I am very interested------

[Henry P Snicklesnorter]

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[Hemodoc]

I completely agree with Hemodoc on the fistula over catheter issue .......

That still seems to be the conventional wisdom, however, one of the innovations that has improved the rate of infection using catheters in haemodialysis is the 'Tego Connector.'


I have problems with blood flow and veins, such that a tunneled neck catheter is my only viable access for Home Haemodialysis. I am told by my Home Therapies co-ordinator that connectors of this type have 'dramatically reduced'
infection rates. (Unquantified.)


Certainly they make the process safer and simpler. I have had 12 months with no problems to date ......... 9 months of that dialysing at home.


http://www.cardiomed.com/products/distributed-products/item/tego-connector


Henry P

Having a catheter is sometimes the only options patients have.  I had a patient in my internal medicine practice that started on dialysis about 5 years before I did. She had horrible complications trying to keep an active access whether graft or fistula. She was hospitalized several times taking care of infections in a femoral artery graft in her groin. After they removed this graft, piece by piece mind you, the put in a catheter. She had that for about 5-6 years or so before she finally succumbed to her illnesses. BTW, she did home hemo on NxStage for nearly two years. Having a catheter is not an optimal choice, but yes, you can use one if that is the only option.

[obsidianom]

I completely agree with Hemodoc on the fistula over catheter issue .......

That still seems to be the conventional wisdom, however, one of the innovations that has improved the rate of infection using catheters in haemodialysis is the 'Tego Connector.'


I have problems with blood flow and veins, such that a tunneled neck catheter is my only viable access for Home Haemodialysis. I am told by my Home Therapies co-ordinator that connectors of this type have 'dramatically reduced'
infection rates. (Unquantified.)


Certainly they make the process safer and simpler. I have had 12 months with no problems to date ......... 9 months of that dialysing at home.


http://www.cardiomed.com/products/distributed-products/item/tego-connector


Henry P

Thank you for that info. I would love to see some studies for that showing decreased infections. If it holds up over time with some solid proof it would really be a big help to a lot of home and clinic patients with access problems. I am not as down on catheters as some medical people. I just want to see them improved to reduce infections.

[brenda seal]

I find this topic interesting ! MRSA is what killed Laurie in the end , the source remains a mystery . As has been stated he had many co-morbidities  , RA and long term prednisone use made him more susceptible to infection than most . His last admission to hospital and treatment with high doses of IV antibiotics failed to control the infection which spread to his blood stream . In a last ditch attempt they ripped out his catheter and put a new one in his groin . I found it amazing they left his PD catheter in his abdomen - he stopped PD in October last year . It was all too little too late !

[obsidianom]

I find this topic interesting ! MRSA is what killed Laurie in the end , the source remains a mystery . As has been stated he had many co-morbidities  , RA and long term prednisone use made him more susceptible to infection than most . His last admission to hospital and treatment with high doses of IV antibiotics failed to control the infection which spread to his blood stream . In a last ditch attempt they ripped out his catheter and put a new one in his groin . I found it amazing they left his PD catheter in his abdomen - he stopped PD in October last year . It was all too little too late !

Check out my posts and articles on HOme therapy under PD Etiquette. I discuss bacterias , especially staph. Dialysis patients have very high levels of staph , often MRSA in their noses and skin. This along with altered immune function can lead to devestating infections. Some articles say to take out the PD catheter , some say you can leave it in while treating infections . It is not clear.

[Hemodoc]

I find this topic interesting ! MRSA is what killed Laurie in the end , the source remains a mystery . As has been stated he had many co-morbidities  , RA and long term prednisone use made him more susceptible to infection than most . His last admission to hospital and treatment with high doses of IV antibiotics failed to control the infection which spread to his blood stream . In a last ditch attempt they ripped out his catheter and put a new one in his groin . I found it amazing they left his PD catheter in his abdomen - he stopped PD in October last year . It was all too little too late !

Check out my posts and articles on HOme therapy under PD Etiquette. I discuss bacterias , especially staph. Dialysis patients have very high levels of staph , often MRSA in their noses and skin. This along with altered immune function can lead to devestating infections. Some articles say to take out the PD catheter , some say you can leave it in while treating infections . It is not clear.

With a PD catheter, you can check the peritoneal fluid for evidence of infection. If no WBC's and other factors in the peritioneal fluid and if there is no evidence of infection at the exit site, the PD cath is not the likely source of infection. In addition, removing a PD cath at times can be difficult if it has been in place for quite some time. On the other hand, an indwelling venous cath should always be changed in the situation of sepsis since even if it is not the direct source. During sepsis it will likely get seeded with bacteria and changing to another site is the usual practice.

