I've posted on the old site a few times. I care for my husband, John who's had it quite tough over the last few years. Just a quick history – Rheumatoid Arthritis, several knee replacements due to Osteomyelitis, broken ankle, broken hip due to a massive Plasmacytoma and then diagnosed in 2008 with Non-secretory Myeloma. He had CDT for that and has been in remission for a year. He also has high blood pressure and Chronic Kidney Disease probably due to all the antibiotics he's had over the years.
On 3 November this year he had a hip replacement which seemed to go quite well. When he came home five days later I noticed how bad his breathing was and how little urine output there was. I'm cutting it short here because that week was so frightening. He was really ill and went into hospital on the following Friday with acute kidney failure -we nearly lost him as the toxin levels in his blood were extremely high.
He's been in there for 13 days now and all is under control with the help of dialysis. They obviously have been carrying out tests all this time and it's that nasty beast that has returned and is giving him all this trouble.
Kidneys have still not budged but they've started him on Velcade/Dex. Just to top it all I've got disc trouble causing Sciatica and am waiting to see a specialist. I'm so worried about the future. I'm trying to be optimistic but it's hard. Has anyone got any advice or bright stories to help us keep our peckers up? I would appreciate it please.
Best wishes to all
Gosh Lynn, what can I say?. As a fellow Carer I know that there can be times when everything seems to be pointless. However, just do your best for John, because he needs to know that you are there for him. I am pretty hopeless at saying the right thing, but I am sure that there will be many more replies to your posting,and they will be a lot more constructive than mine.
Try and be positive and perhaps read that lovely poem(prose?)"Desiderata" by Max Ehrmann. It will give you some encouragement, I'm sure.
Hi Lynne what an awful time for you both no wonder you are frightened but dont give up hope It sounds as if they are beginning to get things under control, Dex is an amazing drig and very useful in myeloma as it reduces inflamation and helps other drugs to work There are a couple of people who post who have had acute kidney problems and needed dialysis but they werent on it forever , I am sure they will reply to your post and give you more reassurance than I can Four years ago I was in a bad way too , I had lost 3 vertebrae to myeloma and had major back surgery to prevent paralysis, my back is now mainly metal rods and plates …metal mickey!!The percentage of myeloma in my system was over 90% within a few months of starting treament this had lowered to a point where I could have a stem cell transplant After my transplant I was told the paraproteins were too low to quantify , meaning a partial remission which lasted 18 months I wont deny the treatment was tough but life got back to a normal state , maybe different but good all the same S please dont despair things will get easier and dont forget we are all here to support you both Sciatica is an awful pain so please try and make sure you take it easy or your husband will be worrying about you as well and dont feel guilty Have you got close friends or family who can help at all ? If you have ont be shy or too proud to ask them to help , they will be only too glad I am sure My best wishes to you both and hang in there good times arent far away Bridget
My husband has mm, he is in hospital and has been for 3 months now. I'm disabled with carers of my own. I live in Doncaster and Michael is in Sheffield and I get to him between 4 and 5 days a week. I cannot drive, others have to drive me. I have alot of disabilities which I won't name because over time you learn to just carry on!
Lynn just take every day as it comes. One day at a time. Do not look for the future, let the future take care of its self.
Yes you do have bad days, I blame myself for Michael being in hospital, but if I hadn't he would be dead now.
Al[b]so Lynn learn to rest yourself[/b] Then some good times will return.
All the best to you both
Thank you so much for that John. I read Desiderata and it is a beautiful poem – I've printed it so that I can read it when I get a bit down. I had a little cry and then read some of your back posts and your jokes made me laugh so that was good. It sounds like you and your wife have had your share of worries too, so thank you for taking the time to reply.
You are sooo kind. I've always read your posts and you are always there when people need you.
John had a kidney biopsy yesterday to see how much damage the Myeloma has done. Some results will come back fairly quickly but others will take some time,I'm told. John was a bit down yesterday after the doctors did their rounds – I think it's just dawning on him how ill he's been. I think they are preparing for him to come home as they can do no more for him at the moment as he is stable now. He's been fitted with a more permanant dialysis tube (sorry, I don't know what it's called). It will mean him going to hospital three times a week for dialysis. I also understand, but I may be wrong, that John has to have his Velcade injections on different days to his dialysis. I'm guessing it means he might be travelling to hospital most days, some weeks. (I'm fairly used to Myeloma terms but this kidney thingy is all new to me.)
