Idh

Dear Dr. Agar,

I am a new in-center HD patient. I am waiting on equipment to arrive so that I can start NxStage and transition to home-hemo.

I have been doing a lot of research into IDH…unfortunately it appears to be an issue that is effecting me and not only is it exhausting any physical reserves I may have, it’s taking it’s toll on me emotionally.

The literature that I have read states that the UFR should never be greater than 10ml/kg/hr and the rational behind that makes perfectly good sense to me. My question is, how does an educated patient approach their physician regarding the UFR peer reviewed recommendation?

From the very first day I started I have had serious issues with hypotension, usually starting within the first 45 minutes of my treatment with the symptoms becoming more and more pronounced as the treatment goes on. We are doing four hours…so the length of time is good…but their standard protocol is to start everyone at a UFR of 200. I truly believe that my UFR needs to be readjusted…based on my kilo’s I shouldn’t be running at UFR greater than 183. With that said, it’s been difficult for me to explain/convince the unit nurses why this is so important. I’m actually of the belief that I should back down to a UFR of 8ml/kg/hr and work my way up to 10, but I’d settle for going down to 10 at this point.

What approach do you recommend? I’m meeting with my neph tomorrow and I would like to be armed with as much info as possible.

Thank You and have a great day!

Tami Ramsey, RN, BSN

Dx PKD 1988 age 21
Transplant Wait Listed 2010
Left Arm AV Fistula Dec 2010
In-center Hemo August 2011 age 44

Dear Tami … how to answer?

I am finding it difficult because I actually have very little information here.

While you are (perhaps) understandably focusing on the UFR, it is interesting to me that your blood pressure problems start so early in your dialysis run.

While I can probably make some educated guesses about some of the missing information: you are young and have a ‘primary renal disease’ (eg: APCKD) rather than a systemic disease (eg: diabetes), I do not know these things. But, I can take a guess - and it is just a guess - that your heart is in good shape (not a certain assumption) and you do not have the micro-vascular or neuropathic disease that accompanies, for example, diabetes. But you might be on medication – potentially anti-hypertensive medication – and that is not stated.

The first thing I would want to be sure of is that you are on no medications that might impact your blood pressure. If so, and before all else, this might need attention.

Secondly, I would want to know your weight … and whether you are overweight. While you may not be, it can be very difficult to determine – accurately – the dry weight of a patient who is overweight.

I would also want to know the status of your heart – perhaps with an echocardiogram.

Your serum albumin might also be important, though it is not immediately clear why you would have a low albumin with APCKD. I only raise it because it might be an issue. I simply don’t know enough of your case to know.

Why do I go to these things? Well, all can impact on blood pressure … especially early on in a run … and your blood pressure does seem to be dropping, from your description, right near the start of treatment. Even if your UFR is set early at 200, and even if this does turn out to be too great a UFR for you, it would be unusual for this to manifest as symptomatic hypotension so early in the course of your run unless accompanied by some other factor. As a result, it makes me wonder if there are other reasons for your low BP … pills, a cardiac output issue or – most likely of all – you are running too low a dry weight and there may be a need to reset your dry weight upwards now that you are established on dialysis.

You ask … “how does an educated patient approach their physician regarding the UFR peer reviewed recommendation?”

Perhaps my response, here, would be talk to him/her. Ask of your nephrologist the questions you have asked of me.

He/she will have the sort of information I do not. If it is your UFR, and that truly is the problem, then he/she will be able to easily exclude the issues - and there are others, too - that I have raised and come to the right conclusion.

While it may well be, as you have said, a matter of winding back the UFR, I am not yet convinced that is the only problem here.

So … talk it over with your nephrologist and your team. While it may correctly be a matter of lengthening your treatment to allow a lower UF rate of, say, 8ml/kg/hr, there are other possibilities that I cannot forsee that may equally be an issue.

There is nothing like having a talk with your management team. They are there and have all the information. I am not. They are ideally placed to solve this problem for you. I am not.

And, for my gut feel? With a higher dry weight, you will experience … less hypotensive episodes, less treatment-related hypovolaemic stimulation of thirst, less post-treatment thirst, less tendency to fluid excess between treatments, less interdialytic weight gain, less staff-patient angst and less of a need for a high UFR during the next treatment.

From afar, I suspect your dry weight assessment is at the core of the problem. But … you need a close up assessment. Good luck with your visit. I hope it all gets sorted.

Dr. Agar,

Thank you so much for you reply and I apologize for not being more precise with my information. I was totally focused on the UFR issue and didn’t consider that you would need more information.

I am 44, I weigh 73 kilos (the most I’ve weighed my entire life), have a normal serum albumin level and have held all of my b/p meds for the past ten days to determine if this has any impact on my blood pressure. I have no other co-morbidities other than polycystic liver disease which is stable and all labs are WNL. I do have left atrial enlargement (very mild) and a long history of sinus bradycardia with slight tricuspid regurg. Other than these things, I am an extremely healthy person.

To address the blood pressure issue more thoroughly I should have added this information:

From the second time I dialyzed until present, early in the process I develop this low, buzzing feeling that starts in my lips and then slowly progresses to the rest of my upper body and arms…by the end of the treatment the vibrating feeling becomes so intense and widespread that I can hardly pay attention to anything else. By the end of the run I start feeling “disconnected”, distracted, unable to concentrate, and I feel as though my equilibrium is off. I also have a pretty bad headache which usually starts during the last hour of my run. I have to sit for at least 20 minutes after I’m off the machine before I can walk to the waiting room to wait for my ride. I am debilitated for the rest of the evening, mostly due to the weakness and disconnected feeling I have…the vibration gets less and less over time and goes away sometime in the late evening.

