New & Struggling

[CTexas]

Hi! For months I was struggling with hives and a rash. Tried everything and could not get it to go away.  Went to a couple of doctor's , no luck. The third doctor did a blood test and I was diagnosed stage 5 kidney failure.  I had no clue, kidneys problems never crossed my mind and no one in my family has had them.  I spent the first week of April in the hospital and just completed 1 month of home diaylsis. I am trying to find my way between using the cycler and manual; which is better and most effective??. The whole diet issue is driving me crazy, every list says something different.( I am not diabetic nor do I have high BP.) I am still fighting itchy skin at night, which every doctor seems to ignore. The stage 5 diagnosis is so scary but at the same time I have had people say to me " well, you don't look sick!". I am 53 but very active. I am just all over the place right now and trying to find my way.

[kristina]

Hello CTexas and welcome to IHD.
I do understand the confusion about diet and what is right and what isn't.
The only way I could figure it out a little, was by comparing all these papers and the food they recommend etc. Every list says something different, but if you compare them all very carefully, there are certain foods about which all lists agree and these are the foods we can eat without problems. All other foods can be eaten now and again in small quantities.
Talking about the recommendable foods, I found that if I eat 3-4 cooked Asparagus every day (a natural diuretic), it keeps my kidneys still functioning a bit. But one has to balance very carefully because of potassium etc and it is all a learning process.
To assist my kidneys, I also drink every day half a glass of half a freshly pressed lime, mixed with water to keep my kidneys still functioning. (Hopefully it continues like that for a little longer).
I send you my best wishes from Kristina.

[iolaire]

Welcome to the group.  I'm glad you look healthy, hopefully that is a sign that as you get dialysis under control you will be able to live a sort of stable life around dialysis.

If you have some residual kidney function you might have some time to grow into the diet.  I think that I've read that PD users also have a bit more freedom, especially in regards to the liquid limits.

To start with I'd really focus on the mineral that are causing side effects for you, for example the itchy skin is a common side effect of phosphorus.  Are your phosphorus levels high? Are you on a phosphorus binder?  If so a good start would be to focus on cutting back on phosphorus first - i.e. no dark sodas and all the commercially processed/prepared foods that are high in phosphorus.

Keep track of your lab results and talk those over with your dietitian and learn so you can interpret your results yourself and head off problems, most large commercial labs (Fresenius, DaVita, LabCorp, Quest etc) now have online access where you can view your results without depending on your health care team.

[CTexas]

Yes, my phosphorus levels are high. I do have a prescription for binders but I don't have insurance and they $1300 for the prescription. I am hoping Medicare will kick in but they say 3 months.

[iolaire]

Yes, my phosphorus levels are high. I do have a prescription for binders but I don't have insurance and they $1300 for the prescription. I am hoping Medicare will kick in but they say 3 months.

Sometimes the dietician might be able to help you with binders samples. 

Otherwise there are some binder alternatives that might work depending on your other lab levels, like Tums (high in calcium but cheap and over the counter):
https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/phosphorus-binders-(phosphate-binders)-and-the-dialysis-diet/e/5307

The doctor might be able to prescribe an older style of lower cost binders in the short term.  There are prescription assistance plans for most high cost binders like Renvela but I sort of doubt that they would get the price down into an affordable range - but it would be worth looking into it.

Try to leverage the services of your dialysis provider, they should have a social worker, dietician, and insurance coordinator who are available to help figure out how you can get the treatment you need at what you can afford.

Good luck

[kickingandscreaming]

Welcome.  Check with your cliinic and dietition to find out if there are some "deals" available to help you with your meds.  You are eligible for Medicare and that should help a lot in paying your bills.  PD is totally different from Hemo and there really aren't any dietary restrictions (in general) because PD does a better job of removing excess potassium.  You still need to use phosph binders to protect your bones and arteries from calcification.  If you still urinate, then there are very few fluid restrictions.  "Dark soda" is not the issue.  It's cola and Dr. Pepper type drinks that are high in phosph. .  Root beer is a "dark soda" and it is quite fine to drink.  Good luck.

[CTexas]

What about vegtables? I have seen list if do's and don't and then one today that said all fresh vegetables are fine.

[Marilee]

Hi CTexas, what a whirlwind you are living in right now!

My hubby started Peritoneal Dialysis at home about a year ago. Is that the kind of home dialysis you're doing? There's really no difference between using a PD machine to cycle fluid versus doing it manually (it all comes down to how long the fluid is dwelling). If you are sleeping through the night with the machine doing its thing, that's ideal because it gives you most of the day without messing with dialysis. If the machine wakes you up too often (slow draining, for example) then manual may be best in order to get a good night's sleep.


