The saga continues. So finally my Primary Care doctor is back from vacation and I snag an appointment. My blood pressure since the change in medication has been high and my nephrologist just keeps upping the doses. I was at 150 mg of Metoprolol (is that a record?), 320 mg of Valsartan and 20 mg of Furosemide. I stopped emailing him because I didn't want anymore raised doses since I felt like a zombie. The more he raised the dose, the more my body said "hold my beer". So I show up at my appointment with the Primary Care doctor, and the nurse takes my BP and doesn't say anything, and then she waits a little bit and takes it again. Finally, she tells me it was 180 over 100. Twice! So, the good news is that at least they know I wasn't kidding. (Made me think of the epithet on Spike Milligan's tombstone - "I told you I was sick") Anyhoo, I told her that he had taken me off Amlodipine 10mg because of my puffy ankles. So she puts me right back on Amlodopine but this time 5 mg. And she wants to see me in one month. One week before I am due to see the nephrologist again. lol. So what is the protocol when two doctors disagree and the patient is in the middle? I've got my fingers crossed that my ankles don't do anything too untoward that would offend the nephrologist!
Blood Pressure Disaster - Part Deux - Kidney Disease
Blood Pressure Disaster - Part Deux
YOu are so funny. Great sense of humor. I went through something similar. Neph reduced my Irbesartan because my potassium was going up. Then she upped the amlodipine to 10. And...added at first carvedilol. I could not sleep as carvedilol creates great insomnia. The worse I have ever had. I would wake up at 2am, and that was the end of my sleep. My brain became a marching band. I asked to come off of it and she put me on Metoprolol and I could not breath. It was not working and I felt like crap. She then went and put me on hydralazine and holy smokes that was awful. Did nothing for my BP. But all I could hear was my heartbeat and it would give me a headache. I took myself off of that. Meanwhile, for the first time my legs were blowing up like piano legs. I went to see my cardiologist, he agreed that the hydralazine was a no go and he reduced the amlodipine to 5mg. He said 5 mg was as effective as 10 without the edema. I stayed on the lower dose of the irbesartan and amlodipine until I started dialysis. Then it was striping my BP meds so now I take 300 of the Irbesartan, which was what I was on originally for years. I highly recommend that you see a cardiologist and let them take care of the BP.
If I didn't laugh, I would cry at this comedy of errors. I did feel a little sorry for my doctor - she couldn't let me walk out the door with BP that high without doing something (or sending me to the emergency room). And, imo, she did the right thing by overriding the nephrologist and I will let duke it out if they want to. Sounds like you went through a similar situation with the line up of awful drugs. Of all the BP medications, carvedilol (Coreg) was actually my favorite. 15 years ago my cardiologist (when I lived in Tampa) prescribed it. After I started taking it I started being able to speak at work meetings without feeling shy. I mentioned this to my cardiologist and he said that people took this drug before making speeches because it reduces performance anxiety. I don't remember if it gave me insomnia but it really helped me out at work. Interesting that your doctor said 5 mg of Amlodipine was just as effective as 10 mg. See, I think that Amlodipine is the only drug that is actually reducing my BP. I started it two days ago and my BP today was 127/80. I am convinced that Valsartan doesn't work for me at all and Metoprolol only marginally works (it does lower my heartrate) but that is not the kind of thing you can tell a doctor without some heavy duty side eye. Still thinking about acquiring a cardiologist but I can't get over thinking it would demonstrate I don't trust my doctors.
You need a doctor that listens without all the answers! I want partners not dictators. My doctor wants me on a statin. I researched it and says it brings down numbers but no data if it extends life so what is the point. I don’t take it.
AHH yes, dueling doctors. I’ve been there very recently. I finally decided to have a candid conversation with each of them individually. My key points:
1. I expected them to work together to develop a comprehensive treatment plan that assured renal health while controlling my CMV.
2. I would defer to the nephrologist for all renal issues and the infectious disease specialists for my CMV management.
3. I expected them each to consult with each other before all of my appointments. I made it clear that I wouldn’t attend appointments unless they did this. My alternative was to insist that they both attend all my appointments. They definitely didn’t want that!
4. If they weren’t able to get my CMV in target range consistently while maintaining my overall renal health by March if 2024, I’d seek outside consults which we would then adhere to to try and resolve my treatment issues.
I made it clear that since Mayo and other hospitals had figured out how to work as interdisciplinary teams I had no doubt my team could learn to do the same. Mine had actually taken to disparaging one another to me in appointments… I felt like I was dealing with kindergarteners who hadn’t learned how to play together in the sandbox.
They are now working together. We have tried an alternate CMV treatment plan for my fourth CMV flare up. So far the CMV is testing “not detected” for the past three consecutive weeks and <35 for two consecutive weeks before that. So, 5 consecutive weeks with it at target or better. And my renal panel data is doing well. These two just needed to be inspired to work together.
Jayhawker
Jayhawker, I like how you read your doctors the riot act but I am not sure my doctors are going to be singing Kumbaya together any time soon. Your doctors are experts in different fields - my doctors are both "experts" in blood pressure so it's a matter of pride for them to be right. I have a problem with my nephrologist changing my medication so radically and a bigger problem with the way he kept increasing the dose of a medication that clearly wasn't working. I guess we'll see what happens; I have appointments with both of them next month and so I am really curious to see how the nephro reacts to the change my primary care doctor made. What I will NEVER understand how I went from BP that was totally under control to now taking more than double the amount of medication to get a result that is just okay.
