I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Desert Dancer on July 13, 2012, 01:03:03 PM
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I received an email from Dr. Agar regarding his unofficial speculations about the cause of my low blood pressure. I just wanted to share the response here since it pretty much summarizes the situation. The only thing I didn't really detail is the depth of the abysses I have been to these last couple of months. The way I have been feeling has prompted me to actually get my affairs in order, beginning with making sure Andy has all the information he will need as far as insurance, paperwork, internet passwords, etc, and a rough draft of my living will. It has really been bad.
Dear Dr. Agar -
I'm so sorry I have not updated you before now; things got much worse before they started getting any better and I still haven't quite stabilized. I've spent several months unable to do even the most basic tasks, so I do hope you will forgive the delay.
My doctor ordered the new (3.0 CA) bath in May and I had my first treatment with it on May 9th. However, I only had two treatments of the 3.0 before leaving for New Jersey on vacation and the center where I dialyzed only had the 2.5 CA bath. At that point my BP was in the 70/40 range - where it had been for about six weeks - and it only got worse. After returning home I resumed the 3.0 bath but my BP kept dropping until finally one evening I lost consciousness immediately after going on the machine. When I regained consciousness my BP was 57/33. That was May 26th.
By the middle of June - three weeks on the 3.0 bath - my BP was up to 110/70 - a tad lower than my normal, but normal. Normal! My serum calcium at that point was 10.7 and my phosphorus and PTH were 2.2 and 45, respectively. By the end of June my calcium was 10.2 and my BP had dropped back down to the 90/50 range.
At this point I had rounds with my doctor. She insisted that I continue with the Midodrine, even though it had had no effect and I'd been on it for two months with no liver enzyme tests. She also wanted to start me on Flourinef (sp?). She had prescribed it two months earlier but told me not to take it until my cortisol levels came back. This time she denied ever saying that and told me to take it with the Midodrine.
I went home and thought about it and came up with the following conclusion: if I wanted to discover the root cause of the problem I couldn't throw three different solutions at it at one time, because if the problem resolved there would be no way of knowing which had been the solution. My aim was to prove that the calcium was the solution, so the calcium should be the ONLY changed variable. I emailed my nurse and told her that I politely declined to take the Flourinef and that I would be discontinuing the Midodrine, as well.
My phosphorus then dropped to 1.6 and PTH to 22 and my doctor told me to start eating as much phosphorus as I wanted, which I did. My BP promptly plummeted back to the 80/40 range within two days of the increase in phosphorus.
(A side note: It seems as though my diastolic BP is struggling to come up more so than my systolic.)
That seemed like proof-positive to me that the calcium was doing the trick so I took it upon myself two weeks ago to increase my calcitriol to .75 mcg per day and also started taking 500 mg of OTC calcium. When I did so my BP went back up to the 100/70 range. The problem is, I can't tell my center I did that because it wasn't ordered, but there you have it.
So here's where things stand now: I've stopped the OTC calcium and the extra calcitriol and BP has dropped accordingly (80s/50s). I stated to my center that I wanted to increase my bath to 3.2 CA and my calcitriol to .75 mcg, but the doctor will make no changes until after I draw labs again this month (the reason I stopped the extra calcium and calcitriol), which I suppose is fair enough.
I'm convinced the calcium is doing the trick but I don't think it's enough calcium. Here's my problem: the doctor and the dietician are FREAKED OUT about the slight hypercalcemia and she wants to drop me back down to a 2.5 bath. I don't think there's any way in hell she'll increase the calcium OR the calcitriol (she's only prescribed .5 mcg per day). They refuse to believe the parathyroidectomy has anything to do with anything even though the problem started almost immediately after the surgery. She wants me to see a neurologist because she thinks it's neurological even though there is NOTHING to indicate that. She flat-out stated that's she's shooting in the dark on this. I am the ONLY one bringing any possible solutions to the table and they are going out of their way to pooh-pooh every study I bring them; I'm quite certain they'll find a way to dismiss the increase in BP corresponding to the increased calcium, or the dropped BP in response to the lower calcium. They are completely focused on the hypercalcemia to the exclusion of everything else, notwithstanding that I felt 1000% better when my calcium was high.
