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Doctor's Orders Oppose all Spark's Mandates!

Saturday, December 17, 2011

I visited a nephrologist this past Thursday (yesterday?? Seems like a long time ago!) because in recent bloodwork my sodium level, which should be at 136 to be healthy was at 117--a point at which seizures and worse can occur. Because of this, my elbow surgery which was scheduled for this past Tuesday was cancelled (for the 4th time! ) by my GP and this time permanently. He decided that it had reached the ridiculous point after all of the medical hold ups (extreme uncontrollable HTN for example), that it was not going to be safe for me to undergo general anesthesia in any event and so he cancelled the whole surgery. He said to me "Because it is of a somewhat elective status, we can't take a chance unless it is absolutely necessary." Well, if you ask me reducing the current screaming pain in my elbow IS absolutely necessary! But I guess we don't see eye to eye on this one and me being the lowly patient: I lose.

So anyway back to the nephrologist. He told me "Eat as much salt as you want or can stand and do NOT DRINK any water...! Maybe a few sips to get your food to go down...but nothing more!." This to a person who regularly consumed several liters per day beforehand. Well, I agreed to try and cut back. And I have...to about 2 16 oz bottles a day. I can't honestly imagine drinking less than this. Granted I have days when my body seems to require less but on a high need day...that's the lowest I can do. I understand the logic behind the doctor's mandate: the less fluid in your body, the more concentrated the sodium left behind. The more fluid, the more diluted it becomes. But you know, I just cannot convince myself that having skin dry as paper (as mine is now) and a tongue that absolutely is stuck to the roof of my mouth due to lack of saliva, can be good for anyone. It would seem to me that the risks of such foolishness would far outweigh the benefits. And this is a way of life they want me to continue.! Lke FOREVER!

Sorry doc, ain't gonna happen. I have chronically low sodium , and while it has never been quite this low before, I've never had a seizure or a hallucination due to it. And I'm not worried about it now. The other option is to stop taking the mood stabilizer Trileptal, which is the only drug to have successfully stabilized me for the past 5 years (along with some others) This is the drug which can plead guilty for causing my low sodium levels. The thought of trying to be weaned from it is tempting...surely there are others to try. I will talk this over with my psychiatrist next time I see her. I'm sure, should i suggest it, my husband will hit the ceiling. But you know what? Let HIM try to drink this little or go without really necessary surgery...and then we can talk.

I know I will get mixed comments on this blog. There will be those of you who support natural medicine and who will oppose the doctor's orders as I do...and those of you who will rebuke me for disregarding the doctor's orders....but I really feel that I'm doing the only thing I can tolerate; the ony option I can live with .
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Member Comments About This Blog Post
  • DOREENKNIGHT64
    Is this mood-altering drug one that you habituate to? If so you may need to come off it anyway. There is usually an alternative, isn't there? Or a slightly different formulation?

    Long-term medication must be a partnership between you and your doctor, so negotiate.
    3193 days ago
  • LUNADRAGON
    Major hugs, Cynthia, I am speechless!
    3193 days ago
  • CONTENTCHRIS
    I am sorry but if a med is taking salt away from you and you salt is low? why take it? I understand we feel we must have this or that to be sane but..I am sure taking something that harms you physically and helps a bit mentally is more harm then good? Just my 2 cents worth... have a better week I hope, Chris emoticon
    3198 days ago
  • no profile photo CD5645667
    Hi Honey!!.
    I so agree with Linda.
    You need to get the problem of the meds you are taking sorted out so's you are having less sodium!!
    You must drink water,it is the essence of life .
    As for seeing another doctor I also agree
    You would have to go through all though everything again ..

    I am sending love and healing Vibes your way...
    You know I love and care for you my friend.
    Susie emoticon emoticon
    3198 days ago
  • _LINDA
    If there is a replacement medicine you can take instead of the one giving you low sodium do look into it. That is ludicrous to cut back on water -its what we need for life! Dehydration is dangerous! It would be asking for more health problems down the road. As this Dr. had a good track record with you, breaking in a new Dr. would probably be more trouble then its worth..
    I dealt with painful elbows for twenty years before finally getting surgery -it was a rarity in those days. My elbows got so bad the radial head was worn right off and other parts were fractured. I was reluctant to get it done at first because of the risk -they have to move a major nerve out of the way to put the replacement in, and if something goes wrong, you could end up with a paralyzed hand, so I went with my left one first as I am right handed to see how it went. Fortunately, my surgeon was very skilled..But I will say with RA, when it has done as much damage as it can and there is nothing left, the pain actually will ease off eventually. The trade off is being crippled up with limited range of movement -which is why 1/3 of RA patients end up permanently in wheelchairs -when there is no more bone mass left for them to put in replacements :( So all I can advise, is more waiting and get the sodium problem looked after and see if it won't make a difference. I really don't think one Dr. can tell another what to do -its elective surgery and should be up to you, as long as the surgeon thinks its safe to proceed, its his opinion that matters.
    Will be thinking of you and knowing exactly what you are feeling :(
    Hugs,
    Linda
    3198 days ago
  • no profile photo CD11085420
    I am praying for you to have discernment... you know your body even better than the doctors do. May God give the doctors wisdom, and you affirmation in your spirit as to what is best for YOU!
    emoticon
    3198 days ago
  • no profile photo CD10895053
    Good luck to you whatever you decide. I'm thinking of you all the way! emoticon
    3198 days ago
  • CANDOK1260
    i am not telling you to change doctor but ain;t there anywhere you can get a second opion I will pray for you
    3198 days ago
  • DEDICATED2HIM
    The only problem is that the doctor who canceled the surgery has been my main doctor for over 20 years...He's saved my life numerous times...and leaving him is not easy ...NOT because of attachment on my part...but i know he would be very offended. And because I have to always be admitted to the same hospital he works out of because my husband works there pretty much guarantees that I will be bumping into him again. It would be highly awkward.
    Also, he personally called the surgeon personally and spoke to him telling him that my health is too precarious to undergo general anesthesia at all. So after that, what surgeon would operate on me...like EVER!!? AND I also need two shoulder replacements (to be done by same doctor) as well as my elbow! totally a bummer. I'm in really bad pain and soon won't be able to use my arms at all...and I"m SURE the surgeon won't touch me now.
    3198 days ago
  • PICKIE98
    I agree with flori78 on the fact of YOUR decision.. Maybe in place of some of the water, you can eat juicy produce like celery, apples, oranges, melons.. add salt to them or saltines or broth.. for part of your fluid consumption.. I would consult another doc about the surgery though,, let HIM be in pain,, I am guesstimating that all the docs are men....nuff said.. ask them how long they would stay in pain,,
    if it was me, I would have a straw and drink a saturated glass of salt water every day..re-do my labs and hunt for a new doc..
    3198 days ago
  • CANDOK1260
    my only advice isif your insurnce allow get a 2nd opion from another doctor.
    3198 days ago
  • FLORI78
    I dont think any of us can really advise you on this... it's a decision you'll have to reach after weighing up all the pros and cons for yourself, along with the advice from your doctors. I hope you find a solution that enables you to move forwards. No great pearls of wisdom from me... but just a listening ear. Take care xx
    3198 days ago
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