Hello everyone I’m new to this site and I’m so glad I found it. I’m trying to help my mom get started on dialysis. She was diagnosed with esrd about two weeks ago. Here’s where we are so far. Last blood test was last monday 27 feb. her creat. level has climbed to 9.3 up from 8.9 about 1 1/2 weeks before. Her ankles are not swollen but the doctor says she is showing some signs of fluid build up. I took her BP thursday and got 166/67 pulse 66, the day before it was 142/70. Itook it again about 4hrs later and got 144/68. She has completed the 24 hr urine and showed a high level of protein(don’t have the number yet). Her next appt. is a consultation only this monday at 9am with a vascular surgeon.I spoke with her kidney doctor about what type of cathe he wants her to get, asked if it would be in the neck. he said he would rather not do that type, he wants to have one put in her arm. Doesn’t this type take along time to be ready for use? I asked him if she has the time and he said he didn’t know.
Since I spoke with him(yesterday) I’ve pretty much decided after reading the posts on this site that It would be best for her to start with CAPD then after awhile try the night one. She will be 74 this month and I think it will be easier on her. I also believe that the cath for PD will be available for use in the shortest amount of time. I read a post where someone started using it in a hospitel setting immediately after it was put in. I’m concerned that she may not have much time left before she begins to be in distress.
Her breathing is a little short but doesn’t seem to be overly labored. If anyone can please give some advice I would really appreciate it. I’m really worried. Thankyou for reading my post. Jayo.
Hi Jayo,
Welcome to Home Dialysis Central. Your mom is lucky to have you watching out for her. This month’s “Topic of the Month” is on PD as a first therapy. We write these articles for patients and family members–and cite peer-reviewed medical journal articles in them so you can print them and bring them to a doctor. Perhaps you’d want to bring this article to your mom’s doctor to discuss whether PD might be a good option for her. As you’ve noted, it’s best to avoid an HD catheter if possible. You can read & download the article at: http://www.homedialysis.org/v1/rotating/0206topicofthemonth.shtml.
What does your mother want to do? I’d suggest that she visit Kidney School at http://www.kidneyschool.org to read about kidney disease, treatment options, lab values, access types, nutrition, etc. If she doesn’t have Internet access, download and print the PDFs of the modules she wants to learn more about. Show her the compare treatments chart at http://homedialysis.org/v1/types/compare.shtml and ask her which treatment fits better with her lifestyle. The more she knows, the more confident she’ll be in deciding what treatment fits with her lifestyle. I’ve worked as a social worker with people with kidney disease and kidney failure since 1978 and the patients who did the best physically, emotionally and who came closest to maintaining their prior activity level were those that took an active role in their own decision-making and care, especially those that chose home dialysis.
Although 91% of U.S. patients do in-center dialysis, this is very different from other countries. One reason that PD and home hemodialysis aren’t used more is that many patients aren’t told about other options before they start in-center hemodialysis. This is in part because most doctors have little or no experience with actual PD or home hemodialysis patients during their medical school or fellowship training. Doctors (and other staff) may underestimate patients’ interest in and ability to do home treatments. Because of limited experience and low expectations, they recommend what they know best – in-center hemodialysis. What patients find is that in-center hemodialysis offers the least opportunity to have control over your life and has the most restrictions so far as fluids and diet, schedule, and activities people can do after dialysis because of how they feel. When surveyed, enlightened doctors say they believe many more patients could do dialysis PD and home hemodialysis today.
Check out the Find a Center database from our home page to see what clinics in your area offer home treatments – PD or home hemo. If the clinic your mother would go to doesn’t offer home dialysis, this may be another reason why the doctor hasn’t discussed PD with her. Another option could be that your mother’s doctor doesn’t believe she’s is medically suitable for PD. However, there are very few medical reasons why someone would not be a candidate for PD. She can talk with other clinics and doctors and change to get what she wants. Others have.
Finally, your mother’s labs indicate she needs to start dialysis soon. I suspect your mother already has Medicare. If someone doesn’t though, he or she can get Medicare coverage when he or she has a creatinine of 6 if diabetic or 8 it not diabetic. Here are a couple of booklets that explain what and how Medicare pays for dialysis in case this is a concern. Medicare pays clinics the same for in-center or home dialysis so it shouldn’t cost more to do dialysis at home.
