Thank you so much Ellen and Dorothy for answering, That makes me feel a lot better, my husband went to his last appointment on his own so didn’t ask enough questions when they told him his count was rising, I will be there next time to see where we go from here. Dorothy I know its different for every patient so let’s hoping he is like yourself and have a while before treatment. At the minute he and I are in full time work and working around dialysis 3 days a week which Ivan does at home. Very proud of my husband and how he has coped with myeloma Sct and losing his kidneys he will retire next summer and I’ll keep on working life is what we make it and I’m glad I can come on here and chat.
I’m now organising a Christmas Day dip in the sea with family and friends for myeloma research it’s the least we can do for Ivan. We live in Northern Ireland and I have got about 25 family and friends getting together in a beach area called lisfannon in Donegal not far from my home in Derry. Should be good craic We have done the Christmas Day swim before for a family member who dies at 19 from a heart disease so know what I’m in for. And this time we are doing it for myeloma research and Ivan. It is hard being the wife or husband feel useless sometimes but thought better to something positive and raise funds for the research.
Thanks again for your support Cathy
So sorry Gail,
To hear of your loss. I was coming on here tonight to tell everyone of my husbands progress. But I seen all the posts you had and read them all with a sad heart. I will keep you in my prayers tonight.
Cathy
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 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 everyone,
Update on Ivan, he has been on dialysis 3 days now and the renal doctor says that he will be on for at least two more weeks. He is still very ill. It is now day 16 after the SCT no sign of his bloods recovering. He has also had to have a transfusion over a couple of days as they can't rush in with too much fluids as the kidneys have stopped working. He is also on oxygen, I am trying to be positive can't see a light at the end of this tunnel. Help. I have talked to the nurses and they say it's such an individual disease that it's a waiting game. He is running a temp as well not eating yet and diahorrea seems to be the worst of all. I found him very emotional this last couple of days but I'm trying to be up beat about things. Trying to convince him that he is going to get better, and trying to convince myself.
Thanks for listening
Cathy
Hi everybody,
Thanks for your support, Ivan and I really appreciate it day 13 after the transplant he has been in hospital for 3 weeks now. Kidneys have stopped working he has been on dialysis for 3 days and I do think, well hope that this is as Low as Ivan can go. He has been really sick diahorrea has been really bad for him. I know that a lot of you have been through this SCT so really appreciate all your advice and hopeful words you can offer. We hope that the dialysis will only be a short term solution. This is the one thing that the doctors feared because the renal Doctor has suspected that he has some amyloidisis, but tests were non conclusive. Anyhow he is being so brave I'm so proud of him and all that he has come through and thank you any one who has come through the same for your kind words. He actually felt hungry tonight asked for tea and toast couldn't eat it but the thought was there. Good sign I hope.
Thanks again
Cathy
Hi everybody,
Thank you for all your great replys and advice. It was really appreciated by myself and my husband for all your support. I read your messages to my husband and it made him feel a bit better, knowing that you all came through it and know how he's feeling. I do stay very chirpy when I visit him I don't show him how worried I am. We have read all the books and leaflets but I think things were just a bit low last night. He has got a fluids drip on tonight and some sedation to keep him realaxd. We are talking it one day at a time so thanks again for supporting us. Will let you all know how he gets on in the next couple of days. My husband has a great sense of humour and each day he sends our children text messages like he is in the big brother house day 1 day 2 etc. Thanks again.
Cathy
Hi Sandra
Thanks for your quick return. I will tell my husband about your experience he was sick from the day he got the transplant then it left him for a day or two but its back even stronger. I was saying to him tonight that after 10 days or so he may come a bit better so let's hoping that he will be like you and recover a bit by then. You are amazing getting home after 16 days he will love to hear that news, will give him some hope. Thank you again
Cathy
Hi Eve
Yes its sad to say we know what CDT is got that all explained to us when my partner was first put onto all these treatments, and we did a lot of research on these treatments and their side affects.
Cathy
Hi everyone,
Thank you all for your replys, I really appreciate being welcomed into you community, it really helped will chat soon my prayers are with you all.
Cathy
Hi Min
Thanks for your kind reply, we were feeling really sorry for ourselves this weekend but lots of set backs and the fact that the medication is making him worse is so frustrating, but hearing from yourself amd all the other carers on here who were kind enough to answer made me feel part of something. I am usually a very strong person have lost my sister to a brain tumour mother to a heart attack and my own father to cancer, and now we are facing this learning to cope and get on with it is tough suppose we will. As long as he is good i'm good but when he's bad phew I feel so helpless. Having to get back to work next week is another step facing friends will be hard but routine is what we need. My partner is back already trying to cope and doing well most of the time trying to save all his sick days for the future. He has most of his bad days at the weekend when he takes the chemo but thats good cause we are together at the weekend and I can support him. My work takes me away all week so its tough being apart during the week but thats how our life is we have been doing this for 10 years, we are so close, sorry for rambling on. He has had a very sore foot this weekend toes turning blue and very painful. Our own Doc does not know whats happening took some more blood tests but he has an appointment with his specialist on Thur so maybe we will find out whats happening to him. Sorry to go on so much but I feel better just writing to someone like yourself good luck to you and your partner he is lucky to have you by his side.
Cathy
