I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Brightsky69 on October 10, 2008, 10:00:06 AM
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One week from today I will be having a PD catheter installed. :puke; That's what I feel like. I can't believe I am starting dialysis again. This is so unreal..I am not supposed to live like this. Life should be good and it's not right now. I am going to have a tube sticking out of my gut for who knows how long. I worry that my boyfriend will look at the tube and not want to touch me ever again. Right now he is being so incredibly sweet and supportive. But will that last? I told him about the cycler machine I plan on using during the night and he said "Excellent....maybe the machine will drown out our neighbors Harley when he leaves at 5am every morning" I just hope my BF doesn't freak out when he sees the tube for the first time. He has never been through such a heavy medical issue before. He almost passed out when I told him what dialysis was all about.
I got a call last night from my sister in-law. My brother had to call our father to get some information from him. Everyone in the family is pretty much estranged from our dad. It's along story. In conversation my brother told our father that I needed another transplant. All my father said was "Yeah...I heard." My brother explained that I would be getting a PD cath put in place next week. And all my father had to say was "Yeah, well..she's had that before." :sarcasm; Like he could care less. All I have to say is Who the (blank) needs that loser!
I am scared guys. :'(
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:cuddle;
All I can tell you is...I've been there. I had my PD catheter put in on June 1, 2007. The months leading up to it were THE worst. I had the same doubts you do - how will my boyfriend handle it? How will he stand to look at me? Well...sometimes I don't think we give these guys enough credit. My boyfriend has remained at my side and swears that the catheter does not effect him. If he's lying I certainly can't tell. I am still pretty self conscious about my tube, but I just have to remind myself that it is my lifeline and those feelings tend to disappear pretty quickly.
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It IS scary! You're right to be scared, nothing wrong with that. But, as one of those who's on the other side of that event, it'll be over soon and you'll get through it.
There are plenty of people here at IHD who've been through the same. Look to them as you need to for support and encouragement. We all care very deeply and know what you're going through.
It's the unknown that's the scariest part I think. Once you find out what happens, it's a lot less scary.
From what you say about your boyfriend, it sounds like he's got a good head on his shoulders and he'll be there as you need him. Love is much deeper than a catheter, I hope!
-Devon
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:thumbup; It sounds like you've got a good man Brightsky.
I hope you can get through this tough time. Sending you some LOVE! :cuddle;
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It's very tough starting up the whole business again but your guy sounds like a good one and I'm glad that you have him with you. Your attitude towards the catheter is the best and only one to have , as it truly is your lifeline. I'm sure you guys will figure out a way to see it as a very sexy lifeline at that.
Hugs to you and I hope the being scared lessens soon. :grouphug; :cuddle; :grouphug;
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I understand your feelings. For two years after my PD surgery I refused to get in the hot tub with others (yeah, we all go in nekkid). My catheter wasn't in my belly, it was a presternal catheter, about an inch to the right of my left breast. Well two years later I just said poo on them if they don't like it (they all knew I was on dialysis), got nekkid, and got in the hot tub. Nobody said diddly squat. They didn't care about the bells and whistles hanging off me, they were just interested in me, the same old person they had known for years. After that I never denied myself the opportunity to get in a hot tub or to educate people on PD.
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You will do just fine. We all will be with you...Boxman
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Brightsky,
I couldn't help getting choked up myself when I read your post. Sweetie, I know exactly how you feel about being scared. I have been on dialysis for 10 months now and I STILL get scared! It does sound like you have a great boyfriend so, try & not worry so much about that part. :) Remember we are here for you! :cuddle;
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Brightsky,
I was so touched by your post. Like you, my husband Marvin had to start dialysis again after three years with a transplant (first time on dialysis was 5 1/2 years -- this time, it's been five years as of October 21). It was a tough time for both of us when he had to start back, so I know how difficult this is for you and your boyfriend. My hugs go out to you.
