This topic contains 23 replies, has 12 voices, and was last updated by 
Ali 11 years, 9 months ago.
Hi Cathy
Did Ivan have an problems with Kidneys before SCT???How much chemo did they give him,they try to get it in and out of the body very fast with lots of fluids before during and after to minimize damage to the kidneys.
It does sound if he is one of the people,that some times have kidney problems,with the treatment,and it looks if this is creating extra problems.
You need to speak to a doctor,nurses can only tell you so much,write some questions down ask to see a doctor and find out why this has happened,Slim was given a half dose chemo,enough to do the job,because he had previous damage to kidneys and lungs.
If I was you,I would need to start finding out,a few facts even if it was just to put my mind at rest,did they tell you about all the risk.Eve
Dear Cathy
Im sorry to hear that Ivan is having a rough ride of it.
As Eve says, try and catch hold of a Consultant and ask your questions (they used to do morning rounds with my Mum).
No wonder Ivan is feeling emotional – and you. Just stay as positive as you can (its so hard to look cheery when you visit and your loved one is soo ill isnt it?) most days I came out of the ward, burst into tears and cried my way home – not a good idea when you are driving , and I thought Mum would never turn the corner – but she did.
Please keep us posted
Love Ali xx
Hi Cathy,
Ivan seems to have drawn a very short straw with regards to 'things that can go wrong' during a SCT. Ali's advice to grab hold of the consultant is sound and practical. 😐
In your shoes I would want to know what the medics expect to happen, in what order… you need to know how the different side-effects and procedures are affecting Ivan's progress and what needs to be cleared up first. Like Eve I would like to know if Ivan has had kidney problems before? I know that the medics are reluctant to allow the procedure for people with a history of kidney disease… Jo, a regular on this board was denied the procedure on that score and someone else more recently too.
If this is a new disease then I imagine that getting the kidneys functioning as good as possible will be their first priority. The transfusions will help buck up Ivan's strength and resilience but the diarrhoea is part and parcel of the SCT I'm afraid… but it will pass.
I will be praying for Ivan to reach that magical 0.1 in his Neutrofils and the beginning of the road to recovery… usually they let your out after your Neutrofils reach 0.5 (other factors such as platelets levels etc., notwithstanding but they usually follow the Neutros pretty quickly).:-)
So even if it does mean an extra few days to sort out his kidneys before they allow him to go home he will be starting on the long road to recovery… slow but sure.8-)
All the very best.:-)
Dai.
Hi Cathy
Just a quick message to let you know that we are thinking of you both and just hoping that Ivan "turns the corner" soon. As everyone keep saying we really all different and my husband remember well the panick setting in as day 28 in isolation, feeling rotten and having constant infections conditions with absolutely no improvement in the neutrophil level. Even my own nurse was looking a bit dejected but within a few days I turned my own personal corner and the bloods improved enough for me to go home – amazing once they picked up how quickly things improved.
Just hoping the same happens for Ivan very soon and that you are both home together again. You´r doing a truly amazing job Cathy and we all know how brave you are to keep putting your little smile on as you walk through the door.
Hope you don´t mind but I have asked for prayers for you (everything helps and the more people thinking of you both and sending you good thoughts the better!)
Very best wishes, love Carol xxxxxx
Hi everyone,
First of all thank you to all the friends on here who answered my post this week, your support and advice is really appreciated. Ivan is still on dialysis seems like he may be for a while to come yet. I took your advice and got talking to a doctor and a nurse who both gave me information to help us thought this. You are all right about Ivan's kidneys, they did suspect that he had something going on before the SCT. He has had a kidney biopsy earlier this year as they suspected amyloid but came back non conclusive. His kidneys are very deep and they went in to far apparently they need tissue from the outside of the kidney to get results, so because he was really healthy and he had good kidney function they decided to go ahead with the SCT. We knew the odds And how dangerous it could be for Ivan but he felt like this was his only chance of a better longer life. I have to say it dosent matter how many books leaflets information you read before hand. It's still a shock to see your loved one so sick. Any how things seem to be improving today it is day 18 after the transplant. He will be in hospital a month on Sunday. His bloods are improving the white cells have increased. Still has the high temp but they are dealing with it trying different antibiotics today as they can't find the infection. Thursday the doctors are having a meeting to discuss Ivan's progress and what treatment they will use next. Dialysis may be a long term solution, not sure but they took the central line out of his groin and put another more permanent one in his chest. I am glad I have this forum to come to where there are people who have come through this. Thanks again. I'll keep you posted on his progress.
Cathy
hi Cathy
Have you found some peace of mind with the knowledge you have gained????
It is hard Cathy,and upsetting to watch some one you care about going through this,but at the end of the day,is there much choice,you just have to not look to far ahead and think we will get through this,you keep asking questions.
I know there are people on here who are on dialysis,after SCT one person travels,another person has a machine at home,never give up, things are do able.Ivans kidneys may generate enough not to need it,The big thing is finding what infection he has,then they can try to control it.This should be your first concern,My advice is once you have a name for it,look it up,then you will know what Ivan is dealing with,no one should get serious infections,most SCT patients infections come from within there body,will be interesting to know were it,s come from!!!!!.Isolation should mean no infections,go in to that room.!!!hope this is informative.Eve
Hi Eve,
Thanks for your kind and very informative words. I will always be smiling every day I walk into that isolation room where Ivan is. it is really important to have a place like this to come and share your fears when you feel despair, this forum has given me so much help this week. Tomorrow he is getting a scan to see if anything shows up. And today the doctors got together. The sister told me that thy are concerned about Ivan's fatigue and that his kidneys have not worked in a week. But other than that he is improving. I think it is just going to be a long slow process. His temperature did rise today, but not as bad a yesterday, they seem to have control over it now maybe it's the change of antibiotic that is starting to work. As you say dialysis is not what we want but if he has to live with it so be it we,ll cope. I am hopeful that he will get better and all the prayers are really appreciated.
Thanks again Cathy
Hi Cathy
Just checking in to see how Ivans scan went? and how he is feeling.
I do hope you are taking care of yourself too, it can be very draining visiting hospital everyday. My dad found hed come home from visiting my Mum, then have to telephone round people to give updates which took about an hour and by that time it was bedtime and he hadnt relaxed at all!.
Please keep us informed of Ivans progress
Love Ali xx
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