Well, your nephrologist is a specialist. Your PCP isn’t. So, I suspect you’ll only get to better outcome either by adding a cardiologist to the mix as Bassetmommer suggested or by trying a different nephrologist.
Regardless, your current treatment plan isn’t achieving workable outcomes. If there has been no additional deterioration in your renal health and you’ve developed no other medical problems, you’d expect your BP should be relatively stable. Although, that being said, mine will elevate either with stress or a higher sodium intake. Low fluid intake will cause low BP for me.
Jayhawker
My husband has stage 4 bladder cancer. He is in remission right now. He was being treated by a urologist in asheville, a cancer doc in asheville and one at Duke u. And also UNC. The all worked together, forwarded med records to each other. It was a wonder to behold. Wish they could all do that
Wonderful example of what medical professionals can do when motivated and fully engaged in their profession.
Jayhawker
I agree with Jayhawker that your Dr's need to talk to each other and coordinate. I have fired 2 nephrologists so far, but my 2 most recent nephrologists have been very good. I don't suggest this lightly, but you have to take care of you.
I think I would ask to see a cardiologist if you haven’t and maybe a stress test . My cardiologist is the one that regulates my blood pressure and blood thinners. High bp is scary but I kind of calmed down about when my dads was nearly 300/200’s and they sent him home ! Wow I’d been afraid to leave the ER . Good luck wishing you the best
Once you realize you are NOT a patient, you ARE a cash cow. My nephrologist does'nt listen to a word I say. I had to go AMA sand be put on the Transplant Center naughty list (inavctive transplant list) because he would not even try what I vwas asking. You have to diagnose yourself and if they don't give you the proper meds, then time to find a new Dr. I too have high blood pressure the only meds that have dorked for me are hydrazal9ne, clonidine (work too well) and Entresto. Good luck. Do your research.
Any doctor can prescribe blood pressure meds - nephrologists, primaries, physician assistants, etc. But the doctors who follow the research and have the best grasp of blood pressure drugs are the cardiologists. My hubby followed the advice of his nephrologist, changed his blood pressure regimen, and had the same outcome as yours. So he then went to his primary who, surprised at his high readings (similar to yours), returned him to a prior med but at a higher dosage. His nephrologist was completely fine with it - he seemed relieved that this seemed to be working. It did so for perhaps 3 or 4 months when his blood pressure suddenly sky rocketed to the 240s/120s level. His kidneys simply quit working. He was immediately hospitalized and put on hemodialysis. That solved the problem - the water/toxins were removed and his blood pressure dropped to near normal levels. Later, when he visited his cardiologist for a heart exam, the cardiologist reviewed his history and told him better and newer blood pressure meds existed at that time that likely would have kept him off dialysis for a while longer. So we learned the hard way about the value of a cardiologist. Looking back, I wish we had known more about the role of the kidneys in blood pressure readings. For many, as kidneys fail, they don't remove water efficiently so that results in fluid retention. (One may notice changes in urination too around this time.) This in turn, makes the heart work hard to circulate the blood to fix that problem, creating high blood pressure. That high blood pressure then increases the pressure inside the kidneys, destroying important filtration vessels. Thus, even more fluid is retained, blood pressure continues to rise, etc. It becomes a vicious cycle. Often, heart attacks or strokes precede kidney failure. So it's very important to find the right combination of blood pressure drugs to lower it as much as possible - the combination is often different for each person since our biologies and tolerances differs. Throughout, it's important to keep an eye on creatinine, BUN, and other hard data since those tell what is happening inside the body in real time. We were shocked at the sudden appearance of dialysis in my hubby's life. But the signs were clearly there - in the lab data in front of us - we simply didn't notice or follow the trajectories. (And doctors probably assumed other doctors were filling us in.) I'd like to add that I truly hope your latest blood pressure protocol helps stabilize your kidneys and other organs. It's truly a gift when treatments work out well.
Thank you for sharing your story - it's very helpful. Your husband's experience is remarkably similar to mine and honestly since the change in my medication all I could think about is what the high blood pressure was doing to my kidneys. Yesterday was the first day where my BP was normal all today and today the readings are even better (Average 115/63) so going back on Amlodipine seems to have done the trick for now. If I decide to go to a cardiologist, do you think I should tell the nephrologist and primary care doctor in advance or should I just do it and let them know next time I see them?
My husband didn't tell them in advance...my husband simply told the doctors about any changes in his medications at the time he saw them. They just took note of what he said and that was that. So, since your blood pressure is very good now, I likely would do nothing now and simply bring up your change in meds at appointments. If your nephrologist wants to fiddle with this wonderful outcome, I would then definitely solicit the opinion of your cardiologist before switching to something new. No one will argue with a cardiologist. (And you also have a wonderful primary who went to bat for you.) It's amazing to me that you managed to actually return your blood pressure to normal; my husband's blood pressure lowered somewhat but didn't go back to anything like yours. I do want to stress, however, that these are my opinions only; I'm not a medical professional. And medical professionals generally know best. I'm exceptionally happy for you - you've made my day!
Just a thought; if you don’t already see a cardiologist it might be a good idea to get an initial visit scheduled. The cardiologist can get “baseline” data on you before your BP becomes a problem again. This would also give your PCP and nephrologist a “go to” specialist to address BP issues for you.
Of course, I’m quite the advance planner… My mother used to say that I was busy organizing my family while still “in utero.”
Jayhawker
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