LT72884
Head Chef
My uncle has the same thing, so i could ask him and see what he says. My uncle can not have any salt at all.
Prayers and info please!
- Thread starter DawnT
- Start date
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DawnT
Sous Chef
Thank you LT, any information helps!!
LT72884
Head Chef
i just talked with my mom (ICU nurse and IV team) and she says that a very low in salt and potassium diet. Potassium is a salt and those type of minerals control muscle activity. so when you get to much potassium in your blood it will effect your heart thus a heart attack. Thats one of the main reasons for dialysis is to clear out all the high levels of potassium becasue your kidneys are not filtering it for you. a lil info for the forums. Talking with your doctor is the most important thing my mom says. So ask alot of questions
we are still lookin for some recipe's
we are still lookin for some recipe's
Dawn,Just a quick update. We have found a new kidney doctor right here in town. Jim sees him this Friday. Jim has also decided to try hemodialysis when the time comes. There is a new dialysis center that is opening next month just a few miles away from us. So this will be easier for us when the time for dialysis comes, it's right near Walmart!My stress level has dropped a bit as we have adjusted to Jim's diet needs, as long as he is happy, I'm happy. The only stress I have at this point is that DS is out in Northern California, and has managed to break his foot!
KIDS - you gotta love 'em!!
I've been running back and forth here trying to get my dialysis decided so have'nt checked in for a day or so..Before Jim commits to hemo find out about his access site and then find out about the PD cath..Find out your options, ie: hemo access cannot be removed they are afraid of damage to the upper arm..While a cath can be removed..Find out what is going to be done with each, hospital or office procedure, dangers, etc...Then decide, hemo entails so many hours a week and so many times a wee, PD can be done at home but is time consuming and there is a lot to learn..If you are able ask about the PD and the cycler for at night..Don't let them put you off find out all you can..Ask, ask and ask again..Right now that is what I'm going to have to do as this PD is driving me crazy with carying this fluid around..That is what bugs me..Hemo three hours and I'm free and no extra fluid to lug.. If you have any questions, PM me and we can talk.
cj
Bilby
Executive Chef
Kadesma is right Dawn. Except the tube for haemo can be removed as I have had mine removed. Generally though they will try to create a fistula where the artery and vein are surgically combined and unless problems occur you are stuck with it. But it is all your own body.
I hated having the extra fluid in my body for CAPD (manual bags done four times a day). Felt like a beached whale all the time. It was better with the cycler (APD) as I could go "dry" ie, no remaining fluid in the peritoneum. But everything will be individual to Jim and until he actually experiences any of it, it is just an assumption that he will prefer x to y. It all sounds worse than it is really but the feelings you go through with it (not just the emotional but the physical) are not something you can determine until you actually do it and by then you have committed. Just know that there are ways and means to make Jim more comfortable for the most part if the chosen method isn't how he imagined.
I hated having the extra fluid in my body for CAPD (manual bags done four times a day). Felt like a beached whale all the time. It was better with the cycler (APD) as I could go "dry" ie, no remaining fluid in the peritoneum. But everything will be individual to Jim and until he actually experiences any of it, it is just an assumption that he will prefer x to y. It all sounds worse than it is really but the feelings you go through with it (not just the emotional but the physical) are not something you can determine until you actually do it and by then you have committed. Just know that there are ways and means to make Jim more comfortable for the most part if the chosen method isn't how he imagined.
DawnT
Sous Chef
Thanks for the info LT. Tell your mother thank you, also!! Kades- Jim has actually been thinking about this for a while( which shocked me). He really wants to try the hemo for a few reasons- 1. He would have the opportunity to ride his motocross bike (slowly) at home. 2. He would still have use of his stomach muscles to lift.( he feels the cathater would inhibit that) 3. There seems less chance of infection at site. 4. The tie-down time is less 3-4 hours, 3x's a week compared to 6-8 hours every night. Plus the AV Fistula would be done in the doctor's office(which is right in the hostpital, 2 miles from our house.). 5. The new dialysis center is 18 miles away, too.