[Riki]

When I had my peritonitis infection, I could not dialyze, period, through the PD catheter.  Draining and filling was excruciatingly painful, and I remember one of the last runs I did on the Home Choice machine, stopping the drain every few minutes to give myself a break.  In a snap decision, a doctor decided that the PD cath had to come out, and a tunnel line put in.  It was done that day, which happened to be a Friday.  I learned later on that the original plan was to leave me as I was until Monday, see how I was doing with the antibiotics, and then make the decision whether or not to remove the PD cath and put in the tunnel line.  At that point, the infection was taking it's toll on me, and I think if I'd had to wait 3 more days before anything was done, I wouldn't be here today.  I credit that doctor with saving my life, I just wish I could remember his name.

[Henry P Snicklesnorter]

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[galvo]

Henry, dear boy, I am happily institutionlised, for the reasons you outlined above. We have even had a patient/nurse wedding.

[Henry P Snicklesnorter]

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[galvo]

So true, Henry, so true!

[JasonEb]

The bottom line is that the more hemo you get, the better you feel and the better your odds of survival.

At least in my case, the former is definitely not the case.  The first year or so I was on dialysis and a few times in the subsequent 12+ years I went the prescribed three times per week.  I never felt good.  I was always exhausted with no energy and basically just existed, not lived.  After that first year, I decided on my own to only go twice a week.  While I still never feel great, I at least feel better than when I went three times a week.  There was also very little differences in my labs from when I go twice to when I go three times.  In fact, some things seem to improve, I am guessing to the fact that I am more active and not just sleep or do nothing all day.

It always astounds me when I tell techs/nurses how I feel after dialysis, that I don't "feel better".  I almost always feel best just prior to dialysis (or the furthest point from the prior treatment).  Is it physical?  Is it in my head?  Both are possibilities, but who cares?  It works for me.  Am I shortening my lifespan by doing so?  Again, possible, but I would much rather live for 10 years (even though I've passed that mark by far and am doing pretty good) than merely exist for 20.

[JasonEb]

Nephrologists are a completely different animal than the rest of American medical practitioners and with rare exception, that is NOT a complement. It goes further since all of the support staff are like minded Nazi, Gestapo agents I am convinced. I personally believe it fits in with the prison guard experiments from quite a while ago where the guards became quite sadistic simply by virtue of having the power to do so.

http://en.wikipedia.org/wiki/Stanford_prison_experiment

Unfortunately, I truly believe that this same empowerment is at work in dialysis units.

There are some good units out there.  Your description very much fits my prior units (2001-2011), and I just thought that's the way it was.  However, the unit I have been at the past 2 years has been 180 degrees different.  They treat me with respect, they allow me to actually being involved in my treatment, and everyone from the facility manager down really seems to strive to involve the patients in everything from unit improvements to my healthcare.  Granted, I have problems with the company that owns them (DaVita), but the unit itself is exceptional.

Oh, and I feel the same about my nephrologist for the past decade-plus.  Always willing to listen and talk to/with me, not just at me.  Willing to respect my decisions I make about my healthcare, even if he may disagree with them, and has really tried to help in my battles with the aforementioned prior units.

But again, it seems this unit is the exception in its exceptionalism, not the standard.

[JasonEb]

It has been my observation that if you act like sheeple and don't have a clue what is going on then this empowerment game will be in full force especially if you treat the physician as a some sort of demigod. In other words, the patient gives this power to their caregivers.

If you know how the system works (experience), understand D and have specific methods that work for you (clean your own arm, tell them where to stick you, how much to remove, fold corner of band aid to aid in removal, ect) you actually train them and gain their respect and be the empowered one. Fortify your actions with logic and obtain expected results, be courteous and respectful and give them "thanks" when due and they will give up their power to some extent.

I respect my nephrologist and he listens to my viewpoints and generally goes along with them. For the 10 years that I have known him he has only played the "are you a doctor?" card once on me where I backed off and went along with his advice and he ended up being right.

In reality, it's their game on their playing field and you need them so tread easy because you don't want them to tell you to find another place to dialyze.   

This is identical how I feel. Beautifully said.

[JasonEb]

Henry, dear boy, I am happily institutionlised, for the reasons you outlined above. We have even had a patient/nurse wedding.

I met my significant other of the past (almost) 12 years at my first unit.  She was a tech.  I like to say she pierced my heart the same time she pierced my arm with the needle.

She even left the unit (and eventually dialysis care) so that we could date to avoid any issues.

[Hemodoc]

The bottom line is that the more hemo you get, the better you feel and the better your odds of survival.

At least in my case, the former is definitely not the case.  The first year or so I was on dialysis and a few times in the subsequent 12+ years I went the prescribed three times per week.  I never felt good.  I was always exhausted with no energy and basically just existed, not lived.  After that first year, I decided on my own to only go twice a week.  While I still never feel great, I at least feel better than when I went three times a week.  There was also very little differences in my labs from when I go twice to when I go three times.  In fact, some things seem to improve, I am guessing to the fact that I am more active and not just sleep or do nothing all day.

