Friday, January 25, 2013 | By arlene | No Comments


Hi Arlene!

I wanted to thank you again for helping us with Phillip’s dialysis care at Davita, in Clarkston Michigan. I wanted to share with your readers our story, as well. Phillip, my husband has been on dialysis for 5 years and is very vigilant on trying to maintain his health while suffering end stage renal failure. Phillip’s story began in late 1999 when he was in full renal failure after being put on medicine for gout. This medicine created protein kidney stones that blocked his urethra and cut off the blood flow to his kidneys. Going on dialysis was definitely scary for us but after he had been placed on dialysis he had improved and started to feel better. He soon suffered a heart attack and had to have emergency Triple bypass surgery.

While in the hospital we had been informed that he has been transferred from his original dialysis facility to Davita Dialysis in Clarkston, Michigan in which he was to report after his release from the hospital. After going there, he had quickly made friends and felt comfortable there. This helped tremendously with him emotionally as he has been placed on disability due to the kidney failure and could no longer work. At 48 years of age, this was a huge blow as he felt he could no longer “take care of his family”.

However, in the past 3 years, we felt we were fighting for good care at his dialysis center, as well as patient dignity. His Facility administrator appeared to be insensitive to patient needs, had cut back on supplies to save money (patients could overhear conversations of the staff’s frustrations) and appeared standoffish and didn’t really try to associate with the patients. She questioned patients who had become friends (if they rode together, or went out to lunch together, or whatever, she would question it) nor were they to be “friends” with the staff. Supplies were dwindling and it was evident that the facility atmosphere had become strained. On many occasions, he would speak to his doctor and found that only created more friction between himself and the facility administrator.

The latest conflict had been when I walked into the facility to pick Phil up and found him sitting in approximately 2? of water. I asked where the water was coming from and why was he left to sit in it while hooked up to electricity. The tech looked for the source but could not seem to find the cause and then laughed and gestured at how she could be electrocuted while standing in the water, really?

That was when I decided that I needed help. I love face book and found Dialysis Advocates on the web. I filled out the patient contact form and waited for a response…not sure if I would get one but I felt that I needed to try. In the meantime, I had requested a meeting with his Facility administrator. She took me to the conference room and I just pretty much asked her every question that I could regarding my husband’s care. Just that week she had changed his dialysis treatment days and time of treatment, in which we felt was in retaliation to him missing treatments due to his IBS/anxiety and Neuropathy problems that he suffered…she had previously used the excuse for the change as transportation problems, but this was not true, in fact if anything it had created a transportation problem as I work in the afternoons and since we only have one car I had to find a way to get him home, or I had to be late for work so that I could pick him up from treatment. How long would my employer put up with that??

Luckily we have a friend who stepped in and would pick him up after his treatments so I could go to work on time. Some of the concerns I had asked her about were: did she have any medical training? She had none nor had she even been a tech, the next question was how would she know if these people were doing their job correctly…would she know if somebody was taking shortcuts during processes? She just told me that she had knowledge of all aspects of dialysis. I asked her if she was aware that my husband had been left to sit in standing water during a recent treatment…the tubing from his arm to the dialyser machine as well as the electrical line was in the water, and she had not…yet her response to me was that his machine was connected to a “special plug” behind his machine that would detect any problem, really? No surge protector is going to protect anybody from electrocution and her answer was unacceptable to me. I asked her about why incorrect supplies had been used on him and needles put in him backward…she didn’t have an answer.

I asked her about the staph infection that my husband had recently and if it could be related to the other alleged staph infections that patients and suffered recently the same week my husband had his. I was told that there had been talk of short cuts taken during reuse and this could have been the cause. In a recent incident, while my husband had been in the hospital, his dialyzer had been used on another patient, why? Aren’t they supposed to be read by 2 technicians before being attached to the machine for the intended patient? I told her that I wanted my husband on a single use dialyser from here on out. She later told me that Phil’s treatment may have to be extended if his counts did not reflect him receiving adequate dialysis. That was disconcerting to me as I know that my husband’s treatments already were 4 1/2 hours long and this was only his on time…this didn’t include the time needed to be hooked up, unhooked, and then for his sites to stop bleeding.

That following weekend, we had received a call from Dialysis Advocates. They spoke to us at length and told us to not to have any further meetings without an advocate, as patients have been known to be retaliated against or discharged altogether. After many phone conversations and acquiring the needed information for Arlene to adequately represent us. We made plans of meeting with Davita and Dialysis Advocates via a phone conference. Davita refused having phone conference with them and said that Arlene of Dialysis Advocates had to be there in person with her driver’s license for them to view. We signed each and every form Davita wanted to release them of any harm to speak with Arlene about Phil’s health and dialysis care. Yet, they put up another roadblock for us to be represented. Arlene assured us that they would not abandon us and that would fly to Michigan to represent us.

