suggestion... how about introducing ourselves??

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

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Me and my Kidney

Postby Natalieallie » Tue May 24, 2005 5:11 am

Hi,

My name is Natalie. I live in Georgia in the US. I am about half - way thru reading all of your stories on this board. I've learned a lot here and am lear :) ning more. I am 47 years old and last year they found that one of my kidneys (left one) had completly shut down and did not work- had not been working for a long time. Apparently, it is very small, shrunken, and I wasn't born that way. My other kidney works at 30% (however I have had several labs that showed it working in the 14-15% range). Additionally, I have hyperparathyroidism and one parathyroid was surgically removed due to a tumor on it. But my PTH is still abnormally high. I was given sensipar because my calcium is still in high range. Now, if all this sounds confusing to you, I am totally confused. They don't know what happened to my kidneys, I have never had any problems until last year during a routine lab concerning my goiter. Yep, got that too. Anyway, don't know what's ahead of me...but you all seem to be strong, bright folks. This is a great board and I intend to keep sharing with ya'll if you'll have me...have to tell you about my two cats Ozzie (totally black) and Minnie-me. I adopted them~ adopt a pet today!

Natalietee@aol.com
Natalie~
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kidney issues

Postby amanda in CA » Tue May 24, 2005 3:53 pm

Hi, Natalie, welcome to this board. I'm sure that your diagnosis came as an unwelcome shock and it sounds as if you still have a lot of questions waiting to be answered. However, regarding the PTH level being high. If you have had one parathyroid gland removed there are three others waiting to make PTH. One of the functions of the kidneys is to excrete phosphate. When the kidneys are damaged, phosphate builds up in the body. By what is known as a bio-feedback system, the body attempts to rectify this by producing more PTH. PTH then causes the bones to release calcium which binds to phosphate. Unfortunately this ultimately results in the parathyroid glands getting larger, which results in more PTH being produced. If left untreated the parathyroid glands become permanantly enlarged and thus the PTH level becomes permanently elevated. To reduce phosphate levels renal patients are routinelly prescribed phosphate binders which are taken with meals and do what exactly that, bind the phosphate released from the intake of food. this is important because high releases of calcium from the bones results in a particular type of osteoporosis known as renal osteodystrophy. Unfortunately it doesn't stop there, calcium can be deposited in the blood vessels and organs causing further problems.

Sensipar is a new medication, that 'tricks' the parathyroid glands into 'thinking' that there is more calcium available than there is, so that less PTH is released. As my nephrologist described it, it is a chemical parathyroidectomy. I have been on sensipar for a couple of months now (it was only approved by the FDA last year) and it has done wonders for my high PTH level, bringing it down threefold. However, it is still important to take binders because if the phosphate remains elevated, the PTH level can still be higher than it should be.

The best person to direct your questions to is your nephrologist. If you don't already have one, then you should get one. Regular physicians know little about renal issues. My suggestion is to write all the questions that you have down as you think of them. Next time you see your nephrologist, ask the questions. Don't worry if it takes a long time, you need to know the answers to these questions, so that you can manage the issues that arise in a way that will minimise their effects. I have discovered over time that you have to be your own advocate when it comes to your health. don't allow anyone to fob you off when you have questions to be answered. This forum is an excellent place for getting more information from a patient viewpoint. I wish you all the best, Amanda
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We should all have M.D.s!

Postby Natalieallie » Sat May 28, 2005 2:16 am

Amanda,

Thanks so much for the great info, I am beginning to understand the feedback system between tht kidneys and parathyroids ( and so, phosphate and calcium). I've been thinking lately that people should be more educated about how their bodies work whether they plan to enter medicine or not. I do have a kidney doctor. (But he is a Renal Doctor~ not sure about nephrologists???) Have to ask at my next appointment. I usually have all my labs done then they are sent to him and he goes over results. In reading on this board I am really surprised at how many folks don't know why they have kidney disease- like me. I never had any pain, my parents are shocked and I've never overdosed on anything like Tylenol. I have a nursing friend who is going to lend me her (HUGE) book so I can get a better understanding. Unfortunately, because of parathyroid thing I have to see an endocrinologist too. But I'm REALLY glad I've found this board and fingers are crossed so that kidney function stays above or near 30%. And If I do wind up on dyalysis, I'll have you all to share with. :wink:
Natalie~
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Re: We should all have M.D.s!

