I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Yvonne on March 24, 2008, 01:46:57 AM
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Hi I'm new here, not quite sure how this site works, but I'm here for my husband. He is going into hospital on 11th April to have a fistula put into his forearm. He is very unsure about having it done as he thinks he does not need it yet !!!! He had one kidney, the prostrate and his bladder removed last year all with cancer. Then this year he has had 2 strokes. So he needs a lot of support.
Now I have a bit more time to tell you the story about John.
About 4 years ago John went into hospital for a Hernia operation. On having an Xray they told him he only had one Kidney, he was quite proud of this telling every one he was born with just one Kidney thought he was the only one, until we looked it up and this is quite normal for some.
However he has always been fit played football in his younger days and was a referee until Nov. 2006.
In Nov. 2007 we moved house to a new county. Over Christmas he became very grumpy, tied felt like he had the flu all the time. He then started to pass blood in his urine and then he became incontinent. The Doctor said it was his age (71) and these things happen when you get old. He went back to the doctor many times with these flu like symptoms but still the doctor did nothing. One day at the end of January I went with him to the doctor and demanded that something more should be done for him as he was now very ill. The doctor said alright get yourself to the hospital for a blood test, the next day we went to the hospital for 10 o clock in the morning got home at 2 o clock at 4.30 we had a call from the doctor to get John into hospital as soon as we could. We got a Taxi there and John was rushed into specail care he had Acute renal failure and they said another 4 day and he would of died.!!!
After tests and Xray and CT scans they found John had a horse shoe Kidney and one of the Kidneys hadn't worked for some time. In July 28th 2007 they did major surgery on him. He had stage four cancer on his badder, kidney and prostrate all were removed with success thank goodness.
They now check on him every month for kidney tests and say he will have to have dialysis soon. He has loads of tablets to take plus EPO. and should be on a diet which we find hard to keep to.
Needless to say we are not fond of our doctor's, this cancer must of been going on for about 4 years and because he was a fit man no one picked up on it.
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John, you have come to the right site for support and information. We are a big family here at IHD and will help with all your questions and concerns. Pleasr look around and feel free to post often
Boxman /Moderator
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Hello John's wife... :welcomesign; This is a great group of people here fully supportive and the site is very informative. :big hug:
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Hello and :welcomesign;. This is a great site and you'll find lots of help, advice and fun too. I'm a carer for my Dad in the :ukflag;, I'd say the majority of people on here are from the USA but there are lots from all around the world and they really are the experts on kidney disease. Ask whatever you need to know.
:bunny:
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:welcomesign; John's wife! We are glad you are here, for yourself and John!!
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Welcome to Ihatedialysis.com
Well you got your introduction in the right place, that's a start. If you need any help at all just ask any Moderator or Admin and we will be happy to help. You have come to the right place and I hope we can become a great asset to you and your husband. Keep reading and Post often.
Sluff/Admin
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:welcomesign; John's Wife, you sure have been through a lot. We are a great group of folks here and we'll answer any questions for you or listen to you rant if you need to. Take Care.
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:welcomesign;
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:waving;
Welcome! Good luck to John on getting the fistula. I am also a caregiver, predialysis, prefistula/graft (not sure which mom will get yet). This group is so supportive and gives you what you need when you need it. Humor just as much as knowledge. take care
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:welcomesign;
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Hi John's wife.
:welcomesign; to the IHD Family!
You'll find lots of support here.
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Welcome! It sounds like your husband has been through a whole lot -- and you as well. Pull up a chair and make yourself at home at the big IHD family table.
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:welcomesign; to this most Awesome Forum. You will have lots of support and gets lot of info around here.
Take care
Sandyb
:bunny:
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:welcomesign; So glad you found this site. It will be a great support for both of you. I don't know how I would have handled the past 2 years without everyone at IHD. Your husband has been through a great deal. Please tell him he has lots of friends he hasn't met yet that will be keeping him in our thoughts and prayers :grouphug;
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:welcomesign;
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Come right in and make yourself at home John's wife, and tell your husband he is welcome, too. Hope this will be the beginning of something better for you two.
Love, Mimi
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:welcomesign;
I am a caregiver, too. This site has given me more than I can tell you...knowledge, comfort, understanding, lots of laughter.
:bandance; annabanana
EDITED:Fixed smiley tag error-kitkatz,moderator
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I first must say a big thank you to you all for your messages. I have told John about this site hoping he may sit down and write down his thoughts. But I'm afraid he has left it all up to me to do the worring, he has his head in the sand! and will not talk about the way he feels.