They met with us, the night prior to the meeting with Davita. We spoke of our concerns and shared our paperwork/doctors reports/wanted results to come of this meeting. The next day, when we arrived at Davita, we were met by an armed security guard. Phillip was upset that Davita had done this and felt embarrassed. We were escorted into the conference room by the guard, but only Arlene, Phil and I were allowed in. The Facility administrator, the Regional Facility administrator, the Medical director (Phillip’s Nephrologists), the head nurse, and the social worker were present during the meeting with Phillip, Arlene and I. The facility administrator read off each of the grievances one at a time. It was found that Phil was retaliated against regarding his change of time and days of treatment as we produced documentation that Phillip was under a Gastroenterlogist care and did indeed have colitis, which actually is worse than IBS and is complicated by anxiety and stress. Arlene also stated that studies have shown that patients also suffer from PTSD while on dialysis and provided documentation to the Nephrologists…and she felt that from her experience Phillip could also suffer from it too. The dialyser issue had been addressed and that it was agreed upon that he would continue with correct single use dialyzers for his size and dialysis needs. It was also asked of whether all patients had this option as we were never prior given a choice. The doctor said yes, that all patients have a choice.

The incident with the water on the floor while he received his treatment had been addressed and the facility had made steps to have the problem corrected by having the run off sinks behind the patient chairs. The sinks are now equipped with screens where if the staff dumps bicarbonate into the sink then the strainer would catch the debris before clogging the drain, leaving the run off free to go down in the drain. She did make the mistake of sounding flippant as to the electrocution risk and the regional director and the Nephrologists sat stunned. I made it clear that I would not tolerate any other incidents involving water standing on the floor under him or his machine. It was unacceptable to me to find him with his lines lying in the water…they understood my concerns and assured us that it would not happen again.

Many concerns were addressed and resolved but the most important to Phil was that he made his voice heard. He wanted the social worker and the facility administrator to treat him with dignity and respect…they didn’t realize that when they spoke to the patients regarding sensitive issues, while they were receiving treatment often patients felt trapped and being treated without dignity. He made it aware that when he observed them waking patients to speak to them, the patients would be startled or frustrated, as he has felt in the past, as well. The social worker was the first to speak up and say that in all of the 30 years of being a social worker, with the last 2 years involving dialysis, she had no idea that she made the patients feel uncomfortable and genuinely apologized to Phil. The facility administrator said that it was never her intention to make him or anybody else feel uncomfortable. It had been agreed that all matters of a sensitive nature will be addressed before the patients are hooked up to dialysis or after they are removed from dialysis.

This was a huge relief for Phillip and I am sure that other patients will welcome this too. Another matter Dialysis Advocates brought up was that we were being billed from Davita Nephrologists even after having dual insurances…BCBS and Medicare…which our monthly bill is $43,000 on average. She wanted to know why and voiced that we were concerned that Phillip would be discharged for non-payment on our end. We have several medical bills that we pay and my husband is on 21 different prescriptions, NOT including the medicine they give him at dialysis. Contrary to popular belief…insurances DO NOT cover everything. They said for us to bring in our Davita bills and they would take a look to see why this was occurring…the social worker said that she would make sure that she took care of this for us and the Nephrologists and the regional administrator were clear that they would not discharge Phil for that reason. They said that they have never discharged a patient in the history of this faculty and it was not their intention to do this today. We were relieved as Phillip is not a problem patient; he just wants quality care for the treatment we pay for. We pay hundreds of dollars in insurance premiums for medical care and we feel he should receive good, safe, and quality care without retaliation, intimidation, or harassment.

Last but not least, Arlene was able to prove that Phillip’s dialysis treatment days and time was changed due to retaliation and intimidation. His treatment days will be moved back once an opening becomes available. Everybody agreed that Phil’s care was the utmost concern and Arlene made sure that we were satisfied before we left the meeting. She met with Phil’s Nephrologists privately and felt he was being left in good hands and with a new understanding of what was going on in the facility…Many eyes were opened that day and we feel our relationship with the Davita staff will improve. I am confident our relationship with the social worker is going to improve as she has reached out to Phil and other patients since the meeting in a positive manner. The facility administrator has made a better effort to be on the floor to help the staff and learn from the patients. This Wednesday she and her family will be bringing in Thanksgiving dinner for all the patients. I do think that the meeting was good for all intended and a new knowledge and understanding of the patients needs will be actively addressed in the future.

Thank you to Bill and Arlene Mullin-Tinker of Dialysis Advocates. We have been truly blessed to have you in our lives and look forward to keeping you informed on the progress that has been made at our facility.


Thank you and sincerely yours,

Lori and Phillip Gallero

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