Hi there!

[pinky_22]

Hi everyone! Boy, am I glad to have found this community. I am a T2 diabetic who subsequently developed CKD, which was formally diagnosed a few years ago. I am currently balancing the challenges of being a student, DM, and CKD. My last SCr 2 weeks ago was 3.1. My doc just told me that he expects me to start dialysis in about 2 years. I'm halfway through my 4-yr program, so have 2 more years to go. I knew this was coming, but hoped that I could hold off until graduation. Unfortunately, this likely won't be the case. School is getting more difficult, physically and emotionally. The fatigue is controlling my life and I feel so alone and unlike any of the other students in my class. Right now I'm a mix of emotions: sadness, anger, and especially fear. Fear of whether or not I can finish school, fear of being able to work, fear of the unknown.

I am glad to have found this board, and am looking forward to sharing with and learning from you all. Sometimes, I feel like I have no one I can talk to about my problems, and appreciate the opportunity to do so with others in this similar situation. Thank you for reading!

[Ang]

 

[RichardMEL]

G'day Pinky and welcome!

There's a current discussion that may interest you under the topic of "six months" - regarding people being told when they'd start etc - you may find it of interest with your current situation. It may not be two years.

You've taken a lot on but it sounds like you can get through it - maybe ask the neph re the fatigue if there are issues with low hemoglobin that you may need something like EPO to help "prop you up" a bit to help. It may be worth investigating. Otherwise, try a double shot espresso next time

Welcome to our community!!

 

RichardMEL, Moderator

[CebuShan]

  I'm a newbie too but already I have found such love & support. I know how you feel about feeling alone. You are not alone here! Best of luck with your studies.
Again, glad you found us!




FIXED SMILEY - RERUN MODERATOR

[willowtreewren]

 

Hi, Pinky!

And Welcome to IHD

 

This is a good place for support and information. I'm glad you found it, too!

Aleta

[boswife]

Welcome and i hope that something good comes your way.  I know that particular diets etc can help ward off the dreaded D for many so i hope you will find some help guiding you to some help.  Someone on here just posted about "kidneyschool" on the internet (which is really great btw) so ya might go there as well.  Wishing you some energy and comfort here.   

[Poppylicious]

  Pinky!

[Rerun]

Hi Pinky and welcome to IHD.  I'm so glad you found us.  Try and get your rest so you can give all you have to your studies.  I think if you can get school behind you it will make you feel better about the future.  We are here for you.

Rerun, Moderator   

[pinky_22]

Thank you for the warm welcome!

I

maybe ask the neph re the fatigue if there are issues with low hemoglobin that you may need something like EPO to help "prop you up" a bit to help. It may be worth investigating. Otherwise, try a double shot espresso next time

Regarding the fatigue, currently my Hgb is 6.7. An all-time low. I'm having shortness of breath and difficulty lifting my head and arms. Iron pills don't help much so every couple of months I get iron infusions. At the clinic, all the nurses tell me I'm white and pale, and look plain sick. Since my Hgb was so low this time, I got my first shot of Procrit.  Hopefully, this will help bring it up a bit. The espresso sounds good, and will need to try it and factor in the potassium.

Sorry, but I need to vent. Today was a tough day. Classes all morning, and then afterwards the students all went to grab lunch with friends. Pizza, sandwiches, etc. Oh, what I would give to be able to eat pizza without having to worry about it. Eating is too stressful. Socializing/pretending I'm ok is too exhausting. When I'm asked, I tend to decline. I went home to sleep. I have not disclosed my CKD to anyone at school, so I'm sure everyone thinks I'm rather awkward.

[RichardMEL]

6.7?!! WTF?!! How could they let it drop that low? That's scandalous!!

After my transplant mine went down to the equivalent of 7.2, then hovered around 8.0 for ages and the docs were talking blood transfusions and all kinds of things they were starting to panic, but it came good in time - and yours got down under 7 before they did anything serious? cripes. No wonder you look(ed) pale and find it so hard.

I really hope the procrit helps!!! yikes. That is *WAY* too low!!! It's a wonder you can walk easily let alone do classes and stuff. 

[looneytunes]

Hi Pinky and sorry for the delay in making you welcome here.  Glad you found us and I hope to see your posts.   

[MooseMom]

Hi, and welcome!

My apologies if I am stepping out of line here, but I have to wonder about the care you are being given.  I am astonished that your Hgb is 6.7, that it was allowed to get that low.  The Procrit will take a few weeks to really start working, so hang in there.

Have you seen a renal dietician?  I had pizza last night; I ordered it with little cheese, no meat, thin crust.  It's not the ideal renal friendly food, but it's a hell of a lot better than the usual Chicago type pizza.  I'm sure I don't have to tell you that you can eat whatever you want, but the trick is in portion control.

