Hello from bob o'brien

Hi Folks

I’m beat, This last year has been a pain in ass. I see the end ahead , more than anything my mother will go into a nursing home by the first of the year. And both my mother and the whole family do not want anything , no feeding tube , no dialysis etc. we have all the paper work done. My wife is ready to go back to work after her ordeal. We will just have to see a cancer doctor on 10/20/06 to find what tx she will have to do. Our hope and prayers are that it will just be a drug over the next fiveyears and check ups.

I just want a ribbon or something to let people know that life moves on even if your on dialysis. I just want to manger my health like I have over the years with just me and my doctor.

I’ve started my book (once more ) and I hope to have it done by the time I hit 60 that gives 10 years.
bobeleanor :wink:

Bobeleanor glad to hear things are looking up. You mentioned that you would like to manage your health with just you and your doctor. That brought up and interesting thought. If a nephrologist had a practice which consisted of 2 rooms, I don’t know why they couldn’t write you a prescription for the machine like a NxStage. If they had a nurse working for them qualified to train, I don’t know why she couldn’t do the training in the second room. I don’t know why if a dietitian or SW were warranted, (which by the way in 8 years we have only said Hi to ours) the nephrologist couldn’t make that arrangement with someone. Then I don’t know why he couldn’t bill for the dialysis treatment plus his nephrology fee. If this could be worked out there wouldn’t be a dialysis patient anywhere prohibited from home dialysis just because there wasn’t a program. Maybe Dori or Beth can jump in here and tell me why this idea is so far-fetched.

Hey Marty

Thanks , That what I have been looking into since this mess started. And I can’t find any answer as to why this dialysis lives in the stone age.

I have no idea as to what this page is about or other groups that “our buddys” to better tx or whatever. This page has links to congress for people to write or email the folks in DC for what? Those of us that are home are home. As for me just I want to have a one on one with my doctor. The way it has been all 50 yrs of life. Now I’m told “play by the company rules, not law, but rules or we the company will end your life”

I don’t have anything to lose. So I’m going back to medical people I saw a long time ago and have not talked with in years. Maybe they can help??
I’m not counting on Beth or Dori. They are both very good people, but the machine has everyone, and we are left to fight for ourselves.
bobeleanor :wink:

Bob, you make it sound like a mid-life crisis! At the same time seems your rejuvenating yourself! …

I mean c’mon…I have been on dialysis for quite a long time and yes its been a rough road, but who doesn’t have a rough road? :roll:

Living life is a challenge for all of us regardless whether your on dialysis or not! On the other hand, hang tuff and you will do just fine. Sometime in our later lives we all get to meet the end of the road, and I know its quite hard to deal with and even think about it before it ever happens but doesn’t that contirbute to depression by worrying about the past?

Be sure to get that book done! :slight_smile:

bobeleanor :wink:

Gus, You did miss the point Bobeleanor is not complaining about dialysis. He is complaining about the way the home program is set up and the fact that his nephrologist can’t make the decisions. I am stating a fact here not trying to make a judgement if it is right or wrong. In our area there is 1 home hemo program. Run by a corporation. It would be easy for patients to travel 50 miles or so to get into the program. But they don’t because “someone” insists they come back twice a month for clinic visits, then come back if they need iron, etc. This is not the nephrologist making these decisions. The nephrologist who covers the home program is in full agreement 1 trip a month would be enough. He told me so. When you live close to your center, you don’t have the same outlook that patients do who are trying to get into a program and have a distance to travel to do so. I believe if you read one of LBJ’s post he also stated it wasn’t dialysis he hated it was the centers or something to that affect. This board is to make awareness to home dialysis and this is what were doing. It is great dialysis and someday we all hope it will be available to everyone but in order for that to happen more centers are going to have to be modeled after the Rubin where they take into consideration such things as the drive a patient makes, schedule changes because of other illnesses in the family. Changed clinic visits because an emergency came up. You obviously have never been caught between your nephrologist telling you 1 thing was OK; then a nurse telling you it wasn’t. We could have a nephrologist 45 mins. from our home but ours
home nephrologist is 2hrs. away. The nephrologist 45 mins from our home was willing to keep dad as a patient. The nurse in charge of the center told him the center wouldn’t back us there because dad was going on home hemo. It’s these crazy things that Bobeleanor is referring to. It is these things that need to come out in the open so others can be aware of the road blocks patients run into just trying to get into the few home programs there are.

Marty, I didn’t miss the point… challenges is what your facing. I had my share of challenges and right from when I was a kid on dialysis no one made the decisions for me, then once I was a teenager I was all on my own going to Dr. appointments without anyone coming along with me. I had choices to make and have left previous Drs…to meet new ones. I can tell you this, no one home program is perfect, nowhere! We can only hope that more will open around the country and that’s what my center is doing now…their openiong 3 new centers up in the eastern states…accessibility is what matters now and that will take time, not overnite…just keep your hopes high and pray to GOD for goodness for all…

Hopefully down the road home dialysis will become more of an option. More patients will here the good stories and more patients will want the to go the home route. Once the popularity of home dialysis has picked up, I think some of the other issues will get addressed. Especially when the home patient count starts getting low in the home programs available.

Hey Gus, Thanks for the news Wellbound is going to hit some Eastern States. I think your with Wellbound aren’t you. Nothing like having programs start up in the neighborhood to get the locals here off their duff and start offering programs before they get left out. Any idea which states they are expanding into?

