Changing Times

[cdwbrooklyn]

"Cool great vp info. My other issue is ALL my accesses have clotted. I've been using a permacath for dialysis for at least 3 years now."


Geoffcamp, No worries, you will get button holes which you can use over and over and it's less holding time. 

[lmunchkin]

Geoff, everything is fine.  I do not hold on to things very long. The comments (good or bad) are like you say, ideal for this site.  We can all come and vent.  You have been through alot and I should have been more sensitive to your situation.  Being alone is sad, but it is not necessarily a bad thing, right?

I really think NxStage or even Nocturnal/Extended would be great for you.  If you are a nightime guy, NxStage would work great.  You seem pretty smart and articulate and could really take control over your health.  I hope you do look into it.  I really believe you will be glad that you did.

Keep us updated on what you find out.  There are several on here that do it all themselves.  They can guide you through anything.  I never tried buttonholes, cause Im use to the ladder method.  I think when cannulating yourself, buttonholes are the techinque to use, so I understand.

Come on Geoff, get on board with us.  LOL!!!!

God Bless,
lmunchkin

[geoffcamp]

I can't button hole or ladder. All my accesses have clotted so I have been using a cath (the tubes that stick out of your chest and connect directly to heart via jugular. Anyone do home hemo with a cath??  I actually think it would be easier. No needles almost like PD cath but for blood. Curious if anyone has done NxStage or other options at home with a cath!!  I really wish I had a good fistula or graft. I've tried everything except a femoral one. I was not going to have an access down there unless they could guarantee it would not clot off. They could not give me that guarantee so I have stuck with the permacath solution and its worked great for years. Taking care of it is a hassle but its prone to infection so I clean it well and often!!  Anything to get a few more hours of dialysis a week would be a great improvement. THX guys!!

[cattlekid]

I did. NxStage with a cath for about three weeks when I first started. I would think it would be better to be home with a cath as long as you follow all the procedures. Less chance of staff cutting corners.

[geoffcamp]

Very cool. Your the first person who has told me it is actually possible with a cath. Great to know!!  I am crazy about keeping my access clean!!  I buy cases of these special water proof dressings that work GREAT. I can take a shower and and occasional swim since it gets so hit here in Florida!  I make sure to immediately after a shower or I get wet washing car or swim anything that would get the site moist change the dressing with a new one and very thoroughly clean the site. I have a kit I take everywhere I go in case I get sweaty and decide I need to change it to be safe. So far so good. The dressings/bandages are very expensive about $100 for 50 but small price to pay to avoid life treating infection!!  I order from a medical supply company and that's A LOT cheaper than buying by the box if 5 at retail prices!!  G.

[lmunchkin]

Have you seen a Vascular Surgeon?  I would get a good one and insist he do a fistula on you.  Do some vein mapping and find the best place for circulation.  John went to a great one and let me tell you, his veins were not big at all.  Now, he has a beautiful "rope" between his wrist & elbow on his right arm.  There were several reasons it went in his right, but primary reason was because of a metal plate in his left arm from a motorcycle accident. Plus, very poor circulation!

I would not want anyone but this VS to operate on J.  He did all his surgeries and has kept him alive longer than expected. His whole left leg was saved by this surgeon due to a vein bypass from groin to ankle.  Literally saved his left leg.  Then when right leg was giving problems, it was thought that he would have to amputate above the knee, but surgeon found enough circulation below the knee.  So it was able to heal pretty quickly and no infection visiable.

His last hospital confinement was Feb 2010 and he has not been back since. Once they cleared him of all gangerine and healed up quickly, he started to feel like his ole self.  It was such a tring time for him, but by the grace of God, he pulled through it all!

Go see a good VS, Geoff.  One who deals with alot of Fistula's.  Good luck!  I hope you find the best dialysis option for you.  I know you are pleased with your center, but "there is no place like home!!!!!"

lmunchkin

P.S. Good Night. Work commeth quickly!  Must get some sleep!

[Henry P Snicklesnorter]

.

[geoffcamp]

Unfortunately I have seen the best of the best in this area. I have even been examined by makers of grafts and other means for dialysis accesses. I have had 5 grafts 2 fistulas and a hybrid of a cath and a graft called a HERO graft. My arms have been cut up so many times its crazy!!  Nothing has worked. We continue looking into why and altunitives but with no luck so the permacath has been my life saver!!  Yea since 2002 we have tried everything and have seen the best of the best specialists. Just no luck!!  Maybe one day soon we will figure something out!!

[geoffcamp]

I did read that post Hery P. but I was not familiar with this.

Tego connectors have made connection/disconnection much safer, but still not foolproof and they require changing on a weekly basis using aseptic technique.

I was not sure if we were taking about the same type of access cath. And I didn't understand about changing on a weekly basis. My cath is under the skin and comes out in my upper chest. 2 tubes they use to connect me to the machine. Are we on the same page??  I'm sorry I'm still trying to figure this out forgive me if I'm not following you. I thought it sounded like a different type of cath then the one I use. Maybe I should take a pic and show it to you.
THX. G.

[Henry P Snicklesnorter]

.

[geoffcamp]

THX Henry. Yes we in the US (in my opinion) seem to always be just a step behind when it comes to advancements in dialysis and over all treatment for those of us with CKF. I will be looking into this and see if it is possibility for me. The extra few hours a week I would do would be of great benefit to me. G.

[Riki]

I would LOVE to try Nxstage, if it were available here.  My problem would be finding someone to put the needles in, because I'm not able to do it, due to poor eyesight, and my mom refuses to learn how to do it.  I would love to be able to do dialysis on my own terms again, like when I was on PD.  Then I could go to school.  I can't right now because there's no way I'd make all classes, with the way dialysis is scheduled here.  That was my plan, before I got the peritonitis that sentenced me to hemo.