Helga is my wife. She is 75 years old and had a stroke in May 2021. She got Covid in September of that year while recovering from the stroke at a nursing home in Dayton, Ohio. She recovered from Covid but developed ESRD. We were able to have her taken to a hospital in Birmingham, AL to be closer to our daughter in Anniston. Helga had trouble swallowing and was given a trach. We want Helga to be transferred to our daughter’s house in Anniston for home hemodialysis. However, Davita has refused to treat her under any circumstances. Fresenius has sent me an e-mail about home dialysis, but has otherwise not contacted me back. A nephrologist said I should have no problem running the hemodialysis, because my wife cannot communicate. If she cannot be treated here, the hospital is planning on sending my wife back to a clinic in Ohio. I spoke to my wife’s doctor about getting a fistula for home hemodialysis and she is working on this. We will pay for someone to train my daughter and me on home dialysis. We can afford a nurse. We can buy a machine. We can fix up a room at our daughter’s house. We just cannot get one of the two dialysis clinics with a stranglehold on home dialysis to help us. What can we do?
Has the nephrologist treating your wife in the hospital talked with dialysis clinic medical directors in the Anniston, AL area. It often helps if a nephrologist treating a patient in the hospital can let the nephrologist who is making decisions about who to admit know that the patient is medically stable and has support to do home dialysis. That could reduce the clinic’s concerns.
You can find clinics that offer training for home dialysis (hemodialysis or peritoneal dialysis) on a couple of websites. The Home Dialysis Central’s Find a clinic database at Home Dialysis Central lists a Fresenius clinic in Anniston that offers training for both hemodialysis and peritoneal dialysis.
The Medicare database that lists clinics approved for home dialysis training can be found at Medicare.gov. Look for dialysis facilities and choose a distance from the home zip code or city. The clinics listed may or may not be offering home training currently. It lists these 2 clinics as ones offering PD and HHD training:
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0.6 mi
Davita Model City Home Training (PD) (was this the clinic that refused her?)
1724 Leighton Ave
Anniston, AL 36207
(256) 236-5864 -
0.8 mi
Fresenius Medical Care Anniston Home, LLC
2017 Quintard Avenue, Suite A
Anniston, AL 36201
(256) 237-7340
There are other clinics that are farther away.
If your wife could do peritoneal dialysis (PD), training takes about a week whereas training for home hemodialysis (HHD) takes 3-6 weeks. Most people do PD using a machine overnight while they sleep. PD might be easier for you and your daughter to manage as long as having some dialysis fluid in her peritoneal cavity won’t adversely affect her breathing.
Once you find a clinic to admit your wife, which as I said before might happen if her nephrologist advocates for her, Medicare and other insurance will help to pay for home training, dialysis-related drugs and labs, home dialysis equipment and supplies and support services (clinic visits) with the home training RN, registered dietitian and master’s prepared social worker. Medicare currently doesn’t cover anyone who performs dialysis in a patient’s home. That’s why most patients ask a family member or friend to be trained to help with dialysis at home.
It sounds like your wife has had a very hard time with having a stroke, Covid, and developing kidney failure. How well has she recovered from the stroke? I gather that she can’t talk. Can she communicate with you any other way (writing, communication board, other.)? Does she breathe through the trach? Does she require a vent too? Did she have exercises to help her regain the ability to swallow or is she still unable to swallow? If she’s not able to swallow does she get IV nutrition or have a feeding tube? All these health problems can greatly impact a patient’s quality of life. This is a hard question to ask, but does she have an advance directive that lets you and your daughter know what medical treatments she wants and doesn’t want? I’m a social worker and have worked with patients with fewer health issues who chose quality of life over quantity of life and decided not to start or to continue dialysis. It’s hard for family members to when that happens, but it helps a lot if they’ve had that discussion whether it’s on paper or not. I hope you understand that this question is coming from a place of caring.
I will speak with my wife’s nephrologist about contacting one or both of the clinics in Anniston. I sent a request form from the Fresenius website to get info on their home dialysis training. I got an official reply that someone would contact me, but have not been contacted. My wife is a German citizen. I have applied to get her on Medicare in January. No matter what I do, I cannot get the SSA to approve my application, even though a spouse with ESRD should be automatic. My wife cannot do PD because she has what is called a PEG in her stomach where she receives liquid nourishment through a tube. Helga was speaking in sentences two months ago, but stopped talking when she was in the last nursing home in Dayton. She can only move her right arm and not in a way to write or otherwise communicate. She breathes through the trach with no vent. She has breathed with the trach capped for an entire day. Helga cannot swallow well. Therapists have worked with her and she does swallow some. She has a feeding tube into the PEG. Helga has previously made her desires known about what procedures she would want. She beat Covid, is a fighter and very much wants to live. I am not a doctor, but it seems to me that Helga has cognitive fog from her month long case of Covid. One of the reasons that she is in a hospital in Birmingham is that the university here is developing therapy for this that I hope she can eventually use. The neurologist in Dayton told me that once Helga heals physically her bedsores, that her brain will heal too. We are willing to try Stem cell therapy to aid this for her cognitive ability and perhaps for her kidneys as well. However, first we have to resolve the issue of home hemodialysis. As you know, more than half of the dialysis patients do not survive their first year. We are sure Helga will have the best chance at home. Thank you for your advice. I will express our goals to Helga’s nephrologist. The nurse here just told me that they could start dialysis training tomorrow
First, I want to correct your belief that half the people die on dialysis in the first year. How long someone may live on dialysis depends on age, other health conditions, and how well they take care of themselves. I know someone who developed kidney failure as a young man and died at age 67 after living 41 years on dialysis. Here’s his story.
