It is very difficult to judge people who decide that they want to end their lives when they are afflicted with a terminal disease that is going to lead to a miserable death. Most people with terminal diseases can be allowed to die naturally if interventions are withheld and adequate comfort measures are taken. For example, people with glioblastoma (grade IV brain cancer) are usually on high doses of steroids. If the steroids are acutely withdrawn with the permission of the patient and family and sedation is administered, death follows quickly. We should never be too quick to judge others without spending some time in their shoes.
People with kidney failure have the option to choose a dialysis treatment or transplant or to choose conservative management, which may include palliative or hospice care until natural death occurs. There are guidelines that suggest that people who aren’t sure if they want to do dialysis to try it for a month or so and stop if the benefits don’t outweigh the burdens. The National Kidney Foundation has brochures on this topic:
- If You Choose Not to Start Dialysis Treatment - https://www.kidney.org/sites/default/files/11-10-0330_ifyouchoose.pdf
- When Stopping Dialysis Treatment Is Your Choice - https://www.kidney.org/sites/default/files/docs/stopdialysis.pdf
That is true, we should never judge them. It’s just that it’s so much easier said than done when you’re family. I can only imagine if I was in that situation and my dad or mom had a terminal disease. It would be heart breaking!
You’re right. It is very sad watching a parent or other loved one choose not to treat any treatable terminal condition, knowing that they will die. Families may want to push their loved one to choose to treat kidney failure to keep them with you. But doing that would be disrespecting the patient’s wishes. I believe it’s important to determine if the person is making the decision after been fully informed about ALL treatment options and settings using language the person can understand. Sometimes it helps to have someone facing dialysis talk with someone of a similar age who is doing dialysis so they can get questions answered. It’s also important to rule out treatable depression. There are recommendations that suggest trying a month of dialysis to see if it restores enough health and well-being. Patients on dialysis can stop anytime and allow death to occur naturally.
Hi Beth, I am in early Stage 4 CKD w/ ADPKD. My belly holds two growing footballs that are failing. What quality of life do I have to look forward to? Size 4XL Spandex? Increasingly-grotesque appearance? Biding time on dialysis while kidneys grow even larger. Given the shortage of transplant organs, at 64 yrs. I’d rather a younger patient receive them. I would simply be biding my time until death by a comorbidity–approaching a state too-weak to even contemplate a later transplant. I’d be “living to do my home hemodialysis.” (I’m told my belly is already too distended to do home PD.) Dietary restrictions, complications, increasing symptoms including mental instability/confusion. [BTW: My wife is AWOL. I consider it cruel & unusual punishment to expect an adult child to be my care partner.] As I see it: I’m already riding the “palliative care train”. I’m strongly disinclined to “stop” at the “dialysis station” along the ride over the cliff…where I know I’m headed. Comments?
Terkins, I am not a Social Worker like Beth. But, I have been listening to people with kidney disease for 28 years now–half my life. It sounds to me as if you have two different things going on that are related. As far as #1: “What quality of life do I have to look forward to”? That can actually be VERY good, if, given your situation, you have those football kidneys removed when they fail–they are painful, too, yes?–and do HD as many days/hours as you can. You no longer need a partner for daily HD (the FDA recently approved folks for solo treatments), so you don’t have to rely on one of your children. If you join our FB discussion group, you can talk to folks about their quality of life, and I think you would be pleasantly surprised. There are not a lot of (perhaps not any) dietary restrictions, and with good treatments, your symptoms would not necessarily increase.
#2 - Your wife being AWOL (I’m so sorry) and your concerns about “biding my time until death” suggest that you may have some completely understandable depression, or more likely “adjustment disorder” (depression for a REASON). It is very generous of you both to want kidneys to go to younger people and to not want to burden your children, so you clearly have a kind and sensitive heart. You may not be aware that older recipients can be eligible to receive kidneys from older donors that would likely not benefit younger ones. So, perhaps don’t rule out a transplant just yet. But, also know that depression can be treated, and you don’t necessarily have to head over a cliff just yet! You can choose to get on the palliative care train at any time with kidney failure–that’s actually a plus. But, to me, at least, you don’t sound like you are ready for it yet, except for your frame of mind. That can change. There is hope. (Not for me to format this post, unfortunately!)
It sounds like you feel hopeless. I can only imagine how you feel. However, I hope that you won’t give up and that you will look around for help with PKD and find others who are living well with PKD. At 64 you’re way too young to not consider all options for treatment,
Although you’ve been told your abdomen is too distended to do PD, I’d suggest getting a second opinion from someone who knows a lot about PKD. There are PKD clinics across the country. If you’re not already getting treatment at one of these clinics, it might help to talk with them about your options. (https://pkdcure.org/living-with-pkd/working-with-your-doctor/find-a-clinic/).