I managed to see the doctor and told him how worried I was – I want John home, of course and he wants to come home but how will I manage with a full time job, John on crutches, a bad back etc etc?? He said I wasn't to worry and that a care package will be put together. So I feel better about that now.
The back is still giving me troubles but hopefully I'll get my appointment through soon, get it sorted and will be able to drive again and look after my dear John. I do have two very kind sons, two lovely daughter-in-laws and some nice friends – so I'm lucky there. I think I just had a little panic.
Thank you for being there for me Bridget, when you clearly have so much on your plate. There really are some remarkable people on this site and you're one of them.
I'm so sorry I haven't been in touch lately but as you can see, John has been very ill since I last emailed you. I'm so sorry to see that Michael is still very poorly.
Thank you so much for taking the time to reply to my plea for help. You are quite right about taking one day at a time – you should know all about that.
All this came out of the blue with John. He was so excited to have his hip replaced with the possibility of walking without his crutches – it's been years. Then suddenly all this happened with the kidney failure and the Myeloma back again. I think I just panicked but feel a little better today.
I really hope you get some good news soon about Michael. It would be such a nice Christmas present for you both if he could be home with you. I'm wishing that for you.
Thanks again Roz
Sorry for not recognising you but I've been in a mess with Michael.
I doubt very much he will be home for christmas after what happened yesterday. Still got to have the meeting with his consultant.
I hope both you and John are ok, and he starts recovering well.
Talk to you more later
I'll talk now last night was too late and a glass too many wines!:-D
Sorry to hear about John and hope he starts to pick up real soon. You too should rest when possible. I don't sleep much but a lay down b4 I go aids my back abit, especially 6hr visists.
We found out the other day that most of Michaels infections all stem from his intermediate infection in his arm. So now his consultant, nurse, Michael and I have got to discuss how to treat his myeloma and arm together, otherwise he'll never get home. The revlimid and dex is helping his myeloma improve but these infections don't help his life.
Any way all the best to you both. Keep smiling:-) I try to.
Love to you both
Dear Lynnie – I am so sorry to hear of all the problems your husband has been experiencing and I am truly not surprised you are struggling with remaining positive and optimistic.
I could write chapter and verse about how I cope/don't cope as a patient but I can't as a carer. I sometimes think it is worse for carers because as patients we are in it and know how we feel. As a carer sometimes I think you must feel so helpless. I can't offer you much help in how to cope but I can say that you are wonderful in all the loving and caring for your husband. I am sure he knows that too. Lynnie I wish you all the strength you need and a very positive outcome to your husband's current situation. Hang on in there – you are being thought of on this discussion board.
Love, Gaye x
Thank you so much for your kind words and thoughts.
It is very hard. Today John was told that his kidneys are unlikely to repair themselves. He took this news badly, of course and phoned me at work, very down. I managed to leave early to visit him, give him a big hug and a good talking to. I told him that plenty of people go on for years on dialysis and that he should try and think of all the future hospital visits for dialysis as a part time job – something you have to do even though you'd rather be doing something else. I told him how much I and the family love him and that we wanted him home with us. I hope I said the right things and that he feels a bit brighter tomorrow.
Thanks again Gaye and wishing you the very best of luck with your treatments. Thinking of you too.
Hi Lynnie so sorry the news about Johns kidneys wasnt good It must be very hard to accept no wonder he was down I am sure you said just the right things and will get him through it , he is a lucky man to have you with him all the way Hope he feels brighter tomorrow love Bridget x
I am sorry that the news was not good for John and you I hope he feels a little bit brighter today. Do keep us posted on his progress
Thank you so much Bridget and Gill – John phoned earlier today to say that they are taking a biopsy via his sternum next Monday. It's not viable through his hip as he's recently had a hip replacement. I think he's a bit worried about it. I must admit it does sound gruesome – do you know of anyone whose had this done?
I haven't seen John since Tuesday evening because of the weather and roads but might try and catch a bus later today.
I hope you are both keeping as warm as possible. I'm getting fed up with the snow now.
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