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Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 3/16/2011 7:34 PM (GMT -6)   
 
     ...starting to get worried. Starting to get really worried. The latest call is to test my Kidney function / creatinine yet again!! Yes, that is 4 times in one month. 7 times in the last 7months. Also, for a separate set of blood work I am not allowed to eat or drink anything after midnight. ANYTHING? Not even water???? How is that possible? Don't even do that for the sugar test. What kind of test could possibly require that? Also... I do not like having to go without my meds until 8:30 am. I taken them at 5:00 am.
 
     ...I need some communication about what this is all about soon or I am going to loose my mind. smhair I NEED someone to TALK to me about what the heck is going on!!!! Meeting is next Monday.
 
cry  

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Post Edited (Mrs. Dani) : 3/16/2011 11:18:20 PM (GMT-6)


nvrthesame98
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Date Joined Jun 2008
Total Posts : 6706
   Posted 3/16/2011 8:57 PM (GMT -6)   
By Golly Mrs Dani that is alot. Me thinks if they were not telling me why I would obtain my own personal copy of those labs,all of them and see what pops! I think I might begin by determining if they are fluctuating alot are they high,low,what the heck is making them look so hard at them.

Now being in the medical field a good many years in my other life I dont recommend self diagnosis but hey no one wants to say here Im sure going to think you have a right for a look see.

There are a wealth of good medical sites on the great world wide web that can give you norms for these labs and then tell you what might and I stress might be going on,dont get all bent out of shape over some far fetched numbrers being off or that those numbers being off mean your in some kind of failure as many many causes can and do throw those numbers off including meds,vits,the very treatments we use to help us.

At least you will be informed and I have found the more I know the less I worry about it,its all in the knowing and the things in the dark are the scary.

You have a right to one free copy of any medical record you may have and that includes labs,call wherever you had them done and ask how to get it the fastest way.

Good luck to you and Oh dear I always hate it when they say nothing to eat or drink,always seems to me I am that much more thirsty knowing I CANT have it. Meds are different and I always make it a point to ask if I may take the important ones with a sip of water even if I have to do that a little early to stay in their needed time zones. Now they may ask what you need to take and it may be that your pain meds are one you cant take due to some effect on the test results and in that case make sure you take them with you so you can take them ASAP after the blood draw is done.

Good luck to you

momtofourangels
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Date Joined Apr 2010
Total Posts : 2261
   Posted 3/16/2011 9:42 PM (GMT -6)   
Oh dearest Dani. I know you're scared and you do deserve to know what's going on. As previously said if I were you, I would get a copy and see what's in there. See if there's anything that looks alarming. It doesn't look like your numbers could change that much in a month, but I'm not a doctor. I wish I was so I could help you a little at least. Just know that I'm here for you and you can vent or whatever you need to do. I'm so sorry Dani that you have to go thru one more thing. If you could just say poof and it would all go away. *hugs* Take care. I love you my dear friend.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/16/2011 10:42 PM (GMT -6)   
 Dear NTS,
 
    Well, it is strange how it all came about.. I had gone to see my endocrinologist. Nothing exciting, he sees me ever 2 months or so. He likes my routine blood tests done about a week before I see him. He's a great guy but wont let me go to long without seeing him ( Hypoparathyroidism ).This last time I went in he says to me "At first it wasn't much concern as it is normal to have some fluctuation with regards Kidney function and creatinine . This time it is a bit worse than before. I will talk with your doctor." So, previous "routine" blood work showed abnormalities. I literally didn't give it another thought. He is one of those "micro manage" folks. I was sure it wasn't a big deal.
 
    about a week later I had to get a CT without and with contrast for two of my other doctors, nothing bad. They were just investigating some stuff. They had to check my Kidney function before I could get it anyway, so it was two birds with one stone.
 
     I got called 2 days later saying that my kidney function and creatinine  had worsened since my last Lab was done. I needed to re test it. Which was a little over a week. So, I was told yet again to get it tested at the end of the week. I was given an appointment to "talk about findings".
 
     Well, yet again I get called this week. Kidney and creatinine! I also have to fast for testing being done tomorrow. The strange part is that it is no food and no liquid of any sort. Which is odd, I have always been allowed water at the very least. That is tomorrow morning. Speaking of which... maybe I should make myself an Ice cream sundae while I still can..
 
      I was a little apprehensive at first, I just don’t want to have any of meds switched. Now I find myself wondering if something more is going on. I just don’t like to be left in the dark. At first I was not worried. Now I am getting anxious and worried.
 
