Barriers to home dialysis

[plugger]

Interesting discussion on the psychology of this.  I suppose one viewpoint reminds us this can be a difficult thing to deal with, the other that it can be dealt with.

Anyway, I think one thing that would help is more choices in treatment.  It seems to be coming about - but boy, is it slow.

[stauffenberg]

Hallo Jbeany: Deine Uebersetzung ist genau richtig!  Du hast ja offenbar die Zeit beim Abiturstudium nicht vergeudet.

[lola]

 

[flip]

Another Hideous Day on Dialysis

I slept in this morning because I was out late at a 4th of July party. I had a late breakfast at Cracker Barrell and went to dialysis. I spent my 3 hrs. in the chair watching a good movie on my laptop. After I left, I weeant to the golf course and played nine holes and had a couple of Bud Lights in the club house. When I got home, friends came over and we grilled out and pitched horseshoes.

Yes, dialysis is a pitiful life and I have a big decision to make when I wake up in the morning. Should I go fishing as planned or just go stick my head in the oven.

Viva Dialysis

[Hemodoc]

Flip that is true torture eating at the Cracker Barrel.  Wow, what a terrible day.  I just suffered through my wifes spaghetti sauce and meatballs but someone had to endure such torment as well.

Thanks for the laugh Flip, but you are killing me.

Peter

[del]

Sounds like a really hideous day flip  .  Our days are always packed full too.  I guess life is just what we make it!! And we choose to make it GOOD!!!  Hubby spent the day on the roof of his shed shingling. It is about 25 feet from the ground to the peak of the roof on the shed!!  Tomorrow we are launching our boat for the summer.  That will be lots of enjoyment!! Just got home from visiting friends.  Relaxing for a little while before we set up the dialysis machine for tonight.  No big deal.  Hubby will probably watch tv for a little while and sleep for the rest of the night.  Pretty normal life.  He is drinking a can of pop now because he does not have much fluid on (only 400 ml ) after a night off the machine!!  Tomorrow will bring many more interesting things to do!! 

Friends of ours had there 35 year old daughter die from cancer last week. She had 2 little girls about 6 and 8 years old.  She would have been more than happy to hook up to a dialysis machine everyday to stay alive!! And she definetely would not have hated it and she would have enjoyed every day. She fought right to the end.  In Dec she was told she had about one week to live. She went to her youngest girls Kindergarten grad the week before she died.

Back to barriers - a lot of professionals are not well informed about home dialysis.  They are still thinking only pd when you say home dialysis.  We have had to explain to a lot of people that we have a dialysis machine same as at a dialysis unit.  We had to ask to be trained.  It was never mentioned to us that we might be good candidates for it. It wasn't until we were called to go for our training that we even knew nocturnal home hemo was an option.  It has been an excellent option for us.  No tme gone from our day at all.  You have to sleep so why not do dialysis then. 
Here in Canada cost is not an option for the patient because machine and supplies are all provided. 

[Adam_W]

I can relate to the part about everyone thinking of PD whenever home dialysis is mentioned. I don't know how many times I had to explain my NxStage machine to medical professionals, and tell them that it is HEMO. I won't personally have that problem anymore though, because I am actually on PD now, but it seems it will always happen until home hemo is advocated more. One question to Stauffenburg. Out of curiosity, what will you do if your transplant fails? You seem to think dialysis is so brutal and evil and torturous, but will you go back on it if you lose the kidney? I'm not trying to flame you or bait you, I'm simply curious what you would do in such a situation. I hope your kidney lasts a long time and you won't need dialysis anymore.

Adam

[stauffenberg]

I'll cross that bridge when I come to it, as they say. But since I will be probably be too old or have too many complications for another transplant when the time comes, and also have less remaining on my life's "to do" list by then, I will seriously consider taking advantage of the assisted suicide program offered by the Dignitas organization in Switzerland rather than returning to dialysis.  A major part of the barrier to escaping life in intolerable circumstances is just the technical difficulty of exiting it without making a mistake and simply making yourself more debilitated while yet not releasing yourself, so the Swiss organization, run by doctors with government approval who provide a certain route to painless death, provides an essential service in such a circumstance.

[Razman]

Suicide may be your decision Stauffenberg and I feel sorry for you and when you go you will soon be forgotten.  But, there are too many of us that look at life differently.  I do not know the next step but I do have a faith and a trust to take each day as they come.  I cannot change tomorrow but I can change the way I look at it and I appreciate the positive comments that I read from so many people.  The majority wins and in this case and with this group we have chosen life !!! 

[jbeany]

Hallo Jbeany: Deine Uebersetzung ist genau richtig! Du hast ja offenbar die Zeit beim Abiturstudium nicht vergeudet.

