PD Vs Hemo?

[Charlie B53]

I started PD the end of May '13.  All went well.  For me, it was a 'No Brainer' being as needle-phobic as I am, PD ain't no thing.  I learned that I liked using the Cycler far better than doing manuals as being a still somewhat active Guy I found it a serious P.I.T.A. to stop whatever project I may have been working on out in the yard or Barn, wash my hands and arms as they were often greasy soiled.  Head into the house and do an exchange.  One of the few good things about doing those exchanges was I set up in front of my desktop computer so it was real easy to spend the time.  So easy I often forgot when to start my fill, finding myself sitting there reading an hour before starting that fill. So I would end up spending a LOT of time reading, web=surfing.  That's how I found this place and soon decided to join.  Finally done with my fill I  found it sometimes difficult to get back to where I was before my exchange alarm went off and finish that project/chore.

Alas, an infection put an end to PD. Infections don't just 'happen'.  As with everything else on this planet there is a 'cause' which leads to the 'effect'.  I am very sure that my 'cause' was a momentary lapse on concentration during my Cycler set-up.  You would think that after almost 18 months using my Cycler that I would have the set-up down to an Art.  I thought I did, that may be why I made my error.  Too complacent, not taking the care to pay closer attention, to take the few seconds and not attempt to speed through the steps to get it done.  I MUST HAVE touched an open fitting to my finger while connecting the hoses to the bags which allowed the contamination which lead to my infection.  Hand sanitizer alone is NOT a perfect solution to ensure safety.   Proper procedure, the handling of the oprn fittings so as to ensure the never contact anything other than the proper connector is mandatory.  I failed, once.

I had to have a Perma-Cath inserted going up, over, and down my right clavicle, it itches and drives me NUTS, but I force myself not to scratch.  That ain't easy.  Using this makes Hemo easy as there are NO Needles, yet.  The problem with the Perma-Cath is the machine does not like it much at all, alarming when I so much as take a deep breath, cough, talk, move my head.  The Tech has to be very frustrated with me as she is constantly having to come over and reset my machine, very often lowering the pump speed to reduce the number of alarms.  I'd laugh about it but I don't think the Tech would appreciate my bent sense of humor as I very rarely see her smile when resetting my machine.

There are a few very major differences between PD and Hemo.  For me, on PD I had NO Fluid restrictions, same with food.  I could eat and drink what ever and however much I pleased, my Cycler would slowly pull off the excess fluids during the night and I had no swelling and no weight gain other than fat.  I eat far less than before PD as the constant pressure of the fills kept a curb on my appetite, set a limit on the quantity of food I could eat, making me feel 'fuller' much quicker.  I actually lost at least 70 lbs abooe and beyond the 40 plus pounds of water I had swelling my legs when I started.  About THE only thing I didn't really like about PD was the long time it takes.  Having to connect so early in the evening I lost that time not being able to be outside when the days are longer, spending time in the evening in the living room with the Wife, or when Son and Grandson come over.  Having all this time free while on Hemo has caused me to re-think an awful lot about the types of Dialysis and how both effect me.

My first few months on Hemo I thought I could easily die.  I was cramping during the nights after treatments, I was soo exhausted after treatments I would come home, eat a half a sandwich and go straight to bed, sleeping anywhere from 5 to 8 hours, and still wake up totally exhausted.  Cramping during treatments I finally realized they were attempting to set my 'Dry Weight' way too low.  My blood pressures didn't start dropping until they got me near down to 103 K.  We had long talks about just how low my weight should be, the Nurse agreed to start making raises.  We were up to 105 finally with no leg cramps during my nights, but I still had far too much exhaustion so we kept raising .5 K at a time.  106, finally, I don't even have to take a nap after treatments. I can stay up and half active the rest of the day and well into the evening.

