Fresenius Lab Day

[Charlie B53]

I am still quite new to this Hemo thing.  The dietary restrictions are far far different than PD was.  So far I am still here so I must be doing O.K. at least.  My Potassium is a little bit higher than it ran while on PD, but then I was told to eat more of everything AND taking 60 EU Potassium supplements daily.  No longer.

My Phosphorus is definitely higher, about twice what I used to be on PD.  So much that I have started taking my binders, not just two at a time, now I am taking three or four at a time.  I am hoping to see some small improvement as tomorrow, Wednesday, is Lab Day.  I hope they grade on a curve as we just got home from Dairy Queen.  She wanted a milk shake.  You know that goes, If the Wife ain't Happy............ 

So I, being an intelligent Male of the Species, know that I had better take her to Dairy Queen if I want any Peace in the house tonight.

She got her Milk shake.  I should have stayed home.

I ate almost a whole LARGE order of French Fries.  As if I need that.  Salt, Potatoes, boiled in oil.  Then topped that off with a large Blizzard, white mass quantities of chocolate, and cuppachinno, and peanut butter.  It was GOOD!!!!!!!!!    I fear my Labs may give me up and tell on myself.  But I did take three binders.  As if that will save me.

So I'm wondering, who else cheats once in a while.  We don't do this every month.  But a few times a year.  I know I earned it as I worked my butt off raking leaves today.  Yeah, I know, if I would have done the leaves last Fall they wouldn't need to be cleaned up now.  And it would have been a whole lot easier then as now many of them are half rotted and glued to the grouond, making it much harder to rake them loose, get piled up, picked up and carted off to the burn pile.  The wet ones don't burn so well, but fortunately they are mixed well enough with the dry that they do dry out and burn some enough.  I got about half of the fenced in dogs yard.  I hope to finish that within the next couple of days, then start along the outside of that fence.  The South side is far deeper and extends farther out from the fence.  Way more leaves there.  The winds like to make big leaf deposits along there.

Oh well, I need the exercise.  I've been sitting on my butt most all winter.  Longer actually, as I started staying inside when the weather began cooling too much in the fall.  Poor circulation, I just can't take the cold at all.  I get chilled far to easily and just cannot seem to warm up again.

Sure am glad the weather is better.  I can live with the breeze, just wear something to seal it out and I'm good.

[Michael Murphy]

Charlieeveryone cheats now and then the secret is to sync your cheating with your labs, good labs more freedom bad labs less freedom.  One good news is that there is a gap between them running your labs and somebody seeing them.  What good does that do you ask, the Fresinius company has a web portal where you can generally get your labs the day after your blood is drawn, so you get a head start in fixing your problem, and you get t see if your cheating is making the labs bad prior to being pummeled by the dietician.  To get on this site you need your Fresinius medical record number.  The charge nurse should be able to get it for you.  In my case it took several weeks cause the seem to think my record number was none of my concern.  But they checked with Fresenius and then they gave it to me.  Plus they just added your last months weigh in and out and appears they are going to add the flow sheets some time.  For the record my phosphorus cheat is a 7.5 ounce bottle of coke.  Being Irish my potassium cheat is obviously a potato product like French fries.

[PrimeTimer]

My husband isn't a cheater. At least not that I know of. Well...I give him little cups of Motts unsweetened applesauce for a treat. Not too terribly loaded with potassium. Other than that he just isn't a very exciting kind of guy. We stick with the same renal recipes 7 days a week. Makes grocery shopping a lot easier and there's never any guessing as to what to cook for dinner. For instance, every Wed nite now is "Shepherd's Pie Night". That's our fave!  Every morning it's a 3-egg omelet with bell peppers and onions. Pretty simple and fills you up so you don't feel like cheating. But if we watch tv commercials in the evenings...oh...that is hard! We warn each other to cover our eyes! Don't look, don't look!

[PrimeTimer]

Thanks Michael for telling us about the Fresenius patient portal. Just signed hubby up. Now he won't have to beg his dietician for copies. Sometimes she has them, sometimes not. No biggy except that the only way I am going to know if the meals I cook for hubby are helping him is to see his lab results. We both actually rely on those so we know where/when we went wrong or if any changes we've made were worth it. And I can draw my own smiley faces on them. 

[smartcookie]

I would be the worst patient!  And I already told the clinic dietician that I am not going to tell someone they cannot ever have chocolate cake again...  She actually agreed with me!  Another dietician told it to me like this.  If you stay in the parameters for 90% of meals, then you can have small portions of "banned" items 10% of the time.  We had a patient that was living at an assisted living.  His phosphorus and blood glucose readings were very high.  The staff there tried to tell us it wasn't the meals they were providing, but the pizza this guy ordered once a month.  Turns out, they were feeding him potatoes and pasta at most meals and the pizza he got was bumming one slice once a month.  One slice of pizza once a month would not tear up your labs like his was.   Sometimes you have to dig deeper and treat yourself!!

