By Peter Laird, MD
After an exceedingly long wait, I have now completed my first week of home dialysis training on the NxStage machine. My conclusion after this week, is that I have proven with my own experiment that daily dialysis is FANTASTIC and I never want to go back to to usual incenter hemodialysis no matter how well done. However, there are several issues that I have either observed or experienced in my first week which I will relate as the Good, the Bad and the Ugly.
First, the Good. As I began above, the differences of cognition and general well being can never be achieved with usual care in center that I have experienced with 5 days of continuous HD therapy. I ate my first orange, my first orange juice, my first banana and my first sliced tomato in over 3 years. Wow, I have been deprived is all I can say.
I must make a special note of how fantastic my trainer at Kaiser Sunset is. Her name is Rita and she makes me almost, but not quite forget that it took nearly nine months from the time of my request for NxStage until I started my home training. My wife and I felt a kindred spirit with her immediately, and she is the first dialysis person to give me a hug and peck on my cheek at the end of my first week of training. She is a breath of fresh air after over two years of some very unpleasant experiences at the hands of dialysis staff and I look forward to learning as much as I can from this kind lady.
There is much more that I will state over time on the "Good" of home dialysis, but for now let me turn to my criticisms. The Bad:
- (NxStage) No air chamber in the system. It is impossible to get all of the micro-bubbles out of the system before the first pass is giving to me. I went through the snapping step very carefully 3 times and still after sitting for a few minutes, several grew back onto the tubing again. My question is what effect does this have on accumulated pulmonary function tests over years of use. Patients on the cardio-bypass machine have significant cognitive declines after Coronary Artery Bypass Grafting (CABG) from this simple issue of micro-bubbles going to the brain. I am left with an open question of what will the long term effect of micro-bubbles be on my pulmonary system? Why not eliminate this issue with air chambers that will reduce this issue during the priming stage.
- (Kaiser) My long wait. It appears that some of the problem is in the referral practices where many patients are referred before they have a mature access or have any experience with self cannulation. This leads to training times of over 2 months in some cases. I believe that an upfront self cannulation and access maturation in the referring unit will improve the training times dramatically. With the integrated health care system of Kaiser, requiring this prior to referral will secondarily improve buttonhole use across the system. Nevertheless, Rita has made me forget almost all of my frustration on waiting so long. I wouldn’t trade her for anyone.
- (Kaiser) I became aware that Kaiser has contracted with some excellent outside units for over a year now specifically for access to the NxStage only three weeks before I started my own training. It is a shame for Kaiser to lose the good press it deserves for going forward with this NxStage access system wide by not having adequate communication to all involved, especially to the patients. For issues 2&3, I will give my input to those that can make a difference at Kaiser that I know personally. Kaiser has a long history of improving dialysis care for all patients, so with Rita by my side, I will move on and hope that my own experience makes it a better experience for those that will follow me.
Now, for the Ugly!!! Within 30 seconds of hooking up to the NxStage and cranking the system up to speed, I experienced the onset of an overwhelming “taste” that I have never experienced before. In addition over the next minute, I developed nausea, a mild burning in my chest which was followed by 24 hours of chest congestion without phlegm production and mid abdominal discomfort lasting for the majority of my dialysis session. I did a progressive rinse protocol the rest of the week and was able to eliminate the physical side effects with 2.5 L rinse on Friday, but I still had a fairly strong plastic taste that reminds me of Nitrous Oxide.
I have looked into this on the internet and found several people who have complained of this on Home Dialysis Central and on IHD. However, I have yet to find any references to this on a PubMed and Google search. But to my surprise, after reviewing my NxStage handbook from cover to cover today (OK, I skipped a lot of the alarm section) I came across the following discussion in Appendix D, Synopsis of Clinical Study in their discussion on Unanticipated Adverse Device Effects (UADE):
As a physician who has observed many adverse reactions to medications, I would not define my experience as simple dysgeusia. It was by all accounts an Unanticipated Adverse Device Effects (UADE). With the severe and overwhelming taste resulting in nausea, abdominal discomfort, burning in the chest with congestion lasting for several hours, I would report this as an adverse reaction to therapy if any of my own patients had experienced this sort of reaction after I prescribed a therapy for them. I am aware that not all patients even notice the taste, and even fewer have such adverse physical complaints. It brings to a head the entire issue of BPA/Phthalates in dialysis equipment. I will spend more time on this issue over the course of my training. However, in preparation for this, I would recommend reading a few quick links on the adverse effects of BPA (here, here and here)
So, in summary, I am quite excited about feeling somewhat like a real person again with NxStage. Aside from the issues above, I will adapt my own habits to minimize any adverse effects and stay on the NxStage until perhaps someone else invents a better mousetrap. I look forward to gaining my independence that has been sorely tested in the last two years of incenter care. NxStage is a step foreword, but I believe that there are several issues that need to be addressed to improve it more.