I no longer have that intense desire to get back to PD.  I actually LIKE having a life again.  The fluid restrictions and dietary restrictions I am learning to live with.  It's tough, but do-able.  I've had the vein mapping done, now only waiting for a surgery date.  Dr is planning on knocking me totally out and go in my left upper arm.  He can do anything he wants while I am out.  My continuing problem is facing those needles.  It's a three-ring circus getting that IV in prior to surgery.  I freeze and lay there not even flinching while the Nurse/Tech attempt to stick a vein.  My veins however don't want any part of this, shrinking up so small and hard they most often roll away and multiple sticks, bu multiple Techs//?Nurse are required before a successful line goes in.  Many times when I've had to stay in the hospital for more than a couple of days, my IV would 'Fail', unable to clear with the saline 'push' requiring that line to be pulled and the whole fiasco to be repeated.  By the time I get home the inside of both arms are purple.

Wanting to keep having all of this 'free' time I have pretty much decided to stay with Hemo.  I am going to have access created.  I just don't know how I am going to handle those needles.  I wrote a message to my Primary Car Dr telling her what I am doing, asking her what med, IS there a med that can help me with the anxiety I will be having every M-W-F.  Her Nurse called me and tells me they will be sending to Psych.

WTF will Psych do that I don't already know?

Sens me to Neuro instead.  I'll ask him if he can place a couple of wires in my brain, touch the ends to a battery and knock my butt smooth out, asleep until well after the needles are placed.

I have a lot to learn yet.  The learning part is the easy part.  Behavior modification is a whole different thing.  I wonder what I am going to learn from the Psych Dr.?

[Michael Murphy]

Hang in there, you know those lumps every hemo patient seems to developed on the fistula they seem to do more than look ugly.  Even when a fistula is declared ready to go it's still small and constricted, move your arm too much and you have infiltrated your self.  It is difficult to stick because go in at the wrong angle, and you are infiltrated.  About a year ago I mentioned to a tech that I was always nervous about being stuck because I hate to be infiltrated, she laughed and said, "I could stick this fistula from across the room", it makes sense cause of the  aneurysms the target area is much wider.  Finally as you are stuck more often in the same places it makes it less painful. The other thing I don't do is watch ithe needles go in, going in they look like the Lincoln tunnel, coming out they look a lot smaller. Fixed spelling error

[kickingandscreaming]

Funny, I have just the opposite reaction from you, Charlie.  I've done both Hemo (A-V catheter) and PD, and I feel that I have MUCH more time for living on PD.  I start my cycler at 8pm and finish by 7:30am.  It's happening while I'd be sleeping anyway.  Then I'm free to be me.  When I did Hemo, I had to travel 30 minutes to the clinic and then again to go home.  And had to sit for what seemed an endless period of time in an uncomfortable chair in a overly bright, glarey, noisy (with alarms) space with a lot of people I never spoke to who looked like they had given up and were resigned to the chair.  With NEEDLES added to the mix, then it's a no brainer.

[cassandra]

Dear Charlie, I felt the same as you about the needles, and the same as KaS about everything else concerning Hemo. I would have loved to stay on PD but no choice.
Like Michael says the pain does get less, but I wouldn't want to do it anymore without Emla cream or Xylocain Spray.
The needling of IV's or bloods are nothing like needling a fistula. So just try (the first few weeks don't count as your fistula is still developing.
It's not too bad. You've been through worse I'm sure.

Love, luck and strength, Cas

[Charlie B53]

Pain I can deal with.  I live with chronic pain.  The FEAR of letting someone else stick me is the mental anguish I have to deal with.  I know it is one of those 'Necessary Evil' things we all have at some point in our lives.  But to submit THREE TIMES a week, TWO needles each time.  I may be taking those 'naps' again long before the needle touches my skin.

I doubt any Psychologist can mamke any difference, unless she prescribes something strong enough.   I have tried most all classes of 'meds', clean since Sept 81, I don't remember taking anything that would help with this fear.

