What's your diet like?

[SweetyPie]

Those of you who have received a transplant, what's your diet like? We all have the fear of gaining too much weight because of the steroids and I heard once you pack on the weight its extremely difficult to take off. Not only is it about physical appearance but with that comes high blood pressure. How did you all do with managing your weight? Any tips? I wonder how I'll be considering the fact that when I am fluid overloaded I feel very heavy and walking/going up the stairs becomes difficult.
I do plan on working out 2 or 3 times a week but my bones are pretty weak due to high phosphorus levels over a long period of time. I am 88 pounds at the moment. And another question, does the medicine itself make you gain weight order does it make you hungry which causes you to eat more and that's where the weight comes from? If it's an appetite thing then I will try to steer clear from sugars and sweets and fill myself with fruits and veggies.

[MooseMom]

I'm happy to share my own experiences, but yours might be entirely different.

I was started off on 30mg prednisone but was weaned down to 5mg within about 6 weeks, so I can't say that I was subjected to high doses of steroids.

My diet returned to normal, meaning that I was now able to eat what is considered to be a healthy diet for most people.  Since I didn't have to worry about potassium and phosphorus any longer, I could eat whole grains instead of white food high in carbs.  I could also eat more fruit and vegetables.

I did gain about 6 lbs, and I don't know if it was due to the pred or to a bigger (normal) appetite.  That's always the million dollar question.  I never had much of a sweet tooth.  I have not had a soda/pop/soft drink/fizzy drink in well over a decade.  I had always liked diet colas, but those are verboten on a pre-dialysis diet, so I just lost the taste for them.  In fact, I hate anything carbonated, even water.

I never had trouble with uncontrolled high bp.  My bp meds worked for years, and post-tx, I am down to only one, that being atenolol.  I seem to remember being told that once you've been on atenolol for as many years as I've been on it, you can't come off of it without there being a problem with your heart rate.  My bp has been perfect since my tx.

I have lost about 20 lbs since my initial post tx period without actively trying to do so.  I am more active, and as I get older, I just don't require as much food.  So, as for tips, I'd say just increase your activity level and reduce your calorie intake.

One thing I did do was to get a personal trainer who worked with me to create a strength training program that I could do at home.  I was concerned about muscle atrophy and bone demineralization due to long term use of prednisone.  I have a set of free weights that I work with.  I incorporate exercise into my daily life.  I swim each day during the summer, and I strength train and/or walk/garden (which is physically more demanding that you'd think) during the rest of the year.  Perhaps that has helped me, too.  In your case, with your weak bones, perhaps some strength training would be just the thing for you, but if your bones are weak because of high phos over a long period of time, that's a different story, and so it might be an idea to ask your tx team what they'd recommend you do to strengthen your bones.

I hope this helped, but if you have any more specific questions, I'd be happy to try to help.

(Again, this post reflects ONLY MY experience.)

[Charlie B53]

My first 3 1/2 years were doing PD and with a constant 'fill' of 2 liters day and night I quickly found out that I could not eat near as much as I used to.  I felt stuffed very soon hardly eating anything.  I have to admit since retiring from work in 08 that I never cut back on my grub.  I had always been very physically active and burnt off massive amounts, but that all ended and I had started gaining way too much weight.  I was over 300, so PD forced me to change how much I ate which started some weight loss.

That's when I decided to also change WHAT I ate.  White flour contains far more calories than most everything else we eat, so I decided to cut out as much as possible.  Very little bread, and seriously try to reduce pasta.

2 years later I had lost 100 pounds.  Unfortunately the amount of purines I was eating, seafood, bacon, hot dogs without the bun, smoked meats, drove up my uric acid and calcium, crystallizing in most all my joints. Gout and/or pseudo gout.  Far too many months of hell until the Dr ordered 30 mg of prednisone and an anti-gout med.  They worked, but I had put on 40 pounds which I am still trying to get rid of.

I'm half way there.

[SweetyPie]

I felt the same way when I was on PD my parents became frustrated that I wouldn't eat because I always felt "full". Year after year I lost more and more weight until I had to get a feeding tube. I hated it. I worked harder on increasing my appetite and a year and a half later it was taken out.
I love pasta and I do like bread. So it will be a challenge once I get my transplant.

[iolaire]

I had always liked diet colas, but those are verboten on a pre-dialysis diet, so I just lost the taste for them.

Just wondering what is wrong with Diet Soda for transplant?  My phosphorus is low so they want me drinking soda and prefer it to be diet. (I hate diet taste and also believe it’s way worse for the body.)