Are there many of you men out there, that have had the bladder removed and the kidney, having to wear a stoma bag? Can you make me understand the way he feels. I am the one that has to change the bag for him as he won't even do that, so goodness knows what he will be like when he has dialysis. :Kit n Stik;
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first off, welcome aboard!!!!!
Second, this is gonna be stressful for you having to do all this work for him. If he is able,
he needs to do it himself, at least part of the time!!!
Can you talk to his doctor about this? Does the doctor know how severely depressed he is?
YOU need time for YOU. I so hope you can find some!!!!
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:welcomesign; to John's wife!
Sending many thoughts your way hoping things will get better for you both :grouphug;!
NolaGail
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I first must say a big thank you to you all for your messages. I have told John about this site hoping he may sit down and write down his thoughts. But I'm afraid he has left it all up to me to do the worring, he has his head in the sand! and will not talk about the way he feels.
Are there many of you men out there, that have had the bladder removed and the kidney, having to wear a stoma bag? Can you make me understand the way he feels. I am the one that has to change the bag for him as he won't even do that, so goodness knows what he will be like when he has dialysis. :Kit n Stik;
It's overwhelming for the patient, that's for sure. John is lucky to have you.
My daughter had a bad bladder and we were put in touch with a surgeon who creates new bladders from bowel tissue. He augmented our daughter bladder and the surgery was a success. Is this something your husband has considered?
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Welcome, John's wife! I'm a caregiver, too, and I'm glad you found this site for YOU -- even if John doesn't want to participate right now. My husband is the dialysis patient in my house.
As for the stoma bag, my mom has an ileostomy (wears a stoma pouch for fecal wastes); she had her large intestines removed in 1975 because she has Crohn's disease and her colon ruptured. She almost died, and when she woke up with the ileostomy, she accepted it right away because she was so happy to be alive. This will be her 33rd year with a stoma. She can never have a reconnection because the doctors found pre-cancerous cells in her rectum about a year after she had the ileostomy. She chose to have her rectum removed then (even though she knew it meant she'd have a stoma for the rest of her life). She still works full-time (she's 70), but she plans to retire (again) this summer. She lives a very full, active lifestyle and has had only minor problems with her stoma.
If a bladder re-creation is not possible, is there a stoma organization and/or support group near you that could help John come to terms with his stoma? Hang in there, and be strong for him. We're always here if you need us.
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Welcome to our community! You guys have been indeed faced with a challenge. But I am so impressed by the triumph of the human spirit over any challenge, that I know you will make it through. And we are here with you all the way. This is just the place to be where other care, and understand what you are going through. This is a good place to vent when you need too. It is also a good place for a laugh and relaxation. YOu are now a part of our international, caring and sharing IHD family. :grouphug; Take advantage of everything this site has to offer.
Bajanne, Moderator
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Hello John's wife
I'll be thinking of you and John on Friday the 11th (I'll be meeting with the anesthetist that day about my fistula surgery on the 15th). I've been through this before and don't have my head in the sand but can to some extent understand John's refusal to believe its really going to happen. He's very lucky to have you and you need support as much as he does and maybe even more because you're working and worrying for two. People here really do "get it" and I hope we can help you feel a little less alone as this goes along. You can even be "unreasonable" (personally I think that's the most reasonable way to feel about it all sometimes) and some here will understand exactly how that feels. Hang in.
Gail
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:waving; Hang in there! I agree that John is lucky to have you. In time maybe he'll be interested enough to join us, as well! Good luck on the 11th!
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:shy;
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How did the fistula surgery go? Mine is buzzing away and I'm feeling good? Hope John is also doing well and you too of course.
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Hi Thanks once again for all your support. It's been just over a week since John had the fistula fitted. We can feel it buzzing, but he is getting a lot of pins and needles and a cold feeling in that hand, is this normal? he goes back on the 30th to have the stitches removed.
He is also feeling very itchy all over his arms and legs! is this normal.? He is very short tempered as well, but I am trying to count to ten. I know he is very uncomfortable with his body, he has a terrible cough that has now caused him to have another hernia. We have to make an appointment with the doctor today to see if he can be fitted with a surgical belt. He was offered an operation to fix the hernias but he said no. He has have an xray for the chest but we have not had any results back yet, so we say no news is good news.
Are there many people from England on this site? Yvonne (John's wife)
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Are there many people from England on this site? Yvonne (John's wife)
Not huge numbers but increasing all the time, there's me and then Ken and Kickstart are regulars and I'm sure there are more who read but don't post often - I suppose it's up to those of us who have been lucky enough to find this site to spread the word throughout the UK!!
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Hi Thanks once again for all your support. It's been just over a week since John had the fistula fitted. We can feel it buzzing, but he is getting a lot of pins and needles and a cold feeling in that hand, is this normal? he goes back on the 30th to have the stitches removed.
