helping mom

[JayO]

Well here I am, trying to figure out how to help my mom thru this most trying time of her life.
She will be 74 on march 31 and has been diagnosed w/ stage 5 esrd for about one week now,
her creatinine level is now at 9.3! up from 8.9 a week ago. I can't understand why the doctor didn't
send her in for dialysis two days ago. He called yesterday to tell me that She needs to take her calcium
he prescribed, and that she will need to think about dialysis while he gets the authorization from secure
horizons. He said it should be ready by the next appointment which isn't until march 14! Should I take her into the
ER before then? Her ankles are not swollen but she seemed alittle short of breath today when I took her for a CT scan.
I'm freaking-out. I've been reading just about everything I can get my hands on about kidney disease. I searched the web every night
for hours. I've learned alot from all you nice people on this site. Thankyou. Also I've spoken to three  people at three different
dialysis centers and only one said that they have heard about nxstage and that they will be starting a program in two to three mos.
and would I like to place her name on the waiting list. I said yes. Can anyone please give me some guidance on what I should do next?
I've already got her a big jar of extra strength tums, one tablet before every meal. what can she eat? Everyone around her keeps telling her to drink alot of water.
Isn't that wrong? Help. I don't know what to do.

[Epoman]

Well here I am, trying to figure out how to help my mom thru this most trying time of her life.
She will be 74 on march 31 and has been diagnosed w/ stage 5 esrd for about one week now,
her creatinine level is now at 9.3! up from 8.9 a week ago. I can't understand why the doctor didn't
send her in for dialysis two days ago. He called yesterday to tell me that She needs to take her calcium
he prescribed, and that she will need to think about dialysis while he gets the authorization from secure
horizons. He said it should be ready by the next appointment which isn't until march 14! Should I take her into the
ER before then? Her ankles are not swollen but she seemed alittle short of breath today when I took her for a CT scan.
I'm freaking-out. I've been reading just about everything I can get my hands on about kidney disease. I searched the web every night
for hours. I've learned alot from all you nice people on this site. Thankyou. Also I've spoken to three  people at three different
dialysis centers and only one said that they have heard about nxstage and that they will be starting a program in two to three mos.
and would I like to place her name on the waiting list. I said yes. Can anyone please give me some guidance on what I should do next?
I've already got her a big jar of extra strength tums, one tablet before every meal. what can she eat? Everyone around her keeps telling her to drink alot of water.
Isn't that wrong? Help. I don't know what to do.

OK first off welcome to the board and I know you will learn alot from us. Now on to business first calm down. Take a deep breath you and your mom have a long winding road ahead but we will walk you through it. OK Concerning NxStage the only problem I see with it is you do realize you will need to stick her needles, unless she is capable but at her age and this all being new to her I'm not so sure she is capable. If she is great, if she's not then you will be her "Nurse" and stick the needles and set up her machine. If your emotionally strong enough, great if not maybe someone else can. But regardless the NxStage is far off your mom will have a "Temp Access" placed in her neck or chest and she will then go for a "Fistula" surgery if her veins are good enough, at her age she may have a "Graft" put in place instead due to her veins not being a viable solution.

As for her dialysis, March 14 is not that far off and you say her ankles are not swollen so that's good. I would not listen to the idiots saying drink plenty of water since they have no idea. Drinking plenty of water is not going to help your mother, especially if she does not urinate or urinates very little. For the time being I would limit foods with high Potassium and Phosphorus content, for example cheeses, chocolate, bananas, oranges, whole milk, Potatoes, Well you get the idea I'm sure you have come across lists on the internet of bad foods. Also I would limit her intake of fluids even if she does still urinate. If your doctor says take the calcium do it, he has his reasons. She may have low calcium. If she starts to experience trembling in her legs that means her calcium is too low, have her take a few more "Tums" right away. A Low calcium can stop your heart. So you want to raise it as fast possible and "Tums" do work. Believe me I've been there.