*hugg*
  dani
 
(I cannot believe I have to go without my med cocktail. That is gonna hurt, gonna hurt a lot)

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Post Edited (Mrs. Dani) : 3/16/2011 11:19:08 PM (GMT-6)


CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/16/2011 11:02 PM (GMT -6)   
*Hugs* Dani - Wish I had some useful input on your tests - my only guess is that perhaps for your kidney tests this time they need to know precisely what your 'intakes' and 'outputs' are, but I think it's strange that nobody has explained things to you.

Am thinking of you

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

purplereading
Regular Member


Date Joined Nov 2010
Total Posts : 108
   Posted 3/16/2011 11:05 PM (GMT -6)   
Ir the kidney function is continuously decreasing, as the creatinine elevating, they are probably suspecting kidney failure, and they are not able to filter out the impurities. NOrmal creatine is abou 85-100 for women. They also check glomular filtration rate. Usually creatinine is checked on 24 hour urine, as well as blood. It would be my guess that things are changing more constantly than they had wanted. If caught early, stages of kidney failure can be helped with meds, diet. etc. They probably want to make sure they are getting accurate results, therefore are making sure you are not eating or drinking before the test. IF AT ALL possible, try to take the test they way they wanted, take a bottle of water and meds with you so you can take you meds asap after testing. goodluck

chatters
New Member


Date Joined Mar 2011
Total Posts : 17
   Posted 3/17/2011 12:05 AM (GMT -6)   
I have had hundreds of labs done due to the nature of my illness. (malabsorption syndrome resulting in numerous vitamin and mineral deficiencies) In my history, it is very common to do a test with no food or drink after midnight. I am hardly ever allowed to eat after midnight before labs are drawn. I just thought that was normal. As for the creatinine level, mine is .3 normal range is .7-1.4. What I have been told is that levels can very for many reasons, not just kidney dysfunction. In my case, my levels are low due to muscle injury and muscle wasting. When you are hurting or injured, you can loose muscle mass from not using the injured area for a long period of time. Becoming immobile from pain in walking will also do this. I also have hypoparathyroidism, and it causes leg pain and kidney stones, but has not affected my kidney function to my knowledge. Does any of this apply to you injured tissue, or becoming less and less active? I always get a copy of my labs every month so I can be proactive in managing my illness and pain. I do not self diagnose, but I do keep informed so I can try to help myself. When I first started this nightmare, my doctors were shocked and scrambling due to the numerous lows and highs in my lab results, but after 5 years now they say well for you low is normal and because it is a chronic condition, they have lost the shock factor and don't scramble to make me normal. They just say well you are not in the hospital and are still alive, so for you it is a good day. Therefore, when something is low or high, I adjust my food and supplements to get better levels in that area. I too have questions about kidney failure and it is frightening, but what I stated above is the answer my doctors gave me. I hope this helps you and all goes well with your test. My thoughts will be with you.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 3/17/2011 3:26 AM (GMT -6)   
Sorry for all you are going through, Dani... it's definitely scary to not know where this thing w/ you is going and what the future holds, I'm sure.  Hang in there today and I hope your lab work all goes smoothly....
 
Keep us updated on how you are doing... Hugs, -Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 3/17/2011 5:46 AM (GMT -6)   
Hey Dani, Wow honey what the heck? I am so sorry you are going through this right now. My gosh, how could you not be worried. I hate this land of the undiagnosed. Test after test and it takes so long for some answers.

I hope you get some explanations and answers soon. We all love you bunches and know how much you go through on a daily basis. Please keep us posted, take care girl!
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 3/17/2011 5:46 AM (GMT -6)   
Dani, I am sorry for the things going on right now. Doctors don't consider the emotional effect that testing without answering questions can cause. I am praying for you!

Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw


Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, arthritis, kidney stones, depression, 7 pelvic surgeries for pain, ovarian cysts, adhesions. Fentanyl patch, Vicodin, remeron, trazodone, dicyclomine, Miralax, Colace, Multivitamin

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/17/2011 6:54 AM (GMT -6)   
Hi Dani, So sorry the Doc's have you on an emotional roller coaster right now! It truely sucks big time for sure when they scare you and you don't know what the heck is going on!!! I hope Chatters is right and maybe your results have something to due w/ the changes going on in your body and not kidney problems!!!
I'm praying a little extra hard for you now but please know that you, David & my little Bumble (honey) Bees are always in my prayers and my thoughts!!!
Much Love comin your way!!!
Pete

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/17/2011 12:54 PM (GMT -6)   
Dear Chatters,
 
    I do not have Malabsorption. There are a few ways to get this problem. Low Magnesium. Extensive radiation. Auto Immune. Accidental injury from surgeries in the neck. The last is congenital (born with abnormalities). I have "Inherited Hypoparathyroidism". It is congenital. It went on for many years before it was diagnosed so I was / am left with the more extreme complications and damage.
 
