CKD kicking my butt

[terrilee]

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terrilee

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I'm in stage 3 CKD, along with many other health issues. Last year I went into the hospital at this same time of year and had a kidney stone removed . It was 2.5 cm's , now I have to go in and have one that is 7.5cm's removed. I have had kidney problems from birth and I'm tired of fighting, but not ready to give up. I do every thing my doctors tell me, but still lost 6 more percent of my kidney function in one month. Scared that the lose is coming to fast and I won't be around to see my grandchildren grow up.

[cmcginily]

Hi Terrilee

I am 58 and have had kidney disease for many years I am almost into stage 4 and still going strong. Egfr can change from week to week it may pop back up again on your next test just look after yourself. Keep good control on your blood pressure and avoid all anti inflammatory drugs brufen and the like. Drink plenty of water avoid coffee tea is not too bad. Coke is also the enemy. Try to cut down on meat a little as this can stress the kidney I try to have a couple of meat free days a week, and avoid salt. I am probably teaching you to suck eggs but I find this helps me.

Stay strong

Christine x

[terrilee in reply to cmcginily]

I have been on a diet for years, but still put on weight. I also have Crohn's disease . I get chronic kidney stones. I have one that is 7.5 cm and will be going in for surgery soon. I stay in pain and have a Doctor that doesn't like to give pain meds. It's as if he's the one who has to pay for it, but yet I have 22 other kind of meds to take a total of 36 pills a day that I have to take. I hate it, I hate being sick all the time. People, family don't understand. some say I don't look sick, some don't understand that I go days with no sleep or I may go days and all I do is sleep. I am just tired and ready to tell my family I don't want the doctors or meds anymore. I'm ready to take that last trip with my husband, Daughters & grand children enjoy what is left of my time. Terrilee

[Dedalus in reply to terrilee]

Easy for me to stay try to stay positive, but I know you have a lot more fight in you, just from the cartoon and your post, so stay strong and good luck with the op (if your GP won't give you painkillers maybe it's time to change?). Constant pain is debilitating - ask the consultant when you go for the op to give you a prescription and explain the situation with your GP - he/she may have some advice. All best wishes x

[terrilee in reply to Dedalus]

I try to say positive and fight this monster inside of me but sometimes the pain is so great, that it seems so much easier to just stop. Along with everything else that comes with being sick like this, is the guilty feelings of not being able truly enjoy my family. I love them so much and I can see the stress it puts on them, taking me back & fourth to doctors and helping me with my needs. But as I do use the magic word PUSH.

[Dedalus in reply to terrilee]

You are such a star; I'm glad to see your eldest daughter will be talking to the consultant about your meds. All the very best and I sincerely hope things get better for you soon. xx

[terrilee in reply to Dedalus]

Thank You. I will be keeping you & cmcginily in my prayers May you both be Blessed.

[cmcginily in reply to terrilee]

Hi Terrilee

I understand where you are coming from. I have had chronic pain for years due to the enlarging cysts in my kidneys and liver. Some days it is almost impossible to function at all. Like you I have problems sleeping and become chronically tired as a result Pain relief doesn't touch it. I was referred to a pain control specialist who has just put me on a new medication and I am just building the doses up to see if it will help me. There are lots of medications to try and I feel it is maybe the time to have a heart to heart with your GP and lay your cards on the table. Ask strongly for a referral to a pain control consultant. I think as women we are so good at covering things it is no wonder people do not understand or see the pain we are in. Make a stand you are the Kidney Disease Warrior after all.

[terrilee in reply to cmcginily]

Tuesday I go to the surgeon, my daughters will be going with me. My oldest said that she will be talking with him about all my meds. She will ask him about pain management. I have a hard time talking with Doctors. 4 yrs. ago I was in the hospital they had put a pick line in my neck. The day I was released the nurse was taking it out and a air bubble went through my brain causing me to have a stroke. I base lined and they had to resuscitate me. I only take something when I truly need it. The passing of stones has me needing something outside of that it's mostly in the mornings when I hurt the most. If I take something for pain when I first get up I can deal with the pain the rest of the day. If you don't mind me asking what does your Doctor give you for pain?

[cmcginily in reply to terrilee]

Oh My Goodness you poor lady I had a picc line in my arm for breast cancer treatment luckily had no problems with it apart from allergies to the dressings.