Danke!  I don't know about it not being a waste of time, though.  This is probably only the 3rd time I've had any use for it since I graduated in 88.  My understanding of the proper grammar is still just as atrocious as it was in high school!
(Can we switch back to English, now please?)

life in intolerable circumstances

Please, everyone, while you are bashing Stauffenburg's choices, remember that everyone's definition of what is tolerable is different.  For myself, I'm choosing dialysis right now.  Knowing that it is a choice, and that I can refuse it any time I want to is what keeps me sane.  I've fought for every bit of control I can get over my treatment.  If it comes to the point where I can't tolerate it anymore, I want the control to be in my hands at the end of my life as well.

[tamara]

Suicide may be your decision Stauffenberg and I feel sorry for you and when you go you will soon be forgotten. But, there are too many of us that look at life differently. I do not know the next step but I do have a faith and a trust to take each day as they come. I cannot change tomorrow but I can change the way I look at it and I appreciate the positive comments that I read from so many people. The majority wins and in this case and with this group we have chosen life !!!

Do the attacks have to get so personal ?

[del]

Let's try to get back on topic here and talk about the barriers to home dialysis and not discuss our opinions on whether or not it is the best treatment or not.  We could carry on with beckering back and forth for years and years and just cause bad feeling among everyone.  For those of us that have had experiences with dialysis we have to choose the treatment that is best for us individually whether that be PD, in center hemo, home hemo or transplant or death. It is an individual choice that we have to make after we are informed of all the choices. 

[Hemodoc]

Thank you del for trying to get back on topic, it appears that there is a small minority that keeps most of the threads from going forward and all we ever hear is a completely negative monologue over and over again no matter what the original topic was.  Sorry, but when, by the grace of the good LORD I am able to get my own renal issues blog on line, it will not include commentaries since I have seen not only this blog dominated by a small minority of critics but several other blogs as well.  What a great resource for exchange of information, yet it tragically is underutilized due to the difficulty of staying on topic.

Nevertheless, once again, as a physician and as a CKD-5 patient, I know personally that one of the greatest barriers is lack of knowledge of the true benefits of home dialysis by the majority of my colleagues I have talked to.  In fact, until I myself was faced with the issue of declining renal function, I likewise had a very negative impression of how dangerous dialysis was.  This came about from my greatest exposure to dialysis from the ICU patients that uniformly did poorly once dialysis was started.  The recent article in the NEJM on the VA experience with standard vs more frequent dialysis underscores the fact that acute renal failure is a different disease process than chronic renal failure where more frequent and longer duration of dialysis is the whole game in saving lives and reducing overall costs.

Thus, I would highly recommend a supportive educational effort on the part of the patient to his own doctor since there is a very negative attitude in American medicine against dialysis that is unwarranted.  Other than the government's lack of financial support, my own opinion is that the lack of knowledge and negative attitudes towards home dialysis is one of the greatest barriers to home dialysis here in America.  Other countries do not suffer from this.

I would hope that we may stay on topic for some more discussion of this and avoid simply negative dissertations that are completely lacking in relevance to the discussion at hand.

Just my own opinion.

[Adam_W]

I have been talking to a lot of in-centre patients at my current centre, and a lot of them have seemed interested in home dialysis, but back off whenever the topic of self-cannulation comes up. I don't know how many times I've heard "I'd love to do it but I could never stick myself". Obviously there are some people who simply cannot stick themselves. In fact I know of patients who are so terrified of needles that they can't even have someone else put them in, and they continue to use a catheter for hemodialysis. I've encountered less resistance when it comes to PD, and several in-centre patients I know are wanting to switch to PD. The biggest barrier that I've encountered regarding PD is dealing with fluid sloshing around in the body all the time. That was a concern for me for a while, but now that I'm doing PD myself, it is not as bad as I was expecting. I have also encountered people who back off from PD because of the location and size of the catheter. As we all know, for so many patients, in-centre dialysis is the only option, but there are so many people that could do it (home dialysis) if they knew about it and wanted to. Oh, well, I plan to keep advocating for home dialysis for as long as I can.

Adam

[flip]

My only barrier to home dialysis is the fact that I don't have a caregiver. I've played around a lot at the dialysis center and I do have trouble sticking myself with one hand. I also have a similar problem pulling my needles. I'm assuming there must be a trick to it that I don't know.

[jbeany]

flip, the trick to a one-handed pull is attaching a syringe to the end of the cannulation needle.  It gives you enough length to be able to pull the needle out with the fistula hand, while holding a gauze pad with the other.

[flip]

What if I just pull the tubes with my fistula hand? It should be easy if I remove the tape from the butterfly.

[tamara]

flip, the trick to a one-handed pull is attaching a syringe to the end of the cannulation needle. It gives you enough length to be able to pull the needle out with the fistula hand, while holding a gauze pad with the other.

