CF AND DAMAGED KIDNEYS (scared)

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anonymous

New member
HI
I sent a lot of mails the last days. I am very scared.Yesterday i went to my doctor.My lungs condition is pretty good, but the last six months my kidneys are rapidly damaged.I was diagnosed in February and if my creatinine in the next 10-15 days stays in the same level i will begin technical kidneys support.<img src="i/expressions/face-icon-small-sad.gif" border="0">
Let God help me with this. There is a hope...<img src="i/expressions/face-icon-small-confused.gif" border="0">
Please respond if anybody out there has the same problem with me.
A last guestion with the curcumin.How many take it.What the CF doctors said.Any side effects?
Thanks
the best for all of us.
Olympus
 
C

Croft

New member
I've never had kidney problems myself, but I've had some CF friends that had to deal with it, and it can be really tough, but you can pull through it if your heart and your mind is strong enough. <img src="i/expressions/face-icon-small-smile.gif" border="0"> We go through everything, just one more thing on the list we can conquer. <img src="i/expressions/face-icon-small-happy.gif" border="0">

If it makes you feel any better I have constant stomach problems. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> Just got out of the hospital 2 days ago for being blocked up AGAIN. Sucks, and hurts like hell but just gotta deal. :s Besides I've done it so much now it's becoming a regular thing. About once or twice a year or so. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
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HollyCatheryn

New member
I would highly recommend trying Reliv. Get on the internet and find a distributor near you. It has been proven to help your body fight infection and boost and restore organ function in all sorts of situations. I used to have kidney stones and infections every couple of months. I had more than half a dozen surgeries and a nephrostomy over 5 years for it. But, since I started taking Reliv I haven't had a single episode. It has also helped my bowel blockages to move. I rarely get stopped up anymore and even when I do I can clear it out myself with some extra doses of the fiber formula. Reliv makes several different products, but the ones I use are just the basics - but they've worked wonders. I take Now (a multivitamin with herbs and minerals that is balanced to be easily digested and totally usable by your body), Innergize (which is like gatorade with potassium and electrolytes and tastes good like that too), and Fibrestore (the Now and Innergize, put the good stuff in and the Fibrestore makes sure that all the bad stuff, byproduct and waste get moved out - it is helpful both for reglating bowels and for clearing arteries).Just look it up on the web and read the product information and see what you think. I think the internet link for it is RelivInternational.com ? Don't quote me on that though. Trying it can't hurt. OH! And the best part is that I know some people who are post transplant and they can even use it. One started before his transplant and his recovery was much smoother and he's had fewer than average complications post.
 
A

anonymous

New member
I dont know if its the same kinda of porblem as what you are having, but I am in the hospital at the moment with kidney failure. my creatin is through the roof, and I am on a whole concoction of ABS, steriods, a this infusion that opens the arteries in the kidenys to try and get them working again.
My problem is mostly thought tx meds, I havent found my happy medium yet.
My creatin is up and down, but I have only ever been in kidney failure twice, once was when I first had my tx and then now. I was throwing up for 2 days solid and couldnt keep anything down.
I have read on other tx msg boards with regaurds to creatin levels is drinking heaps, which is like 2litres plus of water per day helps keep the creatin levels down.
I'm not much of a water drinker, but I guess after this bout I will have to become one.
I really do feel for you, cause I feel like crap right now, but its getting better.
hang in their and if your not already drinking the copious amounts of water, maybe give it a go, thats pretty much what my tx docs have told me is I need to drink more
good luck with it all
~Tracy~
 
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anonymous

New member
Thank you Tracy.
I am allready drinking a lot of water.(trying).My docs said that in Friday i ll do my final exams and if creatin is 5.7 and up i ll go to technical kidneys support. I am 28 years old and i didn't had tx. The kidneys failure began in January.I went to my doctor with 5.9 creatin. I was in Hospital for 10 days and the creatin went to 2.7 since August.From 15 of August is in 5,7.The cf doctor gives some meds that the kidneys specialist tell me not to take them and so on.... that's why i am so confused.The same situation and with my diet.
Thanks again...good luck and to you!
Olympus
 
