Monday, November 20, 2017

You hardly will believe this

Goodmorning everybody!

Yes, I can say with some restriction, that is is kind of good morning.

I was here last Monday with  the news Jan was home again.
And it went kind of well for the first couple of days.
Till last Tuesday night.
The drain-wound started to leak. Okay, that could happen, but it didn;t stop. Jan first didn;t wake me up, because he wanted me to finally sleep a bit. I woke up at around 6.00 morning, was cross with him that he didn;t woke me up. It still was leaking, Jan already put on more bandage and then I too, but I wasn;t happy about it. it was too much.
So after  bit of struggle I first called the gastrointestinal liver departemenet of the hospital, there they adviced me to come to ER.
As it was impossible for Jan to go by tram, of course, and also taxi wasn´t optional I called ambulance.
At the hospital they looked after the wound, took some bloodsamples and such, and after a few hours we were sent home. They said that the wound could still leak a bit but that it was necessary to get rid of that fluid. Hmmmmmm, I wasn´t too happe about it, but okay, home again.
But we had to come back next day for a bloodsample!!!Home we bandagedthe wound several times)without removing the first bandage, I didn't dare to), finally Jan was soo tired he went to bed and could sleep a bit. During the night we both slept hardly as you can imagine.
Next morning I called a taxi to go to hospital at 9.00. We arrived there, I took a wheelchair for Jan, because he was to weak to walk and it would be good for the wound either.
Were helped quickly at the bloodsample departement.
I then went with Jan to the policlinic of the gastrointestinal liver departemenet, and I knew his specialist had consultation hour that day.
I explained to the assistant, she contacted the specialist, who came out her chamber right away. One look at Jan, she looked at me and said:
"Yesterday at the ER they checked all kind of things, but didn;t look or not well, at his kidneyfunction. And his kidneys aren;t doing well at all. So I sent you first to ER and then I am 99% sure he will be hospitalized again."
I even wasn;t surprised,  kind of expected it already.
Okay, Jan was checked upon all day long at ER and came to the ward around 5 a.m afternoon!! It was a long day.
I went home, and oh wonder, even slept for some hours!
Next day back to visit, Jan wasn;t at his room, he had a endoscopie.
Came back there after I waited half an hour. Still was asleep, because he had a light sedation. In mean time I saw some doctors, they told me it wasn;t going too well with him at the moment. The problem were his kidneys. They had to go working propoerly again. It wasn;t too good news, but too early to say anything about it.
I went to Heidi(who lived at a few steps of the hospital) and had a chat. Then I went back to hospital to see if Jan was already a bit awake.
He was, but still very drowsy. When I came to the room, there was another pair of doctors(this time a doctor of stomach and liver, who treated him before). I asked her about the situation. She wasn't very optimistic, it would be crucial Friday night and Saturday, to get his kidneys working again. They would try several medicins for that, plus a very wide range of antibiotics, because they didn;t really know what was the trigger of all this. if all that wouldn;t help, he would go to IC, and may be got a rather new mediciation, if his body (specially his heart and lungs)could take it. May be first they could try a kidney dialysis, but that was not a really good thing of course. It really puzzled them. I asked her to be straight with me and she said: if this will not bring his kidneys to work soon, I forsee he will die rather soon.!!!
Wow, that knocked me down. I knew it wasn;t going well with him, but this was real bad. still i was glad she was honest with me.
She was so nice to me, and assured me, that they would do all they could. But also I had the advice, to call some people who perhaps wanted to see Jan, and that perhaps in the next few days. Maybe it was  too premature, but better too soon than too late
I went home and was completely done. I phoned his brother, because he should know about Jan. He was ever so sweet, he came right away with his son to me, because he heard I was kind of broken.
I had a good cry in his arms and tried to get a bit of sleep at night.
Rob, (Jan's brother) would come next day to me, and we would go together to Jan.
So he did, and what did we see ??? Jan was standing next to his bed!
I couldn;t believe it! Okay, he was stuck to all kinds of infusions, but had permission to walk a bit.
So we went for a moment to the little restaurant, after about 15 minutes  saw he was getting very tired so we went back to his room.
Oh my, he walked sooo slowly and it took so much of his strength, it broke my heart to see him like that. It seemed that his kidneys started slowly to do their work again(I saw the fluid, wasn;t much yet, also not a real good colour, but there was some!)
We left him to rest and I went home, could even enjoy some tv. I had more peace of mind . 
Yesterday morning I called the department to hear how he was. The nurse told me, they helped him to wash, he partly did it himself, they changed his clothes and that was again good news.
In the afternoon I went to see him, and i was lucky, I saw the doctor.
She was all happy to be able to tell me some good news. The medication seemed to work and Jan reacted beyond expectations on it. She honestly said to me, she had hoped for it, but didn;t really believed in it the other day. She showed me his Keratine status. He had very high the other day, around 520, yesterday it dropped already to around 300 which was a good sign. They weren;t there at all yet, because normal values are around 80-100. But there was good progress. so first they will tackle the kidney function, that is the most important at the moment. All the medications and fluids did had an disavantage, that he retained some of the fluid still in his belly.But that was next thing they would tackle. Let's first see if kidneys will work by itself again and stay on working and then we will see about other things, she said.
I was soooo reliefed, you can imagine.
Oh the doctor also said to me, that probably Jan had one or two guiding angels on his shoulders and i answered her: "Maybe he had, I certainly had a little prayer at my house icon and asked fo them".