[Charlie B53]

Got my patient # and signed up at the Fresenius site and see my labs.  I've got some studying to do as a couple of things are wacked out.  enPCR is slightly low at .93.  This one may not be so bad.  But my iPTH is at 1349  THAT needs some attention.  Not knowing what it is, much less how to change it, I got some reading to do.

[Michael Murphy]

I think enPCR is a attempt to find away to determine your protein level,  however I think it calculates the number. By factoring your starting creatinine level with the ending creatinine level.  Then calculating the amount of protein you had.  Supposedly accurate for patients without Redidual Kidney Function (RKF).
Those who still produce urine are eliminating creatinine which screws up the numbers.  I have the center dietician finding out more info but if you pee my advise is to ignore the numbers for the time being.

[PrimeTimer]

Fresenius gave us a little blue book dated from 2009 from AMGEN titled "Understanding Your Lab Values -A guide for patients with chronic kidney disease". It covers all the monthly lab tests and explains everything in easy laymen terms. We keep it at our kitchen table. It's become quite handy over the years, especially at lab time.

[Charlie B53]

I will have to remember to ask my clinic if they can find an extra copy of the book.  It should be quite helpful. 

I looked up PTH, not a lot of information about how or what I can do to change it.  Still looking.

[smartcookie]

PTH is not really something you can change on your own.  The parathyroid hormone, from what I understand, helps regulate calcium.  When the kidneys don't work anymore, phosphorus is not urinated out.  Phosphorus and calcium go hand in hand, so when the phosphorus is high, the PTH signals the body to leech calcium from your bones and teeth to go with the extra phosphorus.  If you can lower the PTH levels by tricking it into believing there is less phosphorus, then you can lower your PTH levels.  Sensipar and vitamin D do this.  This is my limited knowledge of PTH, mind you.  If I am wrong, someone please correct me!  I do know that if you have high phosphorus that cannot be brought down with binders, Sensipar or vit D, you can get a parathyroidectomy to remove the parathyroid hormone. 

[iolaire]

Got my patient # and signed up at the Fresenius site and see my labs.  I've got some studying to do as a couple of things are wacked out.  enPCR is slightly low at .93.  This one may not be so bad.  But my iPTH is at 1349  THAT needs some attention.  Not knowing what it is, much less how to change it, I got some reading to do.

Are they not talking to you about the PTH value?  I've been told there is basically nothing I can do about it myself, so I was started on sensipar and have this week been moved to the IV replacement (so they could test it prior to it joining the bundle). Also prior to sensapar I was getting IV vitamin D, probably something similar to the zemplar I took pre dialysis.  I don't know if I still get that.

[Charlie B53]

All I know is that I am or have never been anywhere near 'Normal' as far as my blood calcium has been at and over the max 10.2 for over 30 years.  Long before I began having any kidney deterioration.  Dr's have run all kinds of test to try to figure out why my calcium has always been so high.  Most of the usual suspects would have been fatal long ago but I'm still here, so I doubt if they were the cause.  Only two years after my kidney failure reached the level I began dialysis did my calcium begin climbing.  I hit a new max for me, a tick over 11.7 when it started crystallizing in almost all of my joints.  That was a bitch. Increasing my Sensipar and two types of Vit D and LOADS of prednisone, it finally began dropping to my now lowest of just under 9.  But my PTH has started climbing, now up to 1395.  Dr increased one of the Vit D's, and again increased my Sensipar.  Will have to wait another month to see if any change in PTH.

It may end up with needing to remove the glands. I will have to give the meds time and see how that goes.

[Tío Riñon]

Thanks Michael for telling us about the Fresenius patient portal. Just signed hubby up. Now he won't have to beg his dietician for copies. Sometimes she has them, sometimes not. No biggy except that the only way I am going to know if the meals I cook for hubby are helping him is to see his lab results. We both actually rely on those so we know where/when we went wrong or if any changes we've made were worth it. And I can draw my own smiley faces on them. 

I'm glad you posted about the Patient Portal.  I completely forgot that DaVita has one.  You can register online if you want immediate access to your labs and other medical information.  Here is the site ( https://www.davita.com/health-portal).

Looks like you can do the same for Fresenius ( https://www.myfreseniuskidneycare.com/web/patient-portal/registration), but you need your medical record #.

It is definitely nice not having to wait until clinic to get the lab results! 

[LorinnPKD]

Another way to combat high PTH is hectorol in your HD line.  Different drugs do different things -- Hectorol activates vitamin D to bring down PTH.  Sensipar stimulates the parathyroid gland itself.  For me, we're doing a combination of both right now to bring my PTH down.

I really like my dietitian.  We had labs on Wednesday and I mentioned all the yummy and thoroughly irresistible chocolate easter candy I had this week that will probably throw my phosphorus out of whack.  She said that they really look more at the trend than the individual numbers.  If the trend is OK, then one bad lab isn't the end of the world.

[PrimeTimer]

Thanks Michael for telling us about the Fresenius patient portal. Just signed hubby up. Now he won't have to beg his dietician for copies. Sometimes she has them, sometimes not. No biggy except that the only way I am going to know if the meals I cook for hubby are helping him is to see his lab results. We both actually rely on those so we know where/when we went wrong or if any changes we've made were worth it. And I can draw my own smiley faces on them. 

