PD and houseguests

[MooseMom]

I am not on dialysis yet, but as I suspect I will be soon, I've been weighing my options and think I will go the PD route. 

This may not be a problem, but it is something that is bothering me, and I am wondering how the rest of you deal with it.  What do you do when there are overnight houseguests in your home? 

My husband has a 14 year old son who comes over every other weekend...the usual visitation set up for divorced dads.  My stepson is a really great kid; we get along really well.  He's very nice, but like most 14 year old boys, he is a bit on the shy side.  Truth be told, I am, too.  We have not really had a chance to get very close; he's not here that often, and there's the "I don't want to like you to much because my mom might get mad" element to all of this.

It occurs to me that the PD exchanges are, well, sorta private, ya know?  I just don't think it's something I want to be doing with a guest in the house, even if it is my husband's son (maybe, BECAUSE it is my husband's son...it just doesn't seem appropriate).  Maybe I'm making too much of this, but, well, I am thinking that perhaps he will think it is all really gross and that he will be uncomfortable with the whole thing.  Our house is not really big, so there's going to be a lot of PD bumph around, and I am not sure that I won't resent the intrusion.

There...I said it.  I think I will resent the intrusion.  I don't want to feel like I have to hide in my own house.

I've talked to my husband about this, but I haven't told him the real truth, which is that I don't know if I want his son around, especially during the first several months while I'm trying to get used to the whole dialysis/PD thing.

Anyone else ever come across this particular dilemma?

Thank you.

[glitter]

I'm sorry that you would feel uncomfortable, but if you tell your husband you do not want his son around because of your PD, how do you think that will make him feel? And to not want him around for a few months- that seems unreasonable of you to expect your husband and his son to sacrifice that much. You might resent the intrusion, but you are the adult with the power. He is just a kid, and he will know if you resent him, then maybe he is going to resent you for making his dad choose between you. I would think your husband does not view him as a 'guest' either,  but more as 'family'.

[MyssAnne]

I see it differently. So many members of my family have seen me either on manual or on the cycler. It doesn't bother me, it's part of who I am. Guests have seen me too, I've been hooked up on the cycler when my fiancee was showing people (his family) around the house.   IF anything, this would break the ice. It's cool stuff for a kid!!! If you make it matter of fact, it becomes part of the routine in the family. No biggie. If you make it something hush hush, then yes, it becomes something not to be spoken of.  This is my experience, take what you can out of it.

[angela515]

If you don't want him to see you on it, don't have him in the room when your hooked up... simple as that

[MooseMom]

I know exactly how he would feel, which is why I have not told him but instead come onto this board for some feedback.

I do not expect my husband and his son to sacrifice anything for my comfort, which is why this is a problem for me.

It is akin, in my mind (and keeping in mind that I have not done PD yet...I am just trying to make my way through all of this), to breast feeding a baby.  It is not something that I would want to do in front of a 14 year old boy who is not related to me.  Now, I think women should have the right to breast feed wherever they want, whenever they want, and if someone doesn't like it, then tough.  But I am talking about doing something relating to a bodily function here in the privacy of my own home.  While I don't want anyone to have to sacrifice anything for me, I do think I have a right to feel comfortable in my own home, especially when I am dealing with something as emotionally and psychologically traumatic as starting dialysis.

On top of the privacy issue, I know that I probably won't be feeling particularly well at first, and the thought of having to cook and clean for yet another person is a bit daunting.

So, how would YOU deal with something like this?  What do YOU do when houseguests come over and you have to drain and dwell and whatever?

I don't think this will be too "cool" for my stepson.  He is a very private person...he is actually a lot like me.  I think he will be intimidated.  It may be no biggie to other people who have been on PD for a while, but to someone just about to start out, it doesn't seem "cool" or "no biggie".  I'm sure that in time, it WILL be just an inconvenience, but surely it will take a little while for me to become comfortable enough with it to enable someone else to feel comfortable.

And btw, it is not HIM that I resent...it is the intrusion upon my privacy that I think I will resent, and I don't think I should have to deal with that on top of everything else.  But I guess if dialysis is so easy peasy, then I have nothing to fear, right?

OK, I guess I can just go hide in my room for the whole time.  That's easy enough!  Thanks everyone!

