Deer in the headlights...

[BuckeyeGirl]

I am a 44 year old Type 1 Diabetic who in the last few weeks found out she has Stage 4 CKD (GFR30).  While undergoing a surgery last month, I learned of my condition when the anesthesiologist mentioned my kidney disease; he assumed that I knew - I didn't! After my surgery, I began to scrutinize my preoperative lab work and with seeing the results, became alarmed and self-referred myself to a nephrologist at the Mayo Clinic. 

Needless to say, I am not overly thrilled with the medical team I have had for over the last decade as it appears I have had kidney disease for quite some time without their mentioning or treating it.  For the past 3 to 4 years, I have complained of complete exhaustion and have had severe anemia only to be told it was the aging process, part of womanhood, and to take some iron. 

So now, here I am trying to figure all this stuff out fearing that the headlights in front of my are going to be a train that runs me over.  Not to be a Suzy Downer, but holy crap there is a lot to learn about this; just the nutrition part alone has my head spinning.    At this point, I have more questions than answers and am increasingly less patient to wait until my next Mayo Clinic appointment to know what lies ahead.  Let me just say, I am finding this site an absolute GODSEND with all of its information.

[Darthvadar]

Hello BuckeyeGirl, and you're very  to IHD....

Glad you've found us... I think you'll be very well supported here... We're a friendly bunch who look out for each other....

Visit and post often... I look forward to getting to know you....

Darth, Moderator....

[MooseMom]

BuckeyeGirl, it's easy to feel overwhelmed by the avalanche of information a CKD patient has to learn.  But you will get through it, and we can help!

I am astonished that your previous medical team so casually dismissed your concerns.

My apologies for not quite understanding...have you seen the neph at the Mayo Clinic yet?  If so, what did s/he say?  If not, when is your appointment?

[Maggie and Jeff]

 

My advise is to drank lots of water 2 liters a day.
No caffeine and No asprin Minimize potassium intake

If you don't know God now would be a good time to get to know Him.  He has really help my wife and I.

Home Hemo dialysis 6 days a week is a better option than transplant IMO.


 

[BuckeyeGirl]

Hi MooseMom,

Yes, I met with the doctors at MayoClinic.  The nephrologist analyzed my preoperative lab results and some other previous diabetic labs I brought with me.  He confirmed that I was right to be alarmed.  He ordered more tests (blood work, kidney ultrasounds, etc), gave me a slew of new prescriptions which include calcium & magnesium supplements, told me to do my best to follow a renal diet (cut out the salt, don't eat out, don't eat processed foods, limit my proteins, eat fruits and vegetables) until he sees all the test results.

I am still shocked and in disbelief that the diabetic medical team I have had all these years completely missed this and never told me I had kidney disease.  For the last two years, I have been complaining to them of being in complete exhaustion, and it was completely blown off.  Looking back, I know it was from kidney disease symptoms.  I could have slowed this down considerably if I had been following a renal diet instead of just a diabetic diet all these years.  Truthfully, from the moment I became diabetic (30 plus years ago), I should have had nephrologist as part of my care team and at the very least for annual checkups on my kidneys.  I assumed my endocrinologist was keeping an eye on everything; I was wrong!

[MooseMom]

I was on the hated pre-renal diet for 8 years, so maybe I can be of some help to you.

I don't want to say anything too specific until you know what your latest labs say, but in general, the idea is to keep a close eye on potassium and phosphorus.  Potassium is a large molecule, so damaged kidneys don't filter it out of the blood very well, so you end up with too much potassium in your blood.  This interferes with the electrical impulses to your heart.  Most fruits and vegetables are high in potassium, so I am not sure why your neph would tell you to eat lots of them, but maybe he feels your kidneys are not THAT damaged.
 
Phosphorus is a molecule that is all twisty, so again, damaged kidneys have trouble filtering it out of the blood.  Too much phosphorus can lead to brittle bones.

A good nephrologist will always request labs that include the measurement of these two minerals in the blood.

Processed foods tend to be quite high in both salt and phosphorus.  Really, even healthy people should avoid them.

Diabetes is one of the major causes of kidney disease, along with hypertension.  Again, I am astounded that anyone who is diabetic would not have their renal function checked by their medical team.  I am shocked and in disbelief on your behalf.

Do you have any idea when you will get the results of the tests your new neph has ordered?

[BuckeyeGirl]

MooseMom,

I have been going back through some of the old lab works that are available from my endocrinologist's web portal, and from what I am seeing - many of my lab results show indication of kidney disease.  Coupled with my complaining of various symptoms, I am absolutely astonished that they did not come to the realization that my kidneys were in serious trouble and let me know. 

I am able to see the blood work results on Mayo Clinic's web portal.  Here are some of my numbers:

Protein / Creatinine Ratio, Urine:  0.53
Urine Protein:  64
Urine Creatinine Random:  120
Glomerular Filtration Rate:  30.6
Creatinine Serum:  1.8
Sodium Serum:  133
Potassium Serum:  4.9
Chloride Serum:  100
Blood Urea Nitrogen:  26
Albumin:  3.8
Alkaline Phosphatase:  101

[MooseMom]

BG, actually your numbers don't look that bad at all!

Your GFR and creatinine are the numbers that jump out at me; those indicate that there is a problem.

The only other thing I would mention is that your neph will probably look at your cholesterol and triglycerides.  High blood lipid levels are a direct consequence of CKD.  Oh, and your blood pressure.  CKD can also lead to anemia, so I'm sure your neph has ordered tests to check that, too.