Postby Natalieallie » Sat May 28, 2005 2:44 am

Natalieallie wrote:Amanda,

Thanks so much for the great info, I am beginning to understand the feedback system between tht kidneys and parathyroids ( and so, phosphate and calcium). I've been thinking lately that people should be more educated about how their bodies work whether they plan to enter medicine or not. I do have a kidney doctor. (But he is a Renal Doctor~ not sure about nephrologists???) Have to ask at my next appointment. I usually have all my labs done then they are sent to him and he goes over results. In reading on this board I am really surprised at how many folks don't know why they have kidney disease- like me. I never had any pain, my parents are shocked and I've never overdosed on anything like Tylenol. I have a nursing friend who is going to lend me her (HUGE) book so I can get a better understanding. Unfortunately, because of parathyroid thing I have to see an endocrinologist too. But I'm REALLY glad I've found this board and fingers are crossed so that kidney function stays above or near 30%. And If I do wind up on dyalysis, I'll have you all to share with. :wink:
You need chaos in your soul to give birth to a dancing star. ~ Nietzsche
Natalie~
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New on the Boards

Postby usmc_poet » Mon Jul 04, 2005 5:23 pm

Hi all,
Well it says new on the boards but that is not actually correct, I have been reading the post and trying to post. Had a little problem with the system, I think it all falls under the acronym :arrow: (C(computer) R(related) A(access) P(problem)) but having re-regisitered I am able to join the boards.

Anyway I have been undergoing dialysis treatments since December 2003, it I might add has been a learning process that compares to no other I have ever gone through. It is funny how everyone assumes that you know why you are going through the treatment and how everything works - how wrong they are.

I can't tell you how happy I was to find this website - so much informaton and whoever was so considerate to create this wonderful place many thanks from me and my family. As you know if someone from the family is undergoing this treatment the whole family is involved.

For those that might be interested in my background, it is all presented in multi-color website paging at - http://www.geocities.com/usmc_poet

I was also wondering if there are any Colorado folks on this site, if so please contact me off line using either my email address of - usmc_poet@yahoo.com or rwicker@ucar.edu - I will answer all messages.

Glad to be here.

Ron :?:
Someone still learning.
Ron Wicker - Retired from U.S. Marine Corps, work full-time, suffer from End Stage Renal Failure receiving dialysis treatments 3 times aweek.
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Hi, Ron

Postby amanda in CA » Mon Jul 04, 2005 11:43 pm

Hi, Ron, welcome. This site is a great source of moral support to me to. it helps ease the sense of isolation that is otherwise felt. I wish you all the best, Amanda
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Newbie-ish...

Postby Orb » Tue Jul 05, 2005 10:48 pm

Hello all. Its good to hear people's positive attitudes all over this board.

I'm not entirely new, but am now six weeks post-(first) transplant and feel like a new man already. I've had progressive failure since childhood, and looking back now have been seriously comprimised for years (at least since beginnning of medschool and that's seems so long ago now!). I'm thirty now (although does your average age change with an older kidney in you??) and looking to getting back to work as a hospital doctor later in the year.

I've been very blessed. I received a donor kidney from my Mother (she is recovering nicely too) and about a year's of investigations. The op itself was slightly tricky (it needed re anastomosing to the internal iliac artery - making the Surgeon late for his wife's birthday apparently!).

I don't remember much about that night apart from my wife staying with me, but I remember feeling more alert and clearer by the next lunchtime than I had for years. And it's been as good since. The kidney started to work straight away and my Creatinine is around 140-150, but then I'm a lot bigger than my mother is!

It's heart-breaking to read the stories of failing/failed transplants and I offer you all my sympathies and wish everyones could go as well as mine has so far.

The only trouble I've had is balancing diet and bichemistry results. I couldn't tolerate the phosphate tablets (anyone find that problem?) so I try to do it by diet, but then my Cholesterol goes up. My appetite is vast ;) so i try to snack healthily on fruit, but then you gotta watch the potassium! lol! still, small stuff really. We'll sort it out, I know.

Good to meet you all, and lets see what the future has for us all.
Orb
 
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Postby JMan » Wed Jul 06, 2005 7:12 am

Hi Poet & Orb,

Welcome to the board,

Glad to hear that the transplant is going well Orb, I'm a bit confused by your comment on potassium? Normally after transplant one is on a free (but healthy) diet, no?

You can read my introduction post HERE:
viewtopic.php?p=34#34

:)
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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http://www.flickr.com/cybercast
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Potassium after transplant

Postby Orb » Wed Jul 06, 2005 9:14 am

Sorry, didn't mean to worry anyone with that comment.

You're right, one's diet is soooo much freer after transplant. However, one has to be slightly careful because of the drugs one is taking. THe steroids make the body use blood sugars less efficiently making one prone to diabetes, and I believe its the cyclosporin that make potassium a little labile. Of course, with a good kidney, I've found that just a day or too of being good (no chocolate or potatoes) and it plummets right back into the normal range again! Not like before, when you'ld spend an anxious week watching it come slowly back down!