(Just to make it clear, it is not my stepson ONLY that presents a problem.  I'd feel the same way with anyone that I did not know very well being in my house as I'm struggling with exchanges and stuff.)

[MyssAnne]

But if you hide, you're gonna resent it that YOU have to go away. Are you on manual, or the cycler? If manual, it's not too long, and yes, it can be done in the privacy of your bedroom. I can understand your feelings, I really do, and am not brushing them off by any means. Once you get the hang of it, yes, pd is 'easy 'peasy' as long as it goes well.

I saw this more as a nonthreatening way for you and your stepson to get to know each other better.
My son and fiancee both helped me, and were with me whenever I did the manual, they even would make comments on how good the drain looked, etc.

The main topic here is YOUR comfort. You do what is best for YOU. Hang in there, PD is a lifesaver for me, and I appreciate having it!

[angela515]

If your doing manual, you can fill up in your bedroom... then unhook and dwell anywhere in the world for 3/4 hrs and then go back to the bedroom to drain. If your doing the cycler, you also do that in the privacy of your bedroom, and it's usually done while sleeping.. so I am not sure how this interferes with the kid.

[MooseMom]

I'm not on dialysis at all yet, but my GFR is 19 and dialysis is on the horizon.  I've been battling FSGS for 16 years, and despite my best efforts, I think I will have to prepare myself for dialysis.  I'm trying to be as informed as I can be before I actually start, and I understand that the decisions that I make for myself will also affect other people, especially my husband and his son.  I am just trying to anticipate everyone's feelings so that I can prepare everyone for what is to come.  I am not sure how to prepare a teenaged boy that I don't know very well.  I have worked very hard to make him as comfortable as possible coming to my home.  His mother has keep my husband's other children away (he has not seen them for almost 4 years, but that's another story...), and his son is the only one who comes to visit.  Consequently, I am very very committed to making him feel welcomed and secure and happy.  I think he DOES feel this way, and I want it to stay that way, but this dialysis thing is just overwhelming, at least it will be at first, and I am trying to find a way to keep things on an even keel despite the upheaval of my own emotions.

My own son is autistic and lives with his dad in England; special schools are much better over there than in the US.  I don't know what in the world I will tell my own son; he worries so much about me because I am so far away, and preparing him is a whole 'nuther problem.  I'm trying to take it one kid at a time.

And Angela, I'm not sure how this interferes with the kid as I am not on dialysis yet, and that's why I was merely asking if anyone who IS on PD ever had any problems with privacy, etc, when overnight guests come to visit. 

[angela515]

Totally understand... just trying to explain that it is private. I have a 6 yr old and a 5 yr old who were 4 and 3 when I started dialysis, so I totally understand the private thing.

[MooseMom]

The simple truth is that my stepson is not my "family".  That's not his fault; like I've said, he's a really great kid, and I enjoy his company while he is here.  But we are not "close" because we have not had the chance to be.  This every other weekend arrangement is not conducive to forming a close and comfortable relationship.  I understand that my husband views his son as "family" and not as a mere "guest", but I am the one going on dialysis, not my husband, so the dynamic is different.

Helping someone on dialysis strikes me as somewhat intimate.  You perhaps share the experience with a spouse or children or other family members.  I am not sure that my stepson's mother would be very happy with him becoming close enough to me to actually help me out, kwim?

Look, home dialysis is not rare, and God knows divorce/blended or step families are not rare, either.  I was just wondering if anyone out there had to deal with both home dialysis and every-other-weekend visitation with your spouse's children.

[KT0930]

MooseM, I started PD in early November and did manuals for many months before starting on the cycler. Though I have not had any overnight guests, we have had visitors to the house while I was doing PD, especially on Christmas day. When it was time for me to do an exchange, I went into the spare bedroom to connect, like I always did, but then I set up my IV pole right in the middle of the living room with everyone else sitting there while I drained and filled. Yes, most of the people present were family (in-laws included), but we did have a friend and his mother (who I had never met before) stop by while I was connected. It was no big deal because I decided it was no big deal. If you think it's going to be a big deal and make your step-son uncomfortable, then it will be.