My diet has not changed much but I have a fairly conservative diet. I’m up maybe 8 pounds. The main side effects of prednisone for me were bad sleep and zits on the stomach. Those went away as the doseage went down to 5 mg.

[SweetyPie]

Everyone seems to get their dosage lowered with prednisone.

[MooseMom]

I had always liked diet colas, but those are verboten on a pre-dialysis diet, so I just lost the taste for them.

Just wondering what is wrong with Diet Soda for transplant?  My phosphorus is low so they want me drinking soda and prefer it to be diet. (I hate diet taste and also believe it’s way worse for the body.)

There's nothing "wrong" with diet sodas in general, nor with diet colas in particular, after tx.  I was just trying to say that that the only soda I had ever had before I knew my kidneys were so bad was cola/diet cola.  As we know, colas are bad pre-dialysis/dialysis because of the phosphorus.  Since I had never liked other kinds of sodas/soft drinks, it meant I stopped drinking soft drinks altogether, which is probably a good thing.  Now, 14 years later without having any soda at all, I've lost all taste for it.  Regular cola tastes like a shedload of sugar, and diet cola tastes like a shedload of chemicals.  Cutting out all soda became a natural part of my post tx "diet", which is what the OP was asking about (unless I've misunderstood, which is certainly possible!).

I did experiment with mixing sparkling mineral water with, say, pineapple juice or lemons.  I tried all sorts of things but never found anything I particularly liked.  I think maybe now I have a mental block against any sort of carbonated beverage as they remind me of those traumatic pre-D years.  My husband ordered a diet coke the other day, and when he went to drink it, he couldn't tell if it was diet or not.  He asked me to try it, and I just couldn't do it.  I got really anxious and agitated!  Isn't that weird?  I think so.

If you need more phos post-tx, is there anything else you could consume besides cola?  Maybe more beans or something else that has more nutritional value?  What's causing your phos to be so low?  Any idea?  That's really interesting.  Is it the meds?

[Charlie B53]

20 some odd years ago the Wife was first pronounced Diabetic.  She instantly switched to Diet soda's.  I tasted them and couldn't stand the aftertaste.

Pasty has drank this 'Poison' for 20 some odd years now and recently has been diagnosed with water on the brain.  Seems either her body makes too much brain fluid or does not re-absorb enough, end result is the pressure in her head is too much and causing serious enough problems a drain has to be installed.

Has these 'Poisons' caused this?  The Jury is still out.  There are numerous articles about people that regularly consume artificial sugars to have serious medical problems that the Dr's are NOT able to diagnose.  Many of these articles clearly spell out that most of these undiagnosable problems resolve AFTER a period of abstinence of these poisons.

I have tasted all of these and of them all only sucralose did not give me any obvious ill taste.  So I made the mistake of using it.  Within three days I was on the toilet with uncontrollable runs.  And I do mean water.  After a couple of days of that I started looking for a reason why.  Come to learn I am one of the small percentage that sucralose, as it is digested in some of us kills off EVERYTHING, much like a strong antibiotic.  This effect lasted almost three months before I became solid again.  And believe me, I was eating loads of enriched yogurts, probiotic capsules, you name it, in attempt to regrow intestinal colonies.  Never making that mistake again.

So I have finally convinced the Wife, along with her Dr's help, to stop using the fake stuff and only to use small amount of natural sugars.  White sugar is bleached, so that alone should tell us it is to be used in moderation.

All that said, I actually drank a WHOLE CAN of soda yesterday.  Cheap generic Lemon/Lime.  First one in years.  And I liked it.  Which means I probably shouldn't have had it.

I'll find out at tomorrows weight-in.

[iolaire]

I had always liked diet colas, but those are verboten on a pre-dialysis diet, so I just lost the taste for them.

Just wondering what is wrong with Diet Soda for transplant?  My phosphorus is low so they want me drinking soda and prefer it to be diet. (I hate diet taste and also believe it’s way worse for the body.)

If you need more phos post-tx, is there anything else you could consume besides cola?  Maybe more beans or something else that has more nutritional value?  What's causing your phos to be so low?  Any idea?  That's really interesting.  Is it the meds?

I don't know for sure honestly - it may be the meds I do remember reading over the paperwork when I got home an lots of the meds affected the minerals I was having problems with.

Phosphorus was the one item they did not recommend food for, just soda (they wanted diet because of the sugar content of normal) and when that didn't have enough of an effect the put me on Phos Neutral.  Still my levels are a bit low 2.1 (low) Reference Range: 2.5-4.5 mg/dL.  Post transplant Magnesium and Phosphorus was low where Potassium was high.  When I was trying to eat to adjust those it was sort of hard to balance Magnesium rich foods versus low Potassium food.  Now they don't bug me on the minerals as much but I still take Phos Neutral and Magnesium.  But last month they told me I could take less Magnesium if I had soft stool concerns, I didn't think it was too bad at the time but a few weeks ago I did make the choice to decrease the Magnesium and I think it helped a bit.