I know what you mean about the diet confusion. Kidneys aren't binary: They don't fail in the exact same way for everyone and they do a huge variety of things, so dietary restrictions need to be tailored based on your bloodwork, any edema, your overall health and whatever caused your kidneys to falter. So there's going to be adjusting as your doctor(s) watch you and the numbers month after month.


Excess Phosphorus did indeed contribute to my hubby's itchy, rashy skin. We ended up doing a bunch of stuff (Using only All Free and Clear laundry detergent, giving up fabric softeners and bleaches; washing with Dove for Sensitive Skin; calming the itch with Aquaphor and/or Eucarin Lotion), and we modified our diet to get the Phosphorus numbers down. I wrote up everything I learned about Phosphorus and put it on the web ( https://mylowphosdiet.wordpress.com/ ) because like you, I got confused by the guidelines. I only talk briefly about vegetables and fruits because we don't have a problem with the ones we eat, but I do list those. If you ALSO have high Potassium (another 'P'-word), then there are several fruits and vegetables that need to be moderated (like bananas, tomatoes and beans). But if your potassium levels are not too high, enjoy!

Hope that helps and welcome to the board.

[Ken2018]

If you are doing home dialysis, I don’t think there is a waiting period.

[Paul]

 

Hi CTexas Welcome to the site.

WRT itching: It has been mentioned on this site several times, so you may have already read this but the best treatment is turmeric with a little black pepper (eaten, NOT rubbed in). You can add it to your food or get it in pill form.

WRT diet: The thing to remember is that you need to keep your phosphorus and potassium intake low (potassium is the more important). However you don't want these too low, as that is as bad for you. Your clinic should give you monthly blood tests and tell you how well you are doing. If they are any good they will tell you the range you should be in and then tell you what your levels are and where they fall within or without of that range. To find out how much potassium and phosphorus in an item, use Google. For example, if you want to know how good or bad apples are, do two Google searches. "potassium in apples" and "phosphorus in apples". At first this is a bit of a chore, because you have to look up everything. But you soon learn what is good or bad and only have to look up new things.

WRT binders: I was prescribed calcium carbonate. If those work for you, you can get them really cheap on Amazon (a few cents per tablet) and for me they work really well - at my last blood test my phosphorus level had gone dangerously low!

WRT "all fresh vegetables are fine": This is a dangerous lie. Some fresh vegetables are really high in stuff that is bad for you. Basically list the veg you like and do the "how much potassium/phosphorus" searches on each one. However the trick is : Never roast, fry/stir fry, or steam your veg - always boil. And preferably overcook. Drain your vegetables before eating, never drink the juice. This includes meals with veg in the mix, eg stews, casseroles, hotpots, chilli, etc.. When you cook something like that, don't boil the veg with the meat, cook the veg separately, drain it, then add to the meat before serving. I'll admit it does not taste as good, but less good food is better than dead.

However I'm assuming you are on PD, which I am told is more effective than HD. Once you have got rid of the large quantity of potassium and phosphorus that will have built up while you were unaware of your condition, take careful note of your monthly blood tests. It is easy to go too low (I managed it on HD) and this is as harmful as too high.

[MooseMom]

Yeah, be really careful about vegetables!  Tomatoes made my potassium skyrocket.  But Kristina, I know, is a vegetarian and somehow keeps her potassium within normal levels, so like others have said, the diet is a really personal component; it is best to rely on your bloodwork to make good decisions about your diet.

The diet is often one of the most confusing and frustrating things about renal failure, but once you suss out what works for you, it becomes second nature, believe it or not!

Do you have access to a renal dietician?

[Charlie B53]

Welcome to IHD.  This is the olnly place that you can ask direct questions of fellow dialysis patients and get many responses how we each manage.

PD can work very well for some people.  Generally using the Cycler is more effective than doing manual exchanges.  The dwell times on the Cycler are often shorter than manuals which keeps the sugar level of the dialysate higher.  The greater difference than the blood sugar is what drives the water collection, the amount of fluid taken off. The number of cycles and the number of bags are easiloy adjusted for the individual patient.  It is a very good system.

PD can also be far more effective at removing potassium than Hemo so the PD patients can have much more freedom with their diet.  PD took so much potassium out of me that I had to take 60 units a day of supplement.