If you're concerned about how he will react, have your husband talk to him about it before you begin dialysis. At 14 years old, he's old enough to hear about these things and comprehend that you must do this to live. If this doesn't work, then remember that a manual exchange takes less than an hour at a time, you could tell them that you need some time to yourself (you said you're a private person), and take your supplies and a book into your bedroom.

[KR Cincy]

My step-daughter is 8 and knows more about dialysis than most 30 year olds! She's seen her mom stick me when we hook up (she usually wishes her luck for "2 good sticks"), she watches the blood fill the tubes (I'm home hemo), knows which side of the chair to come to for a hug, and I've told her that me and the machine will win her every science fair she enters (she then asked "what a science fair?"...guess I was a little ahead of myself with that one!)

Kids want to know what's going on, want to have their questions answered, and want to be part of the family...and since dialysis is part of our families know, excluding them is not the way to go. Give him credit...it might be rocky at first, but they come to realize that this is just the way it is.

[KICKSTART]

I have done PD manual for 3 yrs now .. i really dont think its a big deal tbh . I dont need to do it in front of anyone now , but i still do it in a bedroom. I keep all my stuff in one bedroom and use it to store my stock and do my exchanges only because once its done i can shut the door on it all. I would hate having it all over the house as a constant reminder. Personally for the amount of time it takes to do an exchange .. i dont think anyone would notice if you slipped away upstairs. I would have no problem doing my exchanges in front of a room full of people as i feel its nothing to be ashamed of or need to hide away. The more you make an issue out of it , the more it will become an issue.

[MooseMom]

OK, thanks everyone.  I guess that once I actually start doing it, it will become no big deal.  It's just that in the very beginning, it WILL be a big deal; I know that ALL of you understand that beginning dialysis is a HUGE deal, and I suppose I am just not really comfortable with allowing someone I am not really close to witness my struggles.  Does that make sense?  I know that I will be really afraid and nervous at first, not to mention probably sorta sick, too.  Just not the best time to have visitors, but I guess I have no real control over visitation schedules and such.

I guess that my husband is the one to talk to his son and explain what's going on; I can act nonchalant about it all, and if my stepson is still uncomfortable, then, well, there won't be much I can do about it.

[mariannas]

Well...I've only been doing exchanges for what...five days now?  So, I'm not sure how valuable my advice is, but I'll put my two cents in anyways.  I think your family (including your stepson) is going to be way more supportive than uncomfortable.  I have found that (for me) every step of the process has been a huge, worrisome build-up only to find that it's really no big deal?  Getting my catheter in was a super scary prospect.  I agonized about it for months last spring.  When I finally had it put in in June I was scared to look at it at first, but within a few days I was like, "Huh...now that wasn't so bad, was it?"  The same went for PD training and the consequent exchanges. 

Obviously I haven't had houseguests yet, but when I do I plan simply to tell the truth and excuse myself.  I do them in my bedroom since my dog isn't allowed in there so I'll just go in there and rejoin half an hour later.  I think the main thing is to be open with your family BEFORE you start.  That way they are prepared.  All of my good friends (the ones who would actually be houseguests) are aware of my situation and won't even blink when I tell them I have to do exchanges.  I've been babbling about it for months so it's already a part of my life and wasn't nearly so shocking when I actually started.  In this case, honesty really is the best policy.

I also hope that you won't let your fears make you chose a form of dialysis you don't want.  If you want to do PD, than you should be able to do it gosh-darnit!

[MooseMom]

Actually, Mariannas, your advice was very valuable.  You're still new at it, so your perspective will be closer to my own once I start.

And you are right...often, the anticipation of an event is scarier than the event itself.  People have the most incredible ability to adapt, and I'm sure I will, too...eventually.

[goofynina]

I must tell you that i involve any kids that come over in my treatments, whether it be setting up my equipment, tearing it down or taking inventory of my supplies, i say to include him and learn together,  all my kids put on masks, they all know the correct technique to wash their hands and they know how to give me shots.  If you dont have a bond with him now, do you plan on ever having a bond? of course you do, so what better time than the present,  i say dont hide what you are doing, let him know, you never know if what you have to teach him could be of some value to him later on in life.  Good luck and please let us know what you decide 

[MooseMom]

I know, goofynina, that you're right, but this kid is not my own, so it is really not up to me to decide how much he will/should or will not/should not be involved.  I am quite happy to form a bond with him; I have been trying to do that for several years now, but I cannot assume that this is what HE wants.  I am not sure that he would feel comfortable forming a bond with me because then you get into the whole "I don't want to betray my mother" mentality.