). He really wants to try the hemo for a few reasons- 1. He would have the opportunity to ride his motocross bike (slowly) at home. 2. He would still have use of his stomach muscles to lift.( he feels the cathater would inhibit that) 3. There seems less chance of infection at site. 4. The tie-down time is less 3-4 hours, 3x's a week compared to 6-8 hours every night. Plus the AV Fistula would be done in the doctor's office(which is right in the hostpital, 2 miles from our house.). 5. The new dialysis center is 18 miles away, too.Bilby
Executive Chef
Okay a couple of points about Jim's thoughts.
1. Don't see why any method should impact his riding ability!
2. If you have a fistula or an AV graft, lifting with the arm it is installed in may not be permitted. You can't afford to stuff it up as this is your access point to health and removal of fluid and toxins. Stuff it up and you are in hospital. Same with the PD catheter. When you do PD, you get sent boxes of fluid (well we do here) and you need a spare room or similar to store it all. The boxes contain 24 litres (?) of fluid. I still had to lug them around at least a little. The delivery man would move them around properly once a month for me but any small moves were mine. Each bag for me was 6 litres. I needed four of them for a session at the end. My cat weighs 10kgs, who I also needed to lug around at times, like vet trips and getting in at night. (I used to pick him up with my non-AV graft arm when I was doing haemo.)
3. Possibly true but the real thing is more that with PD, any infection of the site is much more dramatic. Had infections in both accesses. Blood poisoning is blood poisoning though irrespective of where it hits.
4. He will be asleep during the night time PD - if he is suitable for it. If doing CAPD with the bags, the time commitment is substantially less. Think it took me half an hour per bag generally. So that would be two hours a day. Also, his haemo time may be more than 3-4 hours per session depending on his weight, how well he dialyses, how good his access is, and how much fluid he is carrying. I used to do five hours on a Sunday to counter my life style and didn't have the opportunity to do anything more than the basic four hours on Tuesdays and Thursdays due to work. Four hours was considered standard here. A lot of the men did four and a half to five hours per session. Ignore the location for the installation. It is only a once off. Or should be.
5. CAPD is wherever you happen to be that can offer some hygenic facilities. (Although some of the Aborigines in the North West do their CAPD under a tree according to the nursing staff!) I used to do it in the sick bay at work. APD is done in bed at home.
There are other issues that need to be considered in making the decision but he has a whole lot of time still to gather the information. Ask if he can sit in with the different dialysis sessions and see what he is up for a bit more.
1. Don't see why any method should impact his riding ability!
2. If you have a fistula or an AV graft, lifting with the arm it is installed in may not be permitted. You can't afford to stuff it up as this is your access point to health and removal of fluid and toxins. Stuff it up and you are in hospital. Same with the PD catheter. When you do PD, you get sent boxes of fluid (well we do here) and you need a spare room or similar to store it all. The boxes contain 24 litres (?) of fluid. I still had to lug them around at least a little. The delivery man would move them around properly once a month for me but any small moves were mine. Each bag for me was 6 litres. I needed four of them for a session at the end. My cat weighs 10kgs, who I also needed to lug around at times, like vet trips and getting in at night. (I used to pick him up with my non-AV graft arm when I was doing haemo.)
3. Possibly true but the real thing is more that with PD, any infection of the site is much more dramatic. Had infections in both accesses. Blood poisoning is blood poisoning though irrespective of where it hits.
4. He will be asleep during the night time PD - if he is suitable for it. If doing CAPD with the bags, the time commitment is substantially less. Think it took me half an hour per bag generally. So that would be two hours a day. Also, his haemo time may be more than 3-4 hours per session depending on his weight, how well he dialyses, how good his access is, and how much fluid he is carrying. I used to do five hours on a Sunday to counter my life style and didn't have the opportunity to do anything more than the basic four hours on Tuesdays and Thursdays due to work. Four hours was considered standard here. A lot of the men did four and a half to five hours per session. Ignore the location for the installation. It is only a once off. Or should be.
