Plz help confused an full of qustions!

[peaches94]

I was finely dignosed with ckd in 06 after 2 pregnacies and 12 yrs of drs trying to figure out y i was spilling larg amounts of protien in my urin n my creatine leavel was threw the roof. My neph i have now really dont give me any info at all i ran acorss this sight looking for answers n learned more here than i have anywhere else. but i still have a few ?s. Dialysis has not even been discussed between my neph n i and i am kinda worried. My gfr was at 20 2months ago and had dropped a point frm the month b4. He is only seeing me every 6months and im wondering if maybe i should try n find a diff neph. Another thing is some of the issues i have been having im not sure is related to my ckd and was wondering if anyone else has had the same problems. I've had the tired all the time feeling for a while now and it seems that the more active i am the worse things get. I had to quit working because the exersion was taking its toll one me i coudnt eat everything made me sick. The heat or just getting hot in general  makes me feel like shit gives me a headache n makes me sick to my stomach. My sex drive in non exsistant n that is taking a toll on my marriage because he thinks its him. I am at my witts end i dont know wat to do ir where to turn this is my last resort plz help if u have had any of these problems an have any sugestions.

[Bill Peckham]

I think you should check in with another nephrologist. It is about time (maybe past time) to be talking about how you can smoothly transition to dialysis, including the type of dialysis and from there the type of access you'll need. It is disappointing that you've had to stop working I think your doctor could have done more to mitigate some of the symptoms. The symptoms you are describing are very common for people with a GFR<30  do you know what your Hemoglobin or hematocrit is these days? You could be getting EPO shots. What is your insurance situation?

Welcome BTW when you get a chance stop over at the "Introduce Yourself" thread to officially switch to non lurker status

[SugarBear]

I agree with Bill your doctor should be more proactive with your symptoms, it would make the transition to dialysis much smoother.  Technically you need a GFR below 15 to start dialysis so it depends on how fast or slow you illness progresses.   I would get a second opinion as it seems you have one of those "Do as I say" doctors which are the worst.  There is so much they can have you doing such as making diet changes, taking epogen shots, and receiving mental support for such a challenging disease.

[peaches94]

Thanks so much for the replies. My hemoglobin is 15.9 and my hematocrit is 46.5 blood urea is 30 c02 is 31 creatinine is 1.80 . and what any of that realy means i dnt know cause like i said he dnt explain any of this to me all he says is u need to lose weight. I try but i tire out pretty easy sometimes. I was walking every other day and watching wat i eat and still no real progress on weight n now that it is so hot i just cant handel it any more. The only reason i know my lab results is because i ask for a copy wen i go in.

[peaches94]

Insurence wise i have Blue Care/TN care im trying to get my disability so that i have more insurence but i have been turned dwn 4 times already. I guess not being a drug addict or drunk is not helping my case any.

[MommyChick]

Insurence wise i have Blue Care/TN care im trying to get my disability so that i have more insurence but i have been turned dwn 4 times already. I guess not being a drug addict or drunk is not helping my case any.

Hi Peaches94 

It does sound like maybe its time to look for a new nephrologist or at least a 2nd opinion.
Also maybe you want to try & get in touch with a social worker to help you with trying to get disability. I had a hard time when it came to getting disability. I had worked 4 yrs full time, while also on dialysis & when it came time that things were getting to much to handle they didn't want to approve me on disability. The guy who took my interview/app was a jerk & told me I didn't look sick so I should still be working! (took over a 1 year just to approve me) But my social worker was a huge help when they wanted to denied me disability!

Good Luck 
~ Marna

[lmunchkin]

Hi & Welcome Peaches!  Definately get another Neph as Bill advised. So sorry you are having to deal with all this at such a young age.  Look into a transplant and get on the list.  Learn as much as possible on your own, and above all ask lots of questions. We are here to help!

Where is Coalfield, TN?  I live just south of Nashville, but not familiar with Coalfield.  Anyrate, you hang in there Peaches. I know this is a hard thing for you, but you need to know, that you are not alone!!!

God Bless & again welcome,
lmunchkin

[peaches94]

Marna thanx for the info i have been fighting for my diability for the last 2yrs ever since i was told i was in stage 4 and started havein problems with energy n gettin sick wen o over exert myself or am on my feet to long. My first lawyer was no help at all but i have one now that is actualy trying to get it done. PPl dint understand that just because u dont look sick dosnt mean there is nothing wrong. I was a cna for 10 yrs and if i could still do it i would i loved my job and miss it. I mostly feel useless now days.
lmunckin: Coalfield is just outside of oak ridge and knoxville. Thanx for everything both of u. I have accepted wat is going to happen and what im in for but my husband has a realy hared time with it all. We been married for almost 19yrs and have been through a LOT but i think this is all by far the hardest to deal with. God Bless All yall

[lmunchkin]

Oh man, you live in a beautiful area.  Those hills are georgeous!  Sounds like your husband is a Keeper for sure.  Ive got one too!  We are two very Blessed ladies, heh?
Let us know if we can help in any way!

God Bless,
lmunchkin

[cariad]

Peaches, your creat is 1.8 and that translates to a GFR under twenty? Are you a very petite person? Because 1.8 seems way too low to even be considering dialysis right now. Your hgb and hematocrit are perfect, if not a little on the high side for a female. Your BUN is above normal. Do you have values for potassium and phosphorous and PTH? Those would indicate if you need to start altering your diet at this time.

Now I am confused, too. Your lab values do not suggest a person for whom dialysis is imminent. How was this GFR calculated - was it estimated from serum creatinine and your height/weight, or did you do a 24-hour urine collection? You definitely need a nephrologist willing to sit down and explain these values to you and answer all of your questions. Any doctor who is unwilling to do that is not fit to practice medicine.

[Whamo]

Peaches, You need a lawyer to prepare your disability case.   SSI routinely says no to everybody.  I was lucky.  My CALSTRS application was approved right away.  I had four doctors sign off on my CHF, as well as my kidney and liver problems.  That was 7 years ago.  I'm amazed I'm still alive. 

[peaches94]

Im sorry guys i miss quoted my gfr its at 25 and as for my other results im not sure xactly how they calculated them. Whamo i do have a lawyer i found out today that i have a hearing in October. Im not going to get my hopes up tho. My neph told me last time i saw him he would help in any way he could that was in March, i talk to my lawyer today and my neph still hasnt even sent in my latest records. I dont know what to do. Its hard my husband has a bad back due to working construction all his life. he fell off 2 two story houses and was in a bad car accident in 07 so he cant do constuction any more and is just doing what ever job he can find to make money. He didnt grad high school n can barly read n wright, but he dose his best. I could go bk to work but it seemed that while i was working all my labs were gettin worse n i dont want to rush the process of it all. But sometimes when things r really tight i want to just give up n go bk to work any way but then again its hard to find someone to hire u when u might miss 3 or 4 days out of a work week cause u feel to sick or tired to move.