[PrimeTimer]

I am not on dialysis nor do I have kidney disease, so I apologize for speaking on something I have not experienced myself. I don't pretend to know about something I don't. My husband is the one on dialysis. I have stuck him with those giant awful needles and have watched him stick himself. But I don't honestly really know how it feels and from the looks of it, glad I don't. But I do know about anxiety and pain. A psychiatrist taught me how to use a "code word" to repeat silently to myself whenever I felt an anxiety attack coming on. I use to have to leave the grocery store in the middle of shopping because I felt the walls were caving in around me. I've had attacks that you wouldn't believe and at the absolute worst time. They are pure misery. I'll spare you any more details. Back to using a "code word" or what you might call a "comfort word". I found repeating this word silently to myself forced my brain to refocus. Just took a few seconds to do and the doc said all we need is a few seconds to get our brains to switch gears to calm down a notch and well, it works for me. As for pain, I learned to "breath" thru it. Doesn't take away the pain but using a breathing rhythm helps. Whether nice deep breaths or short breaths where I am blowing air out of my mouth making rapid little puffing sounds, any sort of "rhythm" helps. Don't laugh but maybe you should read up on how women breath thru labor when they have a baby. That must have been how I learned about that because I was once a birthing coach for a pregnant friend. I had to attend Lamaze classes with her and we had to learn how she needed to breath while in labor. Never forgot it. Good luck, Charlie. We'll all be here when you need us.   

[Michael Murphy]

Charlie at the centeri go to the people with newer fistula, are treated by the senior nurses.  Your center will know quickly if you are a difficult stick.  If you are ask who ever does it we'll show others how to do it.  If you can take the pain of the stick my advise is always the same Don't Look. It's ok to watch them coming out but don't look at them going in.

[Tío Riñon]

My father and I are living examples of this debate over modality.  I prefer PD and he opts for HD.  We each have our reasons that we have elected our modality and can cite reasons and examples.  In the end Charlie, you need to decide what provides you the quality of life that you want.  It sounds like you prefer HD, but don't want to deal with the needle situation.  If that is the case, you must do what you can to live with dialysis since this is a lifestyle decision that will impact you for years.  My father, who doesn't like needles but will tolerate them, decided when he started that he didn't want his arm to be look like others who have a fistula or graft.  He dreads the physical "deformity" and instead has a neck catheter which has been in place for at least 5 years.  Despite the recommendation of nephrologists that this is option is not the safest and has a great chance of infection, he has refused to budge.  It has been replaced once, but he has never had an issue with it.

You need to explore your options Charlie and select what you feel comfortable doing.  It is your body and you ultimately have to undergo the procedure every week for 3 days.  If needles are a problem, this is a potential solution.  Decide what you can tolerate and go with it!

[Charlie B53]

I manage to 'stick' myself with my insulin injections, those little 30's are very slim and short i seldom even feel them.

Ever since they came out with those little 'butterfly' needles for blood draws I haven't had any problem with them. Ag.ain, they are thin enough most times I barely feel it, if at all, unless they happen to stick a nerve.  It's an awakening, but I still manage to keep it together.

IV's are a whole different thing.It isn't so much the pain, it's the thought of violating the body.  This isn't 'Natural'.   Long ago Dr's used to order me a butt-load of Demerol, injected in the buttock 20 or 30 minutes prior to attempt the IV.  Worked perfectly every time.  I don't doubt DEA Regs caused them to quit doing that.  I'll never understand why they mess with success. I need to have a little chat with Dr and the Anesthetist and find out if there is something very short and quick acting that may still be used that can help with this.

I really like my neck cath, the problems are flow limitations, I still cannot get 'wet', as in falling off the side of the boat into the river.  The Surgeon tells me the blood vessels do not like a foreign body within them and over time builds 'material' attempting to isolate the intruder.  This material will eventually cause a stenosis, a restriction in flow through the vessel.  In many cases so much as to restrict the blood flow from the whole right arm, reducing strength and function of the arm.  This is a contributing cause to needing to have the access in an arm 'cleaned out'.

I love the water, retired marine mechanic I was always on and often IN the water. In addition to fishing.  An arm access should allow me to return to some of those activities without fear of a cath site infection.  That initial abdominal infection really opened my eyes to the potential severity of an infection.  I've had infections in my hands that required me to be hospitalized a number of times, none had any symptoms other than a swollen hand, never any pain.  That abdominal infection came very close to killing me before the night was over.  I never want to repeat that.

