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First day of HHD at home-A short essay by my husband

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  • First day of HHD at home-A short essay by my husband

    I have been living with ESRD for over 6 years. I started with peritoneal dialysis at home but developed a horrible infection and had to have a Quentin Catheter inserted. I started hemodialysis 3 days a week in-center. I eventually had surgery for an AV Fistula, which matured for over 8 months before I could use it. I was always feeling run down and tired after every treatment for at least a day afterward. I was unable to participate in daily activities with my family on a regular basis, getting tired easily, not being able to eat good meals, and sleeping for most of the time I was home. I was also unable to work and had to go on disability. This was a crushing blow for me, as I was not able to support my family.
    My wife and I took a vacation to our hometown at the beginning of 2013. While I was at the dialysis center there, I was asked if I had ever considered doing hemodialysis at home. I was given all of the literature that I needed to make a positive change not only in my healthcare, but in my life as well. I discovered that not only would I be more comfortable doing my treatments at home, I would also have the potential to be healthier since the dialysis treatments are done 5 days a week instead of 3. This sounded like a fantastic idea to me.
    I spoke with my Nephrologist regarding HHD and she did not seem to be receptive to the idea, telling me all the horror stories about it and all of her doubts in me as a patient. I felt like my health was not the most important issue as far as the doctor was concerned and she did not even want to give me a chance. I decided to go with my gut and made the necessary inquiry to start the HHD process.
    I was immediately contacted by DaVita, who seemed more than happy to help me make this transition from in-center dialysis to HHD. We had to wait about a month for a training class to open up but it was well worth the wait.
    When we went to our first training session, the staff was very open and friendly. It was the first time I was given the opportunity to cannulate my access and I was understandably nervous. Our HHD nurse was very supportive and encouraging and I have been cannulating myself from the very first day. My wife and I were very proactive from the first class to the last. We really enjoyed the training. The staff was very supportive of our decision and more than happy to have us. They made it fun and informative. My wife now understands more about my illness than she ever has before.
    It was tough going to trainings 5 days a week, as my wife works night shift and I was used to going 3 days a week. It was like having a full time job. My wife never complained once, saying that finding HHD was the best thing that ever happened to me and to us.
    I have since changed doctors and am pleased to say that I am receiving full support from my health care team at this time. I feel more in control of my chronic illness since I can decide when to do treatment at home. I no longer feel trapped and tied to a machine to live. I am also feeling much healthier with 5 treatments a week instead of 3. I can remove excess fluid over the course of the week, unlike 3 day a week treatments where they take all of the excess fluid at once.
    It used to take me a full 24 hours to recover from in-center dialysis treatments. My recovery time is almost immediately upon completing treatment and I can now get on with my normal daily activities.
    HHD has allowed me to get a handle on my illness so that I do not feel “married” to it. I feel better now than I have in years and am able to spend more time with my family, including a very busy 15 month old granddaughter. I feel more in control of my health and wellbeing since starting HHD and therefore am more empowered. It was the best decision I have ever made.

  • #2
    THANK YOU for sharing your experience with HHD. Do you have a sterile location to do this in? Seriously, I am looking at this idea myself. Tired of being dialyzed at the Center.
    Fistula - March 2008
    Began Dialysis - August 2008
    Fistula Revision - Feb 2011

    Dialysis Patient Citizens, Patient Ambassador
    NW14 ESRD Network, Patient Advisory Committee Member
    CDC Infections Control Discussion Panel Member
    National Kidney Foundation Peer-to-Peer Mentor



    • #3
      You should really give a try, you'll never know till you really try it. I started in late 2004 and still at it... never looked back...

      Originally posted by DevonTexas View Post
      THANK YOU for sharing your experience with HHD. Do you have a sterile location to do this in? Seriously, I am looking at this idea myself. Tired of being dialyzed at the Center.
      My Blog Site


      • #4
        Thank you!!!!! I needed this.


