10/21/07 CosmicKelly's First Adventures in Home Hemo

I recently received an email asking me to detail my experiences in home dialysis training. I thought I would begin by posting a list of my considerations before training began so you can have some insight into my thought processes (or lack in thereof!!) and find out how things turned out. (CAUTION: SPOILER à Mostly for the good, so far!!)


I will say that some things that might seem completely obvious to you (like questions you may have and the like) may not have occurred to me, yet. So, please feel free to contact me (and clue me in!!) at cosmickelly1968@yahoo.com if there’s something that you’d like to ask or say that you don’t want everyone else to know. If you tell me to keep it confidential, I promise you I will. (unless it’s illegal or harmful, then I will notify authorities)


In the beginning, I had/still have a few concerns:
1. I knew I wouldn’t be able to stick myself as I have diabetic neuropathy to the point where there is no feeling in my fingers. Would Keith be able to stick me?
2. Is the buttonhole technique dangerous to me if Keith doesn’t get it ”just right“?
3. I live in a teeny tiny apartment. Would there be room for a small machine and a month’s worth of supplies?
4. How much time is home dialysis going to take?
5. Would I have to get rid of my dog?
5. Could Keith and I really pull this off?
6. What if I died on the machine?


My original intention was to be trained in using the NxStage machine. I had heard all about it in this and other groups and had even met a dialysis friend that was using it. (She sure is a globetrotter now!!) Everyone seemed to have high praise for it. I had to get it and get started on my new life as a travelin’ gypsy. Enter a relatively long time of daydreaming about my future travel adventures!!


I was told that the best way to get started was to get one of my doctors to refer me for training. I talked to several different doctors who had varying amounts of experience with home hemo. Ironically (or not), the docs with the most experience were the most supportive ones. I had one doctor who absolutely tried to talk me out of it. Dr. P told me that home hemo would put so much strain on our (Keith and I) relationship, that Keith would leave me. And “where would I go then??,” he asked. After talking with him, I went home shaking. Keith asked me what was wrong and I told him what the deal was. Keith was angry that Dr. P would make those assumptions about him and reassured me that his commitment was unfaltering. We would wait to talk to the nephs responsible for home hemo in my area (Drs. Detterding and Webb) and see if they would let me sign up.


FINALLY, Dr. Webb showed up at the center. I worship the water he walks on, anyway. So, I was especially glad when he rounded at our clinic. I talked to him and he said he’d put in the call to our home hemo training department to “get the process started.”


A couple of weeks later I got the call to come in and speak with Sara, the nurse that runs the home training dept. I told her that I wanted to get started learning the NxStage machine and she told me that I couldn’t train for NxStage and keep my current nephrologists group. The only training available for NxStage is at Baptist Medical Center in Winston Salem. (about an hour and 15 minutes away from home) Travel back and for the training period would not be a problem. However, if I ever got sick, I’d have to go to Baptist Hospital, where my new nephrologists would be. Keith, who has night blindness, would not be able to get me to the hospital (I drive myself now or get my in-laws to take me when it’s really bad) or come visit me (after work) once I got in. So, I had to think about a plan B. @#$%^& So much for globetrotting!!


BTW, There was also some indication that DaVita (and money) had something to do with the NxStage training. If I wanted to go to UNC Hospitals in Chapel Hill, I could transfer to the DaVita clinic in Burlington and go to the hospital in Chapel Hill if necessary which is only about 30 minutes away. I asked why my Fresenius docs weren’t doing the training in G’boro and was told that’s where the money was involved. Apparently (??), DaVita bid on and won training for NxStage in this area.


What was my other option? Sara told me it was possible that I may be able to get a machine, just like the ones they were using at my center, at home and dialyze on my (then) current 4 day a week for 4.25 hours or we could try a nocturnal schedule of 6 hours on MWF and do it during the day. All Saturdays would be done at the clinic. (The clinic I DETEST!!) I opted for the 6 hour option because I figured if I was going to do home hemo, I wanted to get my days back. I could dialyze at night and spend all the time I used to be at the clinic doing worthwhile things like learning Tagalog or chasing turtles.


She made an appointment for “one of the guys from the back” to come and see if it would be physically possible to get the dialysis machine in the house and hooked up. As luck would have it, were going to be doing my dialysis in the kitchen right close to a sink and the fuse box!! All we have to do is get a garden hose attachment from Home Depot and get an electrician to come in put a socket on the wall that is connected directly to the fuse box and has it’s own breaker. We contacted our landlord who has agreed to pay half of the expenses to get the new socket installed. One of Keith’s customers is a retired electrician and has said he would put it in for us once half the training is completed. (Training is anywhere from 4 to 12 weeks.)


We also had a home visit from Sara. She came in and toured the place. Madison greeted her in all his canine glory!! (I had been worried about having to get rid of him.) She said that he could stay. Our house was clean and dog hair free. (as always) As long as we kept it that way, there shouldn’t be any need to worry. Yea!! Maddie stays!!


We also asked her about space to put everything and she assured us that with the way Keith had set up storage in the breakfast nook there should be plenty of room for everything. Supplies, my chair that will be provided and the machine. Cool, I thought!! Almost everything I was worried about in the beginning has taken care of itself!! Maybe this is supposed to happen!!


Then, Sara said that we would need two telephone lines for the machine. One for the machine to be hooked up to, to call the nurse-staffed call center when the machine detects a problem and another so that the nurses can call us back and make sure everything is going smoothly and to talk Keith and I through any problems we may be experiencing. I understood the need for 2 lines, but what came next floored me!! I said to her, “Keith and I are already paying for cell phone lines that we can use to carry to the machine and read off any messages on it.” She said, “No Go!! The dialysis machine maker requires that both lines be land lines. We can get funds to pay for the line going to the machine. YOU have to pay for the line that they will call you on because they assume everyone has a land line at home.” I then replied that “In 2007, there are technology savvy dialysis patients that have evolved beyond the use of landlines and that I wanted to read the policy myself.” She contacted about a half a dozen people who finally gave her the policy. It basically stated that they did NOT advocate the use of cell phones around these machines and implied that there may be safety issues in doing so. (I am looking for this policy as we speak.) In reading the Fresenius manuals tonight, I could connect the machine to my internet cable and connect to the call center that way-since I am already paying for cable service. I’ll ask Sara about it tomorrow.


We set up the first training day for 09/12/07, four days after the wedding….
More about THAT when I next write!!


CosmicKelly (still smiling’ & tapping my remaining toes!!)