Getting the access is one thing, using it is another.  I may just keep this cath until the Dr tells me it absolutely has to come out.  Like I've said before, Why mess with success?



 

[Simon Dog]

Like I've said before, Why mess with success?

Because some of the side effects of long term cath use include damage that remains after the cath is removed.  As your medical team about this.

BTDT on PD and Hemo.

- I would have preferred to stay on PD but that was not in the cards.

- Yes, dialysis needles suck.

- If you accept the fact that getting stuck is now part of your life, you may find that it sucks less to stick yourself that have the tech of the day do it.

[MooseMom]

I am not on dialysis nor do I have kidney disease, so I apologize for speaking on something I have not experienced myself. I don't pretend to know about something I don't. My husband is the one on dialysis. I have stuck him with those giant awful needles and have watched him stick himself. But I don't honestly really know how it feels and from the looks of it, glad I don't. But I do know about anxiety and pain. A psychiatrist taught me how to use a "code word" to repeat silently to myself whenever I felt an anxiety attack coming on. I use to have to leave the grocery store in the middle of shopping because I felt the walls were caving in around me. I've had attacks that you wouldn't believe and at the absolute worst time. They are pure misery. I'll spare you any more details. Back to using a "code word" or what you might call a "comfort word". I found repeating this word silently to myself forced my brain to refocus. Just took a few seconds to do and the doc said all we need is a few seconds to get our brains to switch gears to calm down a notch and well, it works for me. As for pain, I learned to "breath" thru it. Doesn't take away the pain but using a breathing rhythm helps. Whether nice deep breaths or short breaths where I am blowing air out of my mouth making rapid little puffing sounds, any sort of "rhythm" helps. Don't laugh but maybe you should read up on how women breath thru labor when they have a baby. That must have been how I learned about that because I was once a birthing coach for a pregnant friend. I had to attend Lamaze classes with her and we had to learn how she needed to breath while in labor. Never forgot it. Good luck, Charlie. We'll all be here when you need us.   

This is really good advice, PT!  Thank you so much for posting this!  This strategy would be useful in many stressful situations!   

[Simon Dog]

A psychiatrist taught me how to use a "code word" to repeat silently to myself whenever I felt an anxiety attack coming on.

My wife uses "John Glen" as her code word when getting dental work.

[Michelle2016]

I had HD and PD almost 19 yrs ago. It was very hard for me with HD. After few weeks of HD, I was able to do PD. It saved my life. Everyone is different. I am glad that we have more options now.

Good luck and best wishes to all.

[LorinnPKD]

Hey Charlie,

Just wanted to wish you strength and success as you enter this next phase.

I started HD in July, straight fistula, no cath, because caths scare me!  While the needles make me squeamish (and if I think about them too much, I get queasy!  ), the reality of it is not nearly so bad as I had imagined before starting.

Here's what I do, and maybe it'll help as you explore your options:

- I use freeze spray on the site.  Not all clinics offer this -- your neph may prescribe you the lidocaine cream to put on like a an hour before session.  Sometimes it hurts a little even with the numbing stuff, but it's usually quick.
- I take comfort in the knowledge that only expert cannulators could come anywhere close to my fistula because it's new.  It's been nearly nine months now and I'm still considered tricky, so I still get the best and quickest techs at the center working on me.
- I NEVER, EVER watch them cannulate me.  I just look away until they tape me up!
- My blood pressure used to spike right before sticking -- I genuinely like and trust the staff but I was still always crazy nervous and anxious!  This still happens sometimes but I've noticed that it happens less when I get there a little early, settle in, chat with people.

I have PKD so I was advised that PD doesn't often work for us because there's so much in there!  So I did HD instead.  But with HD I can take baths, go swimming, just generally soak and douse myself to my heart's delight!  I love the water, like you, and not having access to play in water would be terrible for me.

