&*%$!!!!!!!!!!!!!!!!!!!!!!!!!!

[Sara]

I'll let you guess which 4-letter word that is! 

So, Joe calls this morning, he is told he needs to start doing 6 day/week dialysis!  His heart in enlarged, on both sides (whatever that means).  Are they going to set up an appointment for a pulmonologist (he missed the appt since he was in the hospital)?  "I don't know."  They would like him to do PD, but said because of our pets the risk of infection would be too high.  What about all the other people with pets who do PD?  "I don't know."  So, what about his fistula, he already has 2 bulging areas - are they going to start doing buttonhole, which I have been suggesting?   "I don't know."  Are you going to talk to HR at work about possibly going on disability?  "I don't know." 

Lovely.

 


HELP

[carson]

Sara, you know Joe has to come to grips with this on his own however here's some ammo for you:

I have 2 cats that sleep with me every night while I dialyse on my PD cycler. They don't bother with the thing at all, unless there's an airbubble or something to cause them to notice and maybe they'll try to chase it (of course I don't let them). I keep my catheter site covered so I don't get any cat hair or dander in it.
I have a dog that lives in the house like the rest of the family. My supplies are even kept in "his" room (he has to be segregated from the cats at night and when we're not home or he'll eat them - but they started it).
I have a horse who I look after every day, mucking his stall, throwing him hay, grooming off the loose hair and mud at this time of year. I make sure not to be wearing any horse clothes when I hook up to the cycler or do a manual exchange.
All those germs and yet no peritonitis.
I work like a maniac so I rarely have time for housework - the house is tidy but it could use a vacuum and dust a little more often. But with this many pets, there's always going to be pet hair anyway.
On PD he may feel so much better and enjoy the freedom that he may still want to work.
There's so much more I could say but you get the picture. I'm sure most of the others on PD will agree with what I'm saying.
Right now he's in a funk. He might have a little tunnel vision. He's probably scared of dying. Man, I wish he could meet me - he'd be begging for PD!!!
All the best, Lisa

[MyssAnne]

Animals have NOTHING to do with it. If he's gonna have dialysis 6 times a week he may as well have PD.
Sounds like you need another neph! Mine encouraged me to do PD, and got me on the cycller, because
he knew I worked 40 hours a week.   

[Sara]

THANK YOU!  He was thinking about PD when he first started dialysis, but with his job he has to do a fair amount of lifting, so we were concerned about a hernia with the PD.  But PD vs. 6 day hemo - it looks like with either he'll need to be on disability, or at least partial.  We're going to talk some more about this this evening and this weekend.  I am so worried about him, he's always so bloated because of his fluids, but I understand completely how hard it is not to drink when you're thirsty.  I just don't want him to die.   

[Sara]

Another question, those on PD overnight, do you have problems with restless legs?  Because right now Joe has major problems with his RLS and I can't imagine trying to stay hooked up to PD while tossing and turning and getting up and down all night...I would hope it gets better on PD.   

I agree with you about the pets.  We sleep with our pets currently, but I would not hesitate to just shut them out of the bedroom at night if it were a problem.  What do they expect Joe to do - go roll around in the litterbox with his access uncovered?   Jeez...

[carson]

I used to have a real problem with RLS but I found if I was overtired or if my hemoglobin was low it was worse. I haven't had it much at all in the last year or so.
I try to make sure I get my rest and take my epo and iron. Seems to work for me.
Good luck.

[Sluff]

THANK YOU!  He was thinking about PD when he first started dialysis, but with his job he has to do a fair amount of lifting, so we were concerned about a hernia with the PD.  But PD vs. 6 day hemo - it looks like with either he'll need to be on disability, or at least partial.  We're going to talk some more about this this evening and this weekend.  I am so worried about him, he's always so bloated because of his fluids, but I understand completely how hard it is.  I just don't want him to die.   

Hang in there Sara, has Joe had an enlarged heart for a long time? My right ventricle is enlarged but my left one is normal. Don't ask why because I couldn't figure that one out either. My father had a enlarged heart for 14 years. ( However he was not on dialysis so I know it's not the same but this is all I know about the subject.) wish I could be more help. Please tell Joe I am thinking and praying for him.