So, those looking forward to transplant, don't worry your diets will get more interesting again! Basically its just to eat healthily and try not to put on too much weight!!
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Hello

Postby kez » Thu Jul 07, 2005 3:00 pm

Hi everyone,

I am new to this bulletin board :D My name is Kerry and I have had kidney problems for 14 years now. My own kidneys failed from FSGS and I have had two transplants. I have just started on haemdialysis - three months now!

look forward to talking with some of you guys :D
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Back Again

Postby NancyL » Mon Jul 11, 2005 4:19 am

Hi! My name is Nancy. I'm 32 and live in Ohio.
I have been reading this board for many years. It started off with my kidney stones. I've had 6 separate stone issues. I develop one every year or so. Then 2 yrs ago while trying to figure out a cause for my high blood pressure a kidney scan was done. The results were that I had mild bilateral renal insufficiency. The Drs said it was from stone damage, but not a big deal. So here it is 2005 and I have had no kidney problems lately. So me and my sister took a quick 3 day camping trip to Kentucky, a 5 hour drive south. Well during the whole trip I could not pee, not even a drop. But I was sweating profusely and had no swelling of feet, legs, hands, arms or face so I thought it was no big deal. Well after I returned home that is when I talked to my Parents about my little problem. My Dad gave me a choice- go to the ER or he was calling an ambulance. So I went- feeling stupid for going when I was in no pain though. Well they got me right it. Put in a catheter and only got 40 out of it, thats when they began to think it was serious. They then ran blood tests and told me my kidney numbers came back " bad- really bad", and that I had Acute Renal Failure.
They then put me in ICU for 2 days and said they think it was a reaction to a new blood pressure medicine they had put me on recently. My BP was 78/19. Once my BP was up, I was able to pee and felt a little stronger they sent me home. I'm still waiting on the results from the ultrasound of my kidneys and hope they can tell me how to keep my kidneys working and my BP where it needs to be.
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Postby trigger » Sat Jul 16, 2005 9:49 pm

hi i am trigger. married to alex age 39( on friday22nd july) he has renal failure due to his diabetes which was diagnosed 8 yrs ago renal failure then followed 18mths later. he has been on A.P.D now for 2 months doing really well.his father is also post transplant ( 10 yrs this year) his was also due to diabetes. he is really well. hubby's mum also chronic renal failure yep diabetes, not on dialysis. his brother diabetic not in rernal failure. oh and by the way i am a qualified nurse. A strong family history eh.
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new here

Postby kasia » Thu Jul 21, 2005 8:36 pm

Hi! I'm Kasia. I'm new here but I find this forum an amazing place! Great to be able to get feedback from people with similar experiences!!
Short about us: me and my darling kidney boyfriend Svein.
Bad things:
Svein has had diabetes for over 30 years. He had a bone cancer when he was 19 (now he's 41) and had his right leg aputated.
He lost his eyesight completely in 2001, and his kidneys failed too.
Good things:
February, this year, Svein got a new kidney from his sister (Marianne! I'll be grateful to this girl all my life, 'cause I was checked to be a donor, too, but didn't match so well).
Bad things again: Creatinine has been "moody" and swung up and down a little. Now it's round 140-147. Is that alright? Svein is struggeling with cyclosporine and prednisolone side effects: myopathy, sky high blood sugar, high blood pressure.
Good things again: We've been together for 6 years and hope for a less "eventful" future now, going for a cabin trip this weekend :D
We got a talking cell phone lately for Svein and that is a great device (Owasys 22C), reads sms, phone functions, tells you who is calling before you pick up so you can pretend you're not home when you want to avoid your caller :wink:
Hope and wishes: get rid of muscle weakness! get a islet cell transplant and get rid of diabetes!!! (has any of you got it?) and many more.

Best wishes for all of you with kidney problems! Hope it's gonna work out well for all of you.

Kasia
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Postby Faye » Sat Aug 06, 2005 9:04 pm

Well, I was going to do this as my first post (eventually) but guess now is as good a time as any :)

Well, as my ID says I'm Faye. I'm 28 from North Yorkshire.

I'm not a renal patient, although I am a diabetic (which has it's own set of problems to contend with! LOL).

I decided to join the board to learn more about things from a patients and carers point of view rather that a "statistical" point of view. This is mainly due to being close to JMan, wanting to understand better what he goe's through really. So I will apologise now if I seem to ask quite stupid questions :oops:, it is down to me wanting to understand better and not me being totally dizzy (which I can be at times believe me).

I would also like to take this oppourtunity and thank everyone for their kind messages for JMan, his family and also the ones for myself too. They are appreciated by everyone and it's extemely comforting to know that there's alot of support on here ... it's really fantastic.

Thanks for reading :P
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Welcome Faye ;)

Postby Elaine » Sat Aug 06, 2005 9:43 pm

Hiya & welcome Faye to the board :D

Thanx very much for keeping us all informed about Jim (Jman) and is a pleasure to have got in touch with u although through obviously a difficuilt time etc at the moment.


Take care and speak soon Elaine & Rach ;)
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