That said, your wife may not live a long time on dialysis at her age and with the serious health problems that she has. You and your daughter will have major caregiving responsibilities with dialysis, trach and feeding tube care, the need to rotate her in bed often to avoid bedsores once the ones she has heal, and probably other things I’m not aware of. She’ll probably need medical equipment in the home. Make sure there is a discharge planner who can assess what she will need in the home and get the doctor to prescribe that equipment and get the equipment ordered for delivery prior to discharge. Once she has a dialysis clinic that admits her, it should train you and your daughter and order dialysis-related equipment and supplies. Training is normally done in a dialysis clinic or occasionally in a patient’s home. I’ve not heard of a patient or care partner(s) being trained in a hospital. If someone is showing you how the dialysis machine works in the hospital, ask if the machine used there will be the same one that you will use in the home. The most commonly used home HD machine is called NxStage. People who travel love being able to take this machine with them and avoid having to do dialysis in a clinic, which may be hard to schedule. But if you don’t plan to travel with the machine, you might ask about other machines. The Tablo is also approved for home dialysis too. You can read about it at Outset Medical | Tablo Hemodialysis System. Also, home dialysis training includes more than just knowing how to operate the machine. That’s why it takes 3-6 weeks for patients to be ready to go home on HD.
I am no expert on neurological conditions and have no idea about stem cell therapy for cognition. If she has infected bedsores, infection can affect cognition. Cognitive changes also go along with uremia of kidney failure. That’s why it’s so important for patients to get as much dialysis as possible. Native kidneys work 24/7. Dialysis 3 times a week for 3-4 hours/treatment can’t compare with native kidneys and the best dialysis 3 times a week is said to compare to 15% kidney function. Patients often do home HD more often and/or longer which provides a higher percentage of kidney function. This helps them feel healthier than those who do dialysis 3 times/week. But doing dialysis more often can be burdensome to the person helping with it. Longer treatments may be easier on the helper.
So far as Medicare is concerned, people with ESRD can qualify for Medicare if they’re a citizen or lawful permanent resident (LPR) who has lived legally in the U.S. for at least 5 years before applying for Medicare. Here’s the SSA policy about that - SSA - POMS: HI 00801.061 - Residence and Citizenship/Alien Status Requirements - 08/30/1993.
Assuming you have worked and paid Medicare taxes, your wife could be eligible for Medicare under your work credits. Here’s the SSA policy about that - SSA - POMS: HI 00801.201 - R-HI Insured Status - 03/02/2016.
Finally, there is a booklet called Medicare Coverage of Kidney Dialysis and Kidney Transplant Services that you can read at https://www.medicare.gov/Pubs/pdf/10128-Medicare-Coverage-ESRD.pdf.
I gather that your wife is a fighter and wants to live. I can tell that she has a loving husband and daughter who want to help her live as long as she can with as good quality of life as possible. I hope that she’s able to get the therapy she needs to regain as much function as possible.
Mr. Oberley’s story is indeed inspiring. We have two loving daughters who, along with me, cannot wait to do all of the care you mentioned and more. We have already thought out what must be done. Thank you for confirming that our plan has touched on the same points that you posted. We also would prefer the NxStage for home HD. We hope to do HD five times a week for Helga. My daughter in Anniston and I will take turns or work together as needed. Our eldest daughter lives in Germany and has spent every vacation day with her Mom. We hope she may eventually move here. We are a team with one goal, to help Helga.
I am retired and have Medicare A and B. Helga should qualify as a Resident Alien married to a U.S. citizen. The SSA office in Dayton still operates under the pandemic rules. I can only enter the building with an appointment. I can only interact with one worker. So I have never spoken to the assigned case worker and he does not return my phone messages. I turned in the requested documents only to receive a letter a month later that they needed those documents. The case manager had obviously done nothing. I called the home office in Ohio and have once again submitted the documents. That was two months ago. I wish they had people like you at the SSA.
Thank you so much for your very helpful advice.