A

anonymous

New member
HI olympus,
Are you on am meds that are causing your creatin to be so high????
and I know exactly how ya feeling with being scared and confused, on sunday morning I was playing with my dogs and goats etc, feeling brilliant, sunday afternoon I literally crasked, I figured it was just a gastro bug and thought I could sleep it off, monday I was feeling a little better, come sunday night I was spiking temps of 40 celicus. I ended up having to call my dad from work to get him to come and get me and take me to hospital, i thought I was dying, I could brarely sit to vomit, my mum would have to support me and then I would just literally collapse, scary stuff thats for sure.
so do the docs know whats causing your creatin to be so hight, diabetes? or meds
Do you know yet what kind of treatment they will be doing for you kidneys?
have you tried electrolyte drinks, like glyco-lyte, not sure on its use with creatin, but I am going to ask my docts tomorrow on other measures I can do to prevent this, I have a whole reation of probs, my creatin messes up my anti rejection levels etc, so when one goes to sh!t they all seems to head the same way
whats is up with your diet??? did I miss that somewhere
keep in touch, and I will ask my tx docs on other things that can help and pass on the message
take care
~Tracy~
 
A

anonymous

New member
Hi Tracy and thanks again for your interest...
I am taking meds for CF, like ciproxin.The doctor said that the ciproxin keeps my creatin high.He don't know exactly what was the original cause of the kidneys failure.I don't have diabetes.He believes that one infection related with cf keep creatin high
That's why i am so confused, and scared because my situation is going rapidly down.
The next step is to begin mechanical support for my kidneys twice a week in a hospital. (scary!)That mean i have to quit my job,that is a no return road, and i don't know if i can do kidneys transplant.
Friday i ll do a set of examinations for my kidneys in hospital, and after that the doctor will decide the next step.
I am waiting forward for your help....
Olympus
The problem with my diet is that the diet for kidneys is oposite with the CF diet.
 
A

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hi Tracy and thanks again for your interest...

I am taking meds for CF, like ciproxin.The doctor said that the ciproxin keeps my creatin high.He don't know exactly what was the original cause of the kidneys failure.I don't have diabetes.He believes that one infection related with cf keep creatin high

That's why i am so confused, and scared because my situation is going rapidly down.

The next step is to begin mechanical support for my kidneys twice a week in a hospital. (scary!)That mean i have to quit my job,that is a no return road, and i don't know if i can do kidneys transplant.

Friday i ll do a set of examinations for my kidneys in hospital, and after that the doctor will decide the next step.

I am waiting forward for your help....

Olympus

The problem with my diet is that the diet for kidneys is oposite with the CF diet.<hr></blockquote>

I have a small dog too.He is my best friend
 
A

anonymous

New member
HI AGAIN....
YESTERDAY I TOOK MY RESULTS FROM MY DOCTOR. I AM VERY DEPRESSED. MY KIDNEYS ARA TOTALY DAMAGED AND I HAVE TO BEGIN MECHANICAL SUPPORT IN HOSPITAL....
I HAVE TO QUIT MY JOB AND ETC.....
I AM SO AFRAID NOW AFTER 28 YEARS FIGHTING.
I WENT TO 3 DOCTORS.THE FIRST SAID THAT TRANSPLANT IS OUT OF QUESTION, THE SECOND THAT I HAVE TO DO KIDNEYS TRANSPLANT WITH PANCREASE TRANSPLANT TOGETHER....AND THE THIRD THAT IN THE NEXT SUMMER I LL DO MY KIDNEYS TRANSPLANT...
I AM SO CONFUSED.. I DON'T KNOW HOW IN ONLY 6 MONTHS FROM NO KIDNEYS PROBLEM I WENT TO THE WORST LEVEL...( DOCTORS MISTAKE...MEDICINES...OR BAD FATE...)
I LOST WEIGHT, I HAVE LOST MY FAITH, AND MY FUTURE NOW IS BLU.....
I AM READING HOW CLOSE IS SCIENCE TO THE CF CURE.....AND YET SO FAR AWAY....
I KNOW THAT I AM TALKING TO MYSELF BECAUSE I LIVE IN A SMALL COUNTRY WITH A POOR MEDICAL SYSTEM AND THE NEW MEDS ARE HARD OR IMPOSSIBLE TO FIND HERE.
IT'S JUST A WINDOW TO THE SUN FOR ME READING ALL THE NEWS ARROUND THE WORLD, AND HOW ALL THIS REMARKABLE PEOPLE TRYING TO FIND A SOLUTION.
LET GOD HELP ALL OF US
THANKS
OLYMPUS
 
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anonymous

New member
Olympus,
I don't know how to respond to your email. Bless your heart<img src="i/expressions/brokenheart.gif" border="0"> I have heard of people coming from other countries to the US for surgeries, etc, I just don't know what they had to do to get here?? Is there an United States Embassy in your country? If so, maybe you could start there & ask them some questions regarding coming to the US for medical treatment & possibly they would know of charitable organizations that would help or cover the costs involved. It may be a dead end road to try this, but I guess if I were in your situation, I would be thinking that it couldn't hurt to try, what do I have to loose?
Maybe if anyone else reading this has any tips on how he could come to the US for treatment, they could share.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, God has a plan for you.
 
