What is wrong with me??

[monrein]

Pasta with a cream cheese sauce, flavoured with herbs, Mrs Dash and some parmesan was a dinner staple for me too.   

Do you have a recipe for a cream cheese sauce that doesn't call for a lot of butter and milk?  I've tried looking online for a pasta cream cheese sauce, but they all have so much more dairy.  Could you tell me more about this dish?  My husband loves pasta and so do I, but he likes his tomato sauces and me, not so much.  Thanks!

MM, I just made up my own by using ingredients I could eat...so, I'd take a portion of cooked pasta...not someting like penne that needs a load of sauce to cover everywhere then I'd take a skillet, add some olive oil plus a bit of butter, throw in some minced garlic and diced onion, perhaps some green onion as well and get them softened on not too high a heat so the garlic doesn't burn (a tiny amount of diced pancetta could go here too but it is salty so I usually skip it)   Then toss in the pasta and get everything heated through.  Remove from stove and then add the allotted cream cheese that has been creamed up with herbs (basil, parsley, chives,) or even some pesto for ease.  Herbed Boursin cheese could also be used sparingly for good flavour but again watch the salt.  Toss everything together then add fresh ground black pepper and a controlled amount of parmesan.  Toss again and eat.   This is not a very wet sauce obviously so if you want you could add a little bit of milk but I try not to dilute the flavours too much.   Crostini made from stale baguette is good here too.  Mix olive oil with crushed garlic, let sit for an hour or longer (I often have this around for cooking because I like garlic)...brush onto stale white baguette sliced half an inch thick and then dry out in a 300 degree oven for 15 minutes or so.  Can be kept in a tin for a week or so.

[tbarrett2533]

my 

The only difference between you and I is....................

I do not have any children
I make $50 more a month
I have NO FAMILY at all
I have only been doing this for about one year (one year will be 9-23-11)
My boyfriend who I only have been with for about 8 months pays for everything and takes pretty good care of me 
I have $60K in Sally Mae loans (all for a degree so I could have a career which I managed to have for all of 2 years before Kidney failure took that away from me)

I do not even know what to say to you to make you feel any better, because I feel  the same exact way and I am (as I am sure you are too) so tired of people with  all their working organs telling me to stay positive!!!

 

[lmunchkin]

Yea Lisa, my organs work fine, so stay "NEGATIVE".  But as far as my husband, I do try to keep him upbeat and positive even though he has his moments too! He knows I do it out of love, just as many others who have functioning organs try to do!  Sometimes we just don't know what to say to those who suffer this disease and yes somethings we may say sounds "stupid", but it is said with good intentions.

T. Barrett, some of us who do caregiving to our loved ones do our best and bend over backwards for those with chronic illnesses!  We may not have what you have, but we do know about all the affects this has had on most of you, so please don't take a comment of "staying Positive" the wrong way! When I say it, I truly want to help pull these people out of their deep depression!  Some have actually tried to commit suicide.  I firmly believe that my husband would, If I were not here to keep him up!

I know alot of you are not crazy about what we say, but please, give us the benefit of the doubt! We are here for all of you!  This is not easy for any of us, with CKF or the caregivers.

lmunchkin     

[Lillupie]

as for pd diet, it sucks, i won't sugar coat it.  my dietician kept telling to make fresh food, cut down on processed stuff (lots of salt/potassium), and keep fluid intakes to a minimal.   I'll admit I never really listened, i'd sneak in a big mac once in a while just to treat myself and worry about the consequences later.

as for the baxter delivery, maybe ask your hpr about a lock box.  I got one from baxter, so each delivery i would leave a house key in the lock box, attach the lock box to the back door handle, and the delivery guy would just let himself in, drop off my supplies, lock the door and leave.  that way you won't have to stay home for the delivery (only issue is trust, do you trust the baxter delivery guy in your house unsupervised).

whether you're on pd or hemo, dialysis just plain sucks.  both methods of dialysis has their strengths and weaknesses, but both are time consuming (factor in setup of machine, undergoing treatment, then strip down of the machine after).

Yes this does suck...but on that note I was always told to eat potassium (I guess a major perk for PD dialysis).
As for the Baxter guys I am not totally sure I can trust them because everytime I have a delivery there is a different delivery guy there.

[Lillupie]

I have personally decided that the entire mindset of the renal dietitian needs to change entirely.  They seem to be so focused on a culture of "NO".  They are armed with lists and lists of what we cannot/should not have but never with what we should do.  Then they say "eat less processed food" but don't give us any REAL WORLD steps we can take to do this.  I'm with everyone else - I work a 40 hour a week job, with commute time and lunch that turns into 52 hours per week.  Add in 12 hours a week at dialysis, taking care of a household and God forbid, some time for fun and that doesn't leave a hell of a lot of time to spend in the kitchen.