[Sara]

Hang in there Sara, has Joe had an enlarged heart for a long time? My right ventricle is enlarged but my left one is normal. Don't ask why because I couldn't figure that one out either. My father had a enlarged heart for 14 years. ( However he was not on dialysis so I know it's not the same but this is all I know about the subject.) wish I could be more help. Please tell Joe I am thinking and praying for him.

I'm not sure how long he's had it, I think this just developed recently, or at least they just found it recently.     My dad has an enlarged heart too, although he's had a ton of other health problems to go along with it.  I'm glad that you seem to be doing ok with it.  This is just so scary, and it's like I can see him getting worse every week. 

Thanks for your thoughts and prayers.   

[MyssAnne]

Sara, never had problems with RLS, but as another poster said, with epo, and medicine for it he should be okay with it. As for dialysis, if he's gonna do 6 days a week, he's better of with PD, which is LESS STRESSFUL on the body. Geez. Nurses. I have a good one, but there a lot of them out there on a power trip or just plain don't know. NOT good! 

[goofynina]

Hi Sara,  Get that man on PD girlfriend.  As far as pets go,  i lock my cat out of the room at all times, granted she has the rest of the house to roam in and i just dont open the door to my room for her to go in at all (she chews on my tubes)    I dialyze 7 days a week and i feel so much better, i just know he will benefit so much from the extra days of dialysis.  As far as lifting goes, he shouldn't be lifting heavy things even on hemo.  And also on PD, you are able to get up and walk around (especially with the extra 12' extension lines)    Good Luck and keep us posted  

[KICKSTART]

Another one here with pets ..large hairy dogs ,just as long as you dont do anything silly hygiene wise ..no problems at all.

[Ohio Buckeye]

I'm on PD and I have 2 cats.
Seems like it would at least be worth a try to see if he feels better.
My thoughts and prayers are with you both.

[Chicken Little]

I'm sorry.  I can't imagine doing hemo 6 days a week.     I'm on hemo temporarily while healing from torn peritoneum/hernia surgery and I felt SOOOOO much better on PD.  I cannot wait to go back to it in 13 days.

We have a long haired dog that sleeps with us.  He leaves the room when I connect, but other than that he has free reign.  I was told to get a Hepa filter for the room, which I'm getting next week.  I actually do like having a reason to keep the house cleaner though.  It was easy to let that vacuuming slide a day or two before.   

[Sluff]

Sara please keep us updated.

[Sara]

PD folks, are there any restrictions on bathing, swimming, etc for you?

[Chicken Little]

PD folks, are there any restrictions on bathing, swimming, etc for you?

I was told to take showers, instead of baths.  I can swim in pools and in the ocean, but no hot tubs/jacuzzis and no fresh water (lake, river, pond) swimming.  I can live with it.   

[goofynina]

I was told to swim only in Private pools  , and same as Chicken Little, NO lakes, rivers, ponds, canals.   

[MyssAnne]

Yup, same restrictions as noted above! I was told to check w/nurse about oceans, those might be possibilities!
I sure do miss my baths though.

[Sara]

I wonder if swimming in a spring would be ok?  The one we go to occassionally is huge and crystal clear, so it's not like a scummy lake or something.    

[goofynina]

I wonder if swimming in a spring would be ok?  The one we go to occassionally is huge and crystal clear, so it's not like a scummy lake or something.    

I would definetly ask about the spring girlfriend, just to make sure.  Even if they say no, hell, it is so worth him getting on PD and getting him feeling better again.  Did they give you a time to think about it?  is there anything else you really want to know?  i would try and schedule him A.S.A.P. cuz it will take about 6 - 8 weeks before they can even use his catheter.   Feel free to ask anything girlfriend, we are here for you and Joe. 

[angela515]

Yup, same restrictions as noted above! I was told to check w/nurse about oceans, those might be possibilities!
I sure do miss my baths though.

People who can't have baths, miss baths, people who cant shower, miss showers.... lol