It still will be tricky days, the more because Jan has no resistance at all due to his weight loss and all the strain etc.etc. His condition is zero, but that's another thing to be worked on. If all will stay on going well, it will take a long time for him to recover a bit. Never mind, as long as I can have him around for much longer time!

I hope, I explained all a bit comprehensible to you. 
Now we will have to live by the day, and be happy with all bits of good news and such. 
As soon as there is anything to report,  will do an update.
Thanks all for your support and prayers. You are fantastic.

Monday, November 13, 2017

Difficult to come into a daily rythm

goodmorning everybody!

rather long time ago since my last post but it had a reason.
You know Jan came home again the 1st of November. Well, we had some hope all would go slowly better, but ..................
sunday a week ago I noticed again the same symptomes with Jan as before.
For one his belly was blown again and feeling kind of hard, meaning there was again too much fluid and he started to have the mind absences and dis coordination again.
We struggled through the Monday but by the evening and night it was nothing at all so Tuesday morning I called the doctor. He was so very busy he couldn;t come to our house early, he only came at about 16.00 a.m. Gosh, we had a difficult day waiting for the doctor.
It didn;t take long though before our doctor called for an ambulance.
It was a so called "care-ambulance", a bit less equiped than the hospital ambulance, but used for not life threatening cases. like this time for Jan.
t took however still two hours before an ambulance came(and it was a hospital ambulance). Gosh, then to ER, again the whole circus of blood taking, urine, photos etc. so before Jan was really taken in on a ward it was around 23.30 in the evening!
I was completely pooped out(and Jan too).
He stayed in hospital till Friday afternoon and is home again. They really don;t exactly know what to do with him. They know the probable cause, but it isn;t operable(or at the least very dangerous). so they try to fight the little tromoboses causing problems with bl;oodthinners.
They also drained him again, this time 11 liters of fluid!
He is now on a different sort of bloodthinner, this time he has to inject himself with the medication. And he is given a medicin that helps also fight the absence and bad coordination that is caused by the bad stuff that isn;t transported well enough out of the body.
Difficult to explain for me in English, already difficult to understand all in proper Dutch LOL.
Well, let us hope this time Jan will make it till his next control appointment, which will be next Monday.
It is all more or less a case of finding a good balance again of medication.  But very strange that for years all went really well and that in several weeks it has become so bad.
It is eating on the nerves for sure, at both of us as you may understand.
Jan also lost a lot of weight, so has no condition or strength whatso ever, he is given extra protein food in drinks to help to build up some muscle tissue and fat again.
Well, there are some minor of perhaps also important issues playing in his body, caused by the medication, but I will not bother you with it.
I pains my heart to see him sit on the couch, in that bad shape and knowing he is worrying too. still we have to make the best of it and hope for the bst, otherwise there is no point in going on.
I just hope that for now, the fluid will stay away from his belly, because that also is makes it more difficult for him to move around and stand up.
For now, the belly looks good, but if can change in a day.
We have to keep track of his weight, of course, he also is on a regime of fluid control, he can take in around 1,5 ltr a day. So we have a little notebook where we write all things down.

