Going downhill fast

[MooseMom]

DD, I'm really glad that your neph doesn't have such an inflated ego that she'd immediately pooh pooh any hypotheses offered by a fellow doctor.  If upping your sodium bath doesn't do the trick, at least you know she has tried and has been openminded.

If this IS the answer, how long will it be before you will begin to see improvement in your bp?  Any idea? 

[Desert Dancer]

DD, I'm really glad that your neph doesn't have such an inflated ego that she'd immediately pooh pooh any hypotheses offered by a fellow doctor.  If upping your sodium bath doesn't do the trick, at least you know she has tried and has been openminded.

If this IS the answer, how long will it be before you will begin to see improvement in your bp?  Any idea?

You can't imagine how relieved I was, too; I tried to word my email very carefully to make it plain I was NOT going behind her back and NOT actively trying to seek out a diagnosis from someone else.

If this is the answer, the question of how long is a very good one. I'm not sure anyone will have the answer to that, though. It seems the problem itself is rare and unstudied and the solution even less so. I guess I just have to hope for the best.

(PS: My nephrologist just called me. She thanked me for the new data and said if this is the answer it should take about a week to show results.)

[paris]

   Good for your nephrologist.  Love a doctor that listens.   

[MomoMcSleepy]

DD, I'm sorry this is happening to you, and I hope the calcium increase helps!  Please keep us posted, and feel better soon.

Take care, saying a prayer for you.
Momo
 

[Bajanne]

Sorry that I have only just seen this.  I am happy that something seems to be happening, and I look forward to great results, as you keep us posted. Been having some challenges of my own.

[boswife]

this warms my heart ( sending much thanks to our MM) and i hope this will be your answer.  God bless you and our angel friends who give of their time and hearts to help...

[cassandra]

Great MM, I really hope the calcium will do the trick DD,

lots of love Cas

[justjen321]

I'm so sorry to hear you are going through this DD. In my short time here, I've followed you because I love your down to earth, straight forward approach. I truly hope that the calcium resolves things and you can go back to dancing, and having mind blowing sex while connected.

Jen

[AguynamedKim]

I hope the calcium change has a positive effect, DD.  Thinking about you and sending positive wishes.

[noahvale]

^

[billybags]

D D how are things going?

[pdpatty]

Let us know if increase in calcum works.
 Info I found gave low blood pressure as symptom of hypocalcemia. Most people who have had this surgery have to take calcium supp for rest of life.
 If this is found to be your problem,I would want to know how she could have missed it.

[Desert Dancer]

Well, it's been 10 days since I started the new bath and two weeks since I started the OTC calcium. It seems to be helping, if only marginally. Two weeks ago my BP bottomed out at 54/38 at a weight of 64.3. Now I can go down to 61.5 and still have a BP of about 85/52, sometimes getting up to the 90s/60s. It's not much, but it's a start. At least I'm feeling better and functionality is slowing starting to return.

I had my rounds with the doctor yesterday and she arrived in the middle of a conversation with the dietician. The dietician wasn't in the loop for this decision since I went straight to the doctor with my request for more calcium, and she's pretty unhappy about it. She's convinced I'm getting too much calcium and was really focused on the serum calcium. The doctor interjected and made it clear this was just an experiment since nothing else seemed to be working and it seemed worth a shot. That comment made me a bit nervous because I don't know how soon she'll want to see results before she changes my prescription back and personally I think it needs to be given a go for at least 3 months or so.

Patty, quite frankly I have a lazy doctor who's not the least bit proactive. Every change that's been made over the course of my treatment has come at my prompting. Her default is to 1) assume whatever's happening is not kidney-related, and thus not her problem, and 2) throw prescriptions at it to cover the symptoms when it's determined that (x) IS kidney-related. There's no one in my clinic who goes actively digging for answers; they're all quite passive. If I want root causes addressed it's up to me to do so. I do have to give her credit in that she's very good at listening to my suggestions and allowing me to take the lead in making my own decisions about things like medication changes. Looking back at the aftermath of the surgery, though, it's actually quite shocking (knowing what I know now) that I only supplemented with calcium for one week post-surgery. I didn't have any way of knowing that serum calcium didn't tell the whole story, but she or the dietician should have known.

Guess I'm just going to keep plugging along with my fingers crossed.

[MaryJoe]

DD,
I'm glad you're starting to feel better and that your BP is slightly better.  They may be baby steps, but at least they're going in the right direction!  

MJ

[AguynamedKim]

Thinking about you, DD, and hoping your doing better.

[Rerun]

I'm having the same issues so would like DD to update a year later.

