Anybody been done this way

[74041ham]

I started in center dialysis in August. In October I had a PD installed and was counting the treatment days I had to suffer before I started pd training which I was supposed to start NOV.9. On Nov 8, my belly started hurting real bad and yada yada yada two surgeries and two weeks in the hospital and I was at square one again. I tried going back in center and I just can't do it. I get IDH real bad 2-3 a session and can't tolerate more than two hours and that leaves me literally useless anywhere from 16-24 hours. It got so bad that I quite going 12/16/2015.

I continued to se my nephro in his office and we talked about my intolerance and the problems I was having and how much I would like to do home hemo, how much i need it in dozens of ways. I agreed to only go back in-center if I was on a wait list to start training asap. anyways, I get to the center and they tell me the medical director there requires me to be 3 months compliant in center before she will clear me for HHD. I am upset because this is impossible, I have a small child and family obligations that will compliance for three months almost impossible and plus the side effects of their UF or whatever is literally killing me, I am real sick after treatments, I can't do that for three months. I can't live for three months like a zombie.

Ive tried to make an appointment to see the medical director but i keep getting the run around. I have called my doctor and told the nurse whats going on, and I called my facility administrator and told her my reasons for not comming back after my first restart treatment last thursday. She said she would call my doctor and see about changing perscriptions but she hasn't called me back and when I try to call her she is never there.

I resent being treated like a bad child or something, but HHD is the optimal modality for me and I can't afford to be a zombie for three months.

[srbader]

That is not fun. Can you have 3 mos in center cumalitive? I found I had to stand up hard for myself with almost every nephro...medical center directors too.

[74041ham]

That's another issue, I had to wring the three months thing out of them, at first they were just like you have to be "compliant". So naturally my next question was "how long"? Then of course my next question was "what are the parameters of compliance"... still haven't gotten an answer.

My beef is that I have clinical depression that was before i started dialysis pretty well controlled and I have CHF and left ventricular hypertrophy.. Home hemodialysis shows to greatly improve depression, blood pressure control, quality of life, IDH relief and preserve kidney function, why in the world would anyone settle for something that is actually hurting them more than it is helping them? I mean some people can tolerate hi flux ultrafiltration I am not one of those folks and there isn't anything you can promise me to do three months three times a week, I most certainly wouldn't be A. well enough to begin training B. live enough to begin training or C. Dead .

I want to at least to be able to discuss this with this medical director (which she was my nephrologist after my previous nephro fired me while I was dialyzing in the hospital, and I have never laid eyes on this woman even though she was techincally my doctor for the month of november and december last year. apparently she is the medical director of the home training facility, its kinda a small world here.

[KelseyAtDaVita]

Hi 74041ham, I'm sorry to hear about your frustrating experience. A helpful place to reach out may be the DaVita Guest Services team. You can reach them directly at 1-800-400-8331 or call them at guestservices@davita.com. They'll be able to assist you and answer questions related to your specific center and concerns. Thank you!

Your community manager,
Kelsey

[what happened]

My husband is on home dialysis and has been for the last 4 years. When this started he didn't know what was going on and neither did I. Rushed to hospital and started on dialysis there. Then to their in-center location and conflicting reports from 3 different doctors. Finally I went on-line to find out what I could. Learned about home dialysis at the Davita site and called them to get info. Called husband's doctor and told he could do it but he needed to stay in-center treatment for those 3 months. Called Davita back - for home dialysis- and we got him into training within a month and in-home dialysis within another month. I am doing his treatments and we have had many things happen but, prefer this to in-center treatments. We always say calling Davita and getting their help saved us both. I was almost crying every day with the frustration from all the mis-information we had gotten. THANK YOU JEAN at Fox River Dialysis Davita in Green Bay, WI.

[stumpr54]

Hello what happened,

I continue to be stunned by the alarmingly high number of dialysis patients and care givers with experiences that match yours. I have gained an understanding that quite frequently loss of kidney function is not detected during routine blood work, e.g. renal panel and/or that kidney function can decline precipitously in such a short time that the only recourse is ER dialysis. This regrettably happened to my mother-in-law in the early 70's after a lifetime of bladder infections were not linked to her polycystic kidney disease.

As a PKD sufferer, I was diagnosed through a standard renal panel blood screening as part of an annual physical back in 2002. My astute PCP noted a decline in kidney function, a 1.7 creatinine vs. high limit of 1.5. This led to a referral to a nephrologist who ordered a CT scan that revealed the presence of cysts on my kidneys and liver consistent with PKD. During the following 10 years my care was managed by the nephrologist who monitored the steady decline in kidney function and managed my high blood pressure through medication.

By 2011, I was on 3 BP meds and in Stage IV kidney failure. I was suffering no physical or mental symptoms of kidney failure, ESRD even when I began training for home hemodialysis in July 2012. By that point I had been listed for transplant since Jan 2011 and had a fistula placed since October 2011. I avoided emergency medicine, a chest catheter and probably most importantly, did not miss a single day of work, supporting the nearly 5 weeks of HHD training with 1/4 days of vacation so I could train in the afternoons.

My spouse/care partner have been conducting a mix of short daily and nocturnal HHD treatments for over 3-1/2 years and other than some in-center visits when out of town on business, know no other means of dialysis. I have stayed ahead of access issues by developing 9 different buttonhole sites (5 in use) on my three vessel fistula and keeping all of it in working order with regular fistulograms.

I've been BP med free since August 2015, the first time since 1993. I've lost about 15 lbs since starting HHD, with a dry weight around 150 (I'm 5'-9"). I did work full time through mid December 2015 when my employer eliminated my position. I'm faced with the alternatives of permanent disability, part time or full time employment, each of which has its own benefits/advantages and disadvantages.

We are empowered to be successful at HHD and the results of the past 3-1/2 years reflect that.

[KelseyAtDaVita]

My husband is on home dialysis and has been for the last 4 years. When this started he didn't know what was going on and neither did I. Rushed to hospital and started on dialysis there. Then to their in-center location and conflicting reports from 3 different doctors. Finally I went on-line to find out what I could. Learned about home dialysis at the Davita site and called them to get info. Called husband's doctor and told he could do it but he needed to stay in-center treatment for those 3 months. Called Davita back - for home dialysis- and we got him into training within a month and in-home dialysis within another month. I am doing his treatments and we have had many things happen but, prefer this to in-center treatments. We always say calling Davita and getting their help saved us both. I was almost crying every day with the frustration from all the mis-information we had gotten. THANK YOU JEAN at Fox River Dialysis Davita in Green Bay, WI.

Hi there! Thank you for sharing your story - I'm so happy to hear that home dialysis has been a successful option for you and your husband! The myDaVita forums are a great place to connect with others who have gone through the same thing as you. We also know there are so many questions around kidney disease, dialysis and diet and hope that you find our additional resources useful! Please let me know if you have any questions and I wish both you and your husband the best!

Your community manager,
Kelsey