        • #5
          I have been singing the praises of home hemodialysis since I first started posting sometime in January 2013 after about 6 months of home hemodialysis. My route to the modality was uncommon - never went in center, planned on HHD once I entered Stage IV, got a fistula placed in October 2011 and started HHD raining in July 2012.

          My nephrologist supported me the whole way with referrals for the fistula, the process for getting listed for a kidney transplant (on two lists now), and setting me up with the HHD clinic where I was trained and now do my monthly clinics, get my supplies and receive any support I may require as my care partner/wife and I continue on the journey.

          I took 1/4 day vacation days to support the training regimen, which stretched out over 5 weeks because of infiltrations early in the training. I had a fistullogram performed, wihch cleared a blockage (stenosis) in the arterial-vein union (anastomosis) and we never looked back.

          I've supported multi-night business travel during the past year and have extented trips with the use of in-center treatments in clinics near to my buinsess destination.

          I cannulate my buttonhole access sites and have now developed three button holes (starting with 15 GA sharp dialysis needles) in addition to the one from my training, and rotate through these during a treatment week. It keeps at least one aspect of a treatment fresh. I learned how to conduct nocturnal HHD by participating in a NxStage (System1 Cycler) 5 month trial, and I incorporate nocturnal HHD with daily to complete 5 treatments per week.

          I'll mix up the amount of dialysate I process to affect treatment length based on my work and play schedule, but I'll always treat at least 5 days per week and process no less than 150 liters of dialysate - my prescription.

          All of these things are possible with the right attitude and apptitude, a willing and capable care partner, and a competent and supportive medical team.


          • #6
            Anyone who thinks they can do it and has a good partner should give it a try. I started out on it 3 months ago when I first started dialysis and just start doing HHD at home this week. Give it a try. The worst that happens is you go back to the center 3 days a week.


            • #7
              My hubby started in-center dialysis in April of 2012. During the first six months, he almost died 3 times. When home hemodialysis was offered as an option in November of 2012, I jumped on it as a way to take control of his dialysis. I knew we could do better at home. We were originally on 5 days a week, but have managed to decrease to 4 days a week and he's never looked better. If you have a good partner who doesn't get upset by needles and noises (the machine can be noisy), go for it. It seems to give better control of hubby's lab values while letting him eat and live a more normal life.


              • #8
                I have been doing home dialysis since Jan 2013. I went in-center for 4 months with a perma cath. The center was great and it wasn't very long before technicians started talking to me about home dialysis. Home dialysis has been a true God send, I would not have been able to continue work for a year and go in-center. The center's time schedule was so filled, the only thing I could get was 6:30am which meant I wouldn't get to work until 10:30am-11:00am. I didn't think I could do home dialysis since I didn't live with anyone. I finally contacted a friend who agreed to train with me. I definitely choose the right person as he .was very interested in the whole program. If it hadn't been for him, I would not have continued (buth that's another story). When I started training I was still using the catheter. I had my fistula surgery the month after getting the cath but we were not sure if it was ready. I finally got the ok from my vascular surgeon (who is also great!) just in time as I had developed a blood infection from the catheter and had to have it removed. We did training for 2 weeks in center and then after getting the home machine the nurse came to my house and finished training us ( 2-3 days). My care partner was able to concentrate on the procedures and how the machine operated as I was still not "mentally" with it from things happening so fast. I eventually condensed the instructions down to where I could follow them step-by-step. I used those instructions for nearly 3 months before it all clicked in. Now I can probably make a batch and set-up the machine in my sleep (though that is not advised). Thankfully, the training covered possible problems that could happen and how to handle them. Our first 2 weeks on our own, we must have hit just about every alarm code listed, but because of our training, we knew how to handle most of them. Those we couldn't figure out, our training nurse was always available to walk us through over the phone.
                My situation is not the "norm" as my care partner lived about 45 minutes from me. We finally decided that if there was a problem that I needed him to come to the house, I had better call 911 first. He has since moved to another state, but not before making sure that I felt totally comfortable by myself and doing my first out-of-town "trip" with me, but again that's another story.
                I treat 5 days a week and worked full time since it all started, then lost my job due to outsourcing last month. My employer was really great about time off/sick time and taking extra breaks during the day because of fatigue. I know that I will not find a job that would accomodate my needs as I have a number of other health problems. My current decisions are not to have a transplant (because of the other health problems) and to go on disability. I will continue with the home dialysis until I feel I am mentally or physically not capable.
                Home dialysis is not for everyone unless you have a care partner that is dedicated and able/willing to learn as much as they can about your treatments, your machine and your condition.
                They train you in sterile techniques through the whole process, it is up to you to follow them. I live with 2 cats who are not allowed within 1-2 feet of me or the machine while I am treating. I keep my machine covered when I'm not using it, clean it after every treatment, and I keep my supply table covered until I begin treatment. I keep my house clean just as if I wasn't on dialysis. On my first "trip" with the machine I even dialyized in someone else's living room, using the sterile techniques we were trained on. I have never regretted going on home dialysis and thank the medical staff at the center I was in for helping me to start this journey and for their support along the way.