Hi Marty,

Here’s WellBound’s most recent press release:

[b] WellBound Opens New Self-Care Dialysis Center of Excellence in Lafayette, Indiana

First WellBound Center to Open Outside of California[/b]

MOUNTAIN VIEW, CA, October 4, 2006 – WellBound, the first company focused exclusively on supporting the full spectrum of self-care dialysis therapies, today announced the official opening of its first center outside the state of California. Located in Lafayette, Indiana, this “Center of Excellence” will support WellBound’s partner nephrologists at the Arnett Clinic, as well as nephrologists from surrounding communities, in providing patients with kidney disease education along with innovative self-care dialysis therapies. The opening of this center, the fourth new WellBound program since the beginning of 2006, marks the initial step in the company’s nationwide expansion.

“Having already established WellBound as a leading provider of self-care dialysis therapies and services in the state of California, we are now working to strategically expand our presence to other key markets within the U.S.,” said Marc Branson, WellBound’s chief executive officer. “The opening of this new center in Lafayette, Indiana represents the first of what we expect to be many new program openings throughout the country. By aggressively adding new centers, we are continuing to grow WellBound as one of the country’s largest daily home hemodialysis programs.”

There is an expanding body of scientific evidence that demonstrates that patients who receive more frequent and longer dialysis achieve superior clinical outcomes and enhanced quality of life as compared to those that do not. WellBound’s patient-friendly centers ensure optimal patient care by combining a focus on wellness and education with innovative self-care therapies that provide more frequent dialysis.

“A critical component of the WellBound Center of Excellence model is our prioritization of patient education programs in the areas of dialysis treatment options and wellness,” stated Mr. Branson. “These education programs provide our patients the information to make the best treatment choices for themselves and empower them to maintain healthy and normal lifestyles.”

As part of its operational model, WellBound provides its referring physicians with unrivaled clinical support. These comprehensive support services are provided by WellBound’s dedicated team of certified medical professionals and include:

• Early education programs addressing kidney transplantation, dialysis therapy options, and vascular access planning
• Patient wellness programs focused on high blood pressure, stress management, exercise, nutrition and diabetes care
• Training programs for all forms of self-care dialysis
• Clinical care coordination services delivered by Certified Nephrology Nurses
• 24/7 patient care telephone support

The Arnett Clinic’s Stephen Ash, M.D. will serve as medical director for WellBound of Lafayette. Dr. Ash is widely-recognized as a thought leader in the dialysis industry, and has played an important role in the evolution of home dialysis, including the development of devices used by peritoneal dialysis and home hemodialysis patients worldwide.

“This is a great day for chronic kidney disease patients in Lafayette and the surrounding communities as they now have access to state-of-the-art self-care dialysis treatment options and world-class education and wellness programs,” said Dr. Ash. “By offering local patients the ability to treat themselves through peritoneal dialysis and various forms of home hemodialysis, we are providing them the tools to improve their health and recapture the freedom, energy and overall well-being that is often lost when dealing with chronic kidney disease.”

About Self-Care Dialysis

The term self-care dialysis refers to those dialysis therapies which patients are able to self-administer outside the confines of hemodialysis centers, including peritoneal dialysis and all types of home hemodialysis. A growing collection of clinical research clearly demonstrates that the more frequent, more consistent dialysis associated with self-care provides patients with improved health outcomes such as improved mortality rates and reduced hospitalizations. Home dialysis also offers significant quality of life advantages including greater convenience, more flexible schedules, and fewer fluid and dietary restrictions.

About WellBound

Founded in 2003, WellBound is an affiliate of dialysis industry leader Satellite Healthcare. As the first company focused exclusively on the full continuum of self-care dialysis options, WellBound frees chronic kidney disease (CKD) patients from in-center dialysis treatment regimens by offering multiple, state-of-the-art “self-care” treatment options. The company’s unique expertise in personalized self-care training and patient wellness facilitates a higher quality of life and improved clinical outcomes for CKD patients, while enabling physicians to offer a new, superior level of care.

The company has established eight operational self-care dialysis facilities and is actively engaged in launching a network of WellBound “Centers of Excellence” designed to deliver the full spectrum of self-care dialysis options, including peritoneal dialysis and daily home hemodialysis. To learn more about WellBound, please visit http://www.wellbound.com or contact the company directly at 1.800.476.5450.

Hey Gus

Here is your next challenge, see to it that every center is a model center, that are open 24/7 that offers all types of dialysis. And helps people have faith in themsevles. To keep up the new machines and make them better.

I have my eyes set on the road ahead, my mind is focused.

bobeleanor :wink:

Good to see Wellbound is expanding. Ah, the day we see as many Wellbounds as we do Walmarts it will be a dialyzor heaven.

Ain’t that beautiful, hehehe… :wink:

Keep in mind that “WellBound” is affiliated with Satellite Dialysis, a non-profit organization! 8)

I think “WellBound” and NxStage Medical make a very nice team… :lol:

I had a thought today as I was watching The Today Show when I was getting ready to go to work. What if some of you guys doing home dialysis went to NYC and were in the audience with a sign about home dialysis – a blow up of the Home Dialysis Central postcard might be colorful enough to draw attention so maybe you’d get interviewed on camera and be able to tell people that you have kidney failure and obviously live a full life because you chose to do home dialysis. It’s a thought…

Hey guys, did you know there’s 2 other “WellBound” clinics in the planning for Texas and Chicago? They’re not completely built yet but are in the paper work/process… keep you hopes high! Watch out cuz here we come! 8)

P.S. Hey Beth, nice idea! I’m too far away from NY but am sure many home dialysis patients do live near there!! :smiley:

That sounds like a great idea. The next time we go to NYC I will let you know and I will do just that.