This is in no way medical advice, I am not a doctor I just have been on dialysis a long time. Your mom and you have trying times ahead and you will pull through you just need to stay as informed as you can (like your doing now) and be there for your mom not only physically but emotionally.

This site may scare you by some of the posts you read. But you at least will be informed. An informed patient is a healthy patient. I wish your mother the best. Keep us updated.

- Epoman

[Rerun]

JayO,

Welcome to the site.  You can come here to learn and to vent.  Believe me, once your Mom starts dialysis, you will need to come here and so will she.  

The final straw for me before going to ER was that I could not hold any food or drink down!  Now, even that was after a month of throwing up.  So, March 14 should be okay, tell her to cherish every day!     You will be okay, and You Mom will get through this, or not.  We all have a choice before going on dialysis.  No one can force her.  It is not an easy life.  I'm not trying to be mean, it is the truth.    Even if your Mom chooses to go on dialysis, and does well, great, but if she doesn't do well, she can always quit.  Just remember we have a choice here, and it is not a bad way to go. 

OKAY..... I'm getting way to philosophical here!   

Everybody is going to be fine!  It is all in the attitude!  (did I just write that) 

[JayO]

Epoman,

Thanks for the welcome and reply. I feel  much less stressed out today after reading your reply. I thought mar. 14 just seemed so far away for the next doctors appt. Everyone I come across on these posts seems to have begun dialysis with a lower creat level. I 'm trying to avoid a hospitalization crisis. I checked her BP this morning, 166/70 Pulse 66. It's rising. If it gets much higher I will have to call her doc. and see what he wants to do about it. She's not on any pressure meds.
Thanks for the food advice (I know your not a doctor, in my book experience goes a long way.) I made a list and posted it on the frig as a reminder.
I realize Nxstage is a long way off but I guess there's a list so might as well get her on it now. I'm sure I can handle the needles, Was an emt
for a number of years back in the mid eighties, I hope my sister can handle it. I would  like her to help as much as she can. I'll keep in mind the tums if I notice her legs shaking. Thanks again and I will keep posting her progress, I'm sure I will have many  questions.

[JayO]

Rerun,

Thankyou for the welcome and reply. It helps  to know there are people out here I can count on to answer my questions who are drawing from experience. I asked my mom if she had been throwing up lately, she said she hasn't thrown up since last sunday. At her first visit with the GP doc. they found she had a uti and gave antibiotics. she says she feels better lately.
As for getting through this I know It's going to be tough for our whole family, especially with the 'not' factor for my mom.
Her attitude is very positive. She keeps surprising me with the positive things she says. Well thanks again. Oh and congrats on your appointment.

[Epoman]

Epoman,

Thanks for the welcome and reply. I feel  much less stressed out today after reading your reply. I thought mar. 14 just seemed so far away for the next doctors appt. Everyone I come across on these posts seems to have begun dialysis with a lower creat level. I 'm trying to avoid a hospitalization crisis. I checked her BP this morning, 166/70 Pulse 66. It's rising. If it gets much higher I will have to call her doc. and see what he wants to do about it. She's not on any pressure meds.
Thanks for the food advice (I know your not a doctor, in my book experience goes a long way.) I made a list and posted it on the frig as a reminder.
I realize Nxstage is a long way off but I guess there's a list so might as well get her on it now. I'm sure I can handle the needles, Was an emt
for a number of years back in the mid eighties, I hope my sister can handle it. I would  like her to help as much as she can. I'll keep in mind the tums if I notice her legs shaking. Thanks again and I will keep posting her progress, I'm sure I will have many  questions.

I'm glad, just keep doing what your doing and research, research, research. For example if the surgeon tells you he can't put in a Fistula, GET A SECOND OPINION! ask the surgeon how many fistulas he has done and try to find out his success rate (working fistulas after 1 year). If your mom gets a good surgeon and a good fistula she may never need another access for the rest of her life. Just what ever you do get a second opinion. You need to be your moms advocate.

