Just an update

[paddbear0000]

Now (well, this is the first time these things have tested) my labs show that other kidney related functions are being affected. My vitamin D level is very low, as well as my iron, total iron binding and iron saturation. My regular doctor has me starting on prescription vitamin D, and my new nephrologist is having me do IV iron. I start that tomorrow, down in Cincinnati. I sure hope my transplant nephro doesn't want to test these things again. My levels may be back to normal, and that won't help in trying to convince them that I need to get listed!  

Hey! Where did the doctor smiley go?

[Romona]

You will notice a difference after the iv iron. The vitamin D will make you feel better too. It sounds like you found a good nephrologist this time!

[Chris]

If those transplant docs don't take into consideration that you had to have IV Iron and Vitamin D (I'm also on that now), they are idiots!

You already know how I feel how they treated you so far from Facebook. Just be prepared with documentation and advocate yourself that you need the transplant.

[paddbear0000]

I had the IV iron done this morning (one round anyway). I feel like crap now! I have chest pain, plus, I stopped at the food store for a few things on the way home, and by the end, I was exhausted and could barely walk anymore. I am also super tired too. They never mentioned any side effects like that. Just an allergic reaction type thing being possible (rare tho). Has this happened to anyone else? I have to go again on Tuesday and I'm not looking forward to it.

[paddbear0000]

Oh yeah, and I'm getting winded doing pretty much anything. I stood on the couch to open the curtains, and I had to sit down when done because I was short of breath and felt ill.

[kellyt]

Are they putting you on Zemplar?  If so, PM me.

K~*

[paddbear0000]

What is that? I'm getting Venofer.

[okarol]

Are you on Epogen? The iron won't do much good if you aren't absorbing it. The Vitamin D is important too!
I remember Jenna feeling like you do, she just did less and less until all she could think about was sleep, sleep and more sleep!
 

[paddbear0000]

No, I'm not getting epo. I am taking prescription vitamin D though.

[Romona]

It will take a little time. I agree with Okarol about Epogen.

[Pam]

Hang in there you will feel better in a day or so. I had to have the iron IV also . The first day went fine until time to go home. I was too wobbly to walk. Left in a wheel chair and when I got home slept the rest of the day. The  second treatment was a night mare. About half way through My BS dropped to 35. Then BP  went sky high. They gave me a pll to bring it down and it was so low I didn't know who I was. I only had 2 treatments and I will say they did make a difference in how I feel. I take zemplar also and since the iron IV I only take a nap occasionaly instead off every day.

[Chris]

Paddbear, you on the 50,000 IU dose of Vit D?

Hard to tell if the IV Iron did anything to me. I was already messed up, but all I was on were Epo, Iron, Nephrocaps (sp?), and Phoslo for meds besides my insulin at the time.

[paddbear0000]

The vitamin D I'm taking is Calcitriol (brand name Rocaltrol) 0.25 mcg. I'm not sure what you mean by "messed up," but I'm on 15 different medications right now, plus the IV iron.   

[Chris]

Sorry, should have been more descriptive. I meant that with all the medical issues going on, I did not feel right no matter what. I was at the hospitalfrequentlyuntil they finally admited me for a month and a half to find out how to make things better so diabetes wasn't always being a problem.

I have to get my Vit D prescription out, but mine is labeled as 50,000 IU which I need to do the math conversion to mcg. It probably works out to your dosage, but never did understand how to do the conversions due to  a bad instructor who wasn't a math instructor at all.

[paddbear0000]

I found this online (www.feinberg.northwestern.edu/nutrition/factsheets/vitamin-d.html):

Vitamin D is commonly measured in micrograms (mcg). However, International Units (IU) is the unit of measurement for vitamin D that appears on food labels. To convert vitamin D from IU to mcg, 200 IU is equivalent to 5 mcg. The Daily Reference Intakes (DRI) for vitamin D are shown in the table below.

Vitamin D Requirements Daily Reference Intakes

Life Stage   Vitamin D(mcg)
Infants
     0-6 months   5
     7-12 months   5
Children
     1-3 years   5
     4-8 years   5
Males
     9-13 years   5
     14-18 years   5
     19-30 years   5
     31-50 years   5
     51-70 years   10
     > 70 years   15
Females
     9-13 years   5
     14-18 years    5
     19-30 years   5
     31-50 years   5
     51-70 years   10
     > 70          15
Pregnancy
     < 18 years   5
     19-30 years   5
     31-50 years   5
Lactation
     18 years   5
     19-30 years   5
     31-50 years   5


According to this, my 0.25 mcg 2x a week doesn't seem like it's going to do a thing! And my level is really low. I must be missing something.

As far as messed up, I can sympathize. Type 1 diabetes, kidney failure, hypothyroidism, high BP, high cholesterol, depression, anxiety. All except for the BP, caused by the diabetes. Add to that, cataracts, retinopathy, gastroparesis, gall bladder disease, peripheral neuropathy, autonomic neuropathy (which has caused the gastroparesis, difficulty in maintaining body temperature and sweating, can't feel if my bladder is full, my blood pressure is uncontrollable and my blood sugars go on a wild rollercoaster ride hour by hour). And none of this includes my kidney failure symptoms! I know we're pretty much in the same boat! This is why I take 15 different meds!     

[kellyt]

I was placed on Zemplar when my Vitamin D was low.

[Chris]

I was placed on Zemplar and Vit D in August 08 along with Calcium plus Vit D. Seems this should have ben done years ago now that I have been reading more on what people are on during dialysis.

[kitkatz]

Zemplar makes me itch. They tell me I am the only one in the world allergic to Zemplar.

[Romona]

My Calcitrol dosage has been adjusted a few times. I took it 3 times a week, every day and now I am on every other day.

[paris]

IV infusions don't bother me, except for the aggrevation of a lost day.  I take Hectoral for the vitamin D - expensive little pill, but it seems to do what it is suppose to.  The dosage has to be adjusted from time to time.  I have taken in three times a week, then every day (which made me very sick) and now every other day.   Hope you can find what works well for you.

[paris]

Paddbear, just another thought-----my transplant centers do a full panel once a year, but they also share all my nephs lab work.  They won't use your numbers to keep you off the list.  They will do what they can to help get you in the best spot for a transplant.  Wishing you good luck with the process.

[paddbear0000]

Well, today I went and had my second (and hopefully last) IV iron treatment. I also scheduled a vein mapping for this Thursday and an appointment with the vascular surgeon on the 24th. I'm trying to get the ball rolling on this fstula thing. I have reservations about my new neph though. He keeps telling me that he'll see if I'm ready to get it! WTF?! My function fluctuates between 14 and 17%. I don't want to end up needing an emergency catheter! He knows I'm feeling worse, but all he says is, if my creatinine keeps climbing upwards, then he'll consider it! Arrggghhhh!!    I have an appointment with another surgeon on the 22nd about my gallbladder. He is also a vascular surgeon who does fistulas, so I think I will talk to him about having it done in case I need a back up.