In between all that and all hospital visits in the afternoon and such, I find some time to do a little shopping dor the things that are really needed, and I even dug up my dahlia bulbs in the garden and placed them in the shed to wait for next year.
The weather is not really bad, but not all too good either, temps are low, just around 8-11 C with sometimes some rain, at times windy, so real autumn weather you could say.
Every day though we have visits of our parakeets!
So I am kept busy too by them, hanging up some food for them every day. They are so funny and less and less afraid.
well, this is about all news I have for you today, I have to get moving, time is passing by fast. Have to take care of Jan, making breakfast, lunch and dinner for him, keeping track of his medicins, that he takes them on time, etc. etc. So my days are filled enough.
That's why I am not much on the blog, the time that I can sit down for a while I like to spend on watching tv and knitting a little bit. it is good to keep the hands busy(and then my eyes don;t shut so easily during a detective LOL).
Let's hope next time I will have some good news, I for one hope Jan can stay out of hospital noow for a while. He has been there 5 times now in 2 1/2 months? That is  a bit much.
Wishing you all a good day and happy week ahead, stay healthy.

Thursday, November 02, 2017

Update, trying to do it short.

Goodafternoon everybody!

Well, Jan is home again, he was sent hme yesterday afternoon.
They did all kind of researches, treid a lot of things, may be found for now more or less the reason and with some change in medicine hoping the fluid will not be reained in his belly.
I have my doubts, but we wil have to see.
For now, they did another drain of 10 ltrs!
In any case he must work on his condition. He lost a lot of weight (not in the belly so much LOL, but body mass). He also has extra protein drinks for a month. That surely will help, but gaining weight will take some time.
Next week he has already a control appointment with his specialist.
Let's say tyhat it is so far, so good.
Hopefully he can stay out of hospital now for a looooong time.

I also am making this post because I have two downloads for you. You still have to have the clusters from Arlene from the Young Ones kit.
And in between all consternation and hectis I managed to make a little Halloween kit. So that is just about in time for your photos .
Now I am going to sit down for a bit of time, already did a lot of things this morning. made a few necessary telephone calls, gave jan his breakfast, then did some grocerie shopping came home and prepared partly our dinner(marinade some stuff, and then I can finish it later and put it in the oven. Rather quick and easy)
And after all this I feel it is time to sit down for a moment (am a bit pooped out, hahaha, and perhaps do some knitting. Trying to make a little throw for Christmas, and just hoping it will be ready in time.
Till next time, have fun with the Halloween kit.
Download    HERE

Download    HERE

Tuesday, October 24, 2017

I am getting a little bit desparate.

Goodmorning everybody.

First to all of you a big thank you for your comments and prayers and good wishes. And taking your time to read my very depressing posts.
You are marvellous people.

