PD: The beginning of the end

[kickingandscreaming]

Looks like I'm staring death in the eye. Just learned that my "clearance' came in at 1.3 with now no residual function.  It means that I have only one chance to avert the need to switch to HD and that is by increasing my fill volume.  AND increasing to 8 exchanges/day including 7 on the cycler.  So effectively, my life will be taken over totally by D-- assuming even that this does the trick and raises my clearance. Enough.

I really, really don't want to spend the rest of my weary life on an HD machine with holes punctured into my arm,sitting in a chair.  Already, even before this shift (if it works) my life feels taken over by PD.  It's getting harder and harder to find justification for staying alive.  I'm not productive anymore as it is.  My dog is the only thing that keeps me going.  And she's 15+.  When she's gone, I can't imagine what would make my life feel meaningful.  I will not take on another dog--even tho i feel as is I can't  live without one in my life.  I just don't have the energy to properly exercise a dog and I'm too old to make a long-term commitment to another animal.  So this feels like the beginning of the end.

[MooseMom]

K&S, did you ever find out if you have congestive heart failure or not?  I've gone back through your most recent posts, and I can't find anything.  I know you were going to be tested; did you get any answers?

I'm asking because I wonder if HD via a catheter may work for you.  Our member Kristina has one because she is an artist and a pianist and was concerned a fistula creation might affect the use of her hands.  She has used it successfully for quite some time now, and she is doing well.  It must be said, though, that she is absolutely meticulous in keeping that area clean.  She understands the risks.

I know that here in the US, it's "Fistula First",  but perhaps for you, a catheter may be a viable alternative?

   I'm so sad to hear that you are feeling so hopeless.  I can understand why you feel this way.

[Rerun]

Yes, if you are feeling you just cannot do needles start with a chest catheter.  See how you feel and go from there.  Nocturnal ( hours 3 nights a week is good because at least you get your sleep and your days are free. 

Maybe you can rescue an older dop later to help improve a furbaby life.

But... I do know how you feel. 

[kickingandscreaming]

K&S, did you ever find out if you have congestive heart failure or not?  I've gone back through your most recent posts, and I can't find anything.  I know you were going to be tested; did you get any answers?

MM-  I still don't know much.  I saw a cardiologist who mostly pointed to A fib.  I did an Echo yesterday and will hook up to a monitor next month.  So the data is still coming in.

When I began D back in 2015, I started with a catheter.  It was a PITA because it was very hard to bathe.  I abasolutely can't imagine being punctured many times/week.  it is just so barbaric.

My clinic doesn't offer nocturnal.  So I'd have to change a lot of things to do that.

 I don't think I have congestive heart failure.  When I walk, my limititations aren't in my breathing, but in my very stiff hip joints that are just plan out of shape.

If I ever did adopt another dog it would be a senior.  But I still can't guarantee a rescued dog a life of stability.  And that's very important to me.  I love dogs and would not want to contribute to their harm in any way.

[PrimeTimer]

Sorry you are going thru so much right now, K&S. I maybe shouldn't say this because we have people on here doing home-hemo and I applaud them. As you know, my husband and I did that for 3 years until my Fibromyalgia got so bad I just couldn't do it anymore and he can't do it himself. So...back to doing in-center he went. But you know what? He's actually less stressed because it takes the stress off of me and we are both happy about having more time to do other things again. He goes 3 times a week in the early morning hours (6am-10am) and then works a full-time job. When we were doing home-hemo, it took up a lot of our time but we were grateful for the option, he felt good and his labs were great. But he eats right and stays active and his labs still are looking good but we have more time now. He says his time is priceless. Please think it over...

[iolaire]

@PrimeTimer thanks for your experience.  I was thinking along the same lines and was wondering if @kickingandscreaming might actually find dialysis is less of a commitment and time drain going from 7 PD transfers per day to the 4-6 hours (including commute) every other day for in center.

[kickingandscreaming]

going from 7 PD transfers per day to the 4-6 hours (including commute) every other day for in center.

I would agree with you except that 6 of the exchanges take place while I'm asleep and the 7th is just before hooking up to the clycler for the remaining 6 exchanges.  I'm not saying they don't eat into my consciousness.  They do.  But  most are not competing with regular time and activities.

I just find the whole culture of the in-center hemo depressing and draining.

[Charlie B53]

Don't give the ship just yet.

Pd works by the DIFFERENCE in the sugar levels between your blood sugar and the dialysate sugar.  SHORTENING the dwell time, INCREASING exchanges, using MORE or bigger bags to equal a total more volume.

