Starting dialysis

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Starting dialysis

Postby Yvette » Sat May 01, 2004 7:58 am

HI- just found out today that I need to start dialysis next week. My heart just fell as the doc told me. I know it is for my better, but I am so scared. I feel like a child. How am I supposed to be strong going through this in front of my own kids? I don't want them to feel how afraid I am. I have to go in tomorrow (Sat morning) to get chest XRays, EKG and labs. Usually they go everywhere w/me on wknds and tomorrow I have to make them stay home. They do know everything about my kidneys and I try not to keep info from them, but as for my feelings about the situation...well that I do keep from them. I dont want them to see me beaten by this. Any suggestions.
They have seen my fistula for the past 11 yrs, but its never been used so they are used to it looking normal. What will they be seeing now? Will they think I am just big freak show? I've never really been concerned by this until now(that I know I will be using it)
Wish me luck
I'll get back to you all later
yvette
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Postby JMan » Sat May 01, 2004 8:49 am

Hi Yvette,

Firstly, how you feel is completly NORMAL... Its a very deeply rooted fear of the unknown and is completly natural.. You feel like a kid who wants someone grown up to come along, take care of things and make everything allright.


How old are your kids?

You need maybe explain to them what dialysis is and how it works if you haven't already?..

As to the changes your kids will notice in the fistula,.. well they will probably notice the needle marks, and at first you are quite likly to get some quite bad bruising (you can get an ointment (Lasonil) for this to help the bruises dissipate)

My nephew (who was about 8 at the time) handled me being on dialysis quite well, and even came to visit me on the machine on a few occasions. He wasn't at all worried by the blood (unlike his dad!!) and asked lots of questions like you'd expect..

I know some units wouldn't allow this, but if yours does, why not consider it for when you are stable on the machine (after a few months or so) so that they can see what its like.

Kidney failure ( and dialysis) can happen to anyone (yes even kids).

I don't think your beaten, but I can understand how scared you must be.

Take it one day at a time, ask the staff at the unit (and the other patients if you can) for their experience..

There are some UK sites here: http://www.childrenfirst.nhs.uk/kids/he ... ilure.html

which are aimed (and co- written by) kids who are renal patients.. perhaps you can use these to help explain things to your kids????

you might find http://www.gosh.nhs.uk/gosh_families/index.html helpful if you search the site for the word dialysis.

Just some suggestions.. Hope some of it helps.. DO post back and let us know how it goes..
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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Postby Lorna » Sat May 01, 2004 9:41 am

Hi Yvette,
I understand totally how you must be feeling just now, I went through the same when I was told I was to start dialysis. My daughter was nearly 3 at the time, but we explained to her everything that was going on, in terms a 3 year old would understand. She was probably too young to understand the emotional side of things, but she knew mummy had a special tube in her tummy (I was on PD) for medicine to make me feel better. She was actually very proud of my tube, wanting to show it off to everyone and told the staff at her nursery the nursery hospital was no good as it didn't have a "kidney machine". She helped us set up the machine at night - it was her job to help her dad carry the bags of fluid through. We thought it best to explain as much as we could, then maybe she wouldn't be so scared by what was going on.

I was lucky enough to have a cadaveric transplant after ony being on dialysis for a few weeks, but again we explained to Eirinn what was going on and why, again in a way we thought a 3 year old would understand.

Kids seem very accepting of everything, probably more so than adults are. Just explain to your family everything that is happening to you and why, and when they see that it is all to make you feel better, I'm sure they'll be fine with it all.

Good luck, Yvette. We'll be thinking of you, let us know how you're getting on.

Best wishes,
Lorna
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Postby Kiwi Andy » Sat May 01, 2004 9:02 pm

Hi Yvette
It's perfectly normal to want to protect our kids from what we as adults find scary etc. I don't think we give kids enough credit for what they are able to cope with at times. Our own children were about 10 and 13 when Jenny first started PD. We told them that we needed their help and surprise, surprise, they just mucked in and helped out. They watched Jenny suffer when PD didn't work out and we never hid anything from them. As for hemo, they pretty much were given specific tasks that had to be done, whether it be keeping the house tidy, dishes etc. We had told them that dialysis was not to interfere too much with their lives and it didn't. I think where we were successfull with our own kids was that we always kept them involved and informed. When Jenny first had a needle pop out and pumped blood all over the place, I called for Deanna to come help me. She did what was asked and actually showed more concern about how we were going to get the blood out of the bed cover!!! And here was me worried that she may faint at the sight of blood. Maybe we were lucky with our kids, I don't know but I think the best thing we ever did was involving them through the whole process.
I wish you well.
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Hiya Yvette good luck starting dialysis soon ;) think of u

Postby Elaine » Sat May 01, 2004 10:49 pm

Yyvette good luck 2 u starting dialysis does im sure feel very daunting at first but you will get through this im sure ;) Really felt for you wen i read u post I felt same wen my daughter started dialysis 16mnths ago age 16 now. :? Thinking of you and good luck hav posted u a private msge in more detail.
take care best wishes Elaine ;) UK :wink:
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Postby Dionne » Sat May 01, 2004 11:08 pm

Yvette,
I know what you're going through. As a kidney patient and a mother. The though of dialysis terrified me for years! I always fought the idea and even thought it would never happen to me. I too worried about my kids and my husband.

In November, 2003 I was told that I needed to start hemodialysis. I was already on the transplant list and scheduled for transplant surgery in March, 2004, but my kidneys just wouldn't hold out. (I am now 8 weeks post transplant) I really fought not to be dialysed, but my neph explained that if I became ill, I would have to delay my transplant surgery and feel terrible. So, I began dialysis on December 9, 2003...terrified of the unknown. What I discovered wasn't so bad. Although I don't have a fistula, I had a perma-cath. (which was bothersome!) Other than catheter prolems, I actually felt better - less itchy, bloated, etc. The process itself is painless. I found the staff to be very comforting, especially in the first few weeks. Like JMan stated, talk to the other patients to get their views. Their perspectives go a long way.
Also, talk to the social worker. the social worker at my center was excellent and really attuned to the patients.

I am also a mother to two girls (ages 5 & 10). They have always known that I have SLE (lupus) and that the lupus has made my kidneys "not work." They also know that I needed a transplant that would help me feel well and to be a better mommy for them. We even framed dialysis as something that would help me to feel better, while helping my sick kidneys. Because children are not allowed in centers (due to HIPPA privacy laws), I asked the social worker if they could visit, so that they knew where I would be 3 times a week. They graciously complied, and even let the kids pop in from time to time to say hello. My transplant coordinator also provided some coloring books and materials specifically for kids, to help explain what was going on. It's scary for them, but I think it's more scary not to know what's going on.

Trust that everything will work out fine! Take care of yourself, and definitely keep us posted. Feel free to email me if you like. ritterbright@aol.com

Best,
Dionne
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Postby msdiva » Mon May 03, 2004 5:12 pm

Hey Yvette, Sorry to hear about you having to start with the "Iron Maiden" I hope you feel better soon, and i hope your transplant goes well. :D
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