I asked my doctor, "How many nocturnal patients have you had in your career?" She and the dietician gave each other a blank look and responded, "Well, um, there's you... um, there was one other before you... and when we had the clinic there were eight, so uh... ten." A grand total of ten nocturnal patients over the combined course of their careers and I am currently the only nocturnal patient in the entire state of Arizona. So even if I wanted to consult with another neprhologist here - officially - for a second opinion, there's no one I can consult with because there's no one who knows anything about nocturnal, no one to back me up. Here's a funny thing: when I was in-center in NJ the nephrologist there did rounds with me. (Everyone in the clinic made their way to my chair, as a self-care nocturnal patient I was a real curiosity.) He sat and chatted with me for a while and I explained what had been going on with my BP. HE AGREED WITH YOU 100%. So that is not one, but TWO unsolicited second opinions that agree with each other and neither agree with my doctor. She doesn't want to hear it.
So now I am at the end of my rope and I'm not sure what to do. I KNOW the increased calcium is resolving the problem AND I can demonstrate it but they will not listen. I am afraid they are going to insist on decreasing my bath again and I just can't do that. I can't. There is absolutely no point in doing dialysis if the low BP is going to rob me of any semblance of a life. I understand the implications and consequences of hypercalcemia but I am only asking for MILD hypercalcemia. I know the risks but there are risks either way and - if it were up to me - I would rather risk a bit of hypercalcemia and have my life back. They are more concerned with covering their asses than they are about my quality of life and every word out of their mouths has confirmed it.
So, short answer: yes, the calcium was/is the problem. My heart - and the cold, hard numbers on my flowsheets - tell me you are 100% right. Getting my doctor to see it, however, is another matter entirely.
Any more good advice? :)
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:cuddle;
Sounds like you've been through the wringer lately! Hope you can slap some sense into your doc soon.
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Oh DD, this is just fascinating, it really is.
First of all, I am so sorry that this whole ordeal has taken such a toll on you that you were actually having to "go there." But I am glad you're BACK! :yahoo;
How frustrating it must be for you to have a medical team that is so timid and solely interested in the preservations of their buttocks. But having met you, I have every confidence that your own good judgment and thorough research and experimentation will eventually win the day. I don't know what it will take to convince your neph, if that is even possible, but you stick to your guns and keep working on trying to educate her. I'm really eager to hear what happens next.
I so hope you get this resolved very quickly. I want to see you in good health because you are our poster woman for good NHHD.
I regret that this has to be such a battle. Your neph should be working with you, not against you.
Thanks so much for posting this update. I have been waiting for it eagerly!
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Dear DD
I have left an answer on my Q+A page at Home Dialysis Central.
JA
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I've started to answer this a few times, and stopped, because I can't figure out how, precisely, to say what I want to.
This whole thing pisses me off. I'm all for docs being cautious, but as a thinking adult, you have a right to participate in your own care, and it smells a lot like you are being denied that.
Ask for a second opinion? Find and print as much research as you can? Explain that as an adult, you'll happily sign something saying you know she's concerned about the risk of the calcium, and that it was explained to you?
My husband and I are so damn fortunate, and I don't always realize it until I read posts around here about struggles with doctors, nurses, and clinics. I don't know where you are located, but I hope there are a few Nephs around there you could possibly switch to. Surely, somewhere, there's one who wants to hop on this nocturnal ride with you and be your partner.
I guess my question for your doctor would be about your current quality of life. Kidney patient have so damn much to deal with anyhow that something FIXABLE shouldn't really be an issue?
As a side question, why can't you tell your Doc or nurse that you altered your meds? Is it a compliance issue stemming from transplant down the road?