Concerning the appearance of your body...If another woman were to look at Marvin naked, she might see scars all over both his arms, his chest, his abdomen, his thighs (where his surgeon three times has "borrowed" veins and moved them to his fistula/graft-failed sites). He's had 14 perm caths, 2 Tenckhoffs (for PD), four grafts, a couple of "temp" caths in the groin, two fistulas, one transplant, and one nephrectomy (of transplant). He's also had about 50 surgeries in the last 14 years. What do I see when I look at Marvin (either clothed or naked :2thumbsup; )? I see a good-looking, wonderful, attractive, sexy, sexy, sexy hunk of a man!! To me, he's perfect just like he is. I love the inner man, and the outside shell doesn't matter. I don't even "see" the obvious scars -- although I do like to put my hand on his arm and feel the "thrill" of his fistula.
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You guys are the best...I hope you all know that. :bow;
I do feel better. I am convincing my self that dialysis will make me feel 98% better. Urine output is getting lower and lower.
Friends and family are being really supportive. My cousin who lives in Michigan called me to say she called the hospital to get info to see about getting tested to be a donor for me. I told her to please do NOT feel obligated to do this for me just because we are family. I told her that I could stay on dialysis for as long as it would take to get a kidney off the list. She said no reason for me to be dialysis if she has a kidney that would match me. Even if she doesn't match I know I can deal with dialysis for however long it takes! :thumbup;
Thanks for everything! :)
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Good news about the relative donor, Brightsky! And, I'm glad things are going better for you.
-Devon
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Wow i hadnt even thought of this issue.
My Karen is my lifeline much as my PD tube will soon be.
She is all i have.
So how sturdy are these tubes?
How long are they?
and can i use it to tie karen up now and again. (in a fun loving way)
I like this forum.
But the people here are the real stars :waving; :bow; :waving;
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not sure about the catheter tube paul but I bet you could save some of the other lines, tie them together....and oops that's getting off track isn't it? well I think you get the drift huh??? :rofl; actually, I'm on nxstage and most days I wish the blood lines were about 60 feet long so I could wrap in them to keep warm while I'm dialyzing. Try anything once....
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...and can i use it to tie karen up now and again. (in a fun loving way)...
I dunno, I think you should check with Karen on that!
:shy; :guitar: :bandance; :cheer: :rofl; :clap; You go, guy!
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Hi All :waving;
It's the day ofter the PD cathaher and I feel like someone stomped on my stomach. I basically had to sleep sitting up last night. It was just too hard to get up from a prone position. And the breathing tube left my throat a sore mess. I am just now getting my voice back.The PD cath doesn't seem as long as it was the first time.
Let the PD training beging!
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Feel better Brightsky :grouphug;
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Brightsky,
Since I am experiencing a ANOTHER cath being put in, I too, can sooooo relate to the feeling of someone stepping on your stomach but my neck feels more like that really. I can also relate to how your throat feels too but luckily FOR NOW I have not lost my voice. Lord help us if I do!!! I will for sure go "nuttier" then! :yahoo; So, lets just "hold hands" & hang in there together, okie dokie? ;)
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TynyWonder....hanging on tight. I know we'll make it! :cuddle;
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Hope the healing is speedy! :cuddle;
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Brightsky and TynyWonder, I hope both of you have a quick recovery and things start getting better. Sending you healing thoughts and good wishes :grouphug;
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I too hope you both heal quickly, good luck :thumbup;
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Thank you all for the well wishes! :grouphug;
Brightsky,
Have you noticed were are the same age? Kinda neat, huh? ;D
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Hi All,
Feeling less sore today. I called the PD nurse to set up some training. I am so ready to jump in the shower. The sponge bath is not my thing. But I need to get some training on changing my bandages....it's been too long and I forgot all that stuff.
TynyWonder....when is your b-day? Mine is June 1. :flower;
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Brightsky and Tinywonder. Hope you're soon feeling less sore. I too remember it was the mother of all sore throats. When you said the PD line seems shorter this time, remember you have to have the extension fitted yet. A tip to protect your PD tube is keep it achored so that it is well away from the waistband of your pants because the constant rubbing can wear away at the tube and lead to puncture.