He is also feeling very itchy all over his arms and legs! is this normal.? He is very short tempered as well, but I am trying to count to ten. I know he is very uncomfortable with his body, he has a terrible cough that has now caused him to have another hernia. We have to make an appointment with the doctor today to see if he can be fitted with a surgical belt. He was offered an operation to fix the hernias but he said no. He has have an xray for the chest but we have not had any results back yet, so we say no news is good news.
Are there many people from England on this site? Yvonne (John's wife)
I had my AV fistula placed on Oct 31st and and I still get little prickly sensations every now and then. My surgeon said it's the nerves "waking up". ??? My arm doesn't feel cold, but if I place it on a hard surface it always feels as if the surface is cold and wet. That bugs me. Otherwise it's good. Is it in his wrist or his upper arm? When it's done healing, be sure he doesn't sleep on that side or that arm. I've heard that can be bad sometimes.
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We can feel it buzzing, but he is getting a lot of pins and needles and a cold feeling in that hand, is this normal? he goes back on the 30th to have the stitches removed.
He is also feeling very itchy all over his arms and legs! is this normal.?
Yvonne (John's wife)
Thanks for the update. Yes, I also had pins and needles and my hand was so numb I was scared and went back to the hospital. Nothing was done and it just went away. It comes back every now and then. I have to be careful how I sleep with my hand. BTW, I don't have a fistula; I have a graft. However, I haven't had any itching. That is usually associated with high phosphorus levels.
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:welcomesign;
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Hi Yvonne, I'm new to this site too and I can tell you I have an aprehension to doctors as well. I almost died when I was 13 because a doctor told my mom when I was very sick to go home and feed me red meat because I was anemic. Yeah, I was because of kidney failure! That misdiagnosis almost ended my life. Maybe your husband is just feeling angry because of that but he can't let you do everything either. It's rough, but he needs to take charge of the illness (with your help and support). It can be empowering for him to take control of what he can. By the way, my fistula buzzed too and even though it hasn't worked in over 25 years (disconnected after first transplant), I still get some coldness in my left hand.
Hope this helps,
Bill
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Hi there can anyone help me. John's skin itches all over most evenings now, it started on his legs but now it's all over his body.
Do you think it's to do with his kidney and also his diet???? Also he likes sitting in the sun maybe you are not supposed to if you have kidney failure.
We are not due to go to clinic until 29th. I told John to phone up about it but he won't what am I supposed to do with him.
Yvonne
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Itchiness (pruritus) is a common symptom of kidney disease related to toxins that aren't being cleared away by the kidneys (or even dialysis sometimes). It's a horrible symptom and can drive you nuts. A dietician may be able to help but I know that John doesn't want to deal with this stuff. Could you do a Google search of "itchiness and kidney disease" and print it out for John to look at on his own schedule? Cutting back on protein might help but I'd consult a dietician to know for sure where to begin. I used to use calamine lotion but I can't say it helped a whole lot except that I felt I was at least doing something.
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Your husband sounds so much like mine! And you sound like me. Itchy skin is normal. I think the sun is fine for him.
I know you want to get him to a doctor whenever anything at all happens...that's how I feel, too, about Randy. But I'm usually over-reacting. Right after he was diagnosed I wanted him to see a doc every day of his life....I was so scared. It's been 5 months now since he started having kidney problems and I've calmed down a LITTLE. The 29th is right around the corner!
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Sitting in the sun is just fine. It really is. If he feels good, then have at it!
As for the itchies, I got them, sometimes still do. Benadryl helps somewhat. The cheap drugstore variety is fine.
That's the toxins not having anywhere to go so....they become itchies. Ick. I hate them too.
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I read somewhere that sunshine actually helps itching.
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Hm. Kinda makes sense. Vitamin D? Or just the general sense of warmth the sun provides?
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Thanks for all your help. Will phone the doctor today to see if he will give John (Piriton) see if that will help it's driving him nut's.
I have added a bit more about John! don't know if I did it right, added to the first letter a wrote. One day I will go back and add some more to it.
But the bit about John having a horseshoe kidney, there can't be many of these about in England because when his Xrays came back every surgeon in the hospital kept coming in to see it. Infact every time I asked to see the xray it was always away on some other ward. However they did manage to take the bad one away. Be interesting to hear from anyone who has the same condition.
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I am sorry I so late in welcoming you to the site! Welcome, welcome! This is a site for all kinds of information. Your husband is lucky to have you. Share the posts with him. Have a good laugh in the off topic section. Ask your questions for support when you need it.
kitkatz,moderator