Weird Weekend in Hospital

[Michael Murphy]

Friday after my dialysis appointment I went to the urgent care center at the medical group I belong to.  I was having trouble breathing and that is the one symptom that appears when I am having a heart attack they sent me to the cardiac unit at a local hospital. Lot of blood tests Friday night. Saturday the blood work eliminated a heart attack and found I was loaded with excess fluid.
It appears I was loosing weight, normally a good thing except my dry weight was not falling as fast as my real weight so I was loading up on fluid.  Now I had my dry weight lowered from 131.5 k to 130 k 2 weeks ago.  Now after this weekend dry weight is down to 126 k.  And is probably a kilo to high.

[iolaire]

Well that’s bad news that’s sort of good.

That type of thing irks me as I know and have been treated with machines in other countries that measure the water content of the blood so the whole process of guessing dry weight is minimized.

[LorinnPKD]

That would be so wonderful if we could measure the blood instead of stabbing at the dark for our numbers!

And I'm glad your story has a happier ending, Michael -- I've been dropping weight since my surgery this summer but I hadn't realized it.  For many weeks I've been feeling congested, and I have this cough that won't go away, and I've thought it was late summer allergies even though I rarely get this affected by them.  And even less energy than usual. And every now and again these past couple of weeks I'd get a racing heart. 

It was only after a visit to the dentist and being tipped backward in the chair and suddenly not being able to breathe that I started to think something was really wrong!  It felt like drowning.  Awful.

So we took off three kilos on Monday and it was night and day.  I'm planning to challenge again today to bring it down at least another kilo.  I'd had most of my fluid function up until the nephrectomy, so all this is new to deal with!

[Paul]

I know and have been treated with machines in other countries that measure the water content of the blood

Yep, I am regularly dialysed on one of those. Bloody useless things. A random guess by the village idiot would be closer.

[Alexysis]

I really don't understand why so many people have problems calculating their dry weight. I've been pretty steady at between 78kg and 79kg for about 4 years. I always add an extra .5kg to 1.0kg depending on heavier clothing, consider adding a bit extra if a heavy meal has recently been consumed, or ask to have a bit more taken off if extra fluids have been consumed. I also NEVER eat or drink during dialysis, so as to not throw-off my final weight. Also, I find the best indicator of how much fluid I may've gained is how much edema I notice around my calves/ankles.

[Michael Murphy]

My problem is appears I lost 5 kilos in real weight  about 11 pounds in the preceding month so every time I went to dialysis they would remove fluid to my dry weight 131.5 kilos.   So after this weekend my dry weight is 126 kilos.  I had a major heart attack in 10/2016 and with a large drop in cardiac function my nephrologist has limited my ability to challenge my dry weight.  Now after this fiasco I think I will be going back to my weekly .-5 kilo challenge  to my dry weight.

[Paul]

I also NEVER eat or drink during dialysis, so as to not throw-off my final weight.

Cannot see why that would be a problem. I have a 250 ml cup of tea and three ginger nut cookies, so I know that will add 0.3 litres to my weight. Recently I have also had a couple of bacon rolls, another 300g (I own kitchen scales), so another 300g to add. As a rule I add extra food (bacon rolls, cookies, etc) to my pre-dialysis weight, extra liquid (tea) to what I want to have taken off. Works out fine for me.

[Paul]

Also, I find the best indicator of how much fluid I may've gained is how much edema I notice around my calves/ankles.

Actually you should aim for zero on that.

Take it from me, three separate incidents caused my fluid to go up, I now have to have my legs checked and re-dressed three times a week, so the only day I get off from medical treatment is Sunday, not fun.    And next week I've got top pick up antibiotics from the pharmacist because of it.  Use me as a bad example, and avoid adema.

[Michael Murphy]

I don’t show water gain as edema.  The only symptom I showed was difficulty breathing.  The disturbing part was the only symptom of my 2008 and 2016 heart attack  was difficulty breathing.  So in this case I suspected it was fluid gain I did not want to chance a third heart attack.  The hospitalization was because of my heart attacks no one wanted to chance it until the enzyme test came back with 0 % chance of heart attack.  It was then decided to send me to the hospital dialysis center to remove fluid.  After the last heart attack I had little reserve left in my heart, so I was hospitalized since if it was another heart attack the only chance I would have was to do a immediate angioplasty thankfully it was not a heart attack.

[Riki]

I know and have been treated with machines in other countries that measure the water content of the blood

Yep, I am regularly dialysed on one of those. Bloody useless things. A random guess by the village idiot would be closer.

I use one as well, and they are a garbage in/garbage out kind of system.  If the person operating the machine doesn't know what they are doing, it's not going to work.  I was there during the training for this particular machine, so I frequently tell the nurses that they are doing it wrong.  They don't seem to like that much. *L*

I have low bp issues while on the machine, so they were using it to make sure I wasn't losing too much fluid too quickly.  The problem was, they were forgetting to hit the button to turn that particular feature on.  The machine has sensors that can measure the fluid in your blood, and if its set up right, it does work really well.

[Paul]

The machine has sensors that can measure the fluid in your blood, and if its set up right, it does work really well.

My experience is that they do not.

[Charlie B53]

The problem with using the crit sensor is we are MOT all the same.

As individuals the water content of our blood can be different.  What may seem fine for one may leave far too much water in another, and yet another may be dried out and cause severe blood pressure drops.

