Sunday, November 26, 2017

Here is another little update.

Goodmorning everybody!

I just really ordered myself to sigt down at the computer and first read a few bblogs, cannot do them all because it takes too much time now.
And then I wanted to give you an update on Jan.
Jan still received till last Friday the 4 hours cyclus shots with the medicin for the kidneys. It helped really good, so now they want to see if they can do the job for themselves.
He also is off infusions, which is wonderful. It all started a bit to hurt.
Now he only still is on the catheter, so doctors can check on the amount of urine he is producing.
Looks to go well. But now there still is the other problem of the retaining so much fluid in the belly. And now he also has fluid in his underlegs and feet. As it is no option for Jan to do a liver transplant(he doesn;t want to undergo that), the doctors now perhaps found another solution that may work. Not a 100% garatee, of course, but is has been done with rather good results. It is an operation, where they will make a kind of bypass in the liver, so that the bloodvain that has to tranpost fluid in and out will be taken almost out of order so to say. They will make a little vain just beside it through the liver. it will be done through a bloodvain in the neck, passing close to his heart and going into the liver and out there again. That should solve the problem of not transporting the body fluids through the liver.
First they had to make an echo of the heart to see if that would be strong enough. His heart is in very good condition, no problem there.
Now probably Monday he will have a CT scan to see if vains are good enough.
I am not completely aware of how the whole surgery will be done, if I am lucky I will see the doctor again today, who will give a second explanation of it I guess. f I don;t see him, at least Jan will have the conversation.
So again exciting times next week,]
One thing is for sure: the doctors are doling all they can for Jan now and give him all the tests and options and everything and are keeping good control on him.
I have no idea if they will take off some of the fluid in Jan;s belly before the surgery first. If they will drain him, they already said that they will do it slowly and gradually, because they want to prevent that his kidneys will have another blow by it. They work now rather good again, and they want to keep it that way. They already had some severe blows the last month or so.!

I try to get some work done here in the house at the times I am home, but to be honest, not much is coming out of my hands now.
I get up in the morning, first do the feeding of the parakeets(LOL), then take a cup of tea, looks at the news on tv, then it is about time to have some breakfast, then most of the time I do some housework, like a vacuum clean. After that I take a cup of coffee and then go out to do some shopping. Not so much for myself, but there are always things Jan likes to have(or also that I think he could be happy with).
Then it is time to have a sandwich, then I can sit for a moment and then I go to hospital around 2.30 a.m. Most of the time I walk, it is just a 20 minutes walk and it is good for me. Then after my visit, I go home by tram around 5.30 am. Home i close the curtains, put on the lights, put on the oven if i have something to warm up, or I make myself a little supper. In between  change into my cosy lounge pyjama.
Dinner ready, I eat it watching some tv, then put the stuff away, and settle down on the couch with most of the time some knitting.
And often around 9.30 or so in the evening, when watching e.g. a detective, I notice that I missed a part of the story, LOL!
Then my eyes closed without me noticing it really. Okay, it is not a real problem, most of the time I take another hot drink, some tea, or even coffee, because I don;t want to go to sleep too early. But around 11.30 or so I give in and go to sleep. Some nights I sleep all the way through till may be 7.30 p.m. and other times I wake up once or twice.

I am glad the weather isn;t too bad most of the times. Of course temperatures are dropping by now,  they don;t reach more then may be 8 degrees C, still there is no frost yet at night. At least not here at the coast.
There is some sun, some days cloudy and grey with a bit of rain, all together not yet so very bad.
The worst thing is that it is still so dark in the mornings and that ir is dark so soon in the afternoon. I am much more a summer person, with long days in daylight.
If all goes well I can bring a Christmasbox to the postoffice next week, and it should arrive in time I hope.
And also soon time comes for decorating for Christmas, but I don´t know if I will do it this year. Yes, I will put on the tree and the little manger, but perhaps I will do not as much as other years. Depends a bit on how things will go with the surgery and so on.
Good,  will finish now, because I should take a little breakfast now, then dress and then go to town to see if I can find a pair of slippers for Jan. He has a pair, but they are at there end of use, so he can do with a good pair, specially with the problem of the fluid in his feet.
He can walk around when I visit him, )and it is good for him to walk a little bit) but he cannot put on his shoes now, so needs a good pair of slippers. And  notice that after a little walk in the hospital and perhaps sit for a little while at the hospital "restaurant", he gets tired very quickly.
That's no miracle, he has almost no condition, no fat reserves or whatever. That's another thing that will have to worked on, but let's take things one by one and day by day for now!

Big thanks to all of you again for your support and good wishes and prayers. Hopefully Jan will be home soon and with good prospects of healing and getting to his old himself again, or at least more or less.
Till next time.

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