Going downhill fast

[Desert Dancer]

I don't know what's going on. My echocardiogram was normal but I've gotten to the point where I can barely function. Even with midodrine 3x a day to raise my blood pressure I'm still averaging 70s/40s, even after not dialyzing for three days. I have no strength at all and no stamina whatsoever. I'm dizzy all the time and things that used to take me an hour or two now take all day long because I have to rest every 15-20 minutes. I can't talk or chew for more than a minute or so before my throat seizes up. I'm nauseated all the time.

Nephrologist has ordered thyroid and adrenal function tests. Obviously I don't want them to be anything but normal, but it sure would be nice to have some answers and a possible path back to health. Keep your fingers crossed for me, please. 

[jeannea]

That sounds just awful. I'm sorry things are this tough for you. Hang in there and keep pushing until someone gives you an answer. 

[Poppylicious]

Everything that can be crossed is crossed for you, DD.  Hope they get to the bottom of it soon.

*huggles*

[paris]

I am sorry this is going on.  Have you had any med changes lately?   Any tiny changes in anything?   It is hard to even imagine you so weak -- you seem so strong and well, healthy isn't the right word, but in control.   When will you have results of the tests?  We'll be anxious to hear how they are. 

[MooseMom]

DD, this is really troubling news.  Does anyone have a clue as to what might be causing this?  Your bp is awfully low and certainly points to a problem.  I hope you find some answers soon.   

[boswife]

oh i so know that feeling of just show me what it is!!  You scare me and i hope that this will be solved NOW, today!!  My prayers are with you..

[big777bill]

 Having chronic illness sucks! I know you must be scared half to death. It's awful having something going on and no answers. I will pray for you fervently. I hope you're feeling better soon. God Bless, Bill

[Whamo]

I'm sorry to hear about your low blood pressure.  I would try drinking a tall Starbucks coffee.  But that could be bad for you.  Who knows?  At least you'd get a taste of some good java.  You might try moving around too.  That works for me after a dialysis session, when I'm under 100, and have to get it up to get out of the kidney center.  I will pray for your recovery.  If I were you I would pray for recovery so you would be able to do something good for someone else.  God loves a good heart (I hope).  As the great poet, Dylan Thomas said, "Do not go gently into the night."  Or something like that.   I'll be rooting for you.

[amanda100wilson]

I know how bad low BP can make you feel, and to be honest, with it that low, that may be the explanation for all thee symptoms that you are having.  i know when mine is low, I can't really function, andmy muscles ache, particularly in my back, which I attribute to my muscles struggling to work with insufficient blood.  I also get cramp around my neck muscles. could it be due to you taking off to much fluid because you have gained real weight? Just some thoughts.

[Traveller1947]

We all know how it feels when blood pressure drops too low, but to have 70/40 all the time--that sounds like a nightmare!  I'm so sorry this happening to you.  A heart problem could cause this or dehydration, but these are only guesses, and not helpful to you, I realize.  I'll be praying for you, desert dancer.

[cariad]

I clicked on this title and am shocked and dismayed to see that you are the original author, DD.

I am terribly worried right now. You are IHD's rock star of home hemo and dedication to proactive self-care, and this all sounds so debilitating and scary.

Could Amanda be right? Is there any way you need to adjust your dry weight up a notch? Also, are you limiting salt too much? I know barely enough about dialysis to even have the vocabulary for it, but I suffered from low blood pressure for quite a long while, and it seems that I require more salt than the average person. This sounds like a vasovagal event times 10, and the only thing that got me over the nausea and complete incapacitation of one of those was downing a packet of straight salt.

I wish I knew how to help. Let's hope your doctor solves this mystery and that the answer points to a clear and painless path to recovery.

[noahvale]

^

[Annig83]

 

[okarol]

Sounds like fluid is way off, poor girl, so sorry! 

[monrein]

So sad to read this DD....and will keep everything crossed that you will get some answers and of course some resolution really soon.

[cassandra]

I'm so sorry DD, just a suggestion, have you tried to drink Cup-a-soup in stead of any other drinks for a day? it has that stuff in that increases some peoples BP, and heart-rate. I used that when my BP floored, worked for me, but not for everybody.

Good luck, lots of strength, and get better soon.

love Cas

[Whamo]

Cassandra's idea is a good one.  At our kidney center they give you chicken broth if you crash like that, and if more fluid doesn't help.

[MooseMom]

DD, would you mind terribly if I posted the link to this thread over on Home Dialysis Central?  Dr. Agar over there is an expert on dialysis, particularly home dialysis, and he might have some ideas.  I know he can't diagnose you over the web and wouldn't even try, but maybe he had a patient like you at one time or another.  I won't post the link until I have your permission to do so.

I hope you are feeling better today.  I've been thinking about you all day and have been very concerned.

[Desert Dancer]

Thanks for all your responses and concern. Sorry I haven't checked in sooner but I just haven't felt very well.

I am sorry this is going on.  Have you had any med changes lately?   Any tiny changes in anything?   

This all started happening early in January. The only change at that time was my parathyroid surgery in December. Everything else is exactly the same.

Could Amanda be right? Is there any way you need to adjust your dry weight up a notch? Also, are you limiting salt too much?

