Fistula questions

[Dannyboy]

How "delicate" or prone to mechanical injury/damage is the typical fistula if there is anything like one that's "typical"?   

I read where you don't want to permit BP cuff on that arm, and to limit(?) the amount of weight carried by that arm, and to be very aware of not physically injuring it by scrapes, etc.    All of which makes perfect sense.

I know when it is "fresh" with bandage it would be especially vulnerable, but I'm wondering how practical it will be to go the HHD route for D since I work a lot with my hands and have to (occasionally) lift stuff and am frequently putting my hands and arms into restricted spots?  Do they make any kind of elastic cover thingy for protection?   I can wear long sleeves of course to help protect.

I absolutely want to keep working, I'm self employed, have some flexibility on the kind of work i take on and can figure out ways to avoid especially heavy lifts I think, just wondering what others have found the limits to be.

---Dan

[M3Riddler]

How "delicate" or prone to mechanical injury/damage is the typical fistula if there is anything like one that's "typical"?   

I read where you don't want to permit BP cuff on that arm, and to limit(?) the amount of weight carried by that arm, and to be very aware of not physically injuring it by scrapes, etc.    All of which makes perfect sense.

I know when it is "fresh" with bandage it would be especially vulnerable, but I'm wondering how practical it will be to go the HHD route for D since I work a lot with my hands and have to (occasionally) lift stuff and am frequently putting my hands and arms into restricted spots?  Do they make any kind of elastic cover thingy for protection?   I can wear long sleeves of course to help protect.

I absolutely want to keep working, I'm self employed, have some flexibility on the kind of work i take on and can figure out ways to avoid especially heavy lifts I think, just wondering what others have found the limits to be.

---Dan

Dan,

Are you on dialysis currently?   Yes, you myust protect your fistula. The vein/artery is very close to the surface of the skin and when the fistula matures, it could more than tripple in size.  You should never get your blood pressure taken from the arm, do not wear snug clothing, no bloodsticks, and no heavy lifting. These all can damage the fistula.
How much do you have to lift at work?

[Dannyboy]

No not on dialysis yet....I expect to be scheduled for an access point relative to my as-yet-not finalized modality choice in the next month or so.   So just trying to consider and be aware of all the pros and cons, so to minimize the surprises later.   HHD sounds like my best choice so far.

Once in a while I lift 100 pounds or so using both hands/arms of course....I carry a tool box short distances that is 70 pounds (with one hand, wouldn't need to carry it with the left hand of course)..but no doubt some of what I do will have to change...I guess what I'm trying to get a handle on is the degree to which I'm going to have to modify/change what I do working.    I think PD also has lifting limits as well, right?

[M3Riddler]

No not on dialysis yet....I expect to be scheduled for an access point relative to my as-yet-not finalized modality choice in the next month or so.   So just trying to consider and be aware of all the pros and cons, so to minimize the surprises later.   HHD sounds like my best choice so far.

Once in a while I lift 100 pounds or so using both hands/arms of course....I carry a tool box short distances that is 70 pounds (with one hand, wouldn't need to carry it with the left hand of course)..but no doubt some of what I do will have to change...I guess what I'm trying to get a handle on is the degree to which I'm going to have to modify/change what I do working.    I think PD also has lifting limits as well, right?

Yes,
PD also has limitations. Dont believe they are as strict as Hemo.  Feel free to ask any questions about both PD and Hemo... I was on PD for 12 years and now home hemo for over 5 years.  I would suggest either type of home dialysis over in-center dialysis...... With in-center, you are not receiving optimal dialysis....Your nephrologist should discuss all modalities with you.  Dont be afraid to ask questions. Your medical team should be able to answer every question in detail.
I would also suggest learning as much as you can about dialysis and your condition. Dont leave it up to the docs.. You have to watch them like a hawk.  You are your own best advocate.....Education is key....