About her legs shaking you won't notice it, her legs will tremble and vibrate however you will not be able to see it but she will feel it, so tell her to let you know as soon as she feels vibrating. As for the needles I was not referring to you being able to stick I'm sure you can I was talking about sticking your "mother" that's a different story, since she will feel pain and you will be the one sticking her. If she gets a fistula I HIGHLY reccomend using the "Buttonhole Technique" eventually she will have NO pain when you stick her. We can talk about that more as you get closer to that stage.

Please post any questions you may have here and someone will answer you. We understand what you and your mother are going through. So we want to help.  

- Epoman

[JayO]

Epoman,

We have an appointment with a vascular surgeon tomorrow and i am planning on setting a surgery date. Mom seems to be holding her own. Her bp this morning was 162/74 pulse 66 her weight is staying constant at 143, breathing alittle short but not labored during speech or walking. ankles not swollen lung sounds clear. I've been researching every night since my last post and I I've got a better understanding now. I've explained the different methods to mom and she thinks she would like to try capd. I think it's probably a good decision as I hear it's the most gentle method. Hopefully she has the time to let her access point heal. We would like to avoid the neck cathe. if at all possible. The doc wants to avoid it also and wants to put one in her arm. Doesn't it take longer for the fistula or graft take longer to be ready for use than the pd cathe? Do you think it's a good idea to start pd then have the fistula put in so it has time to heal? After the meeting tomorrow I want to try and get her in to see another neph. thats not in the same network(just pay cash) for a second opinion. I don't want to slow anything down now that the wheels are turning. I can always say stop if anything changes. Thanks for listening, I'll post again tomorrow after the meeting. JayO

[Epoman]

Epoman,

We have an appointment with a vascular surgeon tomorrow and i am planning on setting a surgery date. Mom seems to be holding her own. Her bp this morning was 162/74 pulse 66 her weight is staying constant at 143, breathing alittle short but not labored during speech or walking. ankles not swollen lung sounds clear. I've been researching every night since my last post and I I've got a better understanding now. I've explained the different methods to mom and she thinks she would like to try capd. I think it's probably a good decision as I hear it's the most gentle method. Hopefully she has the time to let her access point heal. We would like to avoid the neck cathe. if at all possible. The doc wants to avoid it also and wants to put one in her arm. Doesn't it take longer for the fistula or graft take longer to be ready for use than the pd cathe? Do you think it's a good idea to start pd then have the fistula put in so it has time to heal? After the meeting tomorrow I want to try and get her in to see another neph. thats not in the same network(just pay cash) for a second opinion. I don't want to slow anything down now that the wheels are turning. I can always say stop if anything changes. Thanks for listening, I'll post again tomorrow after the meeting. JayO

CAPD while it involves no pain, you will have to do multiple daily exchanges or do it on a cycler at night. Plus your mom will have a tube sticking out of her stomach and she will need to keep it dry and clean. A patient can die if they get peritonitis it is basically a infection and can be life threatening. But as long as it is treated quickly it is ok. As to your questions, a graft can take as little as a couple of weeks to be ready, a fistula can literally take a couple months or up to several months to develop, remember to have her squeeze a ball for a set amount of time everyday. The more she exercises her fistula the faster it will develop. a PD cath I believe is ready right away. (Correct me if I'm wrong CAPD users). As to your other question why would you have your mom start PD if she will try to do Hemo once her fistula matures? I would just get a chest cath placed, get the fistula surgery done, wait till it matures then start hemo with a nice fistula and use the "Buttonhole" technique and your all set. Good for you on going to get a second opinion.