I think I may have found a step in the right direction.  When I was fishing around this site for ideas on how to lower my phos, I came across a book entitled "Dialysis Dining on the Go".  It has easy to understand information about Red Light, Yellow Light and Green Light foods for many dining out situations and ideas for general cuisines (Chinese, Italian etc) I am REALLY looking forward to receiving this book.  Here is ordering information for anyone who may be interested:

Thanks so much for your interest in Dialysis Dining on the GO! I would be happy to assist you with ordering information. We accept check payment only and total cost, including shipping would be $12.95. Check payment can be made payable to Dialysis Dining on the Go % Allyson Almeida, 1130 Riggs Ct, Washington, PA 15301. Once check payment is received, a book will be mailed to you.
 
Let me know if you have any additional questions.

Warmest Regards,
Allyson Almeida, RD, LDN
Renal Dietitian
Dialysis Dining on the Go!

I will be happy to post a review of this book when I receive it.

Yes please let us know how you liked this book.
My question to you is "HOW DO YOU WORK 40 hRS a week and still do dialysis?? How do you feel?"

Lisa

[Lillupie]

There are also a couple of podcasts on www.rsnhope.org that feature interviews with renal dieticians that you might find helpful.  For instance, instead of getting a cheeseburger with everything, ask for a plain burger with all condiments on the side.  That way you control how much you use (and how much sodium you get).

The problem with processed foods is all of the additives, but more and more people are not wanting all of these additives, so it is becoming easier to find processed foods without them. For instance, my local grocery store stocks bacon and sausages that are uncured, so NO PHOSPHATES!

Maybe you could sit down with your renal dietician and tell her exactly what you have told us.  Her job isn't just to tell you what you have to restrict.  Her job is to help you incorporate your renal diet into your particular lifestyle.  Tell her that you don't have time for making every meal from scratch, and ask her to give you a list of acceptable easy-made meals.  Ask her point blank to tell you what you CAN eat considering your time and budgetary constraints.  I guarantee you that you are not the only PD patient on planet Earth who has little time and/or money, so she should get off her butt and work WITH you to find practical options.  You shouldn't have to do her job for her.

As for the plastic vs glass, well, there is some truth to that, but that's good advice for everyone, not just renal patients.  But maybe you can find yourself some glass jugs and decant whatever is in plastic jugs into the glass ones (like juice, obviously not carbonated drinks).

Thank you for all of your response Moosemom,
 I have been getting hamburgers, but after the last few years, im soo sick of them. ITs just that its really hard to not eat anything that is pre-packaged because nearly every single thing in the grocery store is pre-packaged. If I avoid anything that is pre=packaged then I just wont eat. lol, i Know im emblishing. But it does seem to be true....Soooo much is pre-packaged. Do you mean pour what comes in a plastic bottle into a glass jug?

THanks,
Lisa

[Lillupie]

My question for you is about the diet mess.  What are your lab results?  Because really, I ate what I wanted, as long as the bad stuff was in small amounts and my dietitian didn't have a word to say.  As long as the lab results are good, what difference should it make? 

And what's up with the can nonsense?  I

 
 My labs are usually pretty good, except for last month when I came back from Germany. lol. The phos is usually in the 4s. and my pb is usually pretty normal. But that doesnt stop the dietiection from nagging and it seems like she puts me in the same group as people with really high bp, and high phos.
 Yeah i think the can thing is going over the line. She said something about having Arizona Sweet Tea (which isnt a Cola dark), as having too much phos because of the can!!

Lisa

[Lillupie]

Perhaps somewhere in the universe there is a person with kids, a full-time job, a perfect diet, loads of exercise, and somehow they manage to seamlessly work dialysis in without missing a beat. Those of us here on Planet Earth know that there is a breaking point where something has got to give. I like BrightSky's advice. How did your mother cope before you could drive? How is she planning on coping when you get married? I have lived in Detroit so I know that is one town that is purposefully built to force residents into car ownership, but people do manage with public transport, even there.

Are you on disability? Are you willing to take a job from home as a call center rep? I received a message about this just last week, you would make a small enough amount to keep your disability, but perhaps it would be an important first step to building the life that YOU want for YOURSELF.  ((((Lisa))))

Well before our house in Detroit got broke into, we lived in Detroit. Before I drove she was able to take the bus to and from work. At some point they cut back the buses and got rid of a few routes. When this happened, it just so happened that I was driving, and she then insisted on that I drive her home from work (which at the time is only 7 miles away). Until January, she took a cab usually (depending on the weather) to work. Starting in January, she got too scared to walk to the bus stop, so she started waking me up to drive her to work.
 When I get married, she is hoping to have retried by then, when wont be until June 23, 2012 is my wedding date.
 Yes I am on disability. THat is how I get the whopping $600 a month. I would not mind being able to work from home. I just really do not have any clue on how to go about doing that.