Meh. This is kinda a grumpy bug post, but what I've read of you shows someone who has worked hard to educate and empower themselves to manage their healthcare against a really crappy disease, and you aren't being listened to.
Jen
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DD, after reading JA's response over on his website, I want to apologize to your neph for my comments on this thread. He's made me realize that your neph is merely out of her depth. Your case is outside of her experience, and I'd bet she's feeling a bit intimidated and concerned. I'm sure she wants to help you, but she realizes she doesn't know how, so her way of dealing with it is to resort to what she is familiar with.
It seems like she might not have the confidence nor the experience to think outside the box.
JA made me realize just what a different beast NHD really is.
I am no psychologist, and you can certainly handle this, but perhaps you can take a different tack, depending on what kind of person your neph is. Maybe the way to go is to gently try to educate her and give her some confidence, to make her part of your team instead of trying to beat her over the head with your research (not that's what you are doing, mind you, but you know what I mean). Don't make her feel defensive, rather, make her feel more confident so that she will listen to you. Share your research instead of flogging her with it (again, not that you are flogging her with anything...).
JA's response is so interesting! I hope it helps you. Please let us know how you get on. I think you might be well on your way to some solutions! Hurray!
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Ask for a second opinion? Find and print as much research as you can? Explain that as an adult, you'll happily sign something saying you know she's concerned about the risk of the calcium, and that it was explained to you?
As a side question, why can't you tell your Doc or nurse that you altered your meds? Is it a compliance issue stemming from transplant down the road?
He's made me realize that your neph is merely out of her depth. Your case is outside of her experience, and I'd bet she's feeling a bit intimidated and concerned. I'm sure she wants to help you, but she realizes she doesn't know how, so her way of dealing with it is to resort to what she is familiar with.
I wish there were someone to go to for a second opinion but there is not. I am the only nocturnal patient in the state.
Research? I've printed out every single paper to which Dr. Agar directed me and printed out copies for the doctor and the dietician. They have found a way to dismiss or counter every paper I've brought them with papers of their own trumpeting the dangers of hypercalcemia. I find it interesting that they can expend the effort to shoot down my hypothesis but won't expend the effort to offer any hypothoses of their own.
The problem with the med changes is this: my clinic told me that they could be shut down if the records are audited and what I am taking does not match what is ordered. If I make any medication changes at all they have to be told immediately so the orders can be changed. With the extra OTC calcium and extra calcitriol I actually did ask first and was answered with a resounding NO! Problem is, the only way I could test the calcium hypothesis and see if my BP came up was to do it, so I did and it worked. However, if I go back to them and say, "See, it worked" it's the same as saying, "I ignored you, did it anyway and didn't tell you". My concern is they will use that as a reason to involuntarily discharge me, since they could say I am endangering my own safety and their jobs.
You know, it might not be a bad idea to volunteer to sign an 'AMA' form in exchange for higher calcium. I may certainly end up doing that but what if she refuses even then? What are my options? Can I even GO to a different doctor for my dialysis prescription, one not affiliated with my center?
As for flogging my team, MM: while I like to think I am far more circumspect with my words there than I am here, the naked truth is I am the least tactful person I know and I generally speak my mind with minimal filters. I know this is a problem and believe me, I have struggled mightily to soften my 'rough edges' but I have just never, ever been successful in the long term. I'm not nasty or angry and I don't ridicule. I do state my case aggressively (not loudly), particularly when there is a lack of trust and that could certainly be construed as an attack. I just don't beat around the bush; why pussyfoot around and take fifteen minutes to say what could have been said in one? It still completely baffles me that people find that offensive but there you have it. I guess it's an unrealistic expectation for two or more adults to have a conversation where everyone just gets to the point.
Sorry, I got way off track there although the above paragraph does demonstrate a self-created dimension to this whole problem.
Anyway, here is the core problem:
They DO NOT believe the parathyroidectomy is in any way relevant. To them my BP issues are just a coincidence.