Baseline pain meds are Paracetamol 6 hourly 1 gram, with between 15 and 60 mg of codeine 4 hourly depending on the pain level. I have tried tramadol but ti did not agree with me. I have also had lignocaine patches for nerve pain around my side which no longer work. I have just been prescribed Lyrica by the pain control specialist I am only on a very small dose at the minute so not sure if there is any effect yet. I find a TENS machine helps when pain is at it's worst and heat also helps me. best wishes Christine

[nonie2147 in reply to terrilee]

OH HONEY. I KNOW HOW YOU FEEL- NO PAIN MEDS FOR ME EITHER. TRIED TO TELL M.D.- ARE YOU LIVING IN MY BODY??? HAVE VERTEBRAEL FRACTURES FROM OSTEOPOROSIS . CONSTANT PAIN. PEOPLE SAY- YOU LOOK FINE!! SO GET OVER IT AND MOVE ON. NOT SO EASY- BODY MOVES SLOW, BUT MIND IS RACING. NOT READY TO LEAVE THIS EARTH---BUT SOMETIMES, I DO WANT TO GO-EASILY. GOD IS OUR ONLY ANSWER. PRAYING FOR YOU AND ALL OF US IN THIS SITUATION.

[nonie2147 in reply to cmcginily]

OH, YES - THE DIET IS DIFFICULT TO FOLLOW AS WE HAVE BEEN EATING EVERYTHING WE WANTED ALL OUR LIVES. WATER WATER WATER-ONLY ITEM UNLIMITED. WAS DRINKING SMART WATER- THOUGHT IT WOULD BE GOOD- HAS ELECTROLYTES. BUT- AM 78, SO DON'T GET MUCH EXERCISE- SO SWITCED TO REGULAR BOTTLED WATER. DONT KNOW IF ELECTROLYTES HELP OR HURT. GOING FOR KIDNEY FUNCTION BLOOD TEST THIS WEEK. PRAYING. DEPENDING ON RESULTS, MAY REQUEST VISIT WITH NEPHROLOGIST- COULD BE TIME. FEEL NO DIFFERENT- TIRED AND SOMETIMES WEEK- PROCESS OF AGING OR CKD???? ONLY GOD CAN HELP

[Dedalus]

That should have said "Easy for me to say try to stay positive" x

[nonie2147]

I AM 78 YEAR OLD GREAT GRANDMA. HAVE SEEN MY CHILDREN, GRANDCHILDREN GROW UP. NOW MY GREAT GRANDCHILDREEN ARE HALF GROWN. NO MATTER WHAT, I DONT THINK WE ARE EVER READY TO LET GO, AND MOVE ON. I HAVE CKD 3- SOMETIMES GOES BACK TO TWO. AM ANXIOUSLY AWAITING RESULTS OF MY LATEST KIDNEY FUNCTION TESTS. VERY APPREHENSIVE, BUT TRUSTING GOD. HE IS OUR ONLY HOPE. HAVE DONE MUCH RESEARCH. SEEMS CHINA IS THE MOST ADVANCED IN TREATING THIS DISEASE. WHY ISN'T THE WESTERN WORLD FOLLOWING OR MOVING FORWARD. I SUGGEST YOU GO ON DAVITA.COM- A KIDNEY DIALYSIS CENTER. A POP UP WILL COME ON- IT IS A REAL DOCTOR- FROM CHINA. VERY KNOWLEDGEABLE AND CONCERNED. THEY HAVE GOOD ADVICE. EMAILED ME AND HAVE EVEN CALLED. UNFORTUNATELY NONE OF THE TREATMENTS THEY HAVE OR RECOMMEND ARE NOT AVAILABLE IN THE U.S. THEY DID EMAIL ME A LIST OF FOODS TO AVOID, AND THOSE TO EAT. THEY ARE VERY COMPASSIONATE AND KNOWLEDGEABLE- UNFORTUNATELY, TREATMENT IS ONLY AVAILABLE IN CHINA. THEY ARE CURRENTLY NEGOTIATING WITH U.S., U.K., AUSTRALIA TO SHARE TREATMENT. GOOD LUCK AND GOD BLESS. HE IS OUR ONLY HOPE.