– Employment: A Kidney Patient’s Guide to Working and Paying for Treatment:
– Medicare Coverage of Kidney Dialysis and Kidney Transplant Services:
http://www.medicare.gov/Publications/Pubs/pdf/10128.pdf
Dori,
Thank you for the welcome. The link you posted is very helpful and I will print it out and take it with me to the next appointment on mar 14. Tomorrow we will meet with a vascular surgeon and I am planning to push for a pd cathe. I know it will have to be ok’d by her kidney doc. I’ming hoping to at least lock down an appointment for the surgery tomorrow no matter which type will be used. Thank you again I will post tomorrow when we get back.
Thank you for the reply, all the posts I’ve come across seem to have a much lower creat. level before they started dialysis. Her doctor doesn’t seem to have a sense of urgency about her, maybe he doesn’t want to alarm us or isn’t worried about that level. Or he’s not the doctor we want. We are wanting to get second opinions but I think at this late stage it might slow things down and she might be running out of time. Tomorrow we have a meeting with the vascular surgeon and I going to push for a pd cath. Then I want to have her seen by another kidney doctor thats not in the same network (just pay cash) so as not to delay anything. I hope to set a surgery date tomorrow. I really want to avoid a neck cathe. how long is the wait usually for a pd cathe to be ready? What happens if it’s used to early? I checked her this morning, bp 162/74 pulse66 no change in weight, breathing seems normal (didn’t notice any difficulty while speaking and walking) also I listened to her lung sounds and didn’t find any sounds of fluid build up so hopefully she can wait long enough. So denof3 thanks again I’ll post tomorrow with an update. Jayo
Beth,
Thankyou for the response, I’ve explained the different types of dialysis to her and of course she doesn’t like any of them but is willing to do everything she can. At this point we believe capd would offer the best quality of life to her. Her doctor hasn’t said anything about her not being a good candidate physically, the only point he brought up was that it would be hard for me to assist her since it needs to be done at various times throughout the day. My sister is a stay at home mom and lives close by. My father is retired and can also assist her. We eventually want to start her on nocturnal pd. I think she would really rather have her treatment this way. Yes she is already on a medicare advantage plan (secure horizons) I read through the pamphlet you suggested thankyou it is very informative I bookmarked it. I believe the center her current doc works with offer capd treatment and training. We hope to avoid the neck cathe. but not sure if we can. I will post again tomorrow after the meeting with the surgeon. Thankyou again. Jayo
Most people who do CAPD or use the cycler to overnight PD learn to do PD themselves. Sometimes people assume that certain people can’t do PD or will need help doing it. However, some need help while many don’t In fact, people in their 70s and 80s and even people with vision problems can do PD by themselves. I hope your mother can do PD and that she can learn how to do it herself because it will give her a great sense of control.
So far as how your mother is reacting to finding out that she has kidney failure, I’d expect your mother to be depressed and to need time to cope with her illness. Most people are upset when they learn that they have to do dialysis, but with time they come to accept it. You might want to look at the coping module on Kidney School. Thank goodness kidney failure has several different treatments that can be done at home so people can live their lives around dialysis instead of living their lives for dialysis. I hope she’s able to do one of them.
By the way, it really helps when people have family support. It sounds like your mom is very lucky to have such terrific support from her loving family.
Hello everyone,
We met with the vascular surgeon today. He seemed to not think that pd is the way to go. Says most of the dialysis patients he sees go with hemo and that he does about 5 to every 100 fistulas. He doesn’t seem to think pd is any more gentle on the system than hemo. I told him in no uncertain terms we want to use capd. We made another appt. for wed to get vein mapping of her left arm just in case for some unseen reason she can’t do pd. Also we have to get a cardiac clearance because of an abnormal ekg. Stress test next monday. How good of an idea is it for a dialysis patient w/ elevated blood levels to be taking a treadmill stress test? I intend to find out the reason she is not on any meds tomorrow. She is not on any support meds at all, even though she doesn’t seem to be getting any worse on the outside and her vitals are remaining steady things could change at any minute. I’m also hoping to get the name of a good doctor tomorrow for the second opinion. We are experiencing some difficulty with the pd trainig as I found out today the clinic she is scheduled to use when everything is ready is not offering pd training at the moment because they are under construction/remodeling.Plan to visit two different clinics tomorrow which are in the network to speak with the coordinators about some type of arraingement. Looks to me like we probably are not going to be able to avoid starting on hemo then switching to pd later.well thank you every one, I’ll check in again tomorrow. Jayo
With 91% of patients being shuttled into in-center hemodialysis with little if any discussion of options or thought about what might fit with their and their families lifestyles, it is not at all surprising that the vascular surgeon puts in more hemodialysis accesses. I wouldn’t let that stop your quest to visit clinics in your area that offer PD and talk with PD training nurses.