Check your labs.  If your potassium runs low then eat more tomatos, bananas, potatoes, etc..  If high then of course reduce these in your diet.  Pay strict attention to those labs.

THE most important thing on PD is to keep your hands CLEAN.  And be absolutely careful with all connections.  EVERY fitting most keep treated as if your very life depends on keeping it clean and sterile.   3 1/2 years all went well until I had to screw up and must have touched a fitting while setting up my Cycler.  The resulting infection from Hell had me in the hospital long before morning.  And after fighting that for three months my cath had to come out and I've ended up on Hemo.

Don't make my mistake.

Take Care,

Charlie B53

[LorinnPKD]

The diet really does feel impossible at first.  A lot of the recipes out there are for people dealing with diabetes just because that's a huge part of the dialysis population.

Seconding that if you have access to a renal dietitian, they can be wonderful at helping you navigate the limitations.  A good dietitian will go through your labs with you, ask questions about what you typically eat, offer options.  After a few months of labs, you'll start having a pretty good idea of how to stay within your limits and places you can splurge a little. I still eat cheese and chocolate from time to time.  I still have the occasional glass of Dr Pepper if my phosphorus is in range.  (Binders don't attach to liquid forms of phosphorus, I learned to my surprise!)

Phosphorus binders for the itchy-itchy.  I take Renvela, which is $1600/mo here without insurance.  Ack.  There's also a new generic as of the past six months that may be cheaper out of pocket.  I freaked out the first month when I realized I'd be out of pocket, so my neph gave me some samples to tide me over for a bit.  But there are alternatives.

When I started Medicare, it took about three months for the approval.  My Part B gap from Cigna backbilled just fine but I was out of luck coverage-wise for those months when it came to prescriptions (Part D).

[Paul]

(Binders don't attach to liquid forms of phosphorus, I learned to my surprise!)

Do you have a link to the science behind that? I'm asking because, to me, this does not make sense, at least as far as my A level chemistry knowledge goes (should be the other way round, binders only work when phosphorus is in the liquid form - once dissolved in stomach acids).

[PrimeTimer]

  Welcome to ihd, CTexas! Sorry you are having a rough start...you will start to feel better but takes a while. Ask your nurse for the number of the clinic's social care worker. They ought to put you in-touch with someone at the clinic who can order your binders (they might even have their own in-house specialty pharmacy) and have it be covered. The social care worker or even the Nephrologist will know more about this. Believe me, the Nephrologist WANTS you to have access to binders and together they can arrange to get you some. The cost is outrageous, nobody can afford that price and in the meantime, they want your phosphorous levels to go down because of your medical condition and the only way is to take binders (and watch what you eat).

[X3nt]

I've had that itch.. not sure if it's the same but mine was "Uraemic Pruritus". My Doctor gave me a prescription for Renvella and the itch became manageable. It did not completely go away but it made me sleep at night.

[ezilu]

Yes, my phosphorus levels are high. I do have a prescription for binders but I don't have insurance and they $1300 for the prescription. I am hoping Medicare will kick in but they say 3 months.