[Dannyboy]

Thank you.
Yeah, I'm planning on doing it at home, just haven't settled on a modality.
I've had an "introduction to [the joys of] Dialysis" meeting with the team, and at this point I just have to decide on modality.   They offer what I think are the maximum number of choices:  all "flavors" of PD, and same with HD....leaning toward home nocturnal HD as it may have the potential for more activity during daylight.

I've been reading a lot, especially here on IHD, learned a lot, but have still a lot to learn LOL.

[lmunchkin]

Danny, If I recall when husband got his fistula, they really did not want him to do to much with it until it was ready to use. Definitely do not take BP or have blood drawn or anything like that on your fistula arm.  It is your LIFELINE! Your vascular surgeon will (I hope) tell you what to and not to do with it. Hopefully you have a good one that will go over all of this with you. Your neph should be able to tell you.

I do believe that the Fistula is a better way to go cause it is Natural, whereas PD is a catheter inserted into your tummy.  PD is what my husband first started with and did successfully for 5 years.  Then he went In-Center for a little while and is now doing NxStage at home.  Looking back, we wish we had done this from the very start.  But I agree with M3, PD or HHD is so much better than In-Center. And Iam sure you have gathered from this site, that alot of people agree, doing at home is better dialysis and better control overall.

Do you have someone to help you when you do it at home?

lmunchkin   

[Dannyboy]

lmunchkin,  yes I will have a helper for HHD, my dear wife.    I know that having a helper is mandatory.    She has been very supportive through the journey here.

I will/have been asking questions of my neph and have recently begun sitting down with the 'nurse-educators' that will do training once I settle on a modality, but will definitely do home style.

Some of my wondering and questions are probably pre-mature as they will become perhaps obvious later.....a bit of a defensive reaction I think to coming to grips mentally and emotionally with situation.   Feel like I can cope better with everything if I sort of 'know what's coming'.      So many things to absorb and learn.    Comforting to know all of you have been through the steps (and more since we're just starting).

---Dan

[chook]

Danny I only had a short time on PD and even shorter HD session - just 8 weeks. I ended up with a small hernia and the heaviest thing I lifted whilst on PD would have been our 11kg grandie. But I'm small framed and have had 2 children and they are risk factors. I found PD extremely good and will choose it over HD if I need dialysis again. Great to aee you researching your choices. Best of luck with it all

[lmunchkin]

Chook is right, it is whatever works best for your situation.  Also, if you are going to get a transplant, PD they say is the best way for those considering a transplant.  So glad you are considering Home Dialysis whether it be PD or Hemo!

Good Luck Danny, and keep us updated, okay?

lmunchkin   

[Dannyboy]

Why is PD better for a prospective transplant patient?   
--Dan

[RichardMEL]

My understanding for the no no on BP cuffs is the constriction/pressure on the blood vessels is not good. They already get under pressure when blood is going through them in and out, so you don't want to aggrevate them. Same issue with lifting heavy weights or covering the fistula site with heavy clothing.

Really though I found in my experience that once the fistula matures it's a pretty tough thing. Mine's still going strong after 7 years (and it hasn't been used for six months now - hooray!). You just need to be sensible, but not go overboard in panicing about it. It is your lifeline so you don't want to be doing stuff to push the limits though.

[MooseMom]

Why is PD better for a prospective transplant patient?   
--Dan

Whichever modality keeps you healthiest is the best for a prospective transplant patient.  There is no perfect modality.  Some people like PD because it means not having to have vascular surgery and not having to faff about with needles, which is great if you already have a donor lined up. 

It's terrific that you intend to keep working; that will keep you healthy physically as well as psychologically.  The ideal is to have dialysis help you keep your "normal" life to the greatest extend possible.  You don't want your life-sustaining treatment to lead to unemployment and disability!  So, good for you for asking these questions.