It always astounds me when I tell techs/nurses how I feel after dialysis, that I don't "feel better".  I almost always feel best just prior to dialysis (or the furthest point from the prior treatment).  Is it physical?  Is it in my head?  Both are possibilities, but who cares?  It works for me.  Am I shortening my lifespan by doing so?  Again, possible, but I would much rather live for 10 years (even though I've passed that mark by far and am doing pretty good) than merely exist for 20.

Sorry to hear that. I almost never feel bad at all after dialysis at home. While in-center, the Monday night headaches where HORRIBLE after the long weekend. With all due respect, you may be conflating the side effects of an inadequate dialysis schedule with dialysis itself. When given more frequently and more gentle, most people I know with extended home dialysis have no adverse symptoms from their treatments whatsoever.

Northwest Kidney Centers where Bill Peckham is at offers patients a 2 week trial of daily in-center dialysis so that they can see the true benefits. Yes, you should definitely feel better AND live longer at the same time. I personally would not recommend twice weekly dialysis. Perhaps something to think about.

Take care,

[JasonEb]

Conflating?  Love that word!

Anyway, due to research, trial, and error, I have found that the optimal time on dialysis for me to optimize the benefits of dialysis while minimizing the side effects plus without it being too much of a (in my mind) burden to my life, twice a week works best for me.

Going twice a week garners essentially the same lab results as me going more times per week (keeping in mind I haven't tried going daily; more on that later).  It also leaves me with energy at least a few days a week, compared to none when I went more often.  Plus, while kidney disease is a large part of my life, it is not the central part of my life.  Going daily (or nightly) is just not an option I am willing to accept.  I know this is my choice and it may have long term effects which is fine with me.  I also have zero problems with anyone who have found that their preferred method, as every person has different wants, needs, and results from the different modalitites (despite the fact that the medical industries tries to put us all in the same box).

Our caretakers (dialysis units, doctors, government agencies) should not only factor in our physical well-being, but our mental well-being and various life choices.  I have made mine, live, (and in my eyes over the past 12 years) thrive, and accept the potential consequences every day.

But I never disparage a discussion about alternative methods, and my mind is never set in stone...more like really hard clay

[mamagemini]

Chiming in here...I chose in-center because of the many possible emergency issues that could happen. Heart attack being one of them. I am glad I did because I have had many issues since starting hemodialysis. Simple reasons. Also I lived alone at the time (daughter just moved back in August) and I have a dog who sleeps with me or sits with me all the time. When I get my transplant he is going to go into shock! 

[Hemodoc]

Chiming in here...I chose in-center because of the many possible emergency issues that could happen. Heart attack being one of them. I am glad I did because I have had many issues since starting hemodialysis. Simple reasons. Also I lived alone at the time (daughter just moved back in August) and I have a dog who sleeps with me or sits with me all the time. When I get my transplant he is going to go into shock! 

Rich Berkowitz has had a heart attack and he dialyzes at home alone. Bill Peckham dialyzes at home alone. In fact, the chances of having another heart attack are much less on in home treatments due to the fact you can slow everything down and place a LOT less strain on your heart with every treatment.

[cattlekid]

Add me to the list of people who had a heart attack and dialyzed at home (mostly alone, or with my husband within shouting distance but not always in the same room) for almost a year post heart attack.

Chiming in here...I chose in-center because of the many possible emergency issues that could happen. Heart attack being one of them. I am glad I did because I have had many issues since starting hemodialysis. Simple reasons. Also I lived alone at the time (daughter just moved back in August) and I have a dog who sleeps with me or sits with me all the time. When I get my transplant he is going to go into shock! 

Rich Berkowitz has had a heart attack and he dialyzes at home alone. Bill Peckham dialyzes at home alone. In fact, the chances of having another heart attack are much less on in home treatments due to the fact you can slow everything down and place a LOT less strain on your heart with every treatment.

[Swamp Gator]

I am in center because I live in a house trailer and there isn't the room for all the equipment.

Another reason is because I used to do home care for years and got so sick of what I saw out of those who were supposed to be 'PROFESSIONALS' and I have told my husbands I NEVER want them sick minded professionals near me or my home ever.

And the other reason is because I have 4 chihuahuas and I will never give them up. They comfort me when I am so sick all I can do is lay around in bed.

And the final reason is because of what I saw and what I see going on in our dialysis center. When I started they were killing us patients until I put a stop to it. They are still treating the patients bad and the patients are afraid to stand up to them, but I am not and I won't back off from fighting all the mistreatment until it no longer exists or I am dead.