My bp is low going on Dialysis, and so they can only pull so much before they have to turn my UF off.  My fluid is pooling in my FACE and I am miserable.  I wish it was my legs.  I finally got a Rx for Midodrine and will take 5mg tonight before dialysis.  Reading on here it doesn't help much.  It helps me to sit and think about dying and who will take care of Tia and how my boss will find out that I'm dead.  I get so stressed out my Bp jumps to 115.  But then I'll fall asleep and it drops.  I can also go to the YMCA's Sauna and sweat some off but that is no way to live.  I try and limit limit limit my fluid.  I swear to God I don't know how I can gain fluid.  I don't eat much because that makes me thirsty.  So, I end up losing dry weight and I have no idea what my dry weight should be.  The low BP plus full of fluid face is affecting my vision.  Pressures in my eyes today at the eye Doc was 33 in each eye.  He wants my pressures in my eyes in the teens before considering cateract surgery.  Yes, I'm on eye drops. 

I just need to get some fluid off.  I'm thinking I have about 3kilos on and it is just hard for my heart to push that around.

[boswife]

 i ment to get in on the post about the "sauna" but just reading this i thought i'd add here..... Bo's dr would not let him do a sauna *due* to his low blood pressure.  He said it would be dangerious.  As i think of it now, i thought it was due to extreme heat, but dont know that that was it.  Bos bp goes to 89/38/60's at times during D and though it worries me, his norm is only 90's/40's/70's so oddly enough, this is something (probably wrongly) that hasnt concerned me horrably.  What is 'low' for you?

[Rerun]

I'm at a clinic so it scares them when I hit 70/...  But I feel fine.  They shut me off.  I know the Sauna is probably dangerous but I need to lose fluid and I'm just plain desperate!  I'm going to take a 5mg tablet of midodrine here in about 2 minutes.  I will expect a miracle.

           

[MooseMom]

Did you get your miracle?

[Rerun]

It's been 4 minutes..  I'm still waiting.

   

[MooseMom]

Gosh, Rerun, this drug sounds a little scary.  At what kind of clinic are you?

[Jean]

Best of luck and I hope this puts an end to it. Low BP is nasty feeling, and scary too.

[Desert Dancer]

Rerun, don't you do nocturnal? Calcium requirements for nocturnal are generally higher than they are for conventional dialysis.

1) You tend to lose more calcium the longer you dialyze
2) If you're no longer taking any binders then you've lost that as a source of calcium as well

I wish I could do a more in-depth update but I want to answer you as quickly as possible. Keep in mind that my calcium issues were precipitated by my parathyroidectomy but even so, being on nocturnal may have eventually put me in the same position anyway.

• I tried Midodrine. It did nothing whatsoever.
• I tried discontinuing my atenolol. That did nothing except cause tachycardia so I restarted it but at half the dose.
• I tried lowering the temperature on my machine. That didn't help either.
• I had my thyroid and adrenal glands checked. Nothing.
• I had a full body MRI with contrast to make sure I didn't have any tumors. I didn't.
• I finally said "Enough" when the doctor - who flat admitted she had no idea what was going on or what to do about it - referred me to a neurologist.

Though the doc and the dietician went into flying hyperventilating fits I insisted the calcium in my bath be raised. In-center conventional usually uses 2.5 CA and my goal was to raise that to the 3.5 CA bath. The doc started me off on the 3.0 bath in May 2012 and it did nothing. I finally flat out demanded it be raised again and she did so last August. Within a month things had begun to improve marginally, and within six months (this past January) my BP was just as normal as it gets.

I'm still on the 3.5 CA bath and have maintained normal BP ever since January. I am always just mildly hypercalcemic - around 10.5 or so - and there's a lot of pearl-clutching over that fact but they just have to get over it. The new doc - at the very first appointment - decided he wanted to re-invent the wheel in regard to the whole issue. He even called me at home after rounds, insisting it was my original disease that caused the low BP and that surely my other family members had low BP, too. I finally had to tell him "I AM NOT REVISITING THIS ISSUE AT THIS TIME. PERIOD".

It may not be the solution you need, but it surely was the answer for me. Just thought I'd throw that out there. If you want supporting documentation or anything else just PM me and let me know.

[kitkatz]

Rerun I am having the same problem with the low BP at nocturnal dialysis. May be we need to go back to four hours for awhile drag those BPs back up. 
I love my nocturnal though.  I do not have fluid pooling but my dry weight is going up and up because of low BP crashes.

[Rerun]

The Midodrine did work for me.  PTL !!!  I took it at 5pm and got on the machine at 7pm.  So in 2 hours I started to feel chills.  I get the same reaction with sudephed.  Chills like you are getting sick but I didn't feel sick... just felt weird.  But, My BP was up about 20pts just enough that they could keep my UF on.  All I needed was 300 an hour off.  We have not been able to even get that off.  But, thanks to my Tech Tyler.... we got it off.  There was a time when I did drop down to the 50's and the nurse insisted on giving me 200 back.  I was not awake for that or I would have had a fit. 

So now I have to be really careful over the weekend. Maybe sit in my hot car of it is good weather.     I'm sure I have another 1500 extra on.

I will keep the calcium in mind DD, and ask my neph.  This low BP sucks.  Thank you for your response DD.