- Epoman

[toad]

the catheter is not ready immediately....from surgery to beginning of dialysis is about 3 weeks...first two weeks are for healing because where the tube comes out is not stitched....it is quite awkward for those 2 weeks because the bandage ia about the size of your chest...the 3rd week is for training..i went for 5 days straight to the hospital on the sixth day the nurse does a home visit and this is when dialysis begins...if u have any other questions feel free to ask

[Rerun]

My Two Cents: 

Start with the PD Catheter.  Let it heal 3 weeks and take the training.  Keep it clean and dry.  If she takes a shower, cover it with saran wrap tape it and then when she is done take it off and pat it dry and use a blow dryer to evaporate the extra moisture.  Keep the blow dryer back a little so not to have too much heat. 

If PD works, why put in a graft or fistula? 

PD is great if you don't get  peritonitis.  Hygiene is everything. 

THEN... if PD doesn't work or down the road she gets a case of peritonitis they can ALWAYS put in a Hickman Catheter in her chest for immediate dialysis and work on plan B.

I would not put her through more than she has to at her age.

If you need to get to work, why buy a bus pass and a car and a bike all the same day? 

[Black]

... I would just get a chest cath placed, get the fistula surgery done, wait till it matures then start hemo with a nice fistula and use the "Buttonhole" technique and your all set. Good for you on going to get a second opinion.

- Epoman

Epoman, Don't they do the chest cath and the fistula at he same time so she would only have surgery once?  Couldn't they start hemo immediately, get the NxStage ASAP, & then switch to the fistula when it's ready? 

Jay, As to the second opinion, YES, ALWAYS, but be sure it's not a Doc in the same group!!

[Rerun]

This last time with me, they put in the fistula hoping that it would have time to mature before dialysis was needed.  THEN, they had to put in the Hickman Catheter in my chest exactly 2 months later.  I think they just saw $$$$ and went for 2 surgeries.

If you go for the fistula, I would have them put the Hickman in at the same time....... if they will. 

But, don't do all three.......CAPD, Hickman and fistula.  Good Grief!   

[Epoman]

... I would just get a chest cath placed, get the fistula surgery done, wait till it matures then start hemo with a nice fistula and use the "Buttonhole" technique and your all set. Good for you on going to get a second opinion.

- Epoman

Epoman, Don't they do the chest cath and the fistula at he same time so she would only have surgery once?  Couldn't they start hemo immediately, get the NxStage ASAP, & then switch to the fistula when it's ready? 

Jay, As to the second opinion, YES, ALWAYS, but be sure it's not a Doc in the same group!!

Well it really depends on the doctors if they want to do both at the same time. The Hickman can be placed bedside in the hospital bed in her room. And takes only a few minutes. So if she needed dialysis in the meantime while she waits to see a surgeon and get an appointment date. It's all dependant on how soon she needs dialysis. But Rerun had a good point maybe they should just try PD first and wait on the fistula.

[JayO]

Hello everyone, thanks for the interest it's comforting to know I have a base of knowledgeable and sincere people to help me get the right answers from these doctors. Here's the latest. We met with the vascular surgeon this morning, he seems to be more interested in setting her up for hemo w/ a graft although he says that her left arm possibly has good enough veins for a fistula. We have a vein mapping appointment on wed. I informed him that we want to go for pd and we want him to examine her for that procedure. Poked around her abdomen and said there should be no reason she couldn't go with pd. He really thinks that hemo in a clinic is the best method. Says he does maybe 5 pd catheters for every 100 fistulas. We are in so cal and and it seems not many people on this side of the valley go with pd. The clinic that her current doc works with is under remodeling at this time and is not offering pd training. The clinic at ucla does offer it but isn't working with the med group my mom belongs to. I'll get more info tomorrow when I visit both clinics and talk with the coordinators. As far as the second opinion goes we didn't get in to see anybody today, I'm hoping to get the name of a good doc tomorrow and setup an appointment. Let's see, oh one thing I didn't quite grasp is  the surgeon said  there is a type of catheter that can be used in the lower groin instead of the hickman in the neck, which can be used right away for hemo? He really tried to dissuade us from going with pd. I mentioned that many of the information sites I read say that pd is much gentler on the body and that I thought my mother might do better due to her advanced age. He responded with a puzzled look and said he didn't know what I was talking about that most people feel just fine after an in clinic HMO treatment! Thats not what I've been reading. Maybe I should talk to another surgeon. I feel we are running out of time, but my mom seems to be feeling OK. Her vitals are not changing from day to day. Her weight is the same. no swelling or shortness of breath(same as before). Another speed bump we hit today is the fact she had an abnormal ekg at the GP's office at the very beginning and the surgeon doesn't want to do any procedures without a cardiac clearance from her primary doc. I'll work on that tomorrow. Thanks every one I'll check in again tomorrow. JayO.