I'm glad you posted about the Patient Portal.  I completely forgot that DaVita has one.  You can register online if you want immediate access to your labs and other medical information.  Here is the site ( https://www.davita.com/health-portal).

Looks like you can do the same for Fresenius ( https://www.myfreseniuskidneycare.com/web/patient-portal/registration), but you need your medical record #.

It is definitely nice not having to wait until clinic to get the lab results! 

Altho we talked about it, after I signed hubby up on Fresenius I felt kind of bad, as if I had invaded his privacy or took it away. As a dialysis patient he's already had so much taken away from him and I just wondered if I had perhaps overstepped some boundaries without realizing it. But no...we talked some more and he is glad that I signed him up and said I can look at his labs and print them whenever I want, he wasn't mad at all. He knows that in addition to how he is feeling that it's also important to see the lab results. That way if we need to tweak any of our meals for him we can do so right away. His neph has already congratulated me on lowering his potassium. Well, actually, he did it. He simply chose to eat the low potassium meals I prepare. He didn't have to. He could have been a real butthead about it and refused but then get a lecture from his neph next month. So I cook and he eats. All is well. We think. 

[iolaire]

Thanks Michael for telling us about the Fresenius patient portal. Just signed hubby up. Now he won't have to beg his dietician for copies. Sometimes she has them, sometimes not. No biggy except that the only way I am going to know if the meals I cook for hubby are helping him is to see his lab results. We both actually rely on those so we know where/when we went wrong or if any changes we've made were worth it. And I can draw my own smiley faces on them. 

I'm glad you posted about the Patient Portal.  I completely forgot that DaVita has one.  You can register online if you want immediate access to your labs and other medical information.  Here is the site ( https://www.davita.com/health-portal).

Looks like you can do the same for Fresenius ( https://www.myfreseniuskidneycare.com/web/patient-portal/registration), but you need your medical record #.

It is definitely nice not having to wait until clinic to get the lab results! 

And Davita will send email alerts when the labs come in, usually on Friday for Wednesday draws.

[Rerun]

We use to have LABs done after a weekend once a month.  Then they changed it to ... have one dialysis.... then labs which make your labs BETTER.  I'm convinced they do it to cheat Medicare.  Medicare supposedly monitors labs to see how well the dialysis center is doing.  Thus, change the day and labs look better.  So, if my potassium is 5.3 on labs I have to wonder what it was on Sunday?

Nest time have a small fry with "no salt" and a kid size blizzard. 

[LorinnPKD]

Wait, are Monday labs standard?  We always have them on Wednesday.

They re-drew for my Kt/V on Monday and my number was .1 better than it usually is when we draw on Wednesday, and the Monday was also quite a bit better than the previous draw which was done on a Friday.  (Probably because Monday gets rid of the extra day of toxins?)

[smartcookie]

Lab draw day just depends on the clinic.  And you are right, Rerun.  Medicare has directly tied Medicare dollars to patient outcomes.  Which kind of sucks when you get non-compliant patients and management is always harping about numbers, but it does motivate clinics to give better care and work with the patient more.

[Rerun]

I know... for 25 years you HAD to have labs after a weekend because they could monitor your blood when it was the dirtiest.   So, when they changed I had a fit.  Because where did that hard/fast rule go?  Out the window?  They said it was because their labs couldn't handle them all on Monday.   

I don't mind.... now they don't hound me all the time.  My labs look good .... even though I know they are worse then it shows. 

[LorinnPKD]

This is helpful to know.  Thanks!

[Simon Dog]

Looks like you can do the same for Fresenius ( https://www.myfreseniuskidneycare.com/web/patient-portal/registration), but you need your medical record #.

It is definitely nice not having to wait until clinic to get the lab results! 

I get my Fresenius labs via the portal at: https://go.acumenehr.com/health/portal/Login.aspx    My doc had to set up the login and account for me.

[GA_DAWG]

I swear we must have a really good bunch at our clinic. Besides the techs and nurses, our dietician gives us copies of our lab results every month, and she talks to each patient at least weekly to see if we have questions. Now, if we could just get the AC turned up a couple of degrees to keep from freezing.

[Tío Riñon]

I swear we must have a really good bunch at our clinic. Besides the techs and nurses, our dietician gives us copies of our lab results every month, and she talks to each patient at least weekly to see if we have questions. Now, if we could just get the AC turned up a couple of degrees to keep from freezing.

That does sound wonderful.  Unfortunately, as a PD patient, I only see my dietitian once a month during clinic.  And while she gives me a copy of my lab results, I'm a little impatient having to wait about 3 weeks following lab day to find out my results.  Therefore, the Health Portal allows me faster access to the information and I can adjust sooner, if necessary.  Luckily she is also available via e-mail to answer questions so I don't have to wait until clinic day.

[Xplantdad]

We had the same issue as Tío Riñon-as we did NXStage home hemo....Our issue was taken care of with a phone call to our nurse.  We set up to do our labs the day before we were to meet with the "group". If we had any extra blood tests done-she knew to email us the results.