                • #9
                  Just wanted to give you a "high five" and say GOOD FOR YOU!!! I'm glad you went with your "gut" and searched out other options to improve your quality of life and health. That is what is called being proactive and your own advocate! No one else will do that for you! It's truly up to you!
                  I have been on dialysis several decades. I've done Hemodialysis (when I had to), but prefer Peritoneal CCPD. I work a full time job and like the freedom to do my therapy at night, to free up my days. As with any treatment, there are pro's & con's. I have had experience with infections (through the years), and had to have my catheter removed-requiring hemo while I recovered. I seem to feel at my best with PD, however, if I ever had to do Hemo long-term, I would be interested in Home Hemodialysis. I was never able to have a "successful" graft in either of my arms due to a genetic blood-clotting disorder called Factor V Leiden. All of my grafts clotted off almost immediately after surgery and were never able to be used. When I have had to do Hemo, I had to be dialyzed by a chest catheter and those are not really meant for long-term use. I suppose my situation is unique. I am currently not on the transplant list and at this time do not plan on having a transplant. I did have a transplant in 2009. My x-husband donated a kidney. Unfortunately, due to complications-and in spite of efforts to save it, the kidney had to be removed before ever leaving the hospital. A devastating blow. I'm not sure how much my blood-clotting disorder had to do with the loss of the kidney, or it the clotting off was secondary to rejection. I am glad that you are doing well on HHD.
                  Mari Gossett


                  • #10
                    I am preparing to train starting in January 2014 for Home Hemo. My center staff is great and so encouraging. But the information here is so encouraging. My care giver will be my son and my center will be my back up provider as I don't have anyone else that is close who can help. I also will be sticking myself. My son says he will do anything I need except stick me. Thanks for all the encouraging words here


                    • #11
                      Hello lpierce818,

                      Like the ancient knight said to Indiana Jones in "The Last Crusade" after he had taken a drink from the simple wooden cup, "You have chosen wisely". I made the same decision months before begining hemodialysis and wiith it training for home hemodialysis in July 2012. I had visited the clinic that would be training and supporting me and I had been advised by two patient advocates from NxStage Medical. I also did a fair amount of research on several websites. I had an arteriovenous fistula created in my right forearm in October 2011.

                      The decisions I made influenced the journey that I took and the experiences along the way got me to where I am today - very satisfied with being a successful HHD patient that has not had to give up a demanding full time job or an active life style. If you wish to see what the future may hold, read my rather comprehensive and somewhat redundant posts about all aspects of that journey.


                      • #12
                        My husband is the one on dialysis, but I look at it as I get to give him LIFE 6 days a week! The Home Hemo program was an answer to all our prayers!! I work 10 to 12 hour days, sometimes 6 days a week, but knowing, when I get home we have our routine. I will be honest with you, it is what you make of it. When he was in center getting treatment, the not knowing was the hardest part! We have been married soon to be 20 yrs and I thank God each and every day for dialysis, this has kept him with me for 14 yrs longer than without it. Just keep a positive attitude and all will go well! Best Wishes!!