This will work as you will be spending more time with a higher sugar level, pulling more fluid and toxins, increasing your ''adequacy'.

You need to have this talk with your Neph, then the Nurse can help you make the adjustment to the Cycler program.You do NOT need to change your fill volume.

This worked for me up until I got that infection and ended up losing my PD cath.  Which as it turns out, isn't really a bad thing.  With the Perma Cath and an early morning seat assignment I get up, get in, get done, and I''m FREE.  NO CYCLER to tie me down every evening.    I can stay outside unti long after dark again.  Whoo Hoooo!

So really, it is all in how you look at it.  If you are an 'Early Riser' like I am, Hemo can work well.

Granted, I do have that needle paranoia.  But I'm thinking seriously about that.  I can get a shot O.K.  Even blood draws with those itty bitty butterfly needles are alright.  My problem is getting an IV put in.  My veins seem to sense that needle coming, shrink up and roll away.  But an access, well developed, Big, and FAT................  This should make a whole lot of difference.   I just need to have a little talk with the surgeon about whether he is planning on using MY vein, OR a synthetic HOSE.   If MY vein will swell up nice and fat, then maybe that should be O.K.  A synthetic hose shouldn't know any difference.

So looking at Hemo from a slightly different angle, MAYBE not necessarily a bad thing.

We never really know in advance what we are capable of doing.  It is only when it happens, that we rise to the challenges that face it, and over come those obstacles.  Looking back afterwards we can truthfully say, It wasn't near as bad as I thought it would be.

So I say again, Don't give up the ship just yet.  Tomorrow WILL be a new day.  Rise up, get out, and enjoy it!

Take Care,

Charlie B53

[smartcookie]

Try to take one day at a time.  Today's worries are enough, so thinking about in center hemo before finding out if you can get adequate clearance with PD is a huge burden.  Just work on the adequacy for now.  I am thinking of you and praying for you!! You got this!

[Michael Murphy]

I do I center hemo commute, treatment, holding, all take about 6 hours. That's a total of 18 hours a week, that leaves 150 hours each week to have a life.  I chose in center instead of pd because I have a house in the Adirondacks by a lake. Nice lake, one of the true joys in my life on a hot summer day is to jump in the lake to cool off.  PD would mean no more lake.  My method of dealing with in center is I generally stay up very late the night before and go to the first shift in center, generally. You get on and off at a regular time.  If you are on an other shift your starting time depends on every one before you being on time.  Now since I arrive tired after being put on the machine I put on my headset and turn on the music.  I then go to sleep, usually I get between 2 to 4 hours sleep.  So the experience seems to me to be about 1.5 to 2.5 hours long ( I have a 4.5 hour time on system).  My advise if you have to go to hemo try it for 6 months before making any decision.  Last October I had a major heart attack after angioplasty I could not walk the 8 feet from my bed to the toilet.  This was very depressing.  I did not think I could live that way, then it hit me if I stop dialysis I didn't have to live that way.  Thinking about it in my bed I realized I could wait and see if it would get any better and if it didn't I could still pull the plug.  It got better not perfect but better.  I would say don't decide on ending treatment to avoid hemo until you try it.  The choice between the various modalities is complex and everyone has a reason to think the modality they chose is the best.  But don't stop until you find out for yourself what's involved.  Good luck, I hope you find a way to stay on PD but if you can't I hope you try hemo for at least a few months to find out if it really is as bad as you think.

[kickingandscreaming]

I guess I didn't state clearly in my OP, but I HAVE tried in-center hemo.  It was the first modality i did before being trained in PD.  So I know what it's like.  I did it for about 4 months and hated every minute of it.  Being on my own with PD was a great relief --until it started not working  well.

[cassandra]

I'm sorry to hear about this change for the worse, but agree with smartcookie, concentrate on the now. Thinking of you, and sending positivevibes

     

Love and strength, Cas

[Michael Murphy]

One other thing the quality of your experience at hemo depends greatly on the quality of the center you go to.  If it's hemo don't quit see if anyone knows of a better center.  Recently the center I go to closed down for 2 month for a rebuild.  I was sent to a center owned by the same company 2 miles away.  I was willing to put up with it for 2 months but the experience was not good.  I am a 4.5 hour patient, they had me start at 7 pm then 3 hours later at 10 pm they began taking people off. It seems they had to turn off their water system to get it read for the next morning.  They were so disorganized they didn't realize you can't put a 4.5 hour patient in a 3 hour slot.  One of the people I go to dialysis with is a training nurse, she switched centers because she claims someone tried to kill her.
If you hate the center you go to look around there are diamonds out there.