Wishing you very good support as you deal with this issue, Charlie.  Anxiety is real and I hope you line up with resources that help get you through this.

[Charlie B53]

I'd rather jump out of a perfectly good air craft,


In the middle of no where,



With only a knife.



Well, and a parachute.

[smartcookie]

I actually think a psychologist could help.  Cognitive behavioral therapy is a powerful tool.  It teaches you to look at your automatic thoughts towards a situation.  For example:  "The invasion of the needle is unnatural and I cannot be awake when cannulated."  Then you look at the emotions behind the automatic thought.  For example:  Fear, anxiety, loss of control, intimidation, failure.  Now, change that automatic thought to something more positive and realistic.  For example:  "Needles are not unnatural, but a tool.  I have survived worse than cannulation and I know I am a fighter.  I can do this!"  It takes time for the automatic thought to change from anxious and fearful thoughts to positive and realistic.  It takes exposure to the needles.  It takes slow steps.  That is where a therapist can come in and help you.  If you can talk about the issue, you can take your fear from a 10 to a five.  Anxiety levels cannot stay at a 10 and have to come down.  The more you are exposed to needles and talk about needles in a healthy way, the lower your anxiety should become.  You can always ask for a Xanax or a Valium, but that may impair your ability to drive and is just one more medication you have to take.  Therapy can really work if you put the time and effort in.   

[Michael Murphy]

Charlie everyone argues the form of dialysis they have chosen is the best.  The reality is dialysis  modalities all have pluses and minuses.  Each person must evaluate and choose based on there needs.  In my case I own a lake house up state New York in the Adirondacks, right by the house is a large flood control lake, every fall around thanksgiving they mostly drain the lake and refill it every spring with the run off Faron the snowpack.  Since the water is mostly replaced every year it is remarkably clear and clean.  On a hot day nothing's better than a trip to the beach, that eliminates PD for me.  Home hemo is eliminated by the water requirements, I have a deep well but taking that much out 3 times a week is dicey., plus the lack of conditioned storage area kill home hemo.  So I am pretty much limited to I center hemo.  Now the needles bother me, but when I started and I saw the size of a 14 gauge needle I was startled by the size of the damn things, however the nurse went and got a 12 gauge needle and I felt much better about the 14s, the 12s looked like some thing you would use to kill Moby Dick.  Any don't worry about the needles if you have handled other things in your life, like dental visits and other nasty things hemo while not a walk in the park is very doable.

[LorinnPKD]

Holy cats.  A 12?

My center has everyone on 15s, but they keep a few 14s on hand for visitors (we get a lot of tourists).

[Simon Dog]

I have a deep well but taking that much out 3 times a week is dicey

I am puzzled here.. NxStage uses 20 to 40 L per treatment (I'm on 40L, started on 30L but got upped because I barely  made goal at 30L).

So, assume 40L (10.6 gallons) 5 times a week.   That works out to an average of 7.6 gallons a day.   I am assuming you are a non-urinator.    If you were urinating and not following the "brown flush it down, yellow let it mellow" protocol, you would be using more than that amount of well water even if you had a low water usage toilet.

What am I missing?

[Michael Murphy]

They started me on 15 s and a three hour tour.  3 quickly became 3:30 became 4 became 4:30 some where along the line the needles jumped to a 14‘.

[Charlie B53]

Started at 3?  Dr started me at 4:30.  My butt's been itchy ever since.

I have a pair of 16's that I was to put into a block of plastic.  Just need to find the right resin/catalyst and fabricate a container. Should make a neat necklace.

12's?   OMG! I imagine them to be comparable to 16 penny nails.

[Simon Dog]

Started at 3?  Dr started me at 4:30.  My butt's been itchy ever since.

What filter are you on?

Fresenius cost containment regulations do not allow the MD to prescribe a filter larger than 180 (sizes are 160, 180, 200, 250) unless goal cannot be met in a 4:30 treatment.   (they have grandfathered patients on larger filters at the time this policy was implemented).