They DO NOT believe calcium is the problem. To quote my doctor, they view this increased calcium as "this little experiment of yours".
They DO NOT believe there is any difference whatsoever between conventional dialysis and nocturnal, calcium-wise. If I can't convince them of this then where does that leave me? When I explained the communication I was having with Dr. Agar, do you think it helped my case? No, they heard "patient roaming the internets" and shut down.
They DO NOT believe they're out of their depth with NHHD. They give me the distinct impression that they believe I'm inventing differences just to get my way.
Now tell me: how does someone like me find a way to tactfully say, "You're out of your depth, here, let me educate you"?!?!? (No, I have not actually said those words. I do have some filters!)
This is a marketing issue on my end and calcium-colored blinders on their end. What I really need is an in-person advocate they would respect. I may be at an impasse.
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Well, DD, now that I've read more of your thoughts on this, I have to agree with you. I do see the core problem, and I guess I was being a bit too optimisitic regarding your neph's mindset. You really shouldn't have to have all of these filters in place if you're dealing with a reasonable, educated and confident adult. The fact that your medical team doesn't make the effort to hear you out BUT makes the effort to shoot you down is very telling, so I agree with you that you might well be at an impasse.
We're always encouraged to be pro-active in our care and to take personal responsibility, but if they don't like our brand of "personal responsibility", then they let you know. The rigid rules and regulations stifle your attempt to get the best care for yourself, and that's just not right.
Being the only NHD patient in the state certainly makes it more difficult! You're just too much of a pioneer! LOL! You've outlined the problem very well, and I sure wish I had an answer for you. I really don't know how you go about convincing such close-minded, results-oriented medical people to really LISTEN to you. Perhaps exploring the "AMA" option is a start. Let us know what you decide. This is such an interesting situation! Are there other NHHD IHDers who also have calcium problems? Doesn't amanda100wilson do NHHD? How about Bill Peckham. They both use NxStage, though...does that make a difference?
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Dear DD, I so feel your frustration. I don't know how it works in Arizona, but I would think that your nephrologist is working in a hospital? Is there a Medical Director in charge? In Holland I used to write to the MD if I knew I was right about my care, and got nowhere with my neph. Also you could see what your insurance company (medical department) says (they don't know anything about NHHD either, so might try the internet, and evidently end up at JA, or at least be more open to your experiences, and patient-expertise)
I've been lucky so far in the UK to always find at least on neph who actually listens, and uses his own head. Although he surprised me during my last consult, after I said I'd discovered that taking Cinacalcet twice my dose, every other day had a major effect on improving my Pth. He said: How can you do that, you are in a trial!!.
lots of luck, and love Cas
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A response is at HDC.
JA
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A response is at HDC.
JA
Hmm, my second post and your second reply are not showing up for me. I'll have to wait a little while, I guess.
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@Desert Dancer
Yanno, I should apologize. I know you've probably thought of these things, but I'm kinda pissy over here on your behalf. Nothing, NOTHING makes me more upset than a doctor who doesn't listen, and who isn't open to OPTIONS. Being a doctor is about discovery and constant learning, not retaining what you learned oh so long ago in med school and never wavering. It's a living, breathing profession.
I don't know what type of center you use, but there has to be a medical director.
Drastic, but what about here? http://www.azmd.gov/
Also drastic, but what about Medicare, or your insurance company? (I know someone mentioned these things above).
As far as the AMA, informed consent, whatever people want to call it, I'm really not understanding WHY she would say no. (I'm certainly not questioning that, it just... pisses me off more.) As free people, we have a right to reject treatment, so why can't we ASK for treatment? Certainly since you aren't asking for something so damn 'controlled' or heavy duty. You want more calcium.
I struggle to accept that you can be held hostage to your doctor/clinic because you are the only NHHD patient in the state. There HAVE to be two heads to clack together to create a single damn brain between them. It is 100% unacceptable for you to be treated with some 'standard' when we ALL know that there is nothing standard about people, nor kidney disease.