5. CAPD is wherever you happen to be that can offer some hygenic facilities. (Although some of the Aborigines in the North West do their CAPD under a tree according to the nursing staff!) I used to do it in the sick bay at work. APD is done in bed at home.
There are other issues that need to be considered in making the decision but he has a whole lot of time still to gather the information. Ask if he can sit in with the different dialysis sessions and see what he is up for a bit more.
DawnT
Sous Chef
Jim was told that he would be able to lift with the avf but not have anything lay on it. Riding the motox bike is alot of muscleing about of the thing, jumping it and lifting if you dump it on the ground. You certainly raise alot of good points and I am going to have Jim talk to the doctor about them tomorrow. Thank you for the extra brain for thinking.
.Bilby
Executive Chef
I used to sleep with my head on my AVF! Right up until it created a natural fistula in my upper arm and then it was like having a baby's heartbeat constantly thumping in my brain! Found it awkward to lie on my stomach with PD. As to the bike.... well - pass!!!! Also, swimming was banned with a PD tube and taking a bath was discouraged too. Everything I know of course is from an Australian perspective. Standards and procedures may differ in the US. I never got into the comparative research. Took most of my info from my doctor, the nursing staff, other patients and my brother (a GP). But if the bike is a HUGE part of Jim's life, it may be the one point that decides choice, provided the choice is truly available. Not everyone is suitable for all types of dialysis.
Fisher's Mom
Executive Chef
It's true - there is no "better" form of dialysis. It really depends upon what suits your hubby's daily routine the best. My daughter was on both. Initially, she was on hemo which she didn't tolerate well. She was small and we had a bad time with the fistulas - they kept clotting off. Also, when you are on the machine, a fair amount of your blood volume is out of your body at any one time. She had trouble maintaining her blood pressure on the machine because of that. Your husband is a grown man so these may not be issues for him. Also, she had to limit her fluids and be much more careful with her diet on hemo than with PD. The up side was that we could go there 4 times a week for treatment and then not deal with dialysis the rest of the time.
Bilby is right - there are a lot of supplies that get delivered to your house every month for PD. So you need a designated place for it. We only used the machine at night - never did CAPD. Since she was a child, it was fairly easy. The machine has an alarm that will let you know if the tube is kinked or the fluid isn't warm enough or the fluid didn't drain out properly. It allowed her to have more fluids and a little more flexibility in her diet since we were dialysing nightly. We could still take off one night a week, as I recall. For an adult, if you do CAPD, you will be carrying around a belly full of fluid all day, which you will notice. For both types of PD, you will have lots of supplies around, you will be doing dialysis daily for the most part and you will have a tube sticking out of your belly that you need to keep very clean and dry.
Definitely explore both options before you decide. They will probably even put you in touch with some other patients that you can ask questions of, if you wish. Have Jim ask a lot of questions, even if he thinks they are trivial or silly. It's the little things that enrich our lives, so he will want to know how dialysis will impact this.
Bilby is right - there are a lot of supplies that get delivered to your house every month for PD. So you need a designated place for it. We only used the machine at night - never did CAPD. Since she was a child, it was fairly easy. The machine has an alarm that will let you know if the tube is kinked or the fluid isn't warm enough or the fluid didn't drain out properly. It allowed her to have more fluids and a little more flexibility in her diet since we were dialysing nightly. We could still take off one night a week, as I recall. For an adult, if you do CAPD, you will be carrying around a belly full of fluid all day, which you will notice. For both types of PD, you will have lots of supplies around, you will be doing dialysis daily for the most part and you will have a tube sticking out of your belly that you need to keep very clean and dry.
Definitely explore both options before you decide. They will probably even put you in touch with some other patients that you can ask questions of, if you wish. Have Jim ask a lot of questions, even if he thinks they are trivial or silly. It's the little things that enrich our lives, so he will want to know how dialysis will impact this.
DawnT
Sous Chef
Thanks you guys, we definately have alot to ask the doctor when we go today! Of course, I will let you all know how it went, asap.