Also you can get longer than the standard needle tube length, that really helps.

[flip]

I had thought about trying it with my teeth. No wonder the nurses panic when I'm coming off. We always have 4 patients coming off at the same time and I do tend to get impatient.

[Adam_W]

My last few weeks on hemo, I started using an arm clamp to hold my sites, and I would simply put a sureseal over the site, put the arm clamp over the sureseal after removing all the tape, then once I was sure that the clamp was directly over the hole, I pulled the needle out. Most of the time that worked fine, and there was no bleeding, but occasionally I would have a small jet of blood shoot out from under the clamp and run down my arm. If that happened, I had to drop the needle (carefully) and push down on the clamp for a few seconds, and the bleeding would stop. As for one handed sticking, I used the same arm clamp to hold my graft in place, so I didn't have to worry about trying to hold the bloody thing down as I was putting the needle in. Both of those techniques worked really well for me.

Adam

[Hemodoc]

Dear Flip,

I met Bill Peckham a month ago while I was on vacation and he showed me his methods of self cannulating and removing his needles by himself.  I am sure that he would love to go over his methods with you.

bill.peckham@yahoo.com

[flip]

Thanks, Peter. I've seen some of Bill's videos and have visited his site frequently.

[petey]

Marvin and I have found that the main barrier to home dialysis (specifically, home hemo) is a lack of knowledge that it exists and that it is "do-able."  I discovered the whole concept (and the NxStage program -- the one we currently use) a little over a year ago when I was surfing on the net.  When we asked about it for Marvin, we heard, "It isn't offered in our area yet."  We started "pushing" for it to be an option for those in our area.  Luckily for us, the clinic in Wilmington, NC (about an hour from us) started training for it about three months after we started asking for it.  (And, it looked so promising and so good to us that we checked into programs offered in Durham, NC -- three hours away -- and also Charlotte, NC -- four hours away -- and seriously considered trying to get into those!)  Marvin was the second patient trained in home hemo (last July) in Wilmington.  When we went back for our one-month check up (we go back to the clinic in Wilmington once a month for checkups), we learned that there was a waiting list forming for those in the area who wanted to train for home hemo.  Today, that list is a year-long (if you want the training in Wilmington now, it will be a year's wait before you can start) because there are so many people who want home hemo.  We simply didn't know that it was an option for Marvin -- no one had ever mentioned it to us.

Other thoughts about the barriers --  Marvin is terrified of needles, too (even after 13 years of hemodialysis), but our training required a partner.  So, I do all the cannulating.  I really don't think that Marvin could ever learn to cannulate himself, so I constantly remind him how much he needs me  !

Also, several medical professionals (including a doctor or two) when told that we do "home dialysis" have said, "When did you do your last exchange?"  or "Do you keep a close watch on your stomach catheter?"  "No," we say, "it's home HEMO."  One time, Marvin had to pull down his pants and show the doctor that he didn't have a PD catheter -- the doc was insistant that "home" dialysis meant PD!  "I didn't know you could do home HEMO," the doctor said.  Another example of lack of knowledge -- but you would think that a medical professional would have at least HEARD that people are doing hemodialysis at home!

For the ones we've encountered who do realize home hemo is an option, they mostly have questions like -- where do you store all that stuff?  doesn't it take a lot of time?  isn't it a lot of work on you?  what would you do in case of an emergency (on the machine)? -- questions that center around the "negative" aspects of home hemo.  And, yes, home hemo does have some drawbacks, but it also has lots more positive benefits for Marvin.

So, until we get the word out that home hemo is available, is do-able, is not all negative, and has lots of benefits for the patient, we're going to continue to see barriers to home hemo.  I don't think that the "medical community" is doing a good job of getting the word out on home hemo, so I think it's up to those of us who have experience with it to tell others about it. 

[stauffenberg]

I don't think the whole problem with home hemodialysis can be ascribed to lack of education and understanding of what it involves, since I endured it for some time myself and found it horrible.  The psychological dimension should not be ignored, since home dialysis means having to endure the disease actively coming into your life and your home every single day, rather than being at least to some extent mercifully sealed off from the rest of your existence by being kept at the dialysis center away from your home and occurring only three out of every seven days.  It also means having your face rubbed every day in the actual operation of the machine that defines your life as forever afflicted by a catastrophic and  incurable illness, and if you are the type who would prefer having to operate your own electric chair rather than just having the state's executioner throwing the switch, then I suppose home hemodialysis is for you.  Finally, there are the concerns about possible technical failures while using the machine at home (no one can save you, no matter how much support you have via telephone, if your lines come loose while you are sleeping), plus all the hassle with respect to ordering supplies, maintaining inventory, and setting aside a spare room of your house for all the equipment.

