A new complication to add to the many others. After about 1-1 1/2 hours my energy level takes a complete dive. Can barely move my limbs, cannot keep my eyes open, can’t keep my head up, I can barely talk and I also literally feel my heart pumping harder. Of course when checked by stethoscope they can hear nothing “wrong”, but I can definitely feel it. Not blood pressure related. I am NOT finishing my treatments because I feel so horrible. We have tried no profile, profile 2 and profile 4, more saline and lowering the pump speed. I have to wait about 15 - 20 minutes after getting disconnected to snap out of it and be able to drive. My Dr. is not dealing with this problem, a good nurse has been trying to help me and she is baffled.
Is this for in-center hemo? I wonder if your symptoms might correspond to a drop in your electrolyte levels during treatment. Perhaps your nephrologist could order potassium to be drawn at the point where you feel this way. S/he might want to change the potassium in the dialysate.
Dori’s suggestion is a good one and lab testing could show if there are other electrolytes that are too high or too low.
In addition, how much fluid do you gain between dialysis treatments? When you have these symptoms, how much fluid have the staff set the machine to take off? Removing too much fluid too fast can stun your organs. Medical Education Institute has created an ultrafiltration removal (UFR) calculator that shows what is safe and what is not so far as how much fluid can safely be removed during one dialysis session based on the length of that session. You can find that calculator here - https://www.homedialysis.org/ufr-calculator.
Finally, if your kidney doctor is not helping to troubleshoot your symptoms, would you want to consider getting a second opinion from another kidney doctor? Even cutting a few minutes off dialysis treatments because you have these symptoms can put you at risk of hospitalization, reduce your lifespan and quality of life.
I am in training for Home Hemodialysis at the present. One of the reason for trying home treatment is that it is 6 days a week for 2 hours per treatment rather than the 4 hour in center. I am in the third week of training and I can tell you that I have no more of the heavy chest, cramps, and being drained after treatment in center.
I find the process not intimidating at all, It is a simpler machine than the in center Fresenius monster. (it is nxstage system 1). My care partner has never watched an incenter treatment, and was a little overwhelmed the first couple of days. He is now very comfortable with the whole operation. I self cannulated the last couple of weeks while in center and have continued in Home training. When I get out of training, I have a 50 mile drive from Portland to my home in McMinnville Oregon.
Don’t be afraid of the thought of home Hemo, or self cannulating, I think you will be amazed how much better you will feel and you should have no problem completing your treatments.
Again, I was experiencing the same issues you seem to be having. I was in treatment for 4 hours 3 days a week.
I don’t know how much fluid gain you have between treatment, but I had to really watch mine. If they took off more than 3 liters the treatment was pretty miserable and I was wiped out the next day.
My suggestion would be to really be careful of your fluid gain, be very protective of your access, and seriously consider home HemoDialysis.
I wish you the best and hope my input may have helped you. (If you were in Portland OR area, I know the BEST nephrologist available. She watches all my medical procedures and medications like a hawk, and she is truly a nice person.
What most people on dialysis don’t know is that training for a new dialysis technician is probably only about 6 weeks during which they read a manual, observe someone else providing care, and provide care under supervision. A patient can learn to be his/her own technician by doing what you did. You can learn a lot about dialysis by asking questions and observing what the nurse or technician is doing. Some dialysis clinics have patients who do self-care in-center because they can’t do home dialysis. Patients – even those doing in-center dialysis – should be taught how to self-cannulate unless there is some valid reason why not. Needle fear can be overcome through use of desensitization techniques. Having one person cannulate a vascular access regularly should reduce access complications. However, in a busy dialysis clinic, it’s impossible to assign the same person to cannulate a patient every time. Once a patient has learned to self-cannulate in-center or in home training, learning how to take vitals, run the dialysis treatment and document what needs to be recorded should not take too long.
6 days x 2 hours is only 12 hours of dialysis a week. This is enough to remove water much more gently, so on a day-to-day basis, that means feeling MUCH better. BUT…2 hours is NOT enough time to remove the toxins that are not measured in the U.S.–but are most likely to cause long-term harm, such as beta-2 microglobulin. I hope that once you get settled at home, you consider doing longer treatments at least some of the time.
Coming in as an ‘Expert Patient’
Dori has mentioned checking bloods during treatment.
What I haven’t heard mentioned yet, apart from profiling is blood flow rate and dialysate flow rate. AND dialyser size.
A good doc or renal nurse should take these into account. (note that in the UK techs are what i think you call mechanics, and our junior nurses may be called healthcare assistants, trained to do the dialysis and needling but not senior/managment level).
Like most we have different bands of nurse experience and training.
I can’t tolerate a dialysate of less than 2K (potassium), and don’t tolerate larger dialyser sizes (equivalent of Fres 800) so use a 1.5 K dialysate, FX600 kidney and a dialysate flow rate of 600… This, for a person who weighs 60 KG is adequate, providing I keep an eye on dietary intake a fluid. I do home dialysis at 4 hours 4 times a week on one of the ‘beasts’ of Fresenius (which I’ve named ‘You Bastard’ after the Pratchett mathematician.
I know my potassium drops to around 2 if I have a ‘low K tank’ which is itself dangerous.
So take ALL the possible variables back to the doc and see if tweaking doesn’t help. I know some units are excitedly stroppy about personalising prescriptions, but a 1 size fits all our patients REALLY doesn’t work.
To summarise.
Dialysate concentrate and blood flow rate.
Dialysate Concentrate and Dialyser size.
Amount of fluid gain between sessions… Really important. I can’t tolerate more than 2,8 tops but usually gain is 2 or less between sessions.
And pre dialysis blood and amount of clearance.
UPDATE! Thank you all for your feed back. All of the suggestions that have been made here I have already tried/checked. Also, I have another symptom that keep’s me from staying whole sessions, I call it restless body syndrome. Just like RLS but all over my body, including my head. I asked someone there to crunch the numbers as to the percentage I was getting whole treatments. In a 4 month time span I was getting off early 50% of the time due to these symptoms. Any way I’m going back to PD had my 4th catheter put in a couples of week ago. I can already tell I’m having a problem with the placement of the catheter. Another thing to deal with… yipee!
So far as your symptoms of feeling twitchy, feeling like your arms and legs are heavy, has anyone measured your magnesium levels. Here’s a WebMD article that discusses symptoms associated with magnesium. I knew someone who had low magnesium and she had difficulty talking, felt twitchy, weak muscles, etc. I wouldn’t supplement magnesium without having your blood level checked when you’re having these symptoms as your magnesium could be high or low.
So far as your PD catheter(s), has the same surgeon put in the PD catheters that haven’t worked right ? if so, you might want to get a second opinion from a different surgeon.
Thanks to everyone. I have, through time, figured out that this problem is not connected to hemo. It is now happening all the time. It was suggested that I go to a neurologist. Wish me luck!