I would really encourage you to ask these questions of your vascular surgeon if you already have one.  If not, maybe you could ask your neph to get you an appointment with one so that you can get some answers.  All of what you've ready about keeping your fistula away from BP cuffs, etc is true, but to get more specific answers to your specific questions, do ask.  When I had my veins mapped, my surgeon told me that after surgery, I had to use common sense but that I also needed to use the arm so that there would be good blood flow through those veins and the fistula would mature.  He told me that men who have done a lot of physical labor usually have fabulous fistulas because they have well developed veins.  Yours may be such that you will be allowed to life more weight than those of us who don't lift heavy weights on a daily basis; you may have a big advantage already!  Perhaps you could say, "I have this kind of job that I want to be able to continue with, so is it possible to create my fistula with this in mind?"

Good for you for looking seriously at home treatment; that will give you so much more control over your life.  I'm very eager to hear what answers you receive.  Please let us know what you find out. 

[Dannyboy]

Thank you all for the enlightening responses.   Several of you have emphasized getting my medical team's views on my questions, and I will certainly do that, no problem.   

Experience, however has taught me that sometimes the medical types don't communicate as effectively as one would hope.    So I'm trying to do my "due diligence" you might say, not that I won't seek and listen to higher level advice.   

I sure do appreciate the wealth of practical knowledge and exerience that all of you have. 
---Dan

[MooseMom]

Oh my...I had so many typos on my previous post!  I apologize for that!  I guess it HAS been a long time since I've done any typing on my computer!

You're right, Danny, in that medicos often don't have the best communication skills, and that's why it is a good idea to do your own reading and research and then present what you've learned to your own doctor.  There is a lot of information available out there in the info, a lot of it is GOOD info, but not all of it will be useful to YOU in YOUR life.  I hope your medical team is one that appreciates a well-informed patient rather than prefers their patients to be more sheeplike.

We all have a tale to tell about our fistulas.  Most IHD members will tell you about how often I've whined about mine.  Mine is in my upper arm; it was created over a year ago, and as I am still pre-dialysis, I have not had to use it yet.  I follow the rules re BP cuffs and IV sticks, but truth be told, I lift whatever I need to lift.  I have to tell you, though, that on days where I have done a lot of lifting of mulch or heavy pots and pans, the evenings often bring discomfort; my veins in my fistula arm throb like crazy, and it feels like the blood is straining to burst out.  I've arranged emergency appts with the surgeon and even once recently went to the ER, and my fistula has been checked and pronouned "very good".  My point is that it is possible that even though you may be able to lift heavy weights even with a fistula, it  may result in some rather bizarre sensations in your arm.  That's my personal experience, and it may be entirely irrelevant to you in the long run!

Dialysis is a long-term adventure, and your medical team will be with you for the duration.  Therefore, it is important, in my view, to communicate your expectations and your concerns along with updates on how you are feeling.  You are more than a set of lab results.  Make it very clear that you intend to keep working and expect your treatments to accomodate that. 

[Dannyboy]

Moosemom, i hear you.   My med types (so far at least LOL), have encouraged me to educate myself on this stuff.   And I'm with you on recognizing that it's my life involved, and to ask questions and insist on answers.  You bet.

RE: Your fistula.   You doing gardening with yours is the very kind of thing I was wondering about, and yes I understand of course that "my mileage my vary", my experience/body/veins may be entirely different, but just hearing that  you can do stuff like gardening is heartening, really good to hear!

I gather that it's not advisable to put a tight-fitting protection kind of thing on it?   Along the lines of those elastic knee things?    I bet that would "squeeze" things to much, right?

Hmmmm.   On the other hand, I had taken PD off "my list" because I was hoping to be able to get in the water once in a while still, (was told that was pretty much out of the question with PD catheter in place) but with the possible limits to my left arm with a fistula, I am re-considering.    I will be needing to make up my mind by the end of the month it looks like.   

I read that many others have just not been able to keep working, that may be my destiny as well.......but I'm looking it that from the angle of "cross that bridge when i get to it", as all of the crap about Kidney disease/failure is a large enough emotional load, to not let the prospect of having to quit working (or reduce working amount) more than I want to think about right at the moment.   Power of positive thinking kind of thing.

