searching for help

[momof5]

WELL I HAVEN'T BEEN ON MUCH I HAVE BEEN DEALING WITH A LOT LATELY HAD 1 KIDNEY REMOVED HAD A FISTULA PLACED AN FIGHTING MAJOR INFECTIONS IN MY LAST KIDNEY WAS JUST RELEASED FROM DUE TO FLUID AN BLOOD AROUND MY KIDNEY MY CREATINE IS 3.1 AN I KNOW I'M IN MY FINAL STAGE BUT I'M WONDERING IF I SHOULD GO FOR THE OTHER KIDNEY REMOVAL AN GO STRAIGHT TO DIALYSIS ANY HELP WILL BE APPRECIATED

[Marina]

Re: searching for help

I'm so sorry to hear everything you've gone and are going through.

What does your Dr say about your kidney? Is he/she recommending removal of it?
The fluid and the blood around it, unfortunately can/do cause infection.
I hope your Dr can guide you on what your best option is.

Take care

[momof5]

Re: searching for help

Well i'm going to see my dr tuesday but my surgeon on monday hoping he can help me out.

[Pege]

Re: searching for help

I lost my son to cancer in Feb. after a year long battle. During this time I was diagnosed with one thing after another. I too used to say, "God only gives us what we can handled, so enough is enough!". I questioned this when he died and my heart broke. The actual saying is "God will not give you more than you can handle without giving you the ability and strength to handled it." I was glad I found the actual saying because a month later I was told for the first time that I had renal failure and was all ready in Stage 4. God had definitely given me the strength to carry on on so many levels. Friends, family and a boss who understands that I cannot always come to work. Depression and sadness of losing my son is always with me. But it is no longer who I am. I do not fear death but I am doing everything I can to prolong my life.

[Puchi2010]

Medullary sponge kidney- I would like to get more information as to what type of diet I need to follow. I have kidney stones in both kidneys and I keep developing them. I have already had a couple of surgeries to blast the stones out but I am tired of it. Any advise?

[Puchi2010]

Searching for help

Medullary sponge kidney- I would like to get more information as to what type of diet I need to follow. I have kidney stones in both kidneys and I keep developing them. I have already had a couple of surgeries to blast the stones out but I am tired of it.
Any advise?

[dac0214]

Yes. Contact a nephrology dietician.

[Matheaford]

http://kidney.niddk.nih.gov/kudiseas...yspongekidney/

I found this article that talks about your issue - it sounds like you need to follow a diet to lower your risk of kidney stones - and you need to know what types of stones you have before you know what to adjust.

[Puchi2010]

Thank you!

[Puchi2010]

Thank you! I will call my insurance to find out about my coverage for a dietician.

[caminiti4]

I lost my son to cancer in Feb. after a year long battle. During this time I was diagnosed with one thing after another. I too used to say, "God only gives us what we can handled, so enough is enough!". I questioned this when he died and my heart broke. The actual saying is "God will not give you more than you can handle without giving you the ability and strength to handled it." I was glad I found the actual saying because a month later I was told for the first time that I had renal failure and was all ready in Stage 4. God had definitely given me the strength to carry on on so many levels. Friends, family and a boss who understands that I cannot always come to work. Depression and sadness of losing my son is always with me. But it is no longer who I am. I do not fear death but I am doing everything I can to prolong my life.

Wow, I was hoping to find people on hear to help me get through this. You sure are an angle from God. You will be in my thoughts and prayers.
I was diagnosed with RPGN at 12 weeks pregnant. Unable to live with terminating the pregnancy I underwent hemo dialysis. My son was born at 24 weeks. Unable to see him because I was so sick we weretold he had a 5% chance of makinging it. Three days later I was able to see him. A long road of ups and downs for 16weeks and he came home. It is unreal the things we all have to go through. I was able to stay off dialysis for 10 months. We decided that Pd cycler at night would be best. I was on dialysis for 10 months before receiving the gift of life. My husband matched ( while I have a twin sister that doesn't have the same blood type) 5 of 6. That match is better then any family. Thought it would last forever. Last year my creatine went up a little, so went in for biopsy. Found out my body was rejecting the kidney. Rejecting in a way that would be as if the transplant was new and we are nine years post transplant. We could not understand it. Last resort was plasma phuerisis (not sure spelling). As I wasn't getting better and always took care of myself. Someone else is going through rejection because they don't like to take medicine gets better in days. I don't get it. Very upsetting and makes you question God, Why me.? It has been a 15 months and my creatine is 3.0. Tired, swelling, legs hurt, and feel angry at times. You are someone that gives he hope knowing that I am not alone. It isn't easy, but God loves us.

[boncaks]

Caminiti4

You are not along. God is always with us. I can only imagine the stress of pregnancy and having to do dialysis. I am sorry that your transplant is falling 9 years is a long run and a blessing. Next month I go to the Cleveland Clinic to see if I can be placed on the transplant list. I am in stage 4, but because I am so thin the nephro thinks by the way I am looking that the number are more seriously even though it's only 2.9 at my last labs. I weigh 112 lbs and I am not diabetic nor do I have high blood pressure. The nephro also informed me that I can't do PD because my albumin (protein level) is to low and PD makes those levels even worse, so I will be doing hemo the thing I feared the most, but I know God will get me through it. I know that we are emotional sometimes, but that is normal.

Pege

I am sorry to hear that you lost your son. Just know that God needed him for his garden and wanted the most beautiful flower that he could find an.d that was your son. Sometime we have to be so strong and we wonder and ask God why. I have personally decided that God really has a sense of humor. The nerve of him making me handle all of this God bless and keep you because everything will be okay.

Bonnie

[caminiti4]

Boncaks,
Thank you! It has been a long hall, but talk to God everyday. That has been helping me get through this.
I am sorry to hear about you. Do things taste funny to you? Just wondering with weight loss. I lost tons of weight last time because stuff started to taste like metalic. Not a good taste.
Have you been at Stage 4 for the 3 years or slowly getting worse? Just wondering how your energy is too?

[IHaveFaith]

Dear Bonnie,

I could not let this thread get lost without letting you know that I am thrilled you will be going to the clinic next month for an eval and we will place you on our prayer list at home. You can do this, Bonnie!

Has your doctor recommended anything you can do to increase your caloric intake to maintain your current weight or aid you in weight gain? I understand your protein is low and that they may not be successful in helping control that at this point in time but you need to make sure that you are compensating for that (replacing protein in another dietary manner) so your body does not convert muscle mass over to the energy that your body is requiring right now. Just reconfirm with your doctor to make sure that they are doing everything diet wise to help you be ready for your big trip next month!

God bless you Bonnie and please find a way to keep us up to date as this is such an important time for you and I am very interested to know how you are doing.

All my best to you, Bonnie!

Snip original quote to specific sentence:

Next month I go to the Cleveland Clinic to see if I can be placed on the transplant list. I am in stage 4, but because I am so thin the nephro thinks by the way I am looking that the number are more seriously even though it's only 2.9 at my last labs. I weigh 112 lbs and I am not diabetic nor do I have high blood pressure. The nephro also informed me that I can't do PD because my albumin (protein level) is to low and PD makes those levels even worse, so I will be doing hemo the thing I feared the most, but I know God will get me through it. I know that we are emotional sometimes, but that is normal.


Bonnie