Hello and thank you for visitng RenalLife.co.uk.
My name is Joe Brown, a married father of two living in Lingwood, just outside Norwich, UK.
I’m the one on the left.
I work for the BBC as a Technical Operator, a job which includes directing the Look East television news bulletins from the studios in Norwich, working the sound desk for live broadcasts and overseeing the transfer of broadcast material from across the country, and sometimes further afield.
I am also a sufferer of Chronic Kidney Disease.
This site is where you’ll find my blog all about my life as a haemodialysis patient, as well as lots of useful information about what its like to live with kidney disease. You can find my latest blog entries by clicking on one of the ‘Recent Posts’ on the right hand menu or visiting the Posts page using the link above. If this is your first visit, then please take a quick look at the About Me page, which contains a brief background of my health issues, and you can also enter your email address to get each new blog entry delivered direct to your inbox.
I hope you find the site helpful and if you have any questions, queries or views you’d like to express, then please comment or get in touch.
Thanks for visiting,
Joe
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lovely site joe were always thinking about you keep well lo9ve sandra john cahrlotte & annette xx
Hi Joe, my husband is 52 yrs old has ESRF since 2008, and transitioned from in center hemo-dialysis home (Nexstage) Hemo-dialysis 6 days per week in January of last yr. We were the first couple trained, so the nurses were learning the machine with is. The training was less then optimal, esp when the Nexstage Nurse representative left after a week of training with us, and the new Home Hemo-Dialysis coordinators. Anytime we had questions, the coordinators didn’t know the answers so we were all pouring through manuals or calling the support number. The support staff at Nexstage are amazing though and were able to help us trouble shoot.
So, the positives have outweighed the negatives. Much better clearance of toxins, less fatigue, able to eat a variety of foods, go out to dinner more, drink a little more fluid. The flexibility to dialysize around your schedule. He does feel better most days, but it’s a balance.
The negatives are: the amount of storage space needed for the supplies, the screw-ups of the wrong supplies being delivered, which has gotten better
Your home becomes a mini clinical center, the machine is no where near as small as you might think, uses massive amounts of electricity, you will have a dialysis recliner in your home, and your home is no longer your sanctuary. Your home is also a lab, you will be drawing your own vials, spinning them in a centrifuge, packaging and posting them to a real lab.
My husband learned to cannulate himself in center before training and “buttonholes” were created, to cannulate the same site each time, so less painful.
I think my husband (who has a medical background) and myself (a nurse) have a good grasp on the process, would recommend it, but it takes a commitment of your partner. We were told it would be about 3 hours daily, but it’s longer., closer to 4 1/2. The set-up time is considerable, even almost 1 yr later, you can’t rush through the “snapping and tapping”…if you don;t know those terms, you will! To make a batch of dialysate takes about 15hrs, so your electricity is always running, 24hrs a day for the machine. Oh, and I hope you don’t mind tubes snaking about your home. We gave up a bathroom for access to the sink connections. We live in an apartment and needed to get the complex to approve electrical wiring and plumbing changes. We just recently discovered that a colored plastic rain poncho makes a nifty cover for the machine, as Nexstage doesn’t come with one. Back to “snapping and tapping” the tubing and filter. We wear mittens, have used a plastic spoon, spatula, a lint roller with the tear off sheets to protect our hands, We have broken them all, so unless you want lots of calluses and painful palms, I hope you have a bargain store near you and stock up on plastic cooking utensils. (These are other tricks we learned, that they don’t teach you.) So, mittens preferably with a rubber grip for snapping the tubing, utensils for tapping.
We have not traveled with the machine. I know they say you can, but my husband just never feels well enough to go out for more then a 3 hour window. Plus, needing to have your bags of solution shipped ahead to we you are going if by air or rail, or ship seems like a hassle. Then there’s the what ifs? What if the supplies haven’t arrived. What if the place we’re staying loses power? At least at home if we lose power the dialysis centers open up a space for him to go get treatment. Loading all the equipment into a car, well, there’d be little room for luggage, which is why in the DVD, they show people traveling with an RV, they just make it seem like they are “Happy little campers.” I don’t care how big your car is, it’s not big enough to carry the supplies for a week away, let alone longer.
So, Joe, happy to answer any questions you might have. Obviously the answer is a transplant, not to be tethered to a machine. They will show you many DVD’s of seemingly happy carefree clients, in RV’s, by swimming pools, looking like life is back to the way it was before kidney failure. It’s not. It’s a sales pitch. I find my husband to be more depressed as everyday he is faced with the machine, it’s a reminder constantly. In center dialysis, once he was done he wasn’t the patient anymore. Granted he felt like crap, wiped out, tired for almost 16 hours, but at least he got some days off. (My opinion, not his.) Now we go to Boston once a month to see his nephrologist, before he saw him weekly in center.
My phone number is 781-762-1585, we are in the Boston, MA area. I’m not sure of the country code for the US. Also there’s email, or posting through here. My 12 and 13 yr old step-daughters just came to live with us from Africa, so not only are they new here, the Dad they hadn’t seen since 2008 when he could no longer travel, is sick. They seem to be coping well, but I think they are a bit overwhelmed at times.
Here’s a link to Nexstage: http://www.nxstage.com/homehemodialysis
Take care, in my thoughts and prayers, I hope you get a transplant soon.
Mary Lou