And the hammer comes down

[Scarlet]

Well looks like my worst fears are coming true..... Did my KT/V last month and it came back bad....not sure what the numbers mean, but was told it should be no lower then 1.7% and mine came back at 1.12%.  So I had to ask what this means and was told that my pd filtration rate is to slow to be fully affective.  The doctors think that this is another complication caused by the radiation treatment I had at age 30 when I had colon cancer.

So I was told that because I still have ~10% kidney function left that I can stay on pd for a little while if I want but that I have to look at changing to hemo sooner then later.  I am currently 44years old and we had been under the belief that I would have 5 or 6 years of pd time before I had to worry about hemo.  My mom started hemo when she was 53 and only lasted till 63, she was so sick all the time.  I have not exactly been issue free on pd and have to admit that I am petrified of going on hemo......it is so hard for me not to see this as a last step before the end.....

My husband is more then supportive and is already thinking of changes that we need to make to our house so that I can do home hemo.  Big issue for me is the fact that he has been sleeping in the spare bedroom for the last 8 months because he can't sleep through the machine noise,  even with ear plugs.....if I start no,e hemo I fear that we will never share a bed again.  Not sure I can face that....    .  Any advise??

[AnnieB]

I'm still pre-D, but with all the reading up I have been doing, it sounds like home hemo (nocturnal) is actually the best way to go. I realize everyone is different, but this may actually turn out better than you think. Anyway, I will be keeping you in my prayers that everything works out.

 

Anne

[Scarlet]

I might not be as freaked out if I didn't have a deadly phobia to needles, oh ya and the only good vein I have is UNDER my right arm; they need to open my arm up and move the vein from the underside to the top in order to put in an accessible fistula......oh one other thing I forgot to mention, I have a hernia that I am waiting for surgery to fix.

Wanted to get down to the Caribean, dad lives in Grenada, one last time before I hit hemo, as I could do twin bag there, but no hemo available.....only to have my dad say that they are not  comfortable with the idea of my visit.  Just kind of feeling left out in the cold..... It is so hard not comparing my mom's issues and out come to my issues and therefore possible future.   Just really tired of getting the sh*#€ end of the stick all the time.

[jbeany]

Please, please, don't assume that your mother's experience with dialysis is automatically going to be yours.  Everyone has a different experience, and many people do very well on dialysis. 

Home hemo does not have to be done at night.  If you are able to do nxstage, you can do it any time you want to.  I liked to hook up right after dinner, and run while the evening news and tv shows were on.  I would have likely been sitting down and relaxing at that point in the day anyhow, so it didn't feel like an intrusion into my schedule.  I was off and headed for bed at a normal time, and didn't have to sleep with a machine beeping next to me.

I'd suggest working on the needle phobia right now.  I went from passing out if I saw them to sticking my own needles for home dialysis.  Getting through it is possible, I promise.

 

[boswife]

Good words Jbeany .. and i second them.  It's possibly the beginning of feeling better instead of the end of something.  It really is so very 'do-able' and once you get your routien down, it's quite the nonchalant thing to have to do.  Now, i realize i am the 'caregivingpartner' but I am as involved  in the 'doing' of it as he is. And,,,,,,, your hubby can be as involved as you wish him to be..  If he's needed, it sounds like hes ready to do that, or if you only need him for certain parts, well thats what ya do. Its realy indifidual. And NxStage travels really well.... much different than your mothers Dialysis im pretty sure.  I wish you well, and theres lots of us home D w/ nxstage and others, that are here to help ya out.  Also, you might want to join up with another group that is called (homdialysors united...Yikes, im not positive of that name as we have reciently changed from NxStageUsers)  I'll re post with correct name.  Anyway...... Soooooooooooooooo much good stuff there as well and many members from here vrequent there as well..  Great bunch of people with lots of experience to share.  Your not alone 

[noahvale]

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[justjen321]

Morning Scarlet,

I'm sorry you are having anxiety. Seems there's plenty of that to go around with kidney patients, and it sucks.

I'm not a patient, I'm a caregiver, but because you are switching from PD to Hemo, I thought I'd pipe in.

I am responsible for all of my husbands care, and we switched from PD to Hemo this spring. Then, in July, we switched from Short Daily to Nocturnal.

As stated above, you don't HAVE to do Nocturnal. You can do Short Daily, and you can find fairly easy ways to work it into your life.

As for this being the end of the end, I hope you don't dwell on that too long. My husbands health improved with Hemo over PD. And good gravy, when we switched to Nocturnal, his Kt/v DOUBLED. He was at 2.4 the last time we did bloods, which was after two weeks of Nocturnal. (Plus, your Kt/v target will be higher when on Hemo at 2)

Nocturnal works well for us. We sleep in the living room the nights we do Nocturnal (every other night) and in our bedroom on the off nights, because that's what works best for us at this time. Hubby feels 'safer' in a recliner for now, so that's what we do. We may or may not move the machine to the bedroom, and either way, I'm okay with it. Nocturnal has given us back ALL our days, which I love.

Good luck as you navigate the change, and I second Noah Vale. Get a really good vascular surgeon, as they can make this process easier with a rocking good fistula.

I can't speak to the needle fears, because I do my husbands (although he has buttonholes and we use blunts) and I've never had any issue with needles or blood so it wasn't something I had to work through.

Jen

[Home hemo]

Big issue for me is the fact that he has been sleeping in the spare bedroom for the last 8 months because he can't sleep through the machine noise,  even with ear plugs.....if I start no,e hemo I fear that we will never share a bed again.  Not sure I can face that....    .  Any advise??

My husband did home hemo with a regular dialysis machine, the same kind you see in centers, so it's only a 3-4 hour run.  You could do it all night, but you don't have to do home hemo overnight.  The nurse in charge of our program spent a lot of time helping us decide where to put the machine, because his experience was that often patients didn't like being off in a bedroom, they preferred to do it out in the living room while watching TV or visiting or eating meals or whatever.  We did end up using a spare bedroom because my husband wanted to be able to shut the door (we babysit grandson and have a teen at home), and it worked well for us.  But it definitely doesn't have to be done while you sleep.  My husband did a lot of the set-up, but I did most of the take-down so we usually tried to either use early mornings or later evenings.

[chiawana]

Scarlet,

Like JustJen, I'm my husband's care partner. We do home hemo with NxStage, 5 days a week. I work full time so we do it when I get home from work, 2 and 1/2 to 3 hours. Since we started using bigger gauge blunt needles, our nurse has us running at a faster speed so the treatment takes about half an hour less than it was taking. A few times we've dialyzed earlier in the day because we want to go do something in the evenings. The needles were a non-issue for him; he's been an insulin-dependent diabetic for almost 30 years. It was a big deal to ME, though, since I'm the one who cannulates him. We've been doing the home hemo at home for about 2 months now and still getting the hang of finding where his buttonhole access is every time. We love the flexibility of it; sometimes we skip different days for various reasons and make it up on other days. And we sleep in the same bed every night 

[Scarlet]

I want to thank all of you for your words of comfort and words of positivity, I needed them!  I guess all I know is what my family experienced with hemo and that was over 5 years ago.....it is REALLY good to hear that the change for pd to hemo is something that can be adjusted to...  Not really like I have a lot of other options at this point, but some days I am just get tired thinking that I got ALL crappy jeans in the family.  I am not the checking out kind of person, and it is a bit of a family joke that if I was to stand I front of a bus, I would only end up with something else broken that I would have to live and deal with!!   Sorry we have a bit of a dark sense of humor in my family....it is all that gets me through some days.   Thanks folks