I’d ask the doctor about how the treadmill test might affect her lab values. So far as the stress test is concerned, it’s possible that she will have a stress test that makes the heart beat as if the patient is exercising.
After re-reading your first posting, I thought you might want to read this information on proteinuria (protein in the urine):
Is your mother on a type of blood pressure medicine called an ACE (angiotensin-converting enzyme) inhibitor or ARB (angiotensin receptor blocker)? Taking one of these classes of drugs may help protect what kidney function she has and allow her enough time to get a functional access for dialysis.
Let me jump in here concerning PD treatments. We (my 82 year old Mom & me) have a decision to make about going to PD. My Mom has had the neck cath. and the fistula surgery. The fistula is not producing the way the surgeon would like. He is going to give it another two weeks - it has been 5 weeks since the surgery. The next step, acording to the surgeon, is to go to the upper arm. When we asked him about PD, he said it is a personal decision. When we pushed, he said if it were him he would use PD. On her last visit to the clinic for neck cath. dialysis we met with their PD nurse and she said she would not do another surgery on the arm, especially on the upper arm. It appears we have a very good clinic that leans both ways, and is willing to work with you. My mother’s concern is not being able to follow the procedures of doing PD - As I mentioned she is 82 and she does live alone. Also, she is having bad back pains by setting in the clinic chair three times per week, and feeling really tired after each visit. She is also a heart patient and I believe this type of treatment, in clinic, is not good for her. So, to the patient having trouble with their Doctor about PD treatment - there are places out there that like PD treatment. I’m in Memphis, TN.
Hello everyone, sorry it took so long to get back. It’s been an uphill battle and I’m afraid I’m not doing to well. Here’s the latest. The good news is I’ve been able to get the neph. to prescribe my mother bp medication(lisinipril) and Lasix. Bad news is her bp went from 166 to 194 overnight. She is not having trouble breathing but her ankles are now swollen. Got the vein mapping done.I’ve got two calls in to the surgeon about putting in the temp access, it’s been three days and no call back. The neph. says they usually do both the temp and the Fistula at the same time. He also says that it’s been his experience that women my mothers size, about 5’1 143lbs. do not do well on pd because they have to do to many exchanges dailey to get the clearance they need due to the small size of the pertoneal cavity. Also since she is diabetic the glucose in the solution will cause her blood sugar to fluctuate severly. I know I’ve read that there is a solution for diabetics. A pd nurse I spoke with said there is but didn’t want to say anything more. Still haven,t been able to get her in to see another neph. for a second opinion. I think we are going to just change med groups within the ucla network so I can get her to the dialysis clinic that has home pd and hemo programs. I believe waiting any longer to start dialysis is not good for her. My only recourse at this point is to get her to ucla emergency and let them do the temp cath only, to get more time to do the med group switch. At least she will be known to the nephrology dept at ucla where they have a home program. Besides if she is gettig worse fast how well will she tolerate a fistula or pd cath operation? As far as the cardiac clearance is concerned it may not be needed for the temp cath or can be done right there. I don’t believe she will make it to monday before she begins to have trouble breathing. Oh yeah, the neph said he didn’t believe that lasix would help her because of the elevated blood levels but if I wanted to we could try it. I guess it’s up to me to figure out what meds she should be on? I have to make things happen, this doctor isn’t going to. Well lets see how things go today. I’ll try and post again tonight. Jayo
Hi Jayo,
He also says that it’s been his experience that women my mothers size, about 5’1 143lbs. do not do well on pd because they have to do to many exchanges dailey to get the clearance they need due to the small size of the pertoneal cavity. Also since she is diabetic the glucose in the solution will cause her blood sugar to fluctuate severly. I know I’ve read that there is a solution for diabetics.