Since it is my husband that is the parent, it is probably up to him to decide how much his son should be involved, and while I understand that, it does leave me feeling a bit tenuous.

On top of all that, no 14 year old boy is going to want to spend every other weekend with his dad and his dialyzing stepmother who will probably feel too sick to have much fun and to be particularly entertaining.  We are just grateful that he wants to come visit at all, and we spend a lot of time and energy keeping him entertained so that he wants to keep returning.  And it is a pleasure to do so because he is a great kid.  But I do feel like I have to be "on the top of my game" while he is here; I make his favourite foods and go to batting cages with him, etc, and I don't know how much of all of that I will be able to do in the future.

Maybe I am just overthinking this, but while I am not yet on dialysis, I do understand that chronic illness and dialysis affects more people than just myself, and I am trying to minimize the impact; I'm trying to protect other people from my own distress, so I worry about how this will affect my stepson and his dad, that's all.   

Does anyone else out there have stepkids who come to visit every other weekend?  If so, how involved are they in your care?  How has your spouse/their parent dealt with this issue of you being ill/on dialysis?  Are the stepkids OK with it, or do they see it all as just one big bore?

[okarol]

Hi MooseMom,
I hope you find a way to fit your PD into the rest of your life.
Best wishes! 

[MooseMom]

I'll find a way...I just want to find the BEST way!  And I want to be mindful of those around me, that's all.

[paris]

In every step of kidney failure, my imagination is worse than the reality.  Just have your "normal" routine and he will accept it as normal. You may feel alot better after starting PD than you do now. Positive attitude---ask Goofynina! She is the most positive person around.  I now try not to worry too much ahead of time. I learn as much as possible, be prepared and then let it go.  I have 7 grandchildren--all very young. Slowly, I am introducing them to kidney disease. They know about green ribbons and bracelets and that Nana needs a new kidney to feel better. I am not sick--just need a kidney and they can understand that part.  At 14, he can understand the whole situation, and it really shouldn't interfere with his time at your home. Hope it all works out better than you imagine.  Also, I have FSGS and was at 15% for a year, now around 12%. Been on transplant list for 2 years and not on dialysis yet. So kind of in a similar situation. Know it is coming, getting prepared, but not worrying like I use to.  Good luck.

[okarol]

Most 14 year olds are so busy on myspace or video games or skateboarding - they probably wouldn't notice if you walked by naked with your hair on fire.

[MooseMom]

Most 14 year olds are so busy on myspace or video games or skateboarding - they probably wouldn't notice if you walked by naked with your hair on fire.

Hmm...that's true!!  LOL!

And Paris, thanks for that.  12%?  How are you "preparing" for dialysis?  Have you decided if you are going the hemo or PD route?  It does sound like you and I are occupying the same damned boat, so I'd be very very interested to hear how you are dealing.  I probably could learn a lot from you, thanks!

[paris]

My neph was so sure we could get a transplant before going on dialysis, but of course, nothing works the way we want it to.  So, mentally I have been switching gears and learning everything I can.  Everyone here has been such an incredible source of information.  I am going to every class on every type of dialysis and I have great nurses that what the best for me. At first, thought I wanted in-center hemo because I didn't want my home to become a second hospital.  But, I like to be in control, so seems like nocturnal PD would really be the best for me. Plus, I still want to go places and be more independent than in-center would allow.  Goofynina has been a big help and seeing her in Vegas enjoying life showed me that it gives a person a better sense of control. Rerun also talked to me about PD and how it worked for her---so the more I talk to everyone, the more confident I get.  Now, when the time comes, I will probably freak out again and need everyone to reassure me all over again!!   Glad you are here, MooseMom-- it is always easier to walk a hard road with others to lean on.  We are all here for you

[goofynina]

Paris, i was on hemo and believe me, i wouldnt wish that on my worse enemy (or maybe i would)    Having the supplies in my house is nothing and me being in control is everything, i hope you find what is best for you and remember, we are here for YOU too    Love ya friend