I will try to do it kind of shorthand because I don't have too much time to linger at the computer.
Last Monday Jan came home of hospital. His trouble with retaining fluid in the belly might be a kind of tromoses somewhere in or just in the entrance or exit of his liver. That helds back the filtering of a certain substance and than the whole internal "household"gets upset. Seems to sit on a tricky spot to operate, is probably not an option. That's probably why they gave him another bloodthinner medication.
Last time he was there they drained him, it was about 14 ltrs!!!
First few days he was home he was doing rather well.
But starting around Friday already he got worse again, his weight gained and not because he ate so much. His belly became bigger again and he started to have somewhat the same issues as last time. Bad coordination, concentration, in short all misarable.
He should go to his specialist this week Thursday, but I decided it was no good and in fact real bad to wait till then. Couldn;t even think of how to get there.
so last Sunday night both of us where almost up and around all night, Jan having trouble with kind of vomitting, only clear slime, buit it exhausated him terribly. It already started one or two days ago, but the Sunday night it was the worst. Then in the morning Jan himself asked me to phone the hospital.
I first tried to get to the assisted gastrointestinal liver doctor(Jan had permission to do so in case things went bad), but wasn;t yet reachable. So  called 112 for an ambulance and they came quick and we went to hospital. After a few hours of research at Emergency( you know blood test, lung photo, urine test, question to answer, everything all over again, just like two weeks ago) and he was at the ward. I went home and tried to get some rest, Must say I did get some decent sleep, which was needed.
Now today I will hear what they will do, I guess there will be an echo and perhaps already another drainage. And then I hope they will not release him too soon, because he is exhausted and needs extra feeding for one and then I hope the doctors will come with a solution for the problem. Impossible for both of us to carry on this way, of course.
I wished I had happier news to tell, but at the moment it isn't there.

Now I will end this post, have to get dressed, eat something, then have to do some shopping, and perhaps if there is time left do something in the house or already prepare my dinner. Then to Jan, visiting hours are from 15.30 till 19.30, like to go early, and return home when there is still a bit of daylight.
Till next time.
Take care and stay healthy!

Saturday, October 14, 2017

Hectic days around here

Goodafternoon everybody!

last week Jan was hospitalized as I still wrote and had a drain in his belly on Thursday and there came out around 14 litrs of ugly fluid.
They removed the drain Friday morning and they sent him home in the afternoon.
I wasn;t happy about that, thinking it was too soon.
But okay, he didn;t had this strain on his belly anymore which already was wonderful.
The hospital chainged a bit of his meddicins, also he had to beunder control of the thrombosis service. During the weekend I already noticed Jan wasn;t feeling all too good, he also started to have some coordination trouble, was wobbly on his feet, really distracted, talked not so good anymore. So I started to worry again(and I knew he was too).
But Monday came the thrombosis service and give him the scheme for the next few days.
But that Monday things got slowly worse and I already wanted to call for the doctor. He didn;t yet, so we struggled through the Monday and Monday night(I almost didn;t get any sleep, logical).
Then Tuesday morning Jan was up early and me too and I asked him what to do now.
He asked me to call our housedoctor, hoorray.
As he is just a few steps away from our house, I quickly got dressed and walked to the office. Explained to the assistant and she said the doctor would come over during lunchtime.
So he did and he decided Jan had to go to hospital again. As Jazn was in no condition to go by taxi or tram, doctor ordered ambulance.
It took hours again till Jan was actually in a room again, during the researches at ER  walked to the department of his specialist, explaining what was goping on and that Jan couldn;t come to the appointment on Thursday. and I urged the assistants there to inform his specialist and that we wanted to talk to her .
Well, she came yesterday to Jan in hospital and had a long talk with him. During her visit to him I came to visit too and was sooooo happy to see her sitting on Jan's bed there!
seems there were made some mistakes with his medication, also some miscommunication with us, so she wanted Jan to stay for a bit longer time in hospital to get everything back on track and do some good research and have a good control on him. Oh, I was so happy to hear that.
Normally it could have been he was sent home again on Friday, but now at least his is staying during all weekend. may be on Monday he can go home, but if you ask me, I rather would see him in hospital even a few days longer.
But Jan is getting better already. Okay, his condition is really zero, after a little walk he is exhausted, but the coordination is almost back again, speech is back again, his eyes look "good"again, so that already is a profit. Seems he had too much urine tablets, so he got dehydrated.
And he had too much bloodthinner meds too, so he is on a rather new schedule of meds and mg. of that.
All by all again a stressing period.
I really hope this time when he comes home again, all will slowly get better again and will "settle"itself again.
Now I really have to hurry a bit, to get ready for visit to hospital soon.
So till next time, and hoping it will be better news.

Thursday, October 05, 2017

Not yet happy news to tell

Goodmorning everybody!