From the very first time I dialyzed until now, within one hour of starting dialysis my systolic pressure drops 20 points or more. This is irrespective of whether they are taking anything off or not…we have not taken anything off the majority of my runs because of the hypotension. Therefore we have not established a dry weight yet. The most that has ever been taken off during any session was .9 and they stopped there because the last hour of my run my b/p was dropping too much. They’ve put me in trendelenburg, given me NS bolus’, administered mannitol and taken me off early…all to no avail. The b/p still drops and the symptoms still happen. They may take longer to happen…as when they administered the mannitol…I felt the best I had up until the second half of my four hour run, then the mannitol wore off and my b/p went right back down.

All of these things are what leads me to think that I may have IDH and that my UFR may be too high. The staff at the center don’t understand why I’m having these problems. They can see by just looking at me, when I’m starting to go down hill and non of their interventions seems to make a lasting impact. Even when I went to dialysis on Wed with my b/p significantly higher than normal 130’s over 80’s (because I’m not taking any b/p med’s right now) my b/p still dropped to 100’s over 60’s.

I really want to feel better and I think that home hemo will be my best bet outside of transplant so it’s important to me that I can be successful using this modality. That’s going to be very difficult if these issues are not resolved. I can’t imagine spending the rest of my dialysis career completely wiped out three days a week, nor can I imagine that whatever is going on is good for my heart and my body especially when it’s a repetitive assault over time.

I hope this gives you more information about my case and I really hope that there is some literature out there that describes what I’m going through that also contains some interventions that work!

Thank you so much,
Tami Ramsey

P.S. There is another person on my Ihatedialysis.com support group who has this same vibrating feeling for over a year and a half. He is actually taking anti-anxiety medications to cope with it, with little luck. He also has had multiple problems with low blood pressure although his do happen late in his runs. Just and FYI

Dear Tami

I am sorry but I don’t have a plausible answer for this vibratory sensation you are experiencing during dialysis. The sensory perception of ‘vibration’ has been reported by some authors from Taiwan as a means of assessing dialysis patients experiencing intradialytic hypotension for evidence for autonomic and/or peripheral nerve damage … but this is a sensory test which ‘is applied to detect’, not an actual ‘symptom to measure’.

I still find it hard to sheet home your symptoms to the UFR - especially as you say that they occur even is you are having a near-isovolaemic run.

I do think an assessment of your dry weight is still in order … but even then, I find the symptom you report difficult to correlate with the dialysis itself - though it would clearly seem it must be, as the symptoms seem to occur specifically and only during the dialytic process.

My apologies for being unable to help. I hate being ‘beaten’ by a problem, but this one has me snookered.

Dr. Agar,

Thanks, once again, for your quick reply. This vibration symptom’s quite strange, isn’t it? I found another person with the same symptom over at ihatedialysis.com and someone suggested to him that we may actually be feeling the change in electrical potential of our Na, K+, and Cl ions due to the fluid shift? That sounds feasible to me, but I wonder why more people aren’t complaining about the same symptom?

In the beginning I thought that the vibration sensation was unrelated to the low blood pressure and the disconnected feeling I get, but after thinking about it some more I really think they are connected. Today, we shortened my run to three hours instead of four and bolused me with 500ml of NS before I became symptomatic to see if that would prevent the hypotension and the vibration sensation. Unfortunately it had no impact. My blood pressure at the end still dropped from a starting b/p of 138/81 to 105/53 and I could feel it.

After talking with my doc, (he was reluctant to lower the UFR because he felt that the pressure gradient wouldn’t be enough to support solute transport if it was less than 200) he’s of the inclination that my current weight of 73.4 kilo’s is, in fact, my dry weight. He’s suggested that I gain a kilo between treatments by carefully increasing my fluids to see if that helps prevent the symptoms. He’s also suggesting that I receive a “loading” bolus of 500ml’s of NS prior to my treatment.

I understand his logic, but I’m not convinced that that will resolve the issue and I’m concerned about what impact that process will have on my heart over time. The home-hemo nurses have suggested that I just move over to the NxStage machine even while I’m in-center waiting on a spot to open up to train for my home-hemo. They think the NxStage machine will be much easier on my body. At this point, I’m willing to try anything. As I told them today, unless I find a transplant this is going to be my life, hopefully for a very long time. Since my labs are pretty good…K+ is slightly elevated…and I’m not “sick”…this is the best time to play around with the numbers to see what works best for me and my body.

The shorter run definitely helped today. I felt better than I have since I started but I was still unable to drive myself home and that’s a big issue for me that I need to get resolved as soon as possible. While the vibration sensation has lasted all evening, I’m still feeling it now, the other symptoms resolved within three-four hours after I got off the machine…much better than Wednesday.

Thank you for your input and for being here on this site. I know that I’ve presented you with a unique problem that doesn’t have a readily available solution, but just knowing that sites like this exist gives me hope that I will figure out what’s going to work best for me. It’s been a disheartening start to my dialysis career and I worry that being an advocate for myself may be an uphill battle; I’m just thankful that I have the training and resources to learn as much as I can so that I can make the best decisions possible.

Thanks again and have a great weekend!

Tami

Hi Tami! I don’t have any answers for you, but I just wanted to tell you how happy I am that you found Dr. Agar and this site. It’s a brilliant place to find answers, and between this site and ihatedialysis, you couldn’t find a better group of people to help you.