     I was born with my first cataract, my second when I was 7, you can guess how the rest went... I had my first synthetic lens implant by the time I was 21. I have since lost my vision 2 more times. This last time there was nothing they can do. The tissue is softening.
 
   The  paraesthesia caused me to learn how to write with my left hand. I am now ambidextrous. The seizures are not so bad. I just wish everyone would calm down while they are happening, and stop trying to get me to talk. I cant talk. Also, they make me tired. The tetany isn't so bad... but the tetanic contractions in my throat are difficult and make my doctors nervous....
 
    A little over a year ago I bit into a piece of sausage and a tooth crumbled out of my mouth like chalk. The next day 2 more crumbled out like chalk. By the time I got into my dentist the next week I had lost 10. By the time they were able to begin my dental reconstruction surgery I had 6 teeth left. 2 of those 6 were not viable. I had complete oral reconstruction done. It was a huge undertaking. It took 3 months for initial recovery. 6-8 months for complete recovery. On the plus side I have a georgous man-made smile now.
 
    During that time my doctors were scrambling and an endocrinologist with extensive experience was called into the team. He had seen it 2 other times before in the "inherited" form.
 
    I do have extensive problems with my spine that began when I was 27. I am 30 now. I have progressive spinal deformities. There is no cause to be found, yet. Idiopathic. I have a primary progressive Levoscoliosis that spans T10-SI. Lower thoracic through all lumbar. It is moderate classification of cobb angle. As a result my right hip is rotated towards the rear of my body and up into my ribs on the right hand side. My left hip is being crushed. I have a Dextroscoliosis T2-T9 (contained within the thoracic only). It pushes out my shoulder blade, pushes my ribs out on the side and makes my collar bone "seem" uneven. A compensatory "tilt" that forms as a "defense mechanism" to the spine trying to realign itself above that.
 
     Hope that kinda help with a little history. Hope I didn't confuse you.
 
     With regards to the blood.. they always take blood. I don't normally mind. I know my doctors mean well, they just get.. they just check every last thing, all the dang time. I am very used to labs where fasting is required, but I am usually atleast allowed water. Not this time.
 
     It isn't like them to make me wait until finding appointments. Well, "findings appointments" do happen about 2 times per year since all the crazyness started. That is where they all group up and discuss annual testing / imagry. Don't normally have to wait so long for communication though. I hope what ever is happening, that they can treat it. I already have a lot on my plate.
 
   ...I am so greatful to finally get some medication in me! It was a long morning.
 
*hugg*
  dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Post Edited (Mrs. Dani) : 3/17/2011 8:11:19 PM (GMT-6)


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 3/17/2011 2:24 PM (GMT -6)   
   Dear Dani , I'm so sorry my Sweet Friend you've got to deal with all this stress , your a wonderfully brave woman and the greatest friend . Please try to be as calm as you can , I know it must be difficult , you dealing with a lot . I think of you constantly and pray for you always , if there is any justice in this life this will work itself out . But I get the not knowing is frustrating , but soon you'll be there and hopefully get some answers , with you goes my thoughts my heart and my best wishes always . love you lots , Mikel

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/17/2011 7:55 PM (GMT -6)   
 
   Gosh. I am not sure what I did to deserve to have all of you in my life, but goodness I am so glad you are all here with me. It takes a lot of the "scary" out of all this medical madness. It is so much easier to be able to talk about how I really feel regarding all of this instead of having to make it sound better than it really is. Makes a huge burden so much lighter.

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
Mail

flower123
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Date Joined Apr 2009
Total Posts : 856
   Posted 3/18/2011 3:32 AM (GMT -6)   
Hi Dani. I'm a little late here. I'm sorry that you're going through so much. When you have your appointment on Monday, do you meet with one doctor who has talked to other doctors, or do you meet with a lot of doctors? Monday is not that far away, but I know that when you're waiting for something, a couple of days can feel like an eternity.

I hope that they find out exactly what is going on, and can then treat you and give you some answers.

I will be thinking of you.
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