It bothers me that you are worried 'What if they put me back on XYZ Bath, what am I supposed to do then?'. No one should feel that way. Ever. If you came across as asking to have some fresh blood of Jesus delivered to you because you were SURE that would cure your BP issues, I could see em thinking you were batshit crazy, but you are asking for something that's been studied, shown effective, and is DOCUMENTED. (I know, there's documentation for every side of every argument) But, your doctors argument isn't WORKING. It's CLEARLY not working. It's really sad to me that she isn't growing WITH you, rather, she's stunting your growth, and having a serious impact on your life.
I'm rambling. And I apologize. But I want to get my Neph, bring him out there, and set him down in your living room. :) He absolutely doesn't KNOW everything, but he KNOWS he doesn't, and he's been happy to try things that aren't the one true way, or explain to me in a way that makes SENSE to me why it is a bad plan. :)
Jen
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Yanno, I should apologize.
No, you shouldn't. ;D
I don't know what type of center you use, but there has to be a medical director.
I have rounds with the medical director every month. Yep.
It's a DaVita clinic. She stops in once a month and sees all the patients there at one shot. (It's a self-care/home training clinic, not a conventional center.) She's it.
Also drastic, but what about Medicare, or your insurance company? (I know someone mentioned these things above).
I saw that too, and I guess I'm at a loss as to how Medicare could/would intervene in a prescription dispute. Anyone?
As far as the AMA, informed consent, whatever people want to call it, I'm really not understanding WHY she would say no.
She hasn't said no - yet. But with all the pearl-clutching and hyperventilating that's going on over the increase to 3.0 I don't think it's too hard to predict.
I struggle to accept that you can be held hostage to your doctor/clinic because you are the only NHHD patient in the state. There HAVE to be two heads to clack together to create a single damn brain between them.
Yeah, I struggle to accept that, too. There are heads to be clacked together; I just don't think they're going to let me do the clacking. If I knew who to go to I would and I'd beg them to sit down and have a discussion with my doctor. I don't.
You are asking for something that's been studied, shown effective, and is DOCUMENTED. (I know, there's documentation for every side of every argument)
Unfortunately, they give their own documentation 10 times the weight they give mine (if they read it at all).
It's funny, doctors are supposed to be scientists. When I think of a scientist I think of someone on fire with curiosity, open-minded and digging for answers, with nothing ever carved in stone and the ability to say, "I was wrong" or "Hey, this hypothesis is crap. Let's come up with a new one". I'm sorry, but I'd be hard-pressed to say I've met anyone as incurious as this woman. She just wants to write prescriptions (that she doesn't do follow-up labs for). I want to shake her and scream, "ROOT CAUSES, woman, root causes, not SYMPTOMS!"
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Oh, sheesh, DD, this is frustrating.
I agree that what you really need is someone they respect, someone other than a lowly patient, to tell them exactly what you've tried and tried to tell them already. I would go to another doctor. If you cannot go to a different nephrologist, try to find a GP or maybe the doctor who removed your parathyroids? Surely that person has some insight to offer and can read and listen to the results of your own personal research?
If you cannot find a medical person to go to bat for you, I would seriously consider a lawyer instead. They may not respect a lawyer's medical opinion, but they certainly will respect the lawyers ability to have them hauled in front of a judge for malpractice. This would and should be a last resort, but hun, your life is at stake here and if you can find no relief anywhere else, you must go for the jugular.
Don't you dare censor yourself. That absent filter is going to save your life and your quality of life.
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Yesterday, I wrote out a long reply, and my computer ate it.
Are you saying that your doctor and medical director are one and the same?
My suggestions may or may not be for you, but having had to battle folks in the beginning of my husbands kidney disease, if this were me: (I need to state that I have never dealt with Davita. Only Fresenius and only briefly.)
This is all also based on the assumption that your doc and medical director are one and the same.