Naturally the very first thing I thought to do was adjust my dry weight up. My weight has been 58 kilos the whole time so I adjusted it up to 60. Then 61. Then 62. Finally I just deliberately fluid overloaded myself up to 66 kilos AND didn't dialyze for four days so it would stay there AND stopped taking my atenolol; the highest my BP went was 90s/50s. The thing is, if I'd gained that much real weight - 17.6 pounds or more -I wouldn't be able to get into my jeans and it would be apparent to everyone. Even the neph finally admitted it wasn't my dry weight.

I asked about sodium modeling and she doesn't want to do that, though my chloride is low and they suggested I get more salt in my diet. The thing is, though, is that sodium would just make me retain fluid and I've already demonstrated that doesn't work.

Hi DD - I've experienced the same. 

Seems as though they never found the cause for you, either. That is not encouraging. Did they ever do adrenal or thyroid function tests on you? My EKG and echocardiogram both came back normal and that's what they're doing now, plus blood cultures. I've looked up hypothyroid symptoms and it all seems to match up. Obviously I don't want a diagnosis like that but at least I could do something about it if it is.

I'm scared to death about this affecting my fistula or - like you - vision or something even worse. I'm the only one who seems to have any sense of urgency about this. I thought it had only been going on for two months but when I went back and looked at my old flowsheets it seems the last time my BP was normal was just after I had my parathyroids out - in December. It didn't start really affecting me until February. That's when I started logging symptoms.

I'm so sorry DD, just a suggestion, have you tried to drink Cup-a-soup in stead of any other drinks for a day?

No, but at this point I'll try anything. I love ramen noodles and they're something like 1000% sodium.

DD, would you mind terribly if I posted the link to this thread over on Home Dialysis Central?

MM, don't mind at all. Any thoughts or ideas are welcome at this point. My neph says she's seen this happen with some of her other patients but they were long-term patients. I've not even been on D for two years yet.

[cariad]

Hi again! Apologies for being so dense, DD - it says right in your first post that you tried skipping dialysis treatments, so obviously extra fluid is not the answer. I feel like rather a dolt.

OK, so I did a bit of googling. It seems that there is not much agreement on this due to conflicting data, but there is evidence that some patients DO experience prolonged hypotension following parathyroidectomy, and one abstract I read stated that this started a few months after the initial operation (and the population was hemo patients). The suspicion is that it is down to hypocalcemia. Has your nephrologist checked your calcium levels? A few reports I read did mention "debilitating" hypotension, but as you've suggested, these were in longterm dialysis patients who then went on to have parathyroidectomies. This abstract suggests that there is an as-yet undetermined link between calcium and blood pressure: http://www.ncbi.nlm.nih.gov/pubmed/8651246 Oh, and an antihypertensive (Nifedopine) seemed to be able to drop blood pressure much more effectively in post-parathyroidectomy patients, and again, low serum calcium seem to be behind this finding.

Additionally, I looked up natural remedies for hypotension. These answers came back repeatedly: epsom salt bath (I would not recommend this as hot baths tend to lower my pressure, and I think the same result could be had from ingesting sodium) or beetroot juice. I don't know if beets are safe on the renal diet, seem to think they are. If you think you can choke down beetroot juice, they suggest that people see improvement in 1-2 weeks of taking it twice daily.

Beyond that, I hope your nephrologist or Dr. Agar has something enlightening to offer. I'll be thinking of you and hope to hear that you are the improve soon.

[MooseMom]

OK, I've posted this to Dr. Agar...

http://forums.homedialysis.org/threads/3368-Mysterious-hypotension?p=22291#post22291

Maybe he will have some ideas.  This just strikes me as very odd.  I'm sure there is an explanation, it's just a matter of discovering it.

[willowtreewren]

this makes me so sad....

I haven't been able to post or read much here lately and it was hard to come back ans see this. DD, I hope you can get this sorted soon.

Aleta

[MooseMom]

DD, Dr. Agar has posted a "hypothesis" for you over here...

http://forums.homedialysis.org/threads/3368-Mysterious-hypotension?p=22291

Have a read and see what you think.  We all realize that it is unethical to diagnose a patient over the internet, sight unseen, so his answer is, while well thought out and very comprehensive, just one more possibility to consider and something to discuss with your neph.

I hope you get this sorted.  PLEASE keep the reports coming in.

[Desert Dancer]

I have just posted my own response to Dr. Agar and here it is:

Dr. Agar, I must thank you from the bottom of my heart for taking so much time out of your day to provide such a long and detailed response. I cannot tell you how much I appreciate it and I think you have some very lucky patients.

I just wanted to let you know that I copied the bulk of your response to my nephrologist via email this morning, less than three hours ago. Apparently you made quite the convincing argument because she is increasing the calcium in my bath from 2.5 to 3.0 as of today! It has always been 2.5 and I was only on calcium supplements for one week following my parathyroidectomy. So we will get to test the calcium-based theory.

A fervent thanks also to MooseMom for posting my dilemma here and getting the ball rolling. If this increase in calcium takes care of my hypotension both you and she will deserve all the credit for it.

Keep your fingers crossed! Thank you so much, MooseMom. I don't know why I never think to go over to homedialyis.org.

[paris]

This is a great example of helping your fellow kidney friend.         Thanks Moosemom for going above and beyond.  DD, maybe this will be the answer.   At least they are looking into this instead of dismissing it.   Good luck.