[petey]

It is -- just like everything else -- a matter of your perspective.  If a person sees dialysis -- and more specifically, home hemodialysis -- as a horrible, torturous, "death sentence"-type process, then that's exactly what it will be for that person.  I'm so very thankful that my husband's experience with, and attitude about, dialysis has not been such.

To us, home dialysis does NOT mean "having to endure the disease actively coming into your life and your home every single day."  To us, dialysis is a PART (not the whole) of Marvin's everyday life.  Just because he could have four days "off" from dialysis if he continued to do in-center treatments does not mean that those four days would make him a dialysis-free and ESRD-free person.  "It is what it is," Marvin often says.  Even on the off days, a dialysis patient is still a dialysis patient.  In-center hemodialysis, to us, doesn't mean that the process itself is "sealed off from the rest of Marvin's existence."  It's kind of like the person who thinks that if they ignore a problem, it doesn't exist.  Well, "on" days or "off" days, Marvin's still a dialysis patient every day.  Just because you can TRY to ignore dialysis on the "off" days doesn't mean that it goes away.

Additionally, we do not see home hemodialysis as having Marvin's "face rubbed every day in the actual operation of the machine that defines your life as forever afflicted by" ESRD.  It is what it is ... Marvin's life is forever -- and will be forever -- afflicted by ESRD.  That's a fact.  As long as he's alive, he will have ESRD (a transplant is, afterall, just another form of treatment -- it's not a cure).

The recliner that we have in Marvin's home "clinic" (yes, we cleaned out a bedroom and equipped it as nice and as modern as any in-center clinic) is not his "execution chair."  To us, it is his "life chair."  When he sits in that recliner and has a home dialysis treatment, it is extending his life.  It is not killing him; it is helping him live just a little bit longer.  We have an affinity for Marvin's machine -- he has a picture of it on his cell phone that he shows off often, we take good care of it, we even named it ("Hercules" -- after the mythological hero who once cleaned out an entire stable by diverting a river to wash away the waste -- appropriate for a dialysis machine, huh?).  His "clinic" here at our house always has the door open to it.  It is a bright, cheerful room and a part (not the defining whole) of our home.  It is a part of our home just as ESRD is a part of Marvin's life.  It is a warm and inviting room.  Visitors to our house for the first time always get the "tour" of Marvin's "clinic" first.  We have extra chairs in there for company, and, you're not going to believe this, but sometimes Marvin and I sit in there and talk late at night -- and he's not even running on the machine then!  We feel comfortable in there at any time.  It is a happy place because we have CHOSEN to make it such. 

When we were in training for home hemo and nearing the end, my family and Marvin's family got together and hosted a "shower" for Marvin.  It was a "Bring Home Hercules" shower.  Our friends and family brought presents (paper towels, Clorox wipes, Band-Aids, trash bags, Kleenex, liquid soap, hand sanitizer, a clock, posters, calendars, cabinets, shelves, ink pins, paper clips, clip boards, a dry erase board and markers, etc.).  My brother bought Marvin a big TV for his "clinic."  One of Marvin's brothers bought the recliner.  My sister bought a small refrigerator.  My parents had a sink installed in the room.  We had a fabulous, joyous time CELEBRATING the start of Marvin's home hemo experience.  We made it a party!  (And, we haven't had to buy a single thing for the clinic in a year now!!!!  That was great!)

We have chosen (and we made this choice from the very beginning -- all the way back in 1995) to claim Marvin's disease.  It's ours.  We didn't ask for it, but he got it.  We have faced this disease.  We are fighting this disease.  We own it -- it doesn't own us.  We control it (as much as we can), and it doesn't control us.  We are not afraid of it, and we will not be conquered by it.  We want -- and we have -- the upper hand over this disease.  If this be a battle, we are WINNING !  We have accepted it.  We have embraced it.  We think that home hemodialysis helps us accomplish all of the tasks listed in this paragraph.

I think the whole problem with the barriers to home hemodialysis could be erased if more of the positive -- and less of the negative -- factors were publicized.  When just one story of a horrible home hemo scenario blares out at people, the uneducated, unexperienced ones will automatically assume that this is true with every home hemo patient...and, it simply is not true.  For many (including Marvin and me), home hemo is a wonderful experience with many rewards.  Do we think that the horrible stories of home hemo should be squelched?  Oh, no, definitely not!  We do, however, think that the home hemo patients with positive stories (and we think you'll find many more of these than the former) should stand up and say, "Hey!  It's not like that with me!  Home hemo works for me!  Don't let one bad apple spoil the whole bunch!"  To help eradicate the barriers to home hemo, the benefits of it (and there are many for Marvin and for others) should be flaunted.  We should say to those dialysis patients who haven't tried home hemo, "Here's another option.  Here's something you might find better than the modality you're using now.  Try it ... you might like it!"

Home hemo is what you make it to be.