I've been performing HHD since September 2012 and have posted extensively on this web site regarding my experiences and insights I've gathered regarding the modality. It can be difficult finding specific advice/answers on the DaVita.com site and I have found myself saying the same things over and over to different site members. I would suggest reading several of my posts and if this doesn't provide you with the information you seek, send me a message and/or a Friend Request to facilitate a private discussion.
I'm a new member here and look forward to learning from others' experiences and hopefully I can be of some help/support to other caregivers. My husband is unable to help in the treatment so it's all up to me. I look forward to gaining some insight into HHD from those "old hands" who have a lot of experiences under their belt.
I am by no means an "old hand" at HHD, but I have been at it quite vigorously for nearly the past two years and in the process, my care partner/spouse have gained many valuable insights. Feel free to check out my many information rich postings to these forums and if you are still left wanting for information, use the secure message member to member feature and I will respond.
I've been doing peritoneal dialysis since 2011. At first I thought doing home dialysis during the evening would be better. Frankly, I'm searching what is going on in the alternative field. Have heard that dialysis is reversible and the kidneys can be regenerated.
I'm not certain what you mean by "dialysis is reversible". Damaged kidney tissue does not "regenerate", and thus any loss of kidney function related to damage to the kidneys is permanent. There are conditions that cause kidneys not to function at 100% that could be temporary, e.g. have not caused damage to kidney tissue. Certain infections and kidney stones can produce temporary loss of function.
I am a PKD patient and before I started dialysis with a GFR of 9 and creatinine in the 6's, I had no symptoms of ESRD besides the kidney function values. I was quite anemic with HgB in the 9.0 range. Upon starting HHD training and with it hemodialysis, I received 5000 IU of Epogen 3X weekly along with IV Iron in order to bring my hemoglobin into the 11 to 12 range. This was accomplished over the 5 week span of training and within a few months of 5X weekly HHD my requirements for Epogen dropped in dose size and frequency until I was receiving 2000 IU every other month. I was on that regimen for the past 6 months and now require 2000 IU twice per month.
My nephrologist attributed all of this and a reduced reliance upon phosphorus binders to the kidney "protective" effects of hemodialysis, e.g. dialysis was taking a burden off my still functioning kidneys, which were then able to produce the enzymes responsible for triggering the production of red blood cells (hemoglobin) as well as do a better job of removing phosphorus and potassium from my blood stream.
In general, regular hemodialysis had permitted me to retain more of my residual kidney function allowing for more liberal diet and liquid intake.
I am doing PD dialysis @ home with the cycler machine every night. I prefer PD rather than Hemodialysis b/c I like the freedom I have all day and evening long. So far no big problems except I get shoulder pain & my Phosphorus level is very high b/c I am a soda drinker (I need that caffeine!) but I am trying to give up pop b/c my PD nurse tells me that it is very bad for me. I too am hoping to meet people going through the same thing as me.
I am new to this site but I do Home Hemo. I love having the freedom and control that this gives me. My daughter-in-law is my caregiver and she is awesome. I go to the clinic to meet with my Dr.RN,dietitian, and social worker each month. My flow sheets are sent in daily and I am monitored by my nurse very closely. They are on call 24 hours a day as well as the company my equipment comes from - NxStage. The support while you are on Home Hemo is fantastic I have been doing home for the last six years. I hope to get a transplant some day but until then Home Hemo is the best for me.
I've been posting to the Forums on this site since January 2013 - about 6 months after beginning HHD training and with it, hemodialysis. Unlike yourself, I never went in center and planned on HHD nearly one year before starting training. I was diagnosed with PKD in 2002 and under a nephrologist's care since that time.
Even though I had an AVF placed 9 months before starting HHD training, an 80% stenosis at the anastomosis led to a progression of infiltrations during my first two weeks of HHD training. My extremely competent HHD clinic team sent me for a fistulogram to diagnose the stenosis, correct the issue and after that - no more infiltrations, and around Labor Day, 2012, I "went home" and began what is now over two years of HHD with the capable assistance of my care partner/spouse of 37 years.
I work full time and did so during the HHD training. I've been able to support short notice multi night business travel with good scheduling, local Davita clinic treatments as well as traveling with the NxStage System1.
I've been a big practicioner and proponent of button hole site development, and during the past 26 months have developed some 8 different sites in response to sites that have become unuseable as well as the desire to have the treatment flexibility that comes from multiple sites. I've been rotating through the combinations of 5 different active button hole sites since March 2013 and even replaced several of these because of clotting, scar tissue or lengthened tracts producing flow/pressure/cannulation issues. The site flexibility has enabled me to conduct all my weekly (5X) treatments without issue.
I became qualified to treat nocturnally on the NxStage System1 after participating in NxStage's FDA trials from February through June 2013. I just conducted 5X nocturnal treatments in my hotel last week while on business for the entire week. It did require 12 hour each way drives from home, but being able to treat each night kept my days and evenings open for business and socializing.
I am listed with two kidney transplant programs (Jan 2011 and Aug 2012), but I am in no hurry for a transplant. The results you experienced and now the complications of a future match owed to the antibodies developed through the failed transplant are the kinds of concerns I have regarding transplantation. We've got a good gig going with HHD - great labs, dietary flexibility and all the energy I need to support an active work and play life. It's encouraging to see you've been on hemodialysis for 6 years and doing quite well. I endeavor to achieve similar results.