Thank you for those suggestiongs,
Lisa

[Lillupie]

I am so sorry Lillupie, I thought you were still in Germany enjoying yourself,
and I did not know the stress you are under.
I do hope this stress does not cause you further Lupus-flare-ups

and I send you my best wishes, Kristina. 

Aw thank you Kristina 
 No I left Germany and my now fiance July 3. I was glad not to be under the stress while I was gone.

[Lillupie]

i was told that we should not drink anything out of a plastic bottle, just glass. THe plastic bottle has phos.

Who  told you  this???   

The unit renal dietction (sp?). She apparently dont like cans either. She had said something about an Arizona Iced Tea to avoid drinks from a can because of the phos and she says the same about plastic bottles. Im thinking "are you serious? is there really that much phos in a can or plastic bottle v. glass?" I do know that glass is more expensive. I know by a few cents, but still. I just personally think that is going a little overboard. Then again, what do I know.

Lisa

[Lillupie]

http://kidney.niddk.nih.gov/kudiseases/pubs/NutritionLateCKD/

Pasta with a cream cheese sauce, flavoured with herbs, Mrs Dash and some parmesan was a dinner staple for me too. 

 Thank you for the link. How do you do a cream sauce with the pasta? Did you mix it with anything else? To get it creamier.

  Was the dietician talking about canned goods???  I know that things like canned iced tea or lemonade can contain stuff we don't want and too much reliance on canned things can add a lot of sodium and phosphorus.   
I hope this doesn't sound like I think it's easy...I don't...I know it's not but I do think that you will maybe feel a bit better if you can get ahead of at least the food part.

I dont usually drink too much tea, if any out of a can. But pop I do. She hasnt said too much about pop per se. But she perfers that we make tea homemade, which I do not think I have the time to do. YOu know with tea bags.

 

One other thing...oh crap, I should have known I couldn't just stick to one thing...please try to do your logs more regularly, I know I know....sounds like I didn't hear how tight time is...BUT if you want PD to keep working as well and efficiently as possible then this becomes a priority. 

I'm hoping things get better for you Lisa.   

Yea those logs are a major problem. After the last few years, now they are starting to ask for them. I just have kept forgetting about them. Kind of like outta sight, outta mind.

Lisa

[Lillupie]

I had lists of the foods I liked that were OK, veggies, fruits etc and I'd only buy things on that list and I made sure that my protein was of high quality....egg whites were a staple, so was chicken. 

Lisa, I've got a list the dietician gave me when I was in-center, a list of foods you CAN have. What I did with it was run off copies and use it as my shopping list. If you'd like a copy I can send it to you.

is this for hemo or Pd? You can send it to me.
LisaMarieB1982@gmail.com If you get the chance.

[Lillupie]

i was told that we should not drink anything out of a plastic bottle, just glass. THe plastic bottle has phos.

Who  told you  this???   

Maybe you misheard/misunderstood, or your dietician misunderstood or didn't convey this correctly. I've heard this advice with respect to bottled iced tea and certain other drinks. It's more a rule of thumb than anything to do with the bottle itself. Cheap iced tea in plastic bottles, like Nestea and Brisk, made with tea extract and concentrates and things like that, tend to have added phosphates (quite a lot). The better, brewed iced tea like Lipton PureLeaf tends to come in glass bottles.

You can probably also rely on the ingredient list for things like that.

Lemon Brisk:
WATER, HIGH FRUCTOSE CORN SYRUP, CITRIC ACID, INSTANT TEA, SODIUM HEXAMETAPHOSPHATE (TO PROTECT FLAVOR), NATURAL FLAVORS, PHOSPHORIC ACID, SODIUM BENZOATE AND POTASSIUM SORBATE (PRESERVE FRESHNESS), CARAMEL COLOR, CALCIUM DISODIUM EDTA (TO PROTECT FLAVOR), RED 40

Lipton PureLeaf - Lemon:
BREWED TEA FROM LIPTON TEA LEAVES, SUGAR, CITRIC ACID (PROVIDES TARTNESS), NATURAL APPLE EXTRACT (COLOR), NATURAL FLAVOR, PECTIN

It might also apply to fruit juices/punches (see Hawaiian Punch).

Now that you have explained it this way, It makes a little bit more sense now.
 Yeah I knew about the fruit punch all along. I stay away from that as well as the Pepsi and colas.