I'd start with whomever is next up the ladder at Davita. (Or the med director if my assumption is incorrect.) I'd begin by having printed matter a mile thick to support your request. If you have a GP, I'd also include a report from your GP on the state of your health. Print off Dr. A's info. Print off every sheaf you can find on the internet. Write a letter stating exactly what you want, and note that you are more than willing to sign a waiver if this is all based on your doctors fear.
If you do not get a reasonable response, keep moving up the ladder. And for me, this would NOT be a long process. I'd begin with phone calls, and plow ahead, all the while proclaiming that this was an extreme medical need, quality of life deteriorating alarmingly rapidly, etc.
The medical world can move very slowly, usually because they are busy, have XX number of patients, and are unable to think outside the box. Frequent calls, regular calls, help keep them moving forward, if only to shut you up.
All of this also assumes that you've had the frankest conversation with your doctor as possible, and made SURE to use the words 'I'm extremely unhappy with my medical care, and the response to a sudden change in my condition, and I desperately need you to get on the same page with me.'
Now. I'm confrontational when I feel I have no other choice. I refuse to be backed into a corner. I once spent a year battling with an answering machine company over a defective machine, and it wasn't until I started writing letters to editors, and returning their product to the CEO of their company in a box, after I took it outside and smashed it into ten thousand pieces with a fully documented letter explaining my attempts to resolve the issue, that I got results. From the CEO himself, no less. So, my approach to things may not work for you. I'm always pleasant, polite, don't use cuss words (out loud) but firm, and demanding of answers.
Your doc sounds scared of thinking outside of her box, and she has a nocturnal patient with whom she should be learning and growing with. That pisses me right the hell off.
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My husband is an attorney. This is way out of his area of expertise, but I'm going to ask him, anyway, if consulting a lawyer, as suggested by Cariad, might be of some help. I am wary of this dispute seeping into the legal arena...once you lawyer up, things can get out of control, but I am very curious to know what kind of legal recourse you may have. I can't believe that any doctor can hold you hostage to his own medical opinion because what if his medical opinion is incorrect?
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DD do you use Venofer? I read this in a site from Venofer itself
IMPORTANT SAFETY INFORMATION
Patients may experience shock, clinically significant hypotension (low blood pressure), loss of consciousness, and/or collapse. If allergic type reactions occur during use, use of VenoferŪ should stop immediately. Patients should be observed for signs and symptoms of allergic type reactions during and after use of VenoferŪ for at least 30 minutes and until clinical symptoms are normal. VenoferŪ should only be given when people, equipment and drugs are immediately available for the treatment of serious allergic type reactions.
Significant hypotension (low blood pressure) has been reported in patients who receive VenoferŪ. Hypotension (low blood pressure) following administration of VenoferŪ may be related to how fast and how much of the drug is given.
VenoferŪ should not be taken if you have symptoms of too much iron in your blood (including low blood pressure, taste disturbance, joint aches, and nausea/vomiting), or if you have a known allergy to VenoferŪ.
In studies, the most common side effects of VenoferŪ included a temporary drop in blood pressure, infections, taste disturbance, muscle cramps, swelling of the arms and legs, nausea, headache, and diarrhea. These are not all the possible side effects of VenoferŪ. For more information ask your healthcare professional or contact American Regent at 1-800-645-1706.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
lots of luck, love Cas
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Plus, this? : "But with all the pearl-clutching and hyperventilating that's going on"
Fantastic. :)
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My husband is an attorney. This is way out of his area of expertise, but I'm going to ask him, anyway, if consulting a lawyer, as suggested by Cariad, might be of some help. I am wary of this dispute seeping into the legal arena...once you lawyer up, things can get out of control
Definitely, and going the legal route when you do not have the luxury of time is the furthest thing from an ideal scenario, but the hope would be that the threat of legal action would be all that was required, rather than the actual legal action. Once it gets to the point of courts, everyone has already lost.
