Awful time during hemo

[AaishaDar]

Hi again,
So this is my 4th month on hemo. Everything was goingvwrll until last month. I always throw up and leave with an awful headache. I feel they are taking too much fluid out but I'm not sure. I've had many breakdowns because I don't like going through this. How am I supposed to gain weight if I throw up all the time. I feel trapped because nobody knows what's wrong. I also experience nausea even on non dialysis days. Btw I have a catheter under my collarbone not sure what their called. It's not a fistula. So if anyone ever experi ended these problems and know how to make treatment easier please let me know.






EDITED: Moved to general discussion area-kitkatz,Admin

[Michael Murphy]

It should get better, have you had a fistula installed yet, if no ask your doctor why not. Hemo is easier with a fistula.  They take time to mature so sooner is better.  The best way to tell if they are taking too much fluid is by watching your BP.  When I started they were going nuts by taking too much fluid.  They stopped when I arrived at my doctors office with 78 over 45 BP.  They other clue is are you cramping if yes they are being too aggressive in pulling fluid.  Every one reacts differently but your doctor should not be dismissive of your symptoms.  If the nephrologist is not willing to work,with you get a new one.  Good Luck .

[AaishaDar]

It's odd. I've always had low blood pressure especially on peritoneal dialysis. But starting two months ago it has been high 150/113. Honestly I really don't drink much I really watch what I drink. I've been holding off on the fistula. I don't like the look of it, I feel I'm too weak for needle sticks three times a week, and I just don't wanna be in a hospital again. I'm going through a rough time and I'm tired of throwing up. It sucks honestly.

[Michael Murphy]

Yea, the fistula looks ugly but it does make hemo safer and easier. The needles hurt for a while but after several months of sticks the needles hurt less.

[Charlie B53]

When I first switched from PD to Hemo they had my dry weight set way too low.  I was cramping nights after treatments while sleeping.  Horrible leg cramps.  I was always soo tired and exhausted.  When I started getting leg cramps during treatments I told them I was far too low and we started raising my dry weight.  We ended up 3 kilos over what they originally wanted.

I feel much better now.  I have just enough water in me that by the end of the day I can see a line just above my ankle from the compression of my socks.  Not a lot, Just enough I can see it.  This is fine for me.

I am very strict with my fluids.  Many times I come to treatment barely above my dry weight.  .3   .7  Yesterday I must have ate a lot of salted food at the restaurant as I came in today 2.1 over.  I am afraid of large take-offs shocking what little residual kidney function I have left.  I feel that little bit of function greatly helps make the difference in keeping my labs within range.

[AaishaDar]

After the weekend that's when I'm swollen. For example this last weekend I drank too much I guess because I was swollen. Obviously they have to take water out but this isn't right how I vomit and can't seem to go through treatment. I think they are just pulling off too much water too fast? I decided after yesterday's treatment I wouldn't drink anything so then they wouldn't have to pull much. I'm desperate to make treatment easier.

[Michael Murphy]

There are many tricks to help with fluid compliance.  Hard candy, ice chips, spray bottle, and my personal favorite a squirt gun.  These all help my moistening your mouth when you are feeling a need for fluid.  I also tend to drink from 16 ounce bottles to measure my intake.  Avoid salt like the plague since increased salt requires increased fluid consumption.  Read labels find the sodium content of all your foods.  I once began to eat eggo waffles, after a week of them my weight was up and I read the box much to my suprise they had 400 mg of salt per waffle 4 of them was almost all the salt intake I was allowed.  By and large any processed food needs to be checked for salt content.  There is a ton of past posts dealing with fluid.  Do a search and you will find they are chock full of helpful advise.  You are not alone with the problems from the start of hemo.  You should join a local support group since most people not on hemo have no idea what you are going through.  Good Luck but it does get better

[AaishaDar]

Thank you for your advice. It means a lot. My family likes to cook a lo t at home so we know exactly what's in our food. Occasionally I'll treat myself once or at the most twice a week and eat out but it's never fast food.  I hope things get better as well.

[iolaire]

My only suggestion is to make sure you talk over your concerns with your doctor as soon as possible.  To me it seems like the in center the nurses and techs seem to be ok letting people slowly figure out what works for them.  The doctors are the decision makers (along with you) of how to manage your care and are best able to help you figure out how to have a better experience.

[smartcookie]

There are different profiles for pulling fluid, too.  If you seem to be getting sick at the end of treatment, ask for a profile that pull a little more at the beginning and be gentler towards the end.  Have the nurses play around with the settings until you get something that works for you. 

[Simon Dog]

There are different profiles for pulling fluid, too.  If you seem to be getting sick at the end of treatment, ask for a profile that pull a little more at the beginning and be gentler towards the end.  Have the nurses play around with the settings until you get something that works for you.

Ask the tech to show you the profile graphs on the dialysis machine (I am assuming a FMC 2008 series system).   I believe #2 is a descending slope; #1 is the default and flat.   One you find something that works, ask your MD to put it in your treatment orders so you get it by default.

[Charlie B53]

I wasn't aware that the machine was capable of different 'take-off' profiles.  I will have to learn more about this and see if/how this may apply to me as well.

[smartcookie]

https://fmcna.com/wp-content/uploads/documents/490042_Rev_O.pdf 

Here is a manual I found online for the Fresenius 2008 machine.  Page 75 describes UF profiles and how they work. 

[PrimeTimer]

I've learned that food labels that say "Low Sodium" have much less sodium in them than foods that advertise as being "Reduced Sodium". You'd think they'd mean the same thing but boy do they love to try to fool you! But once you find the foods and brands that carry the lowest amount the shopping gets easier. And...you won't retain as much fluid. My husband has been very successful on a low-sodium diet. Every once in awhile tho they have to adjust his dry weight again if his blood pressure starts dropping too low during treatment. He tells them at the first sign of nausea or cramping. 

[AaishaDar]

So treatment went terrific today!!!! I was really strict and told them they removed too much fluid on Monday and I was miserable. I told them adjust my dry weight and go from there. They removed .5 which wasn't a lot at all. I even got a short nap which is rare becayse I used to never be able to handle my treatments. I'm so happy it went well. It's sad that my doctor took my situation lightly and I had to go through torture until they finally did something. I appreciate everyone's help and advice.

[iolaire]

So treatment went terrific today!!!!

Great! Keep up you education and on top of your treatment. You are your best advocate.

[AaishaDar]

One more concern of mine everyone,
I have lost literally all of my hair. It has become so thin you see my scalp. I'm a 21 year old female so I really care about my appearance. I don't feel confident anymore and I keep my head covered I even get embarrassed to show my family. I used to have thick hair And long hair I even was nominated for best hair in highschool. And now it's gone literally all gone. I understand heparin makes you lose hair I'm on minoxidil 7.5 mg for blood pressure and my hair. My brothers wedding is in 8 weeks does anyone know if that s enough time for it to grow back