My sense of the conventional wisdom is that small people like your mom do better on PD. I’ve never heard of the size of the peritoneal cavity being an issue unless there is scarring. And, of course, the size of the peritoneum is proportional to the body… Plus, if your mom uses a cycler, it does many exchanges daily. That’s what cyclers do.
As far as diabetes, if your mom uses regular insulin, it can be injected into the PD solution bags. Otherwise, her insulin (or oral diabetic medication if that’s what she’s on) may need to be adjusted to cover the additional glucose.
If you’re in California, with UCLA, is Kaiser Permanente an option for your mom’s care? They have a Home First program, and they’re devoted to getting as many folks home on dialysis as possible. I think you’d find them more helpful if you could get to them.
If you don’t mind me stepping into this thread, from the creatinine numbers you gave, most people would have already started dialysis - and probably months ago. If your mother needs dialysis right now or very soon anyway (and that’s usually the case when they put in a catheter for hemo), there just might not be the luxury of going the PD route to start out. Why don’t you just let the doctors start her on hemodialysis first, so your mother won’t risk dying in the short term, and then decide once the situation has stabilized about whether to switch to PD. People usually don’t start fooling around with PD when it’s almost an emergency. Starting on PD is most useful when the person has some good residual kidney function left and there is plenty of time to start dialysis in a planned way. Even if they do the access surgery in her arm, this will actually be an advantage if she needs to remain on hemo, or to go back to it in the future. Starting hemo now is not an irreversible decison, and hemo is no more harmful than PD is.
Why did you convince her doctor to prescribe BP meds? Her BP wasn’t that high, and you said she has no significant swelling. You don’t want BP to be too low anyway when you’re on dialysis.
Pierre
Hi y’all,
from the creatinine numbers you gave, most people would have already started dialysis - and probably months ago.
Excellent point, Pierre, you’re absolutely right. At age 74, with a creatinine of 9.3, the MDRD calculator shows her kidney function to be at 4% if she is white and 5% if she is black. (I wish I’d htought to check that earlier). This means she is indeed well beyond the point where she should have started dialysis, and beginning HD with a catheter is quite likely the only real option.
The question then becomes “what comes next.” For most people, that’s in-center hemo. For your mom, it may well be PD, since she’s interested in it and you’re so willing to advocate for her. But priority one is to get her treated. There should not be any further delay.
Denof3,
Thankyou for your interest in helping me help my mom. I’m sorry it has caused you so much pain, all of your insight has been immensly helpful.
We are in the west L.A. area, thats a fair distance from Irvine. Thankyou for the offer. You were right about the lasix her ankle swelling has gone away and she said she used the bathroom much more overnight thursday night. Her bp was 140/68 down from 194/76, I’m going to check it this morning it should be lower. Hopefully I will be able to talk her into letting me take her to the er today or tomorrow. She is very strong willed and I don’t think she is feeling bad enough yet. But I will try today. About the fistula, I am worried that when the time comes to use it after pd is exhausted it won’t be available. thats why I don’t want to have it done yet.
I know the hemo w/ temp cathe will be used at the beginning and can’t be avoided. Thanks again. I hope you can find it within yourself to continue to post, I’m sure you are making a difference for more people than you think.Jayo
Dori,
We are on Medicare advantage secure horizons. I don’t think it would be possible to access kaiser programs without switching to kaiser and they probably will not accept her with esrd. That seems to be the case with every ins. co. Really don,t want to dis-enroll at this point and try to find a supplemental policy to cover the 20% that medicare doesn’t. We can change med groups and primary doctors fairly easily. I’m working on finding a primary in a contracting med group which uses a dialysis clinic w/ a home program. It is extremely difficult to get the right information from the front desk at the doctors offices. Unbelievable. as far as moms diabetes she is type2 controlled by diet, at this point her sugar levels have normalized (due to didney desease according to her neph.). Thats why I,m surprised to hear that it would cause problems w/ PD. Hemo w/ a teso cathe then pd when ready is our treatment strategy, I just have to talk her into letting me take her to the er. I’ll try this morning. Jayo.
Just to reiterate what I posted before, Medicare requires that people with diabetes have a creatinine of at least 6 or creatinine clearance of 15 or less when they start dialysis. Non-diabetics need to have a creatinine of at least 8 and a creatinine clearance of 10 or less.