---Dan

[Bill Peckham]

I've had my fistula for 21 years, with one patch operation about 10 years ago. I joined the carpenters union after starting dialysis (15  years ago) these days I work producing graphics for tradeshows. Making graphics means being around knives, moving machinery and presses, I'd say most of the people I work with have scars or missing parts from work accidents, and my skin is fragile (dating I think from predisone pre and post transplant), so I always have cuts and scabs on my hands. About an hour ago I stabbed my finger with an a xacto blade. The fistula is a concern but you wouldn't want to slice your forearm with or without a fistula. That said, it is something I think about; I considered wearing an arm guard like the one I use to wear for archery but I don't. Maybe it is being fatalistic.


The lifting isn't a problem at all - when I travel I have to lift the 100 pound NxStage off luggage conveyors. At work I'm lifting all day - mostly light weights but on occasion there are heavier things. I think the confusion is that you are not to put weight across the fistula - like a purse strap - but lifting with the hands shouldn't be an issue with the exception of right after dialysis when a good stretch can cause the needle sites to bleed.

[Dannyboy]

Wow Bill, thanks for the info....that's re-assuring.   I think I'm on the right wavelength now, that if you're reasonably careful with it, (and maybe a slight amount of luck LOL) it is something that can be worked into daily routine, even for folks who like you and me work with our hands.    I get your point on the lifting thing (not directly on the fistula), and yeah, a NxStage would probably be the heaviest thing i would eventually need to lift.

My work day lifting sounds similar to yours.....just once in a while heavier stuff, along with cuts, scrapes, and bumps along the way LOL.

---Dan

[MooseMom]

One of the simple pleasures in my life that I enjoy tremendously is swimming.  I abhor indoor pools because I can just SEE fungus growing without the sanitizing benefits of sunshine and fresh air, so my trips to the pool are confined to the summer, but that makes them all the more precious.  I have a pass to our park district's swimming pool; it has just been renovated, and I can't wait to see it (the pool opens Monday for the summer!  Yay!).  It is located near the river, and it is a beautiful place to spend the morning in gentle exercise.  The moment I hit the water, I can feel my anxiety drift away.  There is NO WAY I am willing to give that up, and for that reason, I decided against PD.  You have to live with your dialysis modality, and what may be perfect for one person may be too much of a sacrifice to another.  If the modality you've chosen ends up not fitting well into your life or is not providing you with good dialysis, you CAN change.  Nothing is written in stone.

I like to eat.  I cannot imagine having to restrict my fluid intake, especially during the summer months.  I intend to stay active, and that means exercising, and that means sweating, and that means getting thirsty, and that means drinking.  My plan is to do extended/nocturnal home hemo because I want to swim, drink and eat.  More dialysis means, in general, fewer restrictions.  It's just that simple.  I'm mad as hell that I will have to do dialysis at all, and I figure that fewer dietary/fluid restrictions will make me less pissed off about the whole thing.  Everything is a trade-off, and only you can decide the value of what you are trading.

Whether or not to wear some sort of protective cuff may depend upon where your fistula is located.  If mine was in my lower arm, I would at least wear long sleeves to protect my arm from the thorns on my blackberry bushes.  If wearing some sort of protective cuff gives you peace of mind, I'd certainly consider it, but I am thinking that it should NOT exert any real pressure.

[Dannyboy]

Retaining the ability to swim would be nice, yes...also you mention "sweating".    Hadn't thought of that, as I sometimes have to do work in areas where it's a bit warm, and then yard work in the summertime always works up a sweat.    I believe it is very important to keep the PD catheter as dry as possible, so that seems like a big issue to me at this point (pre-dialysis, and hence don't know for sure).

Most of the reasons you state Moosemom are advantages that I'd thought of too, relative to doing HHD, preferably nocturnal.

I know that the modality decision must be an individual choice, as everyone's circumstances vary.
---Dan