Would the NJ doctor be reachable and would he talk to your doctor on your behalf, since they have more nocturnal patients? You are the only nocturnal patient in all of AZ? Wow, that complicates matters. You need to find the doctor that you describe, the curious one who sees each patient as their greatest resource rather than an adversary. If it means switching clinics to get a new doctor, do you think you would be up for that? You live in a huge city, I just cannot imagine that there is not an answer out there for you. But I certainly don't know where that answer is.
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unfortunately in the dialysis world there are many who don't realize the nocturnal, in center or home, is a completely different animal with its own set of rules. what happens with with short term is so very different than long term that you can't compare the two. after 3 years of nocturnal and having my heart, brain and ears checked the conclusion that has been arrived at is more fluid, higher dry weight and salt! who would have ever guess. my calcium levels have been rather high and then so low that i got iv's. so for me it wasn't the calcium. my blood pressure would drop so low on the machine and at home that i would be dizzy all the time. i now eat popcorn as a snack at dialysis and add extra salt to it. however i'm lucky the medical team listens to what i say. i know i'm not really much help, however it does help to know that i'm not the only one with low blood pressure problems.
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Well, here's the latest:
Other professionals here in the States - other experts in NHHD - have now become involved in helping me make my doctor see reason. I've also been able to enlist the aid of my dialysis nurses as well. While my doctor is also the medical director at my clinic, apparently there is an overall DaVita medical director and my nurses have now gotten him involved, too.
My BP last night was 71/41; here is the email I sent my nurse as of then:
Andy just asked me to guess what my BP is based on how I feel. I told him 77/48.
My actual BP was 74/46 and - later - 71/41. I am non-functional - weak and dizzy - again, and the numbness and twitching around my lips and other symptoms have returned in the past two days.
I am very sorry but I am going to have to begin taking the OTC calcium and the extra calcitriol again. I cannot wait until the 30th to increase my calcium and I won't wait until I begin passing out again.
I am going to start out with 500 mg of OTC calcium and I may increase that to twice a day depending. I am also going to increase my calcitriol from .5 mcg to .75 mcg per day. I'll make sure I ask you before increasing the calcitriol beyond that because I know how quickly the serum calcium reacts to it.
I should add: I'm not going to go on the machine as planned tonight (the 18th) because my BP always drops at least 10 points on both sides when I go on the machine. I'm already in the 70s/40s to start with and can't chance that kind of drop. I tell you this to demonstrate that not only is the hypotension impacting my quality of life, it is also impacting my ability to access treatment in the first place.
Please let me know if you have any questions, and thanks for being supportive. It really means a lot to me.
I had a voice mail from my nurse this afternoon telling me the doctor is okay with this change. So things are moving forward. Slowly.
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Excellent excellent excellent excellent excellent! I am so very glad to see some small progress being made, DD. You're on the right track, now. Gosh, I hope you feel better soon. You've been through so much. :cuddle;
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Wow, I hope this will end the misery
love Cas
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:2thumbsup; Good advocating for yourself!
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Progress is good!
I'm glad that others are getting involved and that your doctor is starting to listen. I sure hope the changes in meds have you feeling better quickly. It'd have been a shame to have to go from Desert Dancer to Desert Dozer. It just doesn't have the same ring to it. :)
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I've been keeping you in my prayers. :pray; Hopefully you'll be feeling better soon. :flower; Bill
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Thanks to everyone for your comments and support!
I got a bit of unexpected good news yesterday: the DaVita medical director - the one my doc is consulting with - used to work with Dr. Agar. So I'm really, really hopeful that I'll be able to go forward with my plan after the 30th. Keep your fingers crossed!
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Updates lady, updates!
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Updates lady, updates!
Funnily enough, I was thinking this very thing just this morning. DD, how are things going?
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Well, I had my appointment last Monday and the doctor agreed to raise the calcium in my bath to 3.5K - just what I've been fighting for for the last six months. :yahoo; So I'm stopping binders - not that I took them often to begin with - dropping my calcitriol to .5 mcg and seeing what the calcium does all by itself.
