Labs and what they mean.

[Matt'sMom]

Hello

I have been watching this site off and on for a while now, but now I need advice and information. I have no idea where to start or how much history to give here.

I hope you can follow what I am saying here. I am not sure of terms and spelling used in the renal world.

My son Matt is 15, rather small for his age and of course thinks he is invincible.

We have to travel over 150 miles to get to a Neph so it is not easy to get time to ask him to explain what everything means. I am tired of once we do get there he is booked up and we do not have the time to really talk.

Matt’s lab work has really changed over the past month. I am talking Creat going from 2.2 to 5.5 and BUN 45 to 93 now. I was told the jump in Creat was from an infection but the labs did not change after a round of antibiotics.

There are other changes also that I do not understand Thyroid something was brought up as being elevated. I do not really understand the BUN and that is where my quest for information comes in. I need to find a site or book that will explain to me in terms such as “lab work for dummies” terminology. If someone has any information that can lead me in the right direction I would apperceive it.


Matt hates the renal diet he is on. His Phosphorus is 5.6 even taking 2 Physlo- 3 times a day.

Another questions. Matt is suppose…. to self Cath 6 times a day, he is rebelling on that now after having to do this for so many years…… and it seems he ends up with more infections from the caths then when he goes though a time period of NOT cathing. During the span of years he did Cath faithfully he developed allergies to several medications used to treat infections and now we are down to a few oral and ineffective meds or IV meds when he does develop and infection.

Anyone have any advice on how to cope with teenagers with CKF? I am open to any and all suggestions. I am use to going at this alone…. Thought I was doing ok until this past few weeks, now I am open to anything.

[Black]

...Thyroid something was brought up as being elevated. ....

There are many posters here far more experienced w/ the CKF issues but I have battled thyroid problems for more that 20 years and will be happy to share what I've learned.

First of all, you need to know what was elevated -- his TSH or T3/T4, or thyroid antibodies?

Chances are they only tested TSH. If that is the case, ask for a complete thyroid profile which includes tests for:
T3
T4
Free T3
Free T4
Uptake
thyroid antibioties
computed T7

If they leave out any of those it will NOT be a complete picture of his thyroid health. You will probably have to push them to do the complete profile first, but not doing so may just prolong the time before he is finally accurately diagnosed.

If they recommend taking thyroid meds, INSIST that he be given natural thyroid (my personal preference is the Armour brand) and NOT the synthetic, which despite drug company claims to the contrary is incomplete, and ineffective for many patients.

[DaVita RN]

Thank you for participating in the DaVita.com discussion forums. I am a DaVita moderator in the area of dialysis. Information on lab values related to kidney disease can be found on the National Kidney Foundation website at http://www.kidney.org/kidneydisease/ckd/knowGFR.cfm.

The response of this moderator is not an attempt to address a specific
condition. Please note that the DaVita.com discussion forums do not provide medical advice or professional opinions about specific conditions. The purpose of the discussion forums is to provide an opportunity for individuals to discuss end stage renal disease and related topics. The discussion forms are not a substitute for professional medical care. For questions or concerns about health issues, seek medical advice from your local physician, nephrologist or dialysis facility. If you believe you are experiencing conditions that require urgent care, immediately seek assistance from the nearest emergency room or call 911 for further assistance.

[Maria]

You also need to clarify if it's the thyroid level, or the Parathyroid level the nephrologist was mentioning.

The Parathyroid gland secretes a hormone, and in the dialysis world, we monitor the PTH level, or Parathyroid Hormone level. The Parathyroid gland plays a role in bone metabolism, the regulation of calcium and phosphorus in bone health. To say it simply, when the kidneys don't work well, the PTH level can get out of balance.

Following the diet for dialysis can be one of the most difficult aspects of renal disease. However, there are many, many resources to help you, and we're working to expand the diet and nutrition section of this website.

Best wishes to you and your son. Don't stop reading and learning. You are your own greatest advocates.

[carson]

being a teen on dialysis

I was Matt's age when I first went on PD. I missed the first part of the first semester at school and had a hard time making it up. Thanks to my idiot uncle and his family, pretty much the whole town knew i was sick and had started dialysis. Nobody knew what PD was, so they all assumed I was on hemo. Talk Talk Talk. I would be late sometimes in the morning because I didn't have a lot of energy (no Epo at that time), and then I'd be late for class at lunch because I had to squeeze in an exchange. The kids all talked about me behind my back. My friends stopped being my friends, infact they were the ones who started all the rumours. One guy asked if it was true I had a tube in my stomach. I was of course very embarrassed about it (in those days we didn't disconnect from the drain bag so I wrapped it all around my waist, rolled up the bag and tucked it into the front pocket of my pants) and said no, so he grabbed my little tube and gave it a yank "what's this?" he asked. I wanted to die. From then on it was all down hill. I started skipping classes. I lied to my folks and told them I had a "spare" when I had a class, then I'd "go to school" when I did have my spare and just hang out in the library. Luckily that was only for 9 months, as I had my first transplant which lasted 15 yrs. Not that the transplant helped that much with kids and school.
Truly, I felt like a freak. Nobody understood what was happening to me. To this day I still feel like a freak sometimes. I will have lapses of insecurity even though I know there's no real reason to have any. Because my illness happened when I was an already vulnerable teen, it really influenced who I am now.
I understand how your son feels. I still have trouble with my diet, and it isn't even very restricted! I forget my binders more than anything, but now that I'm approaching 40 I am afraid of what's to come. I want to stay as healthy as possible, so I'm trying really hard, but sometimes I get so tired of being policed my entire life that the rebellious teen comes out in me and I go the opposite way.
Being a sick kid blows. I feel for him. It will get better as he matures, but you're looking at 5-10 yrs for that to happen!!
If there's anything more I can share, just ask.
best wishes to you and Matt....Lisa
PS - I wish I lived in a place where the livestock outnumber the people. I live in a small town but I board my horses in the countryside and pass lots of farms to get there. I always felt like that's where I belong.

[PdPt]

I've also started being on dialysis when I was 16 years old (long time ago). I've tried all of the treatments available out there, HD, CAPD, CCPD, Kidney transplant, been on all kinds of medications, including trial meds. Have a long history and experience. If you have any questions, anything related to kidneys, feel free to e-mail me at PdPt@yahoo.com. Good luck.