[Epoman]

Hello everyone, thanks for the interest it's comforting to know I have a base of knowledgeable and sincere people to help me get the right answers from these doctors. Here's the latest. We met with the vascular surgeon this morning, he seems to be more interested in setting her up for hemo w/ a graft although he says that her left arm possibly has good enough veins for a fistula. We have a vein mapping appointment on wed. I informed him that we want to go for pd and we want him to examine her for that procedure. Poked around her abdomen and said there should be no reason she couldn't go with pd. He really thinks that hemo in a clinic is the best method. Says he does maybe 5 pd catheters for every 100 fistulas. We are in so cal and and it seems not many people on this side of the valley go with pd. The clinic that her current doc works with is under remodeling at this time and is not offering pd training. The clinic at ucla does offer it but isn't working with the med group my mom belongs to. I'll get more info tomorrow when I visit both clinics and talk with the coordinators. As far as the second opinion goes we didn't get in to see anybody today, I'm hoping to get the name of a good doc tomorrow and setup an appointment. Let's see, oh one thing I didn't quite grasp is  the surgeon said  there is a type of catheter that can be used in the lower groin instead of the hickman in the neck, which can be used right away for hemo? He really tried to dissuade us from going with pd. I mentioned that many of the information sites I read say that pd is much gentler on the body and that I thought my mother might do better due to her advanced age. He responded with a puzzled look and said he didn't know what I was talking about that most people feel just fine after an in clinic HMO treatment! Thats not what I've been reading. Maybe I should talk to another surgeon. I feel we are running out of time, but my mom seems to be feeling OK. Her vitals are not changing from day to day. Her weight is the same. no swelling or shortness of breath(same as before). Another speed bump we hit today is the fact she had an abnormal ekg at the GP's office at the very beginning and the surgeon doesn't want to do any procedures without a cardiac clearance from her primary doc. I'll work on that tomorrow. Thanks every one I'll check in again tomorrow. JayO.

Whether you get the chest cath or the groin cath it can be used as soon as an xray is taken to ensure it is placed correctly. As for the graft just so you know more money is made when a surgeon places a graft over creating a fistula. As for the comment that doctor made "that most people feel just fine after an in clinic HMO treatment!" do me a favor tell him to kiss my ass. If your moms vitals are not changing then don't worry you have time. So don't worry about time there is always emergency dialysis. They can have a cath placed, xrayed, and her on the machine in under a half hour.

- Epoman

[Rerun]

That Surgeon most likely has never walked into a Dialysis Center!  He knows NOTHING of how we feel after a session. 

Common sense tells you that if you are removing toxins and fluid around the clock it will be a lot less stress on your body and "heart" then pulling it all off in 3 hours.   

If they don't have a good PD program and no training facility, then they just don't want to fool with your Mom.

Why did they even give you the option? 