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anonymous

New member
Thank you for your interest...<img src="i/expressions/sun.gif" border="0">
It is a great encouragement to me to see people with the same problem trying to help.Thank you again.
I am from north Greece. I am going to see the best CF doctor in Athens next week. I read a lot of things about curcumin ,bitamins and etc so i ll go there with a lot of questions.
But my kidneys are the ones with the big problem right now.I am trying to find the balance between the CF and kidneys inefficiency.For example the cf doctor told me to take 2 ciproxins every day and the doctor for kidneys told me to stop them?They both know my historical...
That's why i am so confused and i don't know if i am in the "right hands"
I dont't know other CFers with kidney problems to share experiences.To show me "the way".
Thanks everybody and good luck to all of us.
Olympus
 
K

kybert

New member
i know what you mean about doctors with conflicting opinions. one specialist says 'do this it will make your cf better' and another says 'no dont do that it will make *insert disease here* worse'. if this doc you are about to see is truly the best then he will know what to do. greece isnt that bad with cf healthcare so you can relax. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

New member
Thank you Kylie
I am very depressed and that make me very weak.I lost 2 kilos body weight and i feel very tired.It's the first time in my life that i am realy scared.
I thanks God that all the people who loves are next to me and i take strength from them to move on in life.That is the most important for me.
I 'll wait untill next week's meeting with the new doctor in Athens....
I pray to God for help every day....
Olympus
 
A

anonymous

New member
It look's tham im running out of luck<img src="i/expressions/brokenheart.gif" border="0">
I took my test's today and since last week i had a dramaticly creatin raise. I have now 8,5
So i spoke to my doctor and he said that i must go immediately to the hospital for mechanical kidneys support.
Now i have to quit my job and to begin a new way of life.Low quality and day after day to the hospital?
He said that he will speak with my CF doctor to have me in good condition untill next spring (May) for a kidney transplant...
I am not sure if they speak truly to me.
Sorry that i am sud again. I know that this forum is to give hope for the young CFers.
I ll keep fighting.....for a better life ...so let God help me.
Good luck to all of us
Olympus
 
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anonymous

New member
If you're feeling down in the dumps, you have every right to be. That's alot for you to process right now.
Do you have a relative w/ the same blood type that could donate a kidney to you?
I can tell that you have faith in God & that's what gets us through alot. I will say a prayer for you. Keep us posted.
God Bless<img src="i/expressions/rose.gif" border="0">
 
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anonymous

New member
Yes i have a relative who can donate me a kidney.My mother is still young and healthy.
But i spoke with 3 doctors for my kidneys. The first told me that transplant is out of question because of CF.The second told me that i have to do and pancrease transplant with kidneys transplant.??... and the third that we will do only kidney transplant next May.
So i am so confused from the doctors, and i don't heard anything from somebody else with the same problem...
I feel alone in this dificult turn of my life.
LOVE AND FAITH is the cure for everything so i am trying to get as much as i can from everywhere<img src="i/expressions/rose.gif" border="0">
Thanks all of you out there for the support.
God bless all of us
Olympus
 
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anonymous

New member
A kidney & pancrease tx probably wouldn't be a bad idea, since a lot of us CFers develope CF related diabetes. The kidney is readily available from your mom, where do they think the pancrease is going to be coming from? It sounds as if you need the kidney pretty soon & I don't know how tx works where you are, but here in the states, it can take approx 2 years for everything for a lung tx, I don't know the waiting time for a pancrease, maybe there is not such a demand for them? But what if you would have to wait for a pancrease to become available? Would you have that much time? I am asking because I've not had kidney problems yet, so I really dont' know how serious it is & how long it can go before a tx would be needed.
 
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anonymous

New member
I dont' know and that's why i am so confused. The doctor who take care of me said that we will go for kidney tx next May.He didn't said anything about pancrease transplant. I have the same questions with you... and i am very scared....I believe that 2-or 3 years it's a long time to wait....I dont't know?<img src="i/expressions/brokenheart.gif" border="0">
I am so confused from the doctors ...3 doctors 3 opinions....
That is why i am looking for help from this forum.
if anybody else had the same problem? if there are any news and etc...?
I am looking for help as you can see...
THANKS
OLYMPUS
 
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anonymous

New member
I will begin aimodialysis next Monday.My family makes tests to find who will donate me a kidney.We are talking about kidney TX for next May (if God helps).....
Aimodialysis every day for 8 hours at home.
I will fight once again.........
Good luck to all of us
Olympus
 
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