[kickingandscreaming]

I don't hate the center.  It's actually a good clinic from what I gather from others.  The nurses and techs were mostly very nice and seemed competent. 

What I hate is hemo.  I hate the idea of needles.  I hate sitting for hours on end in a an uncomfortable chair.  I hate the noise of alarms going off constantly.  I hate the bright glare of fluorescent lights.  I hate the depressive vibe of patients all lined up in their chairs surrendering passively to the process.  I found the whole experience to be demoralizing.

I like being independent.  I like setting my own hours,.  Being able to move around at  will.  None of those things are possible in in center hemo..  I know everyone's different and some people are better at accepting shi*tty situations better than I am.

[Michael Murphy]

Buy a jell cushion, wear head phones and listen to music, ask to have the light over you turned off,  find some thing to do, try first shift and nap for half of the session,.  I spend my time on my iPad playing games reading or watching movies.  No one likes to be stuck in the chair the secret is to find ways to make the time more palatable.  Dead is forever,  find a way to make your time productive or fun.   It's your life and every dialysis patient has a choice so do you adapt or die.  I wish you well and good luck.

[Charlie B53]

I often borrow words from songs, so, I wear my Sun Glasses at Night. Inside.  They really help with the bright lights.

I've learned from the others here. I take a big plastic bag that has my pillow and a soft little blanky.  The pillow goes at the small of my back as most chairs are not at all comfortable with my damaged back.  The cozy blanky keeps my legs and lap nice and warm.

I've 'borrowed' a sort of carpet bag from my Wife, I load it with my padded lap board, laptop computer, remote mouse, headphones, reading glasses, insulated glass for ice, snacks, books.  It ends up getting heavy. Before I sit in my chair I grab one of their pillows, put a cover on it, set my lapboard, computer and blankie on top, then start unloading all the rest of my qwap on to the side table.  I get everything I need to keep me occupied for the whole session all at my fingertips.

One of the Techs tries to poke fun at me for 'moving in'.  I just laugh.

As independent as you are I am surprised you haven't asked more questions about doing home Hemo.  While I do have that terrible aversion to needles, I have the seed of an idea that once my coming access is adequately matured that it is sizeable enough to very easily 'needle',  that I just might learn to do this, needle myself.   If I can get to that point, then I very well may be able to do Home Hemo.  The idea of shorter, daily sessions, and possibly reducing the fluid and food restrictions....................   WOW!!      So I can't say that this ISN'T possible.  I will simply have to wait and see.

So you have done in-clinic using a perma cath.  Can you find anything that was GOOD about it?

Can we talk more about what you didn't like?  Can  you think of any way to change some things so to make it any less unbearable?

Sometimes when we look behind things and figure out what can be changed, we can totally change our perception if the event.  For a 'Do or Die' procedure that can make a HUGE difference.

We are still a long long way away from Hemo yet.  Your Cycle program can be seriously tweeked yet.  Let's not jump too far ahead just as yet.   Have you made an appt to talk with your Nep and Nurse about increasing volume and exchanges by reducing dwell time?

[Rerun]

I understand Thelma .... drive up here and get me. 

Louise 

[kickingandscreaming]

I am not eligible for home hemo as I live alone and have no care partner. I also seriously doubt that I could self-canulate.  But that's neither here nor there as I'm not eligible. If PD fails, I have 2 choices: in-center hemo  or hospice.  Strongly doubt I'd be eligiible for TX so not even listed.  Too many co-morbidities and too old.

Louise- I'm coming.

Thelma

[Simon Dog]

I like being independent.  I like setting my own hours,.  Being able to move around at  will.  None of those things are possible in in center hemo..  I know everyone's different and some people are better at accepting shi*tty situations better than I am.

You have done an excellent job of explaining why my first words to my current neph (who I was seeing pre-D) were "I need to know if you will get me home treatment, because if the answer is no we will be  wasting your time and mine".

I am not eligible for home hemo as I live alone and have no care partner.

The Fresenius people should read a few papers on "the dignity of risk" - a well discussed topic in the medical world.

I am certain that I could do it alone because I do.   My wife is in the house, but it's all me start to finish, with no help involved.   I believe the Northwest Kidney Center (Seattle area) allows solo home  hemo, as do some NY clinics (since state law requires remote monitoring for home hemo patients).

