Dialysis patient takes control of her own care

By Anna Bennett

Hi, I’m Anna your guest blogger. That guy in the picture on the right is (hopefully) spending some quality time with Cairny and resting after his action packed week in DC.

So, the title of this post is actually the headline from a piece that was written about me in a local NY newspaper. Last year, when I started in center dialysis, I was told that because I live alone, I was ineligible for NxStage.  Well, thanks to the internet (IHD) I "met" Bill, read parts of his story and realized that I could do home hemo alone.  Armed with this knowledge, my journey began.  Bill has been an excellent resource for me and when I decided to be more active on the advocacy side of CKD5, I sent him an e-mail saying that my unit wanted me to do press, he said go for it. So I did. 

My unit hired a PR Agency in LA to coordinate everything, I first interviewed with a writer, who then wrote a press release, which was then distributed by the PR agency to various local papers in conjunction with World Kidney Day. A publicist was liaison between me & the reporter; we set a date for an interview in my apartment, so that she could interview me and watch me put myself on. We spent over two hours together. I showed her my supplies, I explained my set up, and then I sat down in my chair and cannulated myself. (I had primed the machine and laid out my "cannulation station" before she arrived)

The story is mostly accurate, a bit simplified. I cringe at the girls-gone-wild reference (but I can’t deny my… ahem “outgoing” personality…) the reporter told me that she had originally written “girl’s weekend” and her editor changed the reference. Also, there is a line "but a complicated series of procedures makes it nearly impossible to do alone."  My whole point was that it is completely possible to dialyze alone!  (I think that watching me go through my cannulation process was a bit intimidating for the reporter - seeing dialysis up close for the first time can be a bit much)

I wish that the article were more detailed on the clinical side, I used liters as units of measure (the paper converted them to cups?!?) and I described my a/v Fistula as a garden hose, I also wish that the word “fistula” had made it into the article. I was hoping that the article would be more about home dialysis – it was written more as an inspirational POV. But if the newspaper gets people’s attention, they can surf out the blogs/websites and read the technical details, then maybe more people affected by CKD5 will be exposed to and encouraged to try home hemo.

All in all this was a positive experience. I am still in contact with Kate McNeil, the reporter from the Riverdale Press, and I even agreed to contact her if/when I get the transplant call.

Here is a link to the story. (It was run on the front page of The Riverdale Press, a metro NYC weekly newspaper)

Comments

[Nancy Kramer]

As a close friend of Anna Bennett's I have seen her take control of her own life through home dialysis.

I will not go into how strong and brave she is --and that is certainly true of her and most all who are suffering through kidney disease and the struggles with dialysis.

What I do hope is that Anna's openess through the sharing of her experience will allow others to see that it can be done and begin to take their lives back into their own hands.

From my observation of Anna throughout the training for home dialysis and now doing it successfully at home ... one must scream long and hard to advocate for oneself and not give up the fight if you do decide to do this. It may not be for everyone--but many many more could be home dialyzing and feeling much more in charge of their lives.

[Bill Peckham]

It took me about 10 years to get to the point that Anna's at after a year. It is a steep learning curve, add smart and quick study to Anna's profile.

Thanks for blogging Anna.

See - it's not just me. There would be a lot more dialyzors like Anna (and me) if more frequent dialysis was universally available and where it is available, not withheld from those who are single.

[Mel]

Hi there Anna

Congrats on your guest blog and the fantastic piece in the newspaper. You are made of tough stuff doing your needles in front of a reporter(she was brave too!) Although I have done a few interviews down here in Aussieland I haven't done the needling in front of media as I don't feel that confident in front of them and would probably stuff up (hmmm that may not be a bad thing), except someone might have to scrape the reporter off the floor!
Cheers
Mel

[Anna Bennett]

Thanks Mel. And you wrote a great article by the way, Longer and better lives for patients … and their centers: A strategy for building a home hemodialysis program. I'm not just a guest blogger, I'm a reader too!

(update in light of Bill's comment - I didn't know that there were two Mels... (did I mention that I am new to this?) So, thanks for the comment Mel, and thanks for the article Mel H.)

I have to say that cannulating myself in front of the reporter was nothing like the first time I self cannulated at my unit. I must have watched Bill's video a hundred times, and I went over and over the steps in my head the day before I did it for the first time. It has been over six months and now, I almost do it on auto pilot.

[Bill Peckham]

Actually there are two Mels. Mel in Oz is a dialyzor and she is or will be published soon too - a guide to dialyzor travel - Mel when is it coming out? I think I have a few quotes in there.

Mel H. who wrote the Hemodialysis International article is a Yank and a caregiver to his better half.

[Mel]

Yep Bill
Apparently it should be out in the next month and printed online on the Kidney Health Australia site as well as in hard copy. Your copy will be winging its way to you as soon as I get some in my hot little hand. It has been such a SLOW process getting it published I almost gave up hope.Your intro takes pride of place in the book.Can't wait!
Cheers
Mel from Oz

[Bill Peckham]

That's great Mel I'll be sure to blog about it once it's up.