Re Soda I've maybe drank 7-8 12 packs of Coke/Pepsi in the 9 months post transplant.  I feel bad drinking it as I'm a firm believer that that much sugar is bad.  But I do believe sugar is better then the non sugar chemicals.  I also feel bad since my wife starts asking if we should have a soda as that is a bad habit to get into - but when I drink soda I do want to share it as a treat with her...

Forever water has been my drink of choice I have no problems drinking 2.5 liters per day with no change in habits and if I'm at a restaurant eating I will easily take 4 plus refills of water if its offered.  I just upgrade my work water container from an 18 oz. hydro flask to a 22 oz. hydro flask cup and probably will continue to fill that 3-5 times per day

[MooseMom]

Oh, that's interesting, iolaire.  Thanks for explaining that.  I do know that the meds can leech magnesium from the body, but I had no idea that phos could be a problem, too.  I can't imagine, as a renal patient, a phos level being to low!  LOL!  My magnesium is within normal range, but barely; it is always on the low side.

I can understand the dilemma about soda.  It's so ingrained into our diets, isn't it.  I don't know why, but if I know something is bad for me, I just lose a taste for it.  I don't feel like I'm depriving myself, rather, I am just not interested.  I drink water and iced tea that I brew myself.  I drink a small glass of milk each day because I need the calcium.  I've been off fruit juice ever since I got my transplant.  I don't know why.  Maybe my taste buds have changed.  I cannot get on with anything that is too sweet, but I do like a bite of something sweet-ish after dinner.  I might have a square of dark chocolate (the higher the cacao content, the better).  Just the smell of milk chocolate makes me run away.

It's odd how someone's taste preferences can change so dramatically!

I hope you continue to make progress in getting your Mg and your phos to levels you're comfortable with.  I'm sure that with time, this will grow to be easier for you.  Again, congrats on the tx!  It's still marvelous news!

[iolaire]

I cannot get on with anything that is too sweet, but I do like a bite of something sweet-ish after dinner.  I might have a square of dark chocolate (the higher the cacao content, the better).  Just the smell of milk chocolate makes me run away.

I'm not anti sugar all the time, but do minimize it.  When I have sugar I prefer "purer" sugars like straight up sugar based candy (hard, gummy etc..), less so things like pastries and ingredients that have sugar added but should not.  For example I detest it in places it shouldn't be like tomato sauce.  For a while Aldi sold those small cans of tomato sauce for 25 cents USD but they had sugar in it so I said we had to stop buying it because its ruins the taste.  But luckily after buying a bunch of small cans of non sugar added tomato sauce at Lidl (far away from home) we rechecked Aldi and now it no longer has the sugar...  (Recently Aldi really expanded in our area of the Northern Virginia Suburbs within 5 miles of DC, we have three stores within maybe 3 miles.)

My work has lots of sort of "healthy" snacks and drinks. I intentionally do not drink the juices because of the sugar but even the more "healthy" granola bars are loaded with sugar and I do eat those... I.e. Nature Valley Apple Crisp 42g bar with 10g of sugars!  I only occasionally eat the Chobani yogurt (with fruit) because that's loaded with sugar as well.

[MooseMom]

Yep, once you start really focusing in on the labels, it's rather startling to see how much sugar there is in sauces, etc, so you're spot on in hunting for those without the sugar content.  I'm so glad that manufacturers are getting the message!

I'm not anti-sugar all of the time, either, but we should at least know what we are eating so that we can make informed choices!  If you are going to eat something that is "healthy" but still has quite a bit of sugar, at least you know it, you can enjoy it and then know that that's probably all you should have for the day.  It's one thing to have a Chobani yogurt with fruit as an occasional dessert, but to have one for breakfast, then a "healthy granola bar" as an 11:00 pick-me-up, and then a pastry after lunch, and then a couple of gummy bears on the way home from work, and then another yogurt after dinner...well, that adds up quickly. 

So, good on you for paying attention to what you're eating!  That's half the battle!

I'm curious about your phos/mg levels, so if you wouldn't mind, the next time you get those tested, will you post the results?  Thanks!

[iolaire]

I'm curious about your phos/mg levels, so if you wouldn't mind, the next time you get those tested, will you post the results?  Thanks!