Arch,
At our dialysis company we offer two forms of dialysis. PD and home hemo. I would never wish to do home hemodialysis on anyone unless peritoneal dialysis fails. There is no advantage to home hemodialysis over peritoneal dialysis unless you have an old school nephrologists who wishes to get your wife’s labs equal to that of a normal person without kidney failure.
The amount of time it takes to train is over the top. You and your family will all need to learn to be dialysis technicians. You’ll need to learn what to do with blood pressure dropping, you’ll need to learn how to handle blood loss, they will require your wife to get a fistula or graft to get needles. The treatments will last 2 hours sure, but prep time is 35 minutes, and tear down 15 minutes.
PD takes no blood, no risk of blood loss, no risk risk of BP dropping, it also hold on to her residual kidney function.
When I perform educational classes for people I tell them this first: I want your life before dialysis to continue after you meet me. I could not ever say that to someone on HHD, I would be being dishonest. HHD is takes weeks to learn and has more risks.
People could argue that PD has more risks because of myths: infection (completely false, west your mask, wash hands, sanitize, turn off fans), heavy amount of supplies: false our patients get 5 boxes a month and do not use a PD cycler machine whereas Nxstage delivers a pallet a month of supplies. Can’t have pets is another myth.
Overall we always support peoples home journey and produce zoom educational classes anytime to educate free of charge. Call 1.888.KIDNEY-0
Thanks, but as I posted, my wife has a feeding tube connected to a PEG in her stomach. She is thus not eligible for PD. Without the feeding tube, she would starve.
Very false information being shared with you Arch. The feeding tube is in the stomach, the PD cath in the abdomen. Consult a more experienced surgeon. We do PD caths with colostomy bags, PD with feeding tubes. Just don’t add stress to your life when you do not need to!
The International Society for Peritoneal Dialysis from 2020 post that I cannot link: “At our insitution have had several patients receive PEG tubes while on PD, and both had early peritonitis complications. As a result, we avoid PEG after PD, and we have not yet had a patient with PEG before PD.”
There are not large studies and only a few case reports of patients who already had a PEG tube when they were started on peritoneal dialysis. This is not surprising since some anecdotal reports discuss how some patients on PD have developed peritonitis when a PEG tube was placed.
I found two articles on peritoneal dialysis in patients with PEG tubes that do not have abstracts. You could ask if the nephrologist treating your wife if s/he can access these articles through his/her institution to discuss this option and share the articles with you.
I don’t know if anyone in the Home Dialysis Central Facebook group has a PEG tube. You might want to consider joining this FB group, which is closed to members only to protect members’ privacy. Those interested in joining must answer 4 questions. You can find that group here:
Arch I am here to be a resource not to be argumentative with folks. What I will tell you is this article has a very small sample size. Where these patients in a long term care or we’re that at home cared for by a family member like yourself? There is always going to be a risk infection with PD and HHD, and especially when you are talking PD colostomy, PEG etc, you have to be extremely careful and mindful. At Premier we don’t do things based on what others have said especially in a market dominated by hemodialysis promotion and peritoneal aversion, but that’s our approach to treating patients…to give them the best quality life and outcomes by being innovative.
I think you’re going to have great success and easy to learn home hemodialysis as your chosen modality. Take it slow and remain positive as you take on this journey. Regardless your family is lucky to have you at the helm during the tough times. Your wife will do great with you handling it!
I emailed a Canadian nephrologist I heard speak at the recent National Kidney Foundation Spring Clinical Meetings on dispelling myths about who is not a candidate for PD. When I hear from him, I’ll update you on what he says about starting a patient with a PEG tube on PD. Even if you choose to do home HD, I think it’s good to know ALL your options for treating kidney failure in case something might fit better. Here’s a decision aid that looks at treatments based on what’s important to the patient.
I heard from the Canadian nephrologist, Dr. Rob Quinn. Here’s what he wrote:
"There isn’t a lot of literature to guide us in these situations, but your impression is correct. Generally, the presence of a previously inserted PEG tube is not considered a contraindication to PD. There are obviously risks associated with PEG tubes (with or without PD), but the small case series / case reports available suggest PD can be done successfully in these individuals.
A couple of additional points:
- the types of individuals who get PEG tubes are at high risk of medical complications at baseline, so that needs to be factored into any decision-making and considered when complications occur. Peritonitis and other complications occur in patients with PEGs who are not on PD as well.
- In this situation, it wasn’t clear to me if the PEG was going to be permanent or not. If it isn’t and it was going to be pulled soon, deferring until then would be reasonable.
- I can’t speak to the presence of other barriers/contraindications to PD therapy in this case
- The pediatric nephrologists have more experience with this than adult docs as there are more kids who require PEGs that have ESKD on PD
- As for literature, it’s limited to case reports and case series - I’ve attached a summary from 2013 and a recent case series that has all the usual references in it.
- In the end, in situations like this, I always present patients with the potential risks and benefits and am clear that we don’t have great data to guide us. We then we make a decision together and proceed from there."