Having the same Tech and the same machine for each treatment can make a world of difference.

My usual machine fail system checks one mornings so she simply wheeled it off to the back room and rolled out another.  Set it up and plugged me in as usual.  All fine and dandy, till near the end of the run.  Both calves locked up.  Disconnected and on the scale I weighed out 1.5 UNDER my dry.

Needless to say I was miserable for the next 30 hours.

And that was with the crit sensor turned on.

[GA_DAWG]

I wish we had the system where we had the same tech each time. There is one I trust much more than the others, so anytime a question comes up, I call timeout and go check with her before anything is done. We also have a nurse I have more confidence in, but the other nurses are not as far behind her and the other techs are behind the one I trust most. It makes sense to have the same one each time where they would get to know how you react to the machine and would have a pattern for sticking. Our unit tried the crit sensors, and they were shut down pretty quickly. There were people all over the unit with cramps.

[Riki]

I'm not sure about how the crit sensors used in the States work, but what we have is actually a feature of the dialysis machine we use, called UF Control.  It needs to be set up differently for each run.  It can take a little more off or leave a bit on, depending on how it's set up.  It does use a crit line as well, but that is different for everyone too.   Mine is around 80%, I think, but it's been a while since I've used UF Control, simply because I don't really need it.  Also, the nurses would set it up, then forget to press the button to turn it on.    I was told by the Fresinius trainer that this particular machine isn't available in the US yet.

[Simon Dog]

Also, I find the best indicator of how much fluid I may've gained is how much edema I notice around my calves/ankles.

The term for that is Cankles, otherwise known as Hillary Ankles.

[PrimeTimer]

Also, I find the best indicator of how much fluid I may've gained is how much edema I notice around my calves/ankles.

The term for that is Cankles, otherwise known as Hillary Ankles.

SD: Did you really just say that?! ROFL 

[Paul]

I was told by the Fresinius trainer that this particular machine isn't available in the US yet.

I think there is a good reason they told you this: The dialysis unit where I dialyse as has recently been moved and redone. the re-do included new machines, the old one were Fresinius machines, the new ones are not. The old ones did not have these sensors, the new ones do. So I am guessing that dedicated Fresinius staff do not want these machines so will tell you they are unavailable.

[GA_DAWG]

Our Fresenius clinic had a crit line that was separate from the dialysis machine itself. I would rather have a tech help determine the fluid removal any day than this machine. It had people cramping all over the unit. They did not last long.

[Paul]

I would rather have a tech help determine the fluid removal any day than this machine.

I agree, the only time a nurse has used this function on the dialysis machine and believed it, I was left well over my dry weight at the end of the session. It was obvious (from my legs and how I felt), that the nephrologist's dry weight calculation was the correct one, and the stupid machine was wrong.

[Michael Murphy]

Personally I prefer to remove fluid until either my BP becomes wonky or I begin to cramp.  Luckily small micro cramps start in my hands before large leg cramps begin.

[Riki]

I was told by the Fresinius trainer that this particular machine isn't available in the US yet.

I think there is a good reason they told you this: The dialysis unit where I dialyse as has recently been moved and redone. the re-do included new machines, the old one were Fresinius machines, the new ones are not. The old ones did not have these sensors, the new ones do. So I am guessing that dedicated Fresinius staff do not want these machines so will tell you they are unavailable.

That doesn't make a whole lot of sense.  The machines that we have are Fresinius machines (5008, I think).  I'm also not in a Fresinius unit.  I'm in Canada, so like you I'm in a government run facility.  These machines are new to us in the last two years, replacing the old Gambro Phoenix machines that we had.  The trainer comes in periodically to teach a new feature of the machine, so that the nurses aren't overwhelmed with information.  UF Control was one of the features that she came back to teach, and they tried it out on me because I tend to have a low bp with no symptoms while connected to the machine, whether I have fluid on or not.

[PrimeTimer]

Personally I prefer to remove fluid until either my BP becomes wonky or I begin to cramp.  Luckily small micro cramps start in my hands before large leg cramps begin.

Sometimes my husband likes to do the same thing you do. He calls it "challenging his dry weight". I guess that's how you'll know if your dry weight and UF rate need to be changed. He also wears the same clothes each time for weigh in. Now that's it is starting to get cold out he is wearing heavier clothes so will have to adjust his numbers a little for that. Good thing sweat pants don't weigh all that much! 

[Riki]

Personally I prefer to remove fluid until either my BP becomes wonky or I begin to cramp.  Luckily small micro cramps start in my hands before large leg cramps begin.

Sometimes my husband likes to do the same thing you do. He calls it "challenging his dry weight". I guess that's how you'll know if your dry weight and UF rate need to be changed. He also wears the same clothes each time for weigh in. Now that's it is starting to get cold out he is wearing heavier clothes so will have to adjust his numbers a little for that. Good thing sweat pants don't weigh all that much!

I do that. I don't wear the same clothes, but similar clothes, and it doesn't matter what time of year, it's the same.  I wear a t-shirt and pj pants, slippers and usually no socks.  Socks depend on whether or not I'm wearing my sneakers.  That's just for weigh in.  Once I've got my weight, I'll put on a hoodie with the sleeves cut off, and my fingerless gloves that go up to my elbows