Is your mother seeing a kidney doctor or a primary care doctor? If she’s not seeing a kidney doctor, she should. Is it possible that she is telling the doctor when you’re not around that she doesn’t want dialysis but she is afraid to tell you that? If she’s seeing a kidney doctor and hasn’t told him/her she doesn’t want dialysis, I’d look for other doctors that are on her Secure Horizons plan.
Once your mother is diagnosed with end stage renal disease (kidney failure), she won’t be able to change from one Medicare Advantage plan to another in most cases. There are a few exceptions, including the option to switch to a Medicare Advantage “Special Needs Plan” that has agreed to accept people on dialysis. There are very few of these plans at this point and I’m not aware of any in your area.
Be sure that know what co-pays Secure Horizons will require your mother to pay for each dialysis treatment and what the maximum out-of-pocket costs will be. You might ask if they have a supplement plan to help pay those co-pays and if your mother would qualify for it.
Beth,
My mothers creatinine level two weeks ago was 9.3 with a gfr of 4%. she is well within the limits for dialysis. I understand that most if not all insurances would not accept her once diagnosed w/ esrd. According to the referrals I got today from her nephrologist she is ckf at this point. Is that the same as esrd as far as acceptance by med plans are concerned? My understanding of the medicare advantage plan she’s currently enrolled with will let her change medical groups within the network. There are many groups. We had an appointment with the nephrologist today, he took more blood and asked about the surgery date for her access and fistula. I informed him my mother really wants to try pd and that we didn’t want the fistula put in yet. He says he is afraid that we can not handle pd and that my mother may get an infection. I am aware of the risk of infection but maybe I’ve missed something. How great is the risk? Is pd such a risky modality that we need super intensive training? How hard are infections to controll when caught early and how difficult are they to spot? Kind of apprehensive at this point. So I stood my ground and insisted we get a referral for a tevo access and a pd cathe. Got it. Tomorrow we have a second opinion appointment . Thursday is the surgery date. We went in yesterday for the cardiac clearance, hopefully the surgeon will get the results in time to keep on schedule. Also the dialysis clinic we got the referral to also has a home hemo program as opposed to the clinic they wanted us to use which has no home program.
I checked the medicare web site and found that clinic is not listed for home dialysis program. So I think she will be better off at the new one. I visited, it looks nice and clean and the staff is very nice and professional. Also spoke with the home program nurse, she seems very professional.
As for the co-payment for every dialysis session, I’m not sure. I’ll put that on the list for tomorrow. Look for supplemental policy too. Thank you Beth for your interest in my mothers treatment, you are a great help and I appreciate it as I’m sure my mother does. Jayo
With a 4% GFR, I’m amazed that she’s doing as well as she apparently is. Even though your mother has a Medicare Advantage plan, she should be able to use any doctor or provider that contracts with that plan.
Peritonitis is a risk with peritoneal dialysis. You will learn how to follow a certain protocol to connect, make the dialysis exchange, and disconnect. As long as you follow it the procedure exactly as your taught and learn how to take care of the peritoneal dialysis catheter, you can reduce the chance that your mother will get peritonitis. Although years ago people used to get peritonitis more often, today there are clinics where people get peritonitis as infrequently as once every 7 years. Some patients never get peritonitis. You’ll learn during training what the bag looks like when there is an infection. You’ll learn what the symptoms are and how to treat peritonitis. Because it’s painful and it can scar the peritoneal lining, you definitely want to avoid peritonitis, but if your mother gets it, it can be treated and cured.
Since the doctor told you about peritonitis, did he happen to mention that people on hemodialysis can get a blood infection called sepsis that can be very dangerous and even deadly? To avoid this, the staff or patient doing hemodialysis must follow a set procedure and learn how to care for the dialysis access.
I’m really glad that you’re taking the opportunity to visit dialysis clinics and to talk with the home training nurse. Hopefully you’ll also have a chance to talk with PD patients too.
If she will have co-pays with her Medicare Advantage plan and if you’re looking for a supplement plan, ask Secure Horizons if they offer one. I’m no expert in MA plans, but I did read that some offer supplement coverage. I don’t know if you can buy a supplement plan outside Secure Horizons and still keep that plan so ask before you buy something else.
Good luck with the appointments this week.