CMS policies mandate that everyone get "Adequate" treatment (i.e., meet clearance goals).   While in-center HD  goal above the CMS min (1.4 instead of 1.2), they still implement policies that work directly against the patient in the name of profit maximization.  The corporation would rather you sit in the chair for an extra 30 minutes than spend a few extra $$ on a bigger filter.

If you are "near the edge" and and FMC client (not sure what DaVita;'s policies are) see if your doc can work with you to slip under goal to qualify for a big filter (easy way is to run the blood at a slower rate).

[Charlie B53]

Different filters?   I'm too new to know the difference.  But I will ask Friday.  As far as I know they are using the same package with everyone.

With my cath they are constantly having to come over and turn off the alram, just taking a deep breath, cough, talk to anyone, it alarms.  Many days they slow the pump speed to reduce the rate of alarms.

[Simon Dog]

As far as I know they are using the same package with everyone.

Unlikely.

Look on the filter.   You will see a model number - in the case of Fresenius clinics, it's usual 160NR, 180NR, 200NR or 250NR (NR stands for non-reuse).  A 160 has approximately 1.6 square meters of capillary surface area; a 200 2 meters; etc.   Larger patients get larger filters.    There is a slight diameter difference between the sizes but the label is an easier way to tell.

The Fresenius Kt/V goal for in-center patients is 1.4, and the CMS goal is 1.2.   I give some credit to Fresenius for setting the  goal higher, but they use "meets the goal at 4.5 hours" as the criteria to deny you any filter above a 180 .... even if your MD feels a larger filter would better serve your medical needs.  Remember, you have a right to "adequate" treatment, not "optimal" treatment.

[Riki]

I've done both PD and Hemo.  I preferred PD, but because of a fungal infection, I can't do it anymore.  As soon as I knew I couldn't go back to PD, I had the fistula created.  I hated that damn line.  I had it for a year and a half.

The things I liked about PD were the freedom of setting my own schedule.  I could dialyze all day, or all night, depending on my work schedule.  I had caps so I could disconnect to go to the bathroom or anything else I wanted to do during the dwells.  I actually remember doing a run, disconnecting, then going to see a movie with friends and reconnecting when I got home.  There was also the thing about no needles.  I didn't think I'd ever be able to handle the needles.  I didn't have the fluid restrictions then that I do now, but I do remember having issues with having too much fluid on, or drying myself out with the different solution strengths.  Icodextrin was a killer the few times I tried using it.

Hemo was hard at first, I was really sick, and had a lot of extra fluid in the first few weeks.  I lost a lot of weight, though with the fluid, it didn't look like it.  Once I started feeling better, I gained the weight back.  I've been doing hemo for a little over 8 years now.  I've never had issue with my fistula, never needing to have it "cleaned" and it continues to develop.  I currently have five sites for needling, which really is a lot.  Most only have two.  I use emla cream, which is not prescription, but it is kept behind the counter at the pharmacy.  I pay for it myself, at $50 per 30ml tube, but I can make it last for about 3 months.  Starting a fistula is different now that it was when mine was started.  It was complete trial and error, and I was infiltrated a few times in those early days.  It's rare that I'm infiltrated now.  The nurses tend to start new fistulas now with the aid of an ultrasound machine.  It shows them exactly where to go, and they can look after sticking and see where the needle is, making sure it's not up against a wall or anything like that.

My mother says that I have more energy now that I did when on PD.  I'm able to swim now, which is something I missed when I was on PD (I'm a wannabe beach bum. *G*).  Hemo wasn't a choice for me, it was forced on me.  I would have gone back to PD if I'd been able to.  Though it wasn't what I wanted, I embraced hemo, knowing it would be my only choice if I wanted to continue living.  I didn't like the line, and I knew it wasn't a long term solution, so I got rid of it as soon as I could.  I watched a fellow patient slowly die with her line.  Every time it got infected and needed to be changed, she would have a heart attack.  Whenever I hear of someone choosing a line over a fistula, I think of her, and the grandchild she never got to meet.