What Home Hemodialysis Patient Veena Wants to Tell Her CKD Community
Veena and her family successfully overcame their fear of chronic kidney disease and are managing her home hemodialysis with Tablo. They want to encourage others in the Indian community to talk about the disease more openly, and to know that they have options.
Veena, who is named after a musical instrument, has been musically inclined since she was young. And now, since starting dialysis at home on the Tablo® Hemodialysis System, she enjoys listening and singing to her music and spending time with her family. Veena and her family have a special purpose for sharing their story of kidney disease and dialysis: they hope to encourage others in the Indian community, and other cultures, to speak more openly about it and to know that home hemodialysis is an option.
Veena emigrated to the US from India more than 50 years ago, and she and her husband and four daughters live in New York. She has had Type 1 diabetes for 20 years, which her doctor says likely contributed to her chronic kidney disease (CKD). Her kidney disease journey started about two and a half years ago, when she was taken to the emergency room with what her family thought was pneumonia. She was having difficulty breathing, and they weren’t sure what was wrong. The ER doctors said it was because fluid and toxins were building up in her body as her kidneys weren’t working properly. Veena received emergency dialysis and was in the hospital for nine days. After she went home, fluid and toxins began to build up in her body again. Afterward, she was under the care of a nephrologist, who said she will need to go on dialysis as a permanent solution soon.
Veena was very hesitant and scared when she heard this news. Sangeeta, one of her daughters and her care partner along with another sister Nittu, says that she told her family, “This is not happening. I’m not doing it.”
Sangeeta says that they were able to prolong the need to start dialysis for about a year and a half. During that time, they saw her nephrologist about every six months, and tried managing her fluid levels with diuretics and blood pressure medication. But then in November 2022, while Veena was in the hospital again, her doctor said that she had end-stage kidney disease (ESKD; also known as end-stage renal disease, or ESRD).
“My mom was not ready whatsoever for dialysis,” says Sangeeta. “She had heard that treatment takes five or more hours a day at a center, and is very disruptive to a patient’s lifestyle. Also, she didn’t want a caregiver to have to take off time from their schedule to drive her to and from the clinic for treatments. We had also heard that many people that were going to the clinic were getting COVID and bringing it back home. We definitely wanted to avoid that.”
They needed to make a decision about what modality she would use. Veena’s nephrologist and care team told them about an option that would keep them out of the dialysis center. He said that she and her family were good candidates for going directly home from the hospital with the Tablo system, and asked if they would be open to it. They would need to go through a brief two-week training with a nurse, after which they would be able to run her home hemodialysis treatments themselves, on a schedule that works for them.
“After the team showed us what Tablo is all about, we said sure, we can do this,” says Sangeeta. “The Tablo system looked like a small copy machine, and the touchscreen interface was very intuitive. Luckily, mom’s care team gave us the opportunity to adopt our little ‘Tabby,’ the name we gave our machine, and we just went from there. And my mom is much better for it.”
“Luckily, mom’s care team gave us the opportunity to adopt our little ‘Tabby,’ the name we gave our machine, and we just went from there.”
From Hospital to Home Hemodialysis in a Weekend
Their initial conversation about Tablo was on Thursday, December 1, 2022. The next day, the Outset Medical team and Veena’s care team visited her home to make sure that the plumbing was all ready to go (Tablo only requires an electrical outlet and tap water). That following Monday, they had a Tablo machine delivered and set up in Veena’s upstairs bedroom.
“We got everything situated in less than a week, and my mother didn’t miss a treatment, which was amazing,” says Sangeeta. She, Nittu and Veena did a two-week training with her nursing team at their home, where they learned all about Tablo and safely accessing Veena’s vascular access, a chest catheter.
“I was scared at first realizing that we would be filtering my mom’s blood,” she continues. “But the nurses and the trainings made us feel confident to know what to do during treatment or if an alarm went off. And, Tablo is connected to our care team online, and they can remotely monitor treatments. I realized I just needed to take a deep breath and say okay, I understand what I need to do, the machine guides me through each step. I can do this.”
Veena does two hour and 15-minute treatments, two days in a row, followed by one day off, then the cycle repeats.* Sangeeta says that she and Nittu handle her mother’s home hemodialysis treatments very routinely now, doing the same thing every time.
“We put out all the supplies the night before. The next morning after breakfast we set up and run the dialysis, then it takes only a few minutes to take down the machine. It’s very intuitive and easy to do. We appreciate all the checks and balances that are built in to Tablo.”
Prior to going home on Tablo, Veena wasn’t feeling well, and would sleep through most of the day. “All of that has changed,” says Sangeeta. “She’s now able to have a conversation, go downstairs in our two-story home, spend time on her iPad, and play her music and cards that she so enjoys.”
After treatment, Veena and her daughters have the rest of the day to do what they like. “I take my meetings, I’m a cancer researcher and work from home most of the time, and my mom is able to do whatever she needs to do,” says Sangeeta. “We are so grateful that Tablo was available when we needed it. We can’t express how great the machine is and what it’s done for our family, in keeping my mom healthy and safe during a precarious time.”
“We can’t express how great the machine is and what it’s done for our family, in keeping my mom healthy and safe during a precarious time.”
Sangeeta says that Veena is doing much better than she was five months ago. “She’s gained weight, is feeling better and her mobility has increased. This is all because of home hemodialysis and Tablo.”
A Special Message for the Indian Community
Importantly for Veena and her family, by sharing their story they hope to help encourage others in the Indian community and other cultures to speak more openly about CKD, and understand that home hemodialysis is there for them as an empowering option.
“I think chronic kidney disease is one of those diseases that is swept under the rug, so to speak, in the Indian community,” says Sangeeta. “It’s pretty much a taboo topic. People will talk openly about a cold or the flu, or if they’re diabetic. But I’ve never heard anyone in the Indian community say that they have chronic kidney disease, and what they’re doing about it.”
“I would tell others in our community that it is a manageable disease, don’t be scared of it,” she continues. “My advice is to put your faith into it and feel like you can overcome it. Also, let your doctors know your concerns, and see where you can turn that around. For example, we told my mom’s doctors that we didn’t want to go to a center, and they offered Tablo home hemodialysis to us.”
Veena and her family feel strongly that if more people in the Indian and the South Asian community knew that something like Tablo and home hemodialysis was available, many more would look to do dialysis if they needed it, and not avoid it.
“I would want them to know that a dialysis center is not their only option. Tablo may be right for you, and if you have a care partner who is open to assisting you at home,” says Sangeeta. “I think it would be beneficial to so many people in our community, and help improve their quality of life. We hope that our story can help raise awareness and encourage people to discuss their journey a little more openly.”
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Image at the top of the page: Sangeeta (standing) with her mother Veena receiving hemodialysis treatment at home on Tablo
* Tablo Hemodialysis System Disclaimer:
Results may vary. Keep in mind that all treatment and outcome results are specific to the individual patient. Please consult your physician for a complete list of indications, warnings, precautions, adverse events, clinical results, and other important medical information. It is important that you discuss the potential risks, complications, and benefits of this product with your doctor prior to receiving treatment, and that you rely on your physician’s judgment. Only your doctor can determine if home dialysis is suitable for you, and if you are a suitable candidate for treatment with the Tablo Hemodialysis System.
For safety and effectiveness information, indications for use, risks, cautions and warnings, please refer to the product labeling for the Tablo Hemodialysis System.