I’ve known patients with PKD who did PD successfully. Here are some studies:
- 5 year French study found PD was a suitable option for PKD patients, https://www.ncbi.nlm.nih.gov/pubmed/21115669
- 10 year French study found that large PD kidneys didn’t rule out PD and patients did as well on PD as HD. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4377775/
- 15 year Turkish study of patients with PKD that found patients on PD didn’t have more complications. https://www.ncbi.nlm.nih.gov/pubmed/27320369#
I’ve also known patients who did home HD. Today one of the machines for home HD has been approved for patients to do without a helper. You may consider it cruel to expect an adult child to help you do home HD, but those who love you may see things differently. When you need dialysis, you can ask the clinic to train you with more than one person and you can learn to do everything yourself so all your care partner would need to do is to give you a hand if you need help.
If your kidneys are causing you discomfort, you might need to have them removed at some point, I have a friend who has PKD. She had very large kidneys removed while she was on dialysis. She had a successful deceased donor kidney transplant several years ago. Here’s a study that looked at PKD patients who either had their kidneys removed when they had a transplant or had their kidneys removed in a separate operation. The results seem to suggest having separate surgeries is better. https://www.ncbi.nlm.nih.gov/pubmed/29224797
In case you don’t know about it, the PKD Foundation (https://pkdcure.org/) has lots of resources for living with PKD, including clinical trials on treatments for PKD that are recruiting or active. If you’re looking for nearby help and support, the PKD Foundation has chapters in 34 states and DC.
I hope you will reach out to other people with PKD, including those who have experienced kidney failure and who have found a treatment that works for them. Although it may not seem like it now, you can live a good life after kidney failure. I’ve seen many people with PKD who do and I hope you will choose to give yourself that chance.
Thanks for your reply, Dori. You’re correct that I’m dealing with multiple channels-of-uncertainty (c.o.u.). Living solely on SS and local medical charity at the moment–trying to sort-through the pending sign-on to Medicare by next Dec (2018) leaves me many ??s.
New c.o.u yesterday: (I learned that) Auryxia (FERRIC CITRATE) costs $1320./mo.! That one drug alone would eat up a big chunk of my SS income!
As is stands, I have no savings and my SS would be inadequate. Unless I can find a Section 8 apt. soon I am barely making it month-to-month BEFORE dialysis.
(Another c.o.u.) I’ve not seen an apartment lease that allows installation of plumbing/electrical connections for home hemodialysis equipment? Is there a law mandating landlords allow such installations? (Which States?)
Okay, Merry Christmas (if you celebrate it), and let’s take these one at a time. First of all, I am so sorry that your housing situation is so tenuous, and hope that you can get Section 8 housing ASAP. 2. Ferric citrate is, indeed, costly, but there are many other lower-cost options, and the more dialysis someone gets, the fewer binders they need. Big Pharma also makes SO MUCH money on these drugs that there are programs to help folks with low income get them for free or at a dramatic price reduction. So, please take that off of your list of things to worry about. 
3. Most leases do not specifically exclude dialysis–mainly because most landlords have never heard of it. I believe we do have folks in our Facebook discussion group (which you are very welcome to join!) who live in Section 8 housing and do home dialysis–those apartments may even be required to permit home dialysis under the Americans with Disabilities Act. Lots of folks who rent apartments do home treatments, either PD or home HD.
If you’re living alone, do you know anyone who could share your home (or you could share theirs) to save money on the cost of housing? Many communities have housing for people with limited income, but the need exceeds the available housing. Even if there is a waiting list for rent subsidized housing, I’d suggest that you apply as there is no way to know others on the list will have found other housing shortening the list.
I doubt that any lease would say they allow modifications for dialysis. However, neither peritoneal dialysis nor home hemodialysis with the NxStage machine require permanent modifications to the apartment, but people with disabilities have housing rights. Here’s a link to information about disability rights and housing.
https://www.hud.gov/program_offices/fair_housing_equal_opp/disabilities/inhousing
Do you have insurance now? If so, most insurance plans have a deductible, copays or coinsurance that you have to pay. They generally have an out-of-pocket cap after which the insurance company pays 100% for the rest of the year. Be sure to read the description of your plan, its list of preferred providers and drugs on their drug list to be sure you’re doing all you can to keep costs down. You can let providers know about your financial situation and ask if they could discount your bill or let you pay over time. You mention that you’ll be eligible for Medicare next year. When you get Medicare, you can get a Part D (drug) plan to help with drugs costs on the plan’s drug list and there’s a program through Social Security called “extra help” to reduce the premium and drug costs for people with limited income/assets. Medicaid and Medicare supplement plans can help pay Medicare deductibles, copays or coinsurance.