Do you think it is really necessary to conceal your CKD?  You said it yourself...pretending you are OK is exhausting, and I am all for eliminating everything in life that steals energy from you.  What is the absolute worst thing that could happen if everyone knew you had CKD?  Do you think anyone would really care that much or be so horrified and grossed out that they'd never want to see you again?  Frankly, I would rather people know the truth than to think I was awkward or that I didn't like their company and that's why I never went out with them.  You certainly have a right to your privacy, but it does occur to me that if people knew the truth, they'd be understanding and wouldn't judge you harshly.  You never know what kinds of challenges THEY may be facing that THEY don't want to talk about.  I dunno; just a thought. 

Anyway, welcome to IHD, and I hope we can help you cope.

[monrein]

   and I encourage you to read as many threads as possible that seem to relate to your situation so that you can manage better for as long as possible. 

[pinky_22]

My apologies if I am stepping out of line here, but I have to wonder about the care you are being given.  I am astonished that your Hgb is 6.7, that it was allowed to get that low.  The Procrit will take a few weeks to really start working, so hang in there.

Have you seen a renal dietician?  I had pizza last night; I ordered it with little cheese, no meat, thin crust.  It's not the ideal renal friendly food, but it's a hell of a lot better than the usual Chicago type pizza.  I'm sure I don't have to tell you that you can eat whatever you want, but the trick is in portion control.

Do you think it is really necessary to conceal your CKD?  You said it yourself...pretending you are OK is exhausting, and I am all for eliminating everything in life that steals energy from you.  What is the absolute worst thing that could happen if everyone knew you had CKD?  Do you think anyone would really care that much or be so horrified and grossed out that they'd never want to see you again?  Frankly, I would rather people know the truth than to think I was awkward or that I didn't like their company and that's why I never went out with them.  You certainly have a right to your privacy, but it does occur to me that if people knew the truth, they'd be understanding and wouldn't judge you harshly.  You never know what kinds of challenges THEY may be facing that THEY don't want to talk about.  I dunno; just a thought. 

Anyway, welcome to IHD, and I hope we can help you cope.

I have a great neph who stays on top of things and coordinates care with my endo. This may be TMI, but the low Hgb is due to heavy periods. My gyno put me on the progesterone-only pill to help control it, but it is finicky. It lightens my periods for a few months, then out of nowhere I get a very heavy, long period. This last one lasted ~3 weeks. My Hgb plunged from a nice 11.0 to 6.7. Worse yet, I was out of the country for a few weeks so couldn't talk to my doc about it. When I got back, he was shocked and ordered the Procrit and Venofer right away. The wacky periods have been going on for the last 2 years. I brought it up with my gyno and she suggested I get the Mirena IUD instead. Hopefully, this works because the Hgb ups and downs are taking its toll.

Unfortunately, due to diabetes I don't normally eat pizza. It does a number on my blood sugar and even if I inject insulin, I still feel miserable eating that stuff. But I want it so bad! Diet is probably the toughest obstacle I face on a day to day basis. It seems to me that the diabetic diet and renal diet are complete opposites. I complained to my doc, and he said, "yeah, that's a problem for a lot of people" and ended it at that. Oh, he also gave me a sheet of foods to avoid. That's pretty much the nutritional education I got from him. I love my doc, but he's not a nutritionist. I did see a registered dietician once and she wasn't much help. But I just may try to find a renal dietician when I come home for winter break. The area where I attend school is very small and a renal dietician is hard to come by.

I have told my close friends about my CKD, but can't bring myself to tell anyone in my class. I don't think anyone would be particularly harsh, nasty, or avoidant. I just want to maintain my privacy as long as possible and avoid the scrutinizing looks, comments, gossip (yes, lots of gossip in class) that may arise. Not that this hasn't happened already. Everyone will find out eventually when dialysis starts. It will be more difficult to conceal, especially a fistula. By then, we'll be out of the classroom and hopefully I'll feel less pressure.

[jbeany]

The Mirena rocks.

Are you getting side effects from Procrit?  I always felt like I had the flu the day after I took it.  If you are, ask for Aranesp instead - fewer side effects. 

I was on Procrit/Aranesp for a decade before D, and I've been down that low for hemoglobin.  Nothing like not being able to climb a flight of stairs in under 45 minutes, is there?  Puff, wheeze, take a step, rest for 5 minutes, repeat. 

Check out our diet section - there's some good ideas there.  You are right though, the diabetic renal diet is a pain in the a@@.

Hang in there!

jbeany, Moderator