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Thanks Ken! :waving;
I don't think I even want to take the bandages off until can see a nurse first.
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OK...what is the deal with my new PD nurse. I know it's been 17 years since I last did peritoneal dialysis but the nurse I had then didn't waste time getting back to me. A week before I got this PD cathather put in I called the dialysis center hoping to talk to the PD nurse so i could get scheduled for training. I had to leave a voice mail as she wasn't there. I never got a reply back. I called another PD nurse hoping I could get someone on the phone (because i had questions) She directed me to call the PD nurse my doc had passed me on to. She even called that nurse and couldn't get ahold of her.
I called my PD nurse again this morning and had to leave another voice mail. Still i get no reply.
I would like to know how to properly change these bandages without giving my self an infection. I know it's only been 3 days but I think I could use a change.
Am I being too pushy?? I want to get the ball rollin !
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Not at all too pushy. I'd be leaving my next voicemail with her supervisor. If you are being a bit over anxious (and I'm not saying you are BTW) then she should be calling to reassure you. :Kit n Stik;
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Dang I agree w/Monrein! I would not care if I *were* being too pushy because still they have not called you back to at least reassure you, that's BS!!!! Also, like Monrein said, the next call WOULD be to their supervisor!!!! It's your health AND peace of mind!!!! KEEP ON, KEEPIN ON and MAKE SOMEONE call you back! Dang! That makes me madder & madder the more I think about it! Let us know what happens, OK and good luck!
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Well...I called my kidney doc and left a message with him letting him know I don't even want to see that PD nurse. I told him I want to go to the PD clinic closer to my house. But when I called the closer clinic they said they didn't have any orders for me. Well...I can fix that. >:D hence I called my kidney doc to have him send some orders over there. His secretary even asked me when was I scheduled for training. I told her the truth that I had tried to get ahold of that PD nurse they gave me but can't get her to call me back.
The PD nurse I called at the clinic close to my house was nice. She tired to get ahold of that other PD nurse but couldn't get her on the phone either. She actually seemed interested in me and what was going on. I am not even going to waste my time with this other nurse. Everytime I call... no one at that clinic says she is on vacation or had a family emergency or anything like that. Two voice mails and no return call? What's the deal?
I remember the last time I was on PD. I had an infection and the doc put me in the hospital ASAP. I didn't even have time to call my mom to let her know I was in the hospital. I was just getting settled and my PD nurse called my room to see how I was doing. That is proactive.
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Oh yay! Does one clinic lose money they would have made off you if you go to the one closer to you. I hope so. So glad you got some action on this and also that this second nurse seems nice and interested too. Now that's a real bonus.
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Forgive me but I haven't been on the site in a month so I just read this string....sounds like you had tough time with that first nurse (things like that burn my ass). I am glad you called your doctor and got a new nurse at the other clinic. One thing I have learned with having had my mom on dialysis for seven years is that you can't be afraid to speak up, so I am happy you did. And you did nothing wrong at all by calling your doctor..it is your health afterall.
It sounds like your boyfriend is very supportive so you are very lucky. Don't worry about the catheter either. After a little getting used to, he'll barely notice it. Besides, you'll have a halter to keep it in so it really isn't so bad. My mom was on a cycler and I will tell you that they are not loud so unfortunately it won't drown out your neighbor's motorcycle :) Just one piece of advice about using the cycler...it is not difficult to use, but take your time when you hook up to it, wash thoroughly, wear your mask, etc and you will not have any problem. You're gonna be fine!!
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Thanks for all of the support.
The other PD nurse did finally call me back. She apologized for all the confusion. She says she was "out of town" and that she would make sure the phone screw up would never happen again. Whatever! :sarcasm; No one in her office said anything about her being out of town.
She is telling me that she can train me on manual PD as well as train me on the cycler all at the same time. She said she would call me back "in a little bit" and that was about 3 hours ago.
I just want to get on the cycler and get on with my life.