I had my first treatment with the new bath on Saturday night so obviously I haven't seen any results yet; my BP last night was 54/32 and I'm pretty much couch-locked right now. It's starting to noticeably affect my cognitive abilities and I'm really getting scared. Please keep your fingers crossed that calcium IS the problem and that this will work.
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Wow - you have really been going through the mill. I'll be sending healing thoughts your way that this takes care of the BP problem pronto. :grouphug;
Anne
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I really hope the calcium does the trick and you're feeling better soon. Sending you positive thoughts.
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that must be scary for it to be that low. I hope that the higher concentration calcium bath helps.
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I'm cheering for ya. BP that low has to make you feel absolutely miserable. :(
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I swear to god.
My nurse called me today and told me the doctor wants me to come in-center and do short daily for a week. They're concerned because my BP is becoming "more emergent" and they want to observe me. I said, "More emergent? I passed out in MAY, I think it's beyond 'emergent'." No answer to that except an awkward "Yeah".
So I asked what benefit there could possibly be to coming in-center and getting half the dialysis I usually get, just when I've started the right calcium bath for nocturnal and stopped my binders. Well, she said, there will be nursing staff on hand. Uh, Andy's here with me. Well, we can give you saline. Yes? Andy can - and has - given me saline, too. Well, we can play with the sodium settings. Okay, that's something I can't do but the reality is I've already proven it's not fluid-related. That's the only thing they could point to as something they can do if my BP were to crash while on the machine. Doesn't take care of the root problem; it's completely reactive.
What is it these people don't understand about one thing at a time? Why do they want to keep farting around with all kinds of changes instead of just sticking to one solution and letting it play out? I've only had TWO treatments with the new bath, for crying out loud. Hey! I know what will make things better! Let's completely eliminate phosphorus control and fluid control, cut your time in half and see how THAT works. Yay, makes perfect sense. :Kit n Stik;
Not to mention that in order to get there I have to take two buses and a train in both directions. Just what I need to do: traipse around in 113 degree weather and pass out in the middle of the damn street.
I told her I'd talk about it with Andy and call her back before the end of the day. I'm inclined to pass. What do you all think?
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I agree about making one change and see how it goes. Messing around with a litany of possible factors is not going to help narrow it down.
How are you feeling now?
I don't have any answers but my instinct is to follow the course you're on, at least give it a chance.
:cuddle; :cuddle; :cuddle;
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My sister's boyfriend is going through a similar ordeal. He had a 5 hour prostrate surgery. They gave him the wrong medicine. My sister checked it out with a friend who is an expert on pharmacy drugs. The doctor refused to change the prescription. What could she do? Changed doctors.
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DD I would tell her that at the moment your body feels like trying the new bath for at least two more weeks, and if there's no further improvement you would love to follow her up on her kind offer.
lots, and lots of luck
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I'm late to the party but I'd pass. :)
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boy am i ever late on this one... Just want to send my support and :cuddle; and many :pray; and a plea for you to keep us informed.. :grouphug;
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Not to mention that in order to get there I have to take two buses and a train in both directions. Just what I need to do: traipse around in 113 degree weather and pass out in the middle of the damn street.
Yikes, that doesn't sound safe!
The only things I can throw out are -
- Has Andy ever gone with and advocated for you? He's a man but even moreso, he's not "the patient." I feel that my being with my husband saved his life many times. One time when I wasn't with him, a hospital even wrote on his chart that he was drunk, which of course was ridiculous.
- Do you keep a written record of problems, changes, etc.? I kept a page of my husband's medication regimen, and on the back kept his changes. It's amazing how many times it helped docs know when he'd started a new med, what antibiotics he'd had, etc etc. I also think that somehow having it written out made them pay better attention to my husband because they realized that things they did wouldn't just slip by unnoticed.
- Do you have a good ER that you can use for "emergent" low BP, with docs there who might be willing to prescribe differently than your docs?
Best wishes as you endure all of this.