I know you are shocked and probably furious that this was not caught sooner.  I'd be beside myself.  But once you get those new lab results, then it will be time to assess your particular situation and see what you can do to avoid further renal deterioration.  If you can keep your GFR from getting any lower, everything else can be managed through diet and medications. 

[Maggie and Jeff]

Albumin could be higher Protenex Tablets have really helped my wife she's been taking them 6 or 7 years now.  The liquid is gross.  The tablets taste ok and can be chewed.  Not covered by insurance but they are worth the price we order from surgical world buy 6 get 1 free $144 for 840 tablets.  Maggie takes 5 per day was 9 per day a few years ago.
Her albumin was 4.6 on 3/13/14 (Pre-dialysis 12 years Home hemo with NxStage 8+ years)



Low albumin will make one feel weak, tired, and prone to infections.

It is something to keep in mind and of course ask your neph about any meds before you take them even over the counter stuff.

Low kidney function + peeing = protein leak

Also potassium range is 3.5-5.1 so 4.9 is getting on the high side like moosemom said it wont go down very fast. Avoid bananas and orange juice ect...   

From the #'s you posted if you take care of yourself (water) and watch what you eat and drink (lots of water) and don't let them put dye in you.  You could live the rest of your life without needing dialysis.  The dye took out Maggies kidneys. She was stable for 12 years and on dialysis within 3 months of the dye exam to see if her kidney could be fixed.

Drink water

avoid Beer, caffeine, aspirin, Bananas, orange juice, tomatoes, potatoes, ect..     Moderation is the key.

Take your blood pressure 3 times a day when you get up, at lunch, and before bed.  Record the times and pressure in a 3 column list to take to your Dr. high blood pressure is bad news for kidneys

 Date        Time (am)  sys/dia  pulse (bp med taken)     Time (noon) sys/dia  pulse (bp med taken)    Time (pm) sys/dia  pulse (bp med taken)

A list like this can be easily scanned for trends so bp meds can be adjusted.

And the most important thing is to pray to our Father in heaven.  Don't pray for healing necessarily but for the peace a relationship with Him provides.  Otherwise the fear that comes (and it will) may overwhelm you and cause panic attacks ect...  He has held us up through the times of uncertainty, comforted us during the tear filled nights, and taught us not to be afraid of the unknown because weather we believe it or not our lives are in His hands and He loves us even if we don't love Him.   

[BuckeyeGirl]

Thanks Jeff for all the information.  Is Maggie a diabetic too?  Just curious.

[Maggie and Jeff]

Thanks Jeff for all the information.  Is Maggie a diabetic too?  Just curious.

No, but her sister is diabetic and they talk most days.  Only one of her kidneys developed after a sever bout with measles at age 4 she almost died.  Then she had two children and didn't know she had only one kidney.  Later undiagnosed hypertension and 5 bypasses around her heart. Then 12 years predialysis and now going into the 9th year with NxStage she has never been in-center.

[kristina]

Hello and welcome from Kristina....

I do wish you good luck with your journey and all the best at your appointments at the Mayo Clinic...

Best wishes and good luck on your journey of discovery from Kristina...

[christian2170]

I must agree. A creatinine of 1.8 is above normal but there is still time to do some stuff. There is a blood pressure medication call vasotec which really seems to help diabetics with renal issues. I also If you don't have one. Try an insulin pump. For me it makes control of my glucoses much easier and you use way less insulin. I sometime wonder if the use of more insulin for diabetics is what actually causes renal problems. Good luck and let us know how you do.

[Ninanna]

Hi Buckeyegirl and welcome to IHD.  Are you by chance located in Iowa?  I myself am from southeast Iowa.

[anacolon]

I used these tablets for 1 year and they did nothing. Then I found PreProtein when my dietitian was giving us samples. They have one with 20 grams in an ounce that I take now. It really improved my labs and I feel better especially after treatment. My dietitian was pushing for our region to introduce it but he said that Fresenius is too married to Liquacel.

[SooMK]

Welcome to IHD Buckeyegirl! It makes me angry that you have had kidney disease sneak up on you when you could have been prepared and maybe taken some steps to slow it down. This should not happen to someone who is regularly seeing a medical team. Also, the aging/women's issues excuse is a double whammy of bias. Hopefully you can hold on to your current kidney function for years longer now that you know about it and can get some guidance.

[kristina]

My advise is to drank lots of water 2 liters a day.
No caffeine and No asprin Minimize potassium intake

If you don't know God now would be a good time to get to know Him.  He has really help my wife and I.

Home Hemo dialysis 6 days a week is a better option than transplant IMO.




 

Hello Maggie and Jeff,
I just came across your comment and I do hope you still come and visit IHD.
My question is : Have you changed your mind or are you still convinced that Hemo Dialysis 6 days a week is a better option than transplant and if you still believe so, how come and why ?
Many thanks from Kristina.

[kristina]

Dear Buckeyegirl
Please forgive me to write to Maggie and Jeff about their opinion that dialysis 6 times a week is better than transplant. Having just had a kidney transplant and going through the pains and aches plus two infections and, and, and ... I sometimes wonder, especially since I had no problem whatsoever with being four years on hemodialysis.
Many thanks for your kind understanding and more apologies from Kristina.

[Paul]

 

Hello BuckeyeGirl, welcome to the site.

Like you, my doctor failed to notice my kidney trouble for many years. At one of my annual check ups he asked if I minded if a student doctor did the check up to give her practice. I said OK and it was the student who suggested I may have kidney disease (from the fact that my legs looked like tree trunks).