Sure, I've been needing to put things in a spreadsheet, here is this year:

	2.5-4.5 mg/dL	1.6-2.3 mg/dL	3.5-5.2 mmol/L	8.7-10.2 mg/dL		<-- reference range
Date	Phosphorus, Serum	Magnesium, Serum	Potassium, Serum	Calcium, Serum
1/3/2018	2.1	1.8	5.3	9.6
2/16/2018	2.1		5.2	10	travel week	<-- Same day 1, same draw different vial
2/16/2018	2	1.7	5.1	9.5	travel week	<-- Same day 1, same draw different vial
3/2/2018	2.1	1.7	4.8	9.7	travel week
3/23/2018			4.8	10.3

February I had three trips to the west coast, that resulted in Creatinine close to 1.1 versus the norm of 1.4 but completely put my Tacrolimus levels out of whack both low and high so I had lots of tests in April as we tried to get it back to normal.

[MooseMom]

I see what you mean by low phos!  That's really odd, or maybe it isn't?  I wonder how many post tx patients have the same problem with low phos.  Maybe it is more common than I've realized.  What is the result of low phosphorus?

Your mg looks like mine...low side of "normal".

When are your next labs?

[iolaire]

  What is the result of low phosphorus? ... Your mg looks like mine...low side of "normal".

re:
https://www.livestrong.com/article/411516-side-effects-of-phosphorus/
Most people get plenty of phosphorus, says the University of Maryland Medical Center, from meals that include grains and protein-rich foods. But diabetics, alcoholics and people with anorexia or a parathyroid gland disorder can develop hypophosphatemia -- low blood phosphorus -- and may require supplementation to avoid weak bones, weight loss, anxiety and fatigue. Consuming more phosphorus than you need can cause serious side effects. Do not supplement with phosphorus unless you are under the supervision of a doctor.
I do also have parathyroid issues.  I'm now on 60 mg Sensipar instead of 30 mg and we hope that will continue to improve thyroid issues, I think the PTH has been going down a bit now.  The surprising thing to me is there was little improvement with the added Phos Neutral pills.  These levels have been in this range for the 9 months since transplant with each just getting a little better and closer to normal. 

I did labs last Friday and am still waiting for the results but the PA emailed to tell me that the Creatinine (1.4) and Tacrolimus (9.1) look stable/good but I can not see the full results until Wednesday.  I see my nephrologist on Wednesday as well.  I thought last Friday was my 9 months labs as well, but the PA email made it sound like those might still be coming so I'll probably need to get labs again on Friday or next week. 

FYI: after getting labs almost every week last month I'm very happy I went with the transplant center nephrologist as him and his PA are doing a great job of follow-up.  So far last month I was in touch via phone or email with the PA almost weekly.  The PA is nice and gives good information and doesn't seem as overloaded as the PA that worked with the transplant team at the transplant center.

[SweetyPie]

So I got my parathyroids taken out a while back which means my pth hangs around 90 which is very low. My phos hangs around 6 which is higher than normal range. I'm afraid what will happen after trabsplant because I see your phos is very low. I was in bad shape when my bones were very weak that I couldn't walk. Don't want that to happen again because after transplant I want to travel and take more classes for school

[iolaire]

So I got my parathyroids taken out a while back which means my pth hangs around 90 which is very low. My phos hangs around 6 which is higher than normal range. I'm afraid what will happen after trabsplant because I see your phos is very low. I was in bad shape when my bones were very weak that I couldn't walk. Don't want that to happen again because after transplant I want to travel and take more classes for school

I would not worry about it to much.  I'm sure if my bones were weak they could increase the Phos Natural more (or harass me about the soda's so I drink more).  Definitely have me having deficiencies in the parathyroid right now doesn't keep it up higher.  On dialysis it was up just below the high level (maybe 7?) so I took binders but didn't worry about it a lot.

The key with the transplant stuff is everyone has unique experiences, like dialysis, so you can get a general idea of possible complications but its hard to know if it will affect you, or if the complications even affect the person describing them. 

I hope the phosphorous will only be a temporary problem for me and with more time it will settle out.   Also the Phos Natural is one pill I've been bad about taking, only recently did I get it setup well in my schedule so I was taking it dependably twice per day.  Prior I was trying to take the second dose with dinner and we don't really have a dependable dinner schedule, now I take it with a 3 PM snack and don't miss it as often.

[MooseMom]

Oh yes, of course, iolaire.  Parathyroid gland problems.  I should have thought of that.  Such problems affect the calcium/phos balance.  Thanks for educating me on that.  I never had real PTH issues, so that had not occurred to me.

Do you think low phos will be an ongoing issue for you?