 days in the hospital..it was ok..
I hope that your hubby dont have permanent kidney damage... ( things like burana makes a difference as it acts on kidneys as opposed to panadol which acts on the liver for fevers and aches..)
so we have decided to drop burana as a medicine as a whole..
myyräkuume is not a musquito bug ..it comes from touching or ingesting (from air) virus from the droppings of Mole ( myyrä)....
Surprised that if he is diagnosed with myyräkuume...that they went for the dialysis soo soon ( might be that his kidneys were failing faster and deteriorating faster ...what was the Kreatinin count? )
Glad that your finances and daily things got taken care of..and good luck and hope that this is just a temp. phase and he ll be fine in a week or so.

Rosamunda · Post by **Rosamunda** » Tue May 19, 2009 12:52 am

(raamv types quicker than I do at 1 am)

Fab news that everyone is rallying around to help! I'm not so sure that kind of response would happen here in the metrpolis... so maybe one of the big advantages of being in "nowheremäki" is the sense of community and neighbourhood

There was a thread on here a few months ago about the "mosquito bug thing". Actually it is NOTHING to do with mosquitoes. If I remember correctly it is a virus and is spread my voles and moles that leave their sweat and poop and other bodily fluids in wood piles. I think humans contract the virus by breathing it in. It was on Raamv's list of possible nasties when he was rushed in to hospital and one of Kupcake's boys was really sick with it too. Where's House when you need him, huh? Kupcake will tell you all about that but I think they got a few false negatives before the final diagnosis was made.

Kids certainly have a sense of occasion. I've noticed that even tiny tots they seem to have a sixth sense for understanding when it is OK to play up and when it is OK to just play!

Good luck for tomorrow.

Penny

(PS: Did you see the Royals are staying put and now Coppell has left and the floodgates are open: Graeme Murty, Marcus Hahnemann, Michael Duberry, Leroy Lita.... Oh well, it was fun while it lasted )

Pursuivant · Post by **Pursuivant** » Tue May 19, 2009 8:00 am

Yeah, the "myyräkuume" is different from the tick bite thing. Both however do have a bit similar symptoms at a point and can get serious in a fraction of the population. (First time I've seen a green little alien when I went to see RaamV at the hospital). Mosquitoes AFAIK at the moment don't spread diseases in Finland, but keeping in mind there was malaria still in the 1950's it isn't impossible something might spread that way.

Jahnny · Post by **Jahnny** » Tue May 19, 2009 10:19 am

When I was younger my Dad had renal failure and needed dialysis 3 times a week. He got a fistula (http://en.wikipedia.org/wiki/Cimino_fistula) in his arm and was on this crazy diet. It's easy to think that they're just sitting there reading a book for 6 hours but it's like getting a blood sample drawn for the whole time, totaly exhausting and the rest of the day is just lost for them to tired to even sleep or make their own food.
Also you can pretty much forget about going to eat in restaurants.

It was very difficult to get travel insurance, (he had other conditions at the same time) but he went to Italy one time and if the place you are staying is near a hospital your hospital in finland can arrange dialysis appointments easily for you.

I think that it's really important to tell your children what's happening, they'll know something is wrong but it's just painful and confusing if you try and protect them from what's happenning, and they'll definitely appreciate being told what's going on now when they're older.

The first 6 months or so are the worst, but after a time your husband may be able to go back to work. One teacher at my high school disappeared for half a year for treatment but then was able to return part time to the school.

Good luck.

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