ChefJune
Master Chef
Prayers going out, pronto, Ms. Dawn!
I would be consulting a nutritionist immediately to get help for providing him with all the nutrition he needs, as tastily as possible. Once you get the info of what he needs to be eating, come back here and we'll flood you with recipes.
and good luck!
I would be consulting a nutritionist immediately to get help for providing him with all the nutrition he needs, as tastily as possible. Once you get the info of what he needs to be eating, come back here and we'll flood you with recipes.
and good luck!
ChefJune
Master Chef
nonononono! don't say that! One of my dearest friends has had two kidney transplants. he did very well for more than 10 years on the first one, and had decided not to seek a second one, since his kids were then grown. However, his oldest child -- his daughter -- insisted she was going to give him one of hers. He wanted to forbid that, but I and some other saner folks talked him into graciously accepting it. Everyone is SO glad we'll have Kenny around a good while longer.
DawnT
Sous Chef
Thank you, ChefJune. That was definately Not one of my more sane moments!! We are hoping this new doctor will be more helpful and give us much more than the old one did. Thank you for the prayers and concern, I know it is heartfelt. Dawn
stargazer021
Senior Cook
Dawn,
First off, let me say I am sending you a big, warm Michigan hug. Secondly, I agree with other posts who have suggested you consult a dietician. I've been a nurse for 28 years and I can tell you that nurses & doctors do not have anywhere near the nutrition knowledge that a dietician has. I might suggest you ask around and see if you can find a dietician in your area who specializes in treating patients with kidney disease. Maybe you could call the local dialysis center and ask if the have a dietician on staff. Best of luck to both of you.
First off, let me say I am sending you a big, warm Michigan hug. Secondly, I agree with other posts who have suggested you consult a dietician. I've been a nurse for 28 years and I can tell you that nurses & doctors do not have anywhere near the nutrition knowledge that a dietician has. I might suggest you ask around and see if you can find a dietician in your area who specializes in treating patients with kidney disease. Maybe you could call the local dialysis center and ask if the have a dietician on staff. Best of luck to both of you.
DawnT
Sous Chef
Thank you stagazer021, I am waiting to hear from the dietician as I type!
DawnT
Sous Chef
Our meeting with the new kidney doctor went great. Jim came away from there feeling better about himself, the disease, and his doctor then ever before! The doctor has ordered an ultrasound, made changes in meds, talked to us like we were people that didn't have a degree in medicine and actually took time to answer questions Jim had, explained what things meant and why he(doc) wanted to try things. The doctor also asked me how I was doing, if I needed more info in order to help Jim, and set up to talk to a dietician. What a difference!!
Bilby
Executive Chef
Sounds great!! Having a good relationship with the doc is critical to good management. Mine now gives me a peck on the cheek when he sees me. (Mind you the first time he did it was before the transplant (except for the obligatory Christmas peck of course) and while he hadn't worried me much with his words, THAT had me quite worried!!!) Good that he is onto the meds straight away. Eye for detail.
ljmyers
Assistant Cook
Dawn,
First let me say that you and your husband are in my prayers. Second, I think it is great that you are being so supportive of your husband that you eat only what he can eat but I would suggest you eat some protein. Your body needs it and you could eat the protein while out of his presence so as not to tempt him. If you are not eating any dairy, I do hope that you are you taking a calcium supplement.
First let me say that you and your husband are in my prayers. Second, I think it is great that you are being so supportive of your husband that you eat only what he can eat but I would suggest you eat some protein. Your body needs it and you could eat the protein while out of his presence so as not to tempt him. If you are not eating any dairy, I do hope that you are you taking a calcium supplement.
DawnT
Sous Chef
ljmyers, Thank you. We are both having protein now. The doctor upped it to 65-75g per day (forgot to mention that in previous post!) He also told Jim to have 8 oz of milk a day. I on the other hand could not be without my icecream!!! One scoop, 2x a week. :P Jim has italian ice or a popcicle then.
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