So as others have already mentioned high Phos WILL cause itching. I've found it also cause numb prickling in my feet. Phos is quick to go up and hell to bring down it can take months of extra treatments. Why? Because of the of the molecule size. The mainstay of Phos is pulled in the first two hours of dialysis, it goes exponentially down from there. So longer dialysis runs aren't effective in reduction. The best way to pull it down is extra treatments as in 4 days a week instead of 3 days. This is from a hemo POV, I can't speak for PD.
Extra strength Tums 750 is a perfectly good binder, cheap effective "calcium carbonate" as long as your calcium is in range and not over the recommended limit. I find it's far more tolerable than most binders. Renvela gave me a dry mouth and horrible migraines.
Try layering your binders; take 1 before a meal and one after, another in the middle if your meal is particularly high in phosphorous.
Other things that help are lowering your PTH, there are medications for that. Hyperparathyroidism will drive up your phos (and vice-versa) trying to balance low or calcium. Ultimately it pulls calcium from your bones and teeth, in excess it causes phosphorous nodes that can be fatal should they go necrotic, calcification of arteries and so on. An increase in vitamin D will decrease it as well SO in addition to taking tums, ask your Neph about increasing your vitamin D and get some sun when you can.
As far as diet is concerned; animal proteins; ie meat and dairy and seeds top the list of high phos foods. Think anything seed or nut based. Coffee, whole wheat, beans, every seed you can think of.
Check your labels for phosphates, anything with the word phos. Keep your portions of meat to the size of your fist try to stay away from processed meats, like deli meats, hot dogs etc. Some all natural brands you can get away with.
Here's an odd one, full-fat dairy, and higher fat dairy is lower in phosphorus than low fat! The phos is stored in the whey not the fat, you're better off putting half-half on your cereal than low-fat milk. Another rule of thumb the older the cheese the higher the phosphorous Gouda is higher, Cottage Cheese lower, Velveeta, "American cheese" and other highly processed cheeses should be avoided. Lucky for us full fat is on trend. Full-fat yogurt and cottage cheese are easier to find these days. And for you diabetics out there, fat is more satiating, fat slows the digestion of sugars and those sugars are stored in the whey.
Highly processed food in general such as frozen entrees should be nixed.
As far as the Dialysis Diet in general, you want to minimize your fluids, and really stay away from foods that are high in both potassium and phosphorus. Exotic fruits, starfruit, dragonfruit, passionfruit, mangos, bananas. Nightshades; potatoes, tomatoes, tomatillos starchy vegs tend to fall in this category.
If your phosphorous is in range, you might look into dialyzer allergies, have your filter flushed with 2 bags of saline. Request IV Benedryl during your run, most clinics have it or try oral for home D. Request a better filter.
Best of luck, the first few months are certainly the most difficult but know that there are changes that can be made to your RX to make things easier.
And with federal funding, FDA fast-tracking a cure is just around the corner! I hope.
One more thing there are some decent renal diet apps available to help you keep track of your intakes.
Phos is generally 1000
Potassium 1800-2000

http://healthyeating.sfgate.com/five-foods-highest-phosphorus-5260.html
https://www.kidney.org/atoz/content/phosphorus
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194

[ezilu]

What about vegtables? I have seen list if do's and don't and then one today that said all fresh vegetables are fine.

Most vegetables have only 40% phosphorus bioavailability. Animal sources are where you need to be careful.

Here's a good study with graphics.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4361095/

[Paul]

Ezilu - Thanks, that is a really useful post on phosphorus.

Although WRT "Try layering your binders; take 1 before a meal and one after, another in the middle if your meal is particularly high in phosphorus.": I would say that if you need three binders per meal, you really should be looking at reducing the quantity of high phosphorus rather than taking that many binders.

[LorinnPKD]

I just learned, though, that the generic Renvela may have less of the active ingredient than regular Renvela.  I switched to generic this March and since then my phos has been creeping up when it used to be well within range, and I'm not doing anything different.  A clinic staffer told me that several patients using generic Renvela have been taking 3 with meals to make the levels work out. 

So now I'm up to three.  And I've been instructed by my neph np to eat red meat daily, phosphorus be darned, to bring up my ferritin.  I have gold-star hemoglobin levels (13+!) but my ferritin's in the tank, so that's more red meat, more generic Renvela for me!

[kickingandscreaming]

I would say that if you need three binders per meal, you really should be looking at reducing the quantity of high phosphorus rather than taking that many binders.

I have to take 3 or more binders with each meal because I am required to eat LOTs of protein to attempt to raise my albumin level which persists in the high 3.x range and is wasn't remotely close to 4.3 where it ideally should be.  So I can't reduce my protein intake without going into a "wasting" state.  So I have to take quite a few binders.  Renvela no longer cuts it for me so I have to take 3 Velphoros wiith each meal.

[Charlie B53]

IIRC very soon CMS is requiring clinics to supply binders to all renal patients on dialysis.  This will immediately remove the financial burden of paying anything.

 

K&S - I try to keep hard boiled eggs in the refrigerator for a some what healthy snake and a little protein.  I've cut my coffee intake to only the one large cup in the morning but I have added two heaping teaspoons of protein powder which sort of acts like a creamer.  I've always drank my coffee black but the added protein is good for me so I've learned to accept it.  Warning - not all protein powder are low in Phos.  You have to check the labels.  If it isn't listed, skip that brand.  Vanilla is about the only flavor I found that is low, many of the others listed much higher in Phos.

[Paul]

I try to keep hard boiled eggs in the refrigerator for a some what healthy snake

Is that a typo, or are you talking about a pet?

[Simon Dog]

I try to keep hard boiled eggs in the refrigerator for a some what healthy snake

Is that a typo, or are you talking about a pet?

Perhaps he is saying he feeds the eggs to his snake to keep it healthy 

[cassandra]

     I feel terrible for not correcting Charlies tiny spelling error, and all the confusion that caused.


   


Love, luck and strength, Cas