I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: PreciousJeni on March 11, 2011, 10:29:27 AM
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Hi I'm Jennifer. 25 years ago i was diagnosed with nephrotic syndrome. After Kidney biopsy (several of them) and in and out the hospital, i was given a lot of medication. The doctor told my mom i probably wouldn't live to be a teenager. I'm 26 today and have two wonderful children Miguel 4 Mariah 2 months. I went to the doc late Jan of this year when Mariah got to come home. The Doc said my kidneys are 9%. I started crying because I do NOT want to do dialysis. SO after praying and crying I decided to do it but I just can't seem to make myself go get the cath put i my stomach because I'm scared. Does dialysis hurt?
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Hi. Welcome to IHD! :welcomesign;
Are you going on PD or Hemo? My husband has a stomach cath and does PD so I assume PD, but wanted to clarify.
I know where you are coming from - I was pregnant when this all happened and it is so hard on a young family. My thoughts are with you.
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Thank you. I believe its pd. How is it? does it hurt? Did the surgery hurt?
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Well, keep in mind I am not the patient but the caregiver. The surgery had to be in two parts, b/c we had an awful surgeon. Ask if they can do the entire thing laproscopically and then it will hurt a lot less.
The PD itself does not hurt at all. My husband jokes, watches tv, etc. with each exchange. Right now he does manual PD but might switch to overnights soon. You'll get used to it and it will become a new way of life. Hugs for you.
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oh ok. thanks. but why did the surgery go bad if you don't mind me asking? I'm just nervous about being put to sleep. Does he have side affects?
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Hi I am 27 years old started dialysis almost a year ago now. I have the PD cath and at first I was crying and freaking out that I had this thing hanging from my stomach (my fiance thought I was going to rip it out) to be honest it took me about a 2 months to be ok with having it ( the look it what bothered me) I bought a bunch of new clothes to hide it and I never should anyone. Now I show everyone and my best friend embraces the "hose" my nickname with my coworkers is hose it doesn't bother me at all anymore I don't care if people look at me weird it is keeping me alive. I totally understand that you are scared I was too but the right support group behind you and you will do great. As for pain yes getting it in does not feel good and about 4 days after you are sore. I put 1500ml in every transfer and at first it was uncomfortable but it was totally manageable. Now when I am emty it is uncomfortable but my PD nurse told me that if I had children before this it would be fine since you have already had your abdomen stretched so you have an advantage. To this day the only time I feel pain is if I yank my hose which I have done many times and drain pain they say that goes away with time I just still have it but I clamp off so I won't feel it to bad. Dialysis sucks at first but then you get use to it, except it, and keep fighting through. Don't get me wrong I still have days where I just cry because I get so frustrated but it is ok to get mad. I would say stick to this sight and talk as much as you want as any questions because all of us have been through it. Good luck and if you ever want to talk I am here. It will be ok this will not be your forever you are young and have 2 beautiful babies that need you so just take the leap and get the "hose" put in. :)
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:welcomesign; Jeni! I'm so sorry you're going through this right now. I'm afraid I have no answers (my Blokey [husband] is the one on haemoD) but you've come to the perfect place to get advice and support (and answers!).
*huggles*
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thanks so much. it gives me a little hope. :angel; but i guess its pain for everything. this life is pain
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Hi Jeni and welcome to IHD. I know you are scared. But, you need to do this. You have 2 kids that need you.
This is the introduction thread. I've noticed you keep asking questions in different threads. I'll move them to the proper area. Introduction is only for that.
Welcome
Rerun, Moderator :welcomesign;
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G'day, Jeni, and :welcomesign;.
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Hi Jeni,
My husband had his catheter inserted about four months ago. Here in the UK it was done under local anaesthetic and although it was a little tender for a while - it was not really painful (so my husband says - and he is a real baby when it comes to pain!) Since starting the CAPD there has been only some slight 'drain pain' when the bag has almost emptied - but now that has gone. The whole process is not painful but the aseptic technique required can seem a bit scary when you begin. I always sit with him to remind him of the procedure and it is an exclusive 25 minutes per day which I feel lucky to have. He almost died, so I am really grateful he can do the CAPD - so much more gentle and continuous than the haemo dialysis he was having three days a week initially.
I can't say he enjoys the sessions, ( massive sighs as he is washing his hands!) but I see it as a necessary evil until I can give him one of my kidneys. Just started initial tests for this. Everything was fine except on the chest x-ray my trachea appear to be a bit skew whiff. They say I may have an under active thyroid so will have to check my blood for this - although I can't say I have any of the symptoms, except for dry skin and being pale - I thought that was a Lancashire thing!
Try not to worry my dear and good luck with the procedure. :cuddle;
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I don't recall what happened, but the cath just didn't work the first go around. They had to go back in and fix it. '
Are you going to do manuals or overnight? Manuals you do 4-5x per day and they take around 20-25 minutes. Overnight you are hooked up all the time and it takes 9 hours but you have the day free. My husband was able to ask for and get a longer tube for his overnight machine so he could get to our son's room.
Tell us about your support system - is there someone around to help out with the kiddies during this rough time?
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Welcome to the group, Jennifer. If you're having a catheter put in your stomach, it sounds like you're going to do PD. I was on PD for 7 years and it never once hurt me except when I got peritonitis. Other folks will come along and have different opinions.