I wished I had some good news to tell about Jan but there isn´t.
Last week it didn´t improve with Jan´s belly, so last Friday he went to hospital for bloodcheck.
Monday his doctor called on him to ask how he was doing. Well, he said it wasn´t good. He explained hopw all went, that he didn´t loose enough fluid, the belly was still the same size, he almost didn+t eat)he really lost fat, or muscle on all parts of his body except the belly, specially his face.)
So his doctor said to him that she would try to get him hospitalized as soon as possible, but that unfortunately she wouldn;t see him this week, because she had to go to another congres.
Jan said that she sounded not as nice as always, but that it had to do with the acting of the replacing doctor, well, so it felt to him.
We got a phonecall Tuesday morning that he should come in the afternoon to hospital. so that was quick.
I went to him yesterday and he already had a lot of tests done and it seems his doctor left behind a whole protocol of the things the doctors had to do for research and such LOL!
After all the tests they will see what could be best to do.
Perhaps another raise of the urine pills for a while, or may be something else and if nothing helps they might be doing a drain. But they don;t like doing it, it can be complicated sometimes.
But if it is necessary, well, let them do it. Jan has to get rid of that fluid in his belly, which is giving a lot of tension to the belly.
Not great that he is in hospital again, but on the other hand i am happy, because they do all kind of research now and that is already something. I think, they also will keep him longer hospitalized this time. Let them, as long as it has a good result!
So in short that is the situation for now.

You understand that nothing great is coming out of my hands at the moment. Of course I do the necessary things, but also that(the ordinary housework) is left alone a bit. I will pick it up again in a day or two, of course.
Weather isn't great at the moment Today we have stormy weather, with sometimes some rain. They say the storm will lie down towards end of afternoon. Hope so.
Temperatures are around 15-16C, not fantastic either. But the birds don;t mind. I hang up some food for them every day and yesterday when I was home from hospital visit again there were about 13 or 14 parakeets!!!! And then some tits and others too. Very busy LOL.
In the two weeks Jan was home again I even managed to finish a kit I was wroking on for already so long.
So  have it ready for you.! Name is "The Young Ones"and is kind of Victorian style.
Have fun with it.
As soon as there is news to tell you will find me back here.
Download    HERE

Tuesday, September 26, 2017

Quick update, real short.

Goodafternoon everybody!
Jan's situation is about the same as it was when he came home of hospital.
Last week he called to hospital so perhaps get hold of the assistant of his doctor. He got the secretary, who asked him, after he did his talk, to come to hospital and give blood, so they could have a check and doctor would call him back on Friday.
Well, Jan went on his own to hospital(Iwasn;t home at the time), and I came back an found no one home! But Jan left a little note, so I knew what was going on.
Just 5 minutes aftermy arrival home, Jan came home too. He was completely exhausted from the little trip!
We waited next day for the doctor to call us, which he finally did at around 17.00 afternoon!
His talk was very disappointing, in fact we didn;t got any real answers or such.
Jan just had to continue with his medication and then wait till the call from his specialist(on 2nd of October).
The doctor who called him was quite vague with the answers etc.
I said that Jan perhaps should call his doctor on last Monday, she would be back from the congress. But, can you guess ?????
He didn;t. So now we will have to wait this whole week and perhaps next week there will be some action taken.
It worries me a bit, that there is no change in weight with him, and it should happen, with his aumentation of his urine pills.
He isn;t feeling okay, not really sich, but not good either and he is all the time very tired.
May be  can get him over the bridge to still call his doctor tomorrow ro on Thursday. Every day he will be in contact with her can only be for the good, I think.
I feel so sorry for him, and worst is that I cannot do anything to make him feel better.
We will just have to hold on some longer, till it will go better again.
No at the moment it isn;t a nice time, but one day it will change again, it just has to.
At least we have some quite nice weather, not really warm, but larger parts of the day the sun is shining and it is also great fun, to watch the birds in our garden. We have the parakeets, but now also loads of tits, and some others coming to have a bite.
Next time I will have probably a new kit for you. I takes ages to upload at the moment.
Thanks for your visit, hopefully next time I will have some more cheerful news.