[JayO]

Hello everyone, Sorry it took me so long to get back. I think I have pretty much exhausted all my options for getting this neph to take control of my mothers treatment. Her Pb has gone up to 196/74 over night yesterday morning. Called the doc and requested he put her on something. got lisinipril and lasix. Her ankles are now swollen and but she isn't having trouble breathing. It won't be long before she does. I still have not been able to get her in for a second opinion. Got the vein mapping done yesterday, spent the rest of the day finding a new med group in the network. At this point I believe the only choice I have is to take her into the er at UCLA and have her temp Cathe put in and get her on dialysis. The surgeon and the neph want to put in the temp and fistula at the same time. the doc doesn't want to go with pd because he says she won't due well because of her size about 5'1 143lbs. and diabetic. says she will have to due to many exchanges to get enough clearance. I don,t think the surgeon wants to waste his time doing only a temp. Cathe. At least if we go the ER route then she will be getting treatment while I make the change to a new med group at UCLA nephrology where they have a good home program at there dialysis clinic. The trouble I've been having is finding a primary doc that refers to a neph that works out of UCLA Davida. I think I have a line on one as of late yesterday, I will follow that lead today. Also UCLA nephrology will be familiar with her through the er I hope. So thats where we are, lets see what today brings. JayO

[kevno]

Sorry I can not be any help to you with PD. I was only ever on CAPD, did exchanges 4 times a day, each exchange took around 20Min's. Plus in the UK, we use the Catheter different.  We go on IPD for the first week Which is a machine that does 500mls exchanges every 1 hour, we are on that for one week, no break.
Then we go straight onto CAPD start with 1000mls  if everything is OK go to 1500mls  which is what I was on. But most patients have 2000mls. I have known a couple of patients with 2500mls. Their are different strengths of bags the higher the glucose content of the bag the more it pulls the fluid off. I was on 3 weak bags and one strong bag.

I lasted 12 years on CAPD had 5 tubes in. Which means 10 operations. But I felt very well on CAPD. Been on Haemo for 5 years now, I'm one of the patients who does not do well on Haemo. But I can never go back to CAPD.

If your mom is a diabetic the glucose in the bags could be the reason why the doctors prefer your mom to go on haemo. But just before I had to finish CAPD Baxter's were testing a new bag which used sodium instead of glucose. Do not know the results of those tests.  I was stuck on Haemo at the time.

I'm sure everything will work out OK for your mom.


Yours

Kevno

[JayO]

Kevno,
Mom is type2 diabetic w/ diet control, no insulin. Her blood glucose levels are normal supposedly due to advanced kidney disease.
She really wants to use pd and I've already explained to her she will have to start w/ hemo first. Hoping to get her to the er today for the teso and start dialysis. She doesn't feel really bad yet and has been resisting. Her ankles began to swell and bp went up to 194 three  days ago, got her on lasix and lisinipril. Yesterday bp was 140, ankles not swollen. She is 74 at end of month, I believe if she does well on pd she probably would never need hemo. Saving her alot of pain and her quality of life would be better. Thanks for replying, I appreciate it. JayO

[JayO]

Hello everyone,

Here is the latest on getting my mom started on dialysis. Yesterday we had a cardiac clearance stress test done w/ drugs instead of the treadmill. Today we had a followup appointment w/ the neph. in which I throughly peed him off by standing my ground that mom wants to try pd first instead of getting the fistula put in right away. He said he thought we couldn't handle pd and that my mother will get an infection and that we are making a mistake. As far as her physical state there is no reason she cant do pd. He had to give us a referral to another clinic other than the one he works with because they don't have a home program. I believe it may be that he doesn't have any patients on pd and that he will now lose my mom as a patient. I hope I'm not missing something about how great the risk of infection is. I've read everything I could find, visited the clinic where they have a pd program and spoke with the home nurse, studied the how to steps on the wall chart. I'm sure we can handle it. My mom can do it by herself to. The things I'm not sure about are how hard is an infection to controll? How difficult are they to spot? If anyone can give me some insight it would be greatly appreciated.
Tomorrow we have an appointment for a second opinion w/ a nephrologist, then hopefully on Thursday is the surgery for the neck Cathe and the pd Cathe. Hopefully everything will stay on schedule. JayO.