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Stopping by to say hello

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  • Stopping by to say hello

    Husband has ESRD. He's been on dialyisis for 6 months. Yesterday was our first day at home for home hemo. Everything went fairly well, but I'm glad to find a forum for support. Without this, I think I might get pretty overwhelmed. I'm a nurse and used to juggling multiple things, but this is getting me close to my limit, especially when hubby won't eat enough protein. He swelled up, losing muscle strength. I've been stuffing him with protein bars and shakes to get levels back up to normal. Looking forward to learning from you all!

  • #2
    I went directly to Home Hemodialysis within several months of reaching Stage V. At the time my care partner (wife) and I started training, I still had plenty of residual function in my polycystic kidneys and produced more than adequate urine. The issues of my disease are related more toward blood toxicity through increased creatinine levels, although BUN levels are elevated as well. I have no fluid issues but was quite anemic and although my appetite wasn't bad, I was about 5 to 7 pounds below my ideal weight. All of this made for a great mental state to go through training. Unfortunately, the seemingly excellent fistula that had been created in my right forearm about 9 months before start of training did not provide sufficent flow at the venous portion and I suffered through five infiltrations during the first 2 weeks of HHD training. A fistullogram revealed an 80% stenosis in the vicinity of the anastomosis and shortly after we were off and running with a new venous portion of the fistula. By late August we were up to 15 ga. sharps and developing my two buttonholes and within a week or so using 15 ga. blunts that I was quickly able to cannulate myself. Right around Labor Day we started HHD at home with the NxStage System 1 and Pureflow SL. I work full time and my wife works part time and initially achieving a schedule that permitted work week evening treatments that could conclude before 11:00 pm was challenging. I've minimized the work week challenges by taking my two days per week (dialyze 5 days in 7) off on midweek nights. I've had some challenges with changes in my fistulla requiring periodic needle "search missions" to find my respective fistula flaps and the NxStage equipment - mainly the Pureflow SL has presented a few resolvable challenges, but after 3 months my care partner and I have got a pretty good Home Hemodialysis gig going. I'm a process improvement professional by day, so I constantly looking for continuous improvement opportunites in the dailly HHD routine to reduce waste (material and movement/time) and variation. I perform all of the NxStage System 1 cycler set up, set up of my cannulation supplies and get myself running and through a 30 liter - 2 hr 45 minute treatment without any assistance from my care partner. She enters the process at the end of treatment when I've pulled my arterial needle and am holding pressure - she pulls the venous needle and applies folded 3X3 and I then hold that as well as the arterial (I use index and middle finger for the arterial and thumb for the venous). While I'm holding pressure, she strips the NxStage System1, disposes of the cartridge, wipes down the cycler and other contact surfaces with a Clorox (bleach) wipe, drains and flushed the PureflowSL SAK if I've spent the 60 liters of dialysate (2nd treatment in 72 hours), disposes of the empty SAK and then lays a new SAK into the PureflowSL "drawer". She also manages the inventory of supplies in our dialysis room and basement that are received monthly from NxStage and my training clinic. When I've completed holding pressure (usually 15 minutes) and applied triple antibiotic and bandaids, I'll complete the clean up of the chux that I work on and will set up the SAK so I can just open a clamp (blue) and press start to begin producing a new 60 liter batch of dialysate before I go to work the next morning. So far I have had plenty (6 to 8 hours) of dialysate life left at the end of my second 30 liter treatment where I am usually treating two days/evenings in a row or two in three days. I will almost always treat on the weekend - Friday included, to give us the most timing flexibility. I have been able to travel overnight with my treatment schedule with a maximum of two off days in a row, e.g. treat on a Sunday morning, fly Sunday afternoon, return Wednesday afternoon and treat Wednesday evening. Since I started dialysis (home hemo) all of my nutrition values have been excellent. They weren't terrible before I started but they were more erratic, e.g. phosphorous and potassium levels. I've been giving myself IV Epogen in progressively smaller doses for the past 3 months from 5000 IU 3X per week down to 3000 IU 3X per week along with intravenous iron when I go in for my monthly clinics at the training facility, has enabled me to maintain a hemoglobin level between 11.0 and 12.0. I've been following a fairly strict kidney diet since early 2012 when I had a miserable bout of high phosphorous and all the symptoms that went with it: awful itching, depressed appetite, sleeplessness, cramping, nausea - and this was nearly 7 months before I started dialysis. The only way I got through it was diet modification and phosphorous binders (actually started in November 2011). My wife does the cooking and she modified the dinner table offerings to minimize phosphorous and potassium. We've been able to maintain our daily exercise regimen of brisk walking throughout home hemodialysis, which has also helped us immensely. We probably eat out more frequently than we did before beginning HHD, and I see this as giving a well deserved break to my care partner who has to more time sensitive juggling to support our daily/weekly treatment schedule. I am now listed with two hospital kidney transplant programs for a cadaver kidney - the first was January 2011 and the second October 2012. With the transfer of my list time from one program to the other, I will conceivably reduce my wait to a little over 1 year for a Type O kidney. I also have the possibility of donor kidney from my wife - a prospect that I vaccilate over, given what would be our joint temporary disability and the possibility that her creatinine and BUN levels may rise above the normal level with only a single kidney remaining to do the work of two.