If anything happens to my wife, I'd probably list my dog as my care partner 

[Charlie B53]

One of the Head Nurses at my clinic and I had this very talk yesterday, about doing Home Hemo.  When I told her how my Wife only went to PD Training as a formality for me to get started, that I know my Wife would never be able to assist me in doing Home Hemo, Nurse told me how with many patients the requirement of having a Care Partner is merely a formality, that after training once at home it is very often only the Patient actually doing the Dialysis as the other person is merely an observer doing nothing.

She went on to explain the requirement is there to prevent the patient from bleeding out from a leak of they fall asleep, leak, and fail to wake up.  She tells me there is a 'pad' somewhat like the pad they use to prevent any spillsl making a mess during connections, sticks, etc., that this 'smart pad' has a sensor that tells the machine if/when it gets any liquid on it wetting the pad, setting off a very loud alarm which would waken any sleeping patient.

With these 'smart pads' they may soon be able to do away with the 'Care Partner' requirement and more patients may be able to do Home Hemo alone.

It disturbs me to see anyone just give up.  There must be a way for the determined to succeed.  We only have to look much deeper and figure out how that can be done.

[Simon Dog]

The product commonly used for detection of blood leaks is the "redsense" (www.redsensemedical.com) blood leak detector.     When I tried nocturnal (failed due to dialysis induced insomnia) I had some problems with false alarms.   The president of the company is a very nice guy (I've had numerous conversations with him and have a NDA with Redsense which allowed him to speak freely).     Fresenius is issuing these for nocturnal patients.

[LorinnPKD]

Hey K&S, just wanted to send some love and support.  I always enjoy reading your contributions here and I love your perspective, humor, devotion to your dog (like me!), and intelligence.

When I was diagnosed, I decided not to do HD for the very reasons you said.  I'd watched my dad go through it, and while he faced it with a lot of good humor and patience, I never thought I could do it the same way. I didn't want them to cut my arm to make a fistula.  I didn't want to sit for hours with needles.  I didn't want any of it.  (And with PKD, PD wasn't really an option.  Also I love baths. )

But then I got really sick (this was me at age 40 and I could barely think or walk!), and I opted to stick around and try HD.  I live alone and I have a little dog who loves me and needs me, and I'd made a commitment to taking care of her.  And HD is... well, it's OK.  I felt so much better than I had before that it changed everything for me and changed my outlook.  It's been almost a year now.

Some things that help me the most:

- I asked for the shift that has mostly patients who are still working, which is third shift at my center.  These patients are more active/stable and have the energy to be more friendly, and so they may have more in common with you, because you sound like a bit of a firecracker.

- I bring an almost hilariously enormous bag of pillows and blankets and build a nest in my dialysis chair, which makes it super comfortable.  Seriously, it's a pillow to sit on, a pillow for my back, a small pillow to rest my hand on, a small folded blanket to rest my arm on, and a blanket to cover me!  Other patients have said they look at me with envy.  It's a bit much, but it makes the chair bearable and almost nice!

- I enter through the side door, which lets me avoid the clog of medical transports at the main entrance, and it feels more like a regular doctor's appointment.

- I bring snacks and a small drink from home.  Snacking helps bide the time.  I also keep a small bag with lip balm, moisturizer, hard candy.  Like what you'd bring on a long car trip.

- I also bring my own entertainment (iPad) and connect to their wifi.  No one else seems to do this but it's ideal.  They have TVs there, but I felt like a zombie just sitting and watching TV, so bringing my own feels more like sitting on an airplane or being at home than being plugged in getting treatment.

- The needles are OK.  They don't hurt, and I just look away when they are going in or out.  When it's all taped up, I just depend on a well-honed cognitive dissonance.

Above all, the thing I like most about HD is that it lets me partition my illness.  When I am at the clinic, I am sick.  When I am home, I am healthy.  So it makes me feel like I'm almost normal when I'm at home.  And that's really valuable to me dealing with a long-term illness.

Anyway, I hope you try it again and have better luck.  Taking a shift with more active people did wonders for my morale and made it a lot less scary.

Sending you hugs and hope.

[kickingandscreaming]

Thank you, LorinnPKD.

[Rerun]

Come on!  Who would I fight with on the Political Section!

http://ihatedialysis.com/forum/index.php?topic=33894.0

 

[iolaire]

Above all, the thing I like most about HD is that it lets me partition my illness.  When I am at the clinic, I am sick.  When I am home, I am healthy.  So it makes me feel like I'm almost normal when I'm at home.  And that's really valuable to me dealing with a long-term illness.

That's a good description/way of thinking.  I think you are spot on with the rest of your comments.