So far as keeping costs for drugs down, the Medicare website has information on drug assistance programs for different drugs. The charities that help people generally have income limits and often help those with certain conditions.
https://www.medicare.gov/pharmaceutical-assistance-program/
Hope this information is helpful.
“Thanks!” Beth and Dori. Your answers and further research are helping with my anxiety over near-future choices. I was taught that “anything worth having is worth fighting for” which I seem to have “forgotten”. I once read that Christopher Reeves spent 4 hrs. each AM getting dressed/ready to make public appearances after being paralyzed. I need that same kind of resolve to endure. When my “clock” is “up”: “So be it!” I’ve cheated death many, many times more than “a caboose-full of cats” already. This article helped give perspective on current c.o.u.-s; if a nephrologist is perplexed with options: I don’t feel so bad. [http://homedialysis.org/news-ancl-research/blog/233-the-mcxJality-nnayhem-of-modern-dialysis]
I am SO pleased to hear that fight come back into your words, Terkins, and I know that Dr. Agar will be thrilled to learn that his blog has helped you!
Very, very thrilled … there’s help out here, Terkins, and your learning how and where to seek it. Well done.
I’m being offered a Section 8 1 bdrm. apt. in a town where my docs are + bus transportation if my SUV becomes too expensive to keep operating! Living on only social security and facing dialysis, getting Medicare Advantage (11 mos. hence) will help (eventually) with expenses. Living in Section 8 would help keep a roof over my poorhouse head! This apt. is likely just over 400 sq. ft. I sleep in a manual recliner with a BIPAP machine (can’t tolerate any mattress/bed); my tiny bedroom will have lots of shelves to accommodate my auto maintainance tools, etc. How many sq. ft. are required for HHD units (in general)?.
The NxStage cycler itself is 15" x 18", so it has a small “footprint” – just 1.8 square feet. IF you use bagged fluid, you’d be getting shipments of boxes full of bags, and they are likely too heavy to put on shelves. I’d say that you could store them under the bed, but since you don’t use a bed they would take up floor space. If I had to guess based on the photos I’ve seen, you’d need probably 20’ or so of floor space, and then would go vertically for 4-5’.
What most folks do, though, is they use a PureFlow device to make their dialysate fluid instead of using bags. The NxStage cycler is designed to sit on top of the PureFlow, which is just a bit bigger. I couldn’t find PureFlow dimensions online, but it looks to be about 24" x 24", or 4 square feet. Then, instead of boxes and boxes and boxes of fluid, you’d just have boxes containing concentrate for the PureFlow, cartridges for the machine, and ancillary supplies like needles, gauze, medicines, etc. All of these are lightweight enough that they COULD go on shelves. If I were you, in an apartment, I would also put some sort of appliance tray under the PureFlow. This would increase its footprint, but decrease the risk of a leak. Sometimes something goes wrong with the PureFlow and folks end up bailing out the contents. There is an internal tray, so you could do without an external one, but just in case… Does this help?
That is good news about the availability of Section 8 housing. So far as space issues, I’ve heard from someone who works for NxStage that If someone has space issues there is an option of more frequent deliveries and even though the clinic has to pay more for that, some clinics will do that. As Dori said, using the NxStage cycler with the PureFlow will reduce the number of boxes of bagged solution. On the NxStage website, it states that the Pureflow is about the size of a standard end table. Unpacking boxes of lightweight supplies and putting them on shelves would take up less space.
You didn’t say whether you were single or had a partner. If you don’t have a dialysis care partner, the FDA has approved the NxStage cycler for solo dialysis. Both Fresenius and DaVita have policies and procedures for training patients to do dialysis alone. Even though a number of patients were doing dialysis alone before the FDA approved it (most with their doctors’ OK), some doctors may still be nervous about allowing patients to do dialysis alone, but fewer since the FDA approved this.
“Yes” Dori it helps! Thanks! I have multiple Seville Classics’ 5-Tier Steel Wire Shelving Systems. “This system is constructed from industrial-strength steel and features UltraZinc plating; shelves hold up to 300 lbs. each.” I’m sure the bottom shelves could store whatever is needed.
Do you have a link that gives more info on the PureFlow device? [I already have an appliance tray under my dehumidifier to catch water if the auto-cutoff fails. I’d hate to have to deal with any landlord after causing water damages!]
Absolutely! You can learn much more about the PureFlow here: [https://www.nxstage.com/hcp/products/pureflow-sl/]. It sounds like you are already set for shelving, and you already know about appliance trays.