Lisa

[cattlekid]

Hello Lisa,

I actually feel much better now that I am on dialysis than I did late last year/early this year right before I started.  I try to keep my fluid gains down (e.g., today I came in only .9 over dry weight) so they don't have to take off too much fluid at each treatment.  I go to dialysis on third shift, keep up with work email and projects until about 5:30 PM then rest for the remainder of the time.  I usually feel fine after treatment, drive myself home, have dinner and then rest for the remainder of the evening.  Sometimes, if they take off 2 kilos or less, I don't even have to rest afterwards and then I'll go out and run errands with my husband. 

I feel that I am very fortunate in that I have a relatively sedentary job - I joke with my husband that my entire job consists of sending emails and sitting in on conference calls.  So it has been relatively easy for me to integrate dialysis into my life.  Also, I live five minutes away from my dialysis center, which helps as well.  I think it also helps that I have no other health issues other than ESRD. 

Heck, even when I was in the hospital earlier this week, I was able to keep up with my work and take a conference call from the hospital room LOL

My question to you is "HOW DO YOU WORK 40 hRS a week and still do dialysis?? How do you feel?"

Lisa

[jbeany]

 My labs are usually pretty good, except for last month when I came back from Germany. lol. The phos is usually in the 4s. and my pb is usually pretty normal. But that doesnt stop the dietiection from nagging and it seems like she puts me in the same group as people with really high bp, and high phos.

I wouldn't change a darn thing if it's working for you!  If your labs are good - why change what your diet consists of?  Granted, we should all eat healthier whenever we can, but I would ignore the nagging - or flat out tell her you are happy with the results and don't really want to talk about it!

[cariad]

If you want to work part time from home making about $9/hour, I would call Ticket to Work and see if they can connect you with the place that called me. Karol's daughter also received a call with details about this work, so perhaps she kept hers. I'd give you the information but I deleted the message.

Ticket to Work: 1-866-968-7842

I am assuming you have not been sent a ticket, but if you are willing and able, then they should work with you. I would google the program to get an idea how it works, then call them to access the services. Good luck.

[MooseMom]

I agree about the Arizona Iced Tea...it's not so much the plastic jugs, rather, it's about the phosphates in the tea itself.  It's a processed product, and frankly, it's not really good for people whose kidneys work well! 

While it is true that we should avoid processed foods (again, like renally normal people), not all foods are processed with phosphates, so if you become an avid label reader, you'll do better.

Nothing's easy.

[lmunchkin]

You see, Lisa, there "AINT ANYTHING WRONG WITH YOU" my dear!  They use to nag my husband all the time too, but he never did any talking, cause I did it for him!  Yes I do alot of advocating for him, and know that at the moment, you do it alone!  But in June, my dear, I truly believe you will see a HUGE change in the way you are treated!  Im hoping that He will be a pillar of strength for you! Im not only talking about physically strong, but mentally, emotionally and BY YOUR SIDE strong!

You need someone taking care of you for a change!  You have put up with alot, Lisa.

lmunchkin
 

[mcclane]

Lisa :


   I'll admit I never really listened, i'd sneak in a big mac once in a while just to treat myself and worry about the consequences later.

The kicker to this is. THey are ok with Big Macs! Would you believe it. Especially without cheese! She told me those really arent bad! So, pretty much anything that is healthy for you is bad, but fastfood is ok. 


Its like they would rather me have a Big Mac and fries then a ham sandwich because the ham is processed! and dont get me started on Peaunut Butter and Jelly because I think Peanut Butter and Jelly (once in awhile) is way healthier then a Big Mac.






EDITED:  Fixed quote tag error - jbeany, Moderator

the only thing with the big mac is the sodium, but man, does it taste good ! 

[mcclane]

as for pd diet, it sucks, i won't sugar coat it.  my dietician kept telling to make fresh food, cut down on processed stuff (lots of salt/potassium), and keep fluid intakes to a minimal.   I'll admit I never really listened, i'd sneak in a big mac once in a while just to treat myself and worry about the consequences later.

as for the baxter delivery, maybe ask your hpr about a lock box.  I got one from baxter, so each delivery i would leave a house key in the lock box, attach the lock box to the back door handle, and the delivery guy would just let himself in, drop off my supplies, lock the door and leave.  that way you won't have to stay home for the delivery (only issue is trust, do you trust the baxter delivery guy in your house unsupervised).

whether you're on pd or hemo, dialysis just plain sucks.  both methods of dialysis has their strengths and weaknesses, but both are time consuming (factor in setup of machine, undergoing treatment, then strip down of the machine after).

Yes this does suck...but on that note I was always told to eat potassium (I guess a major perk for PD dialysis).
As for the Baxter guys I am not totally sure I can trust them because everytime I have a delivery there is a different delivery guy there.

my baxter delivery guy was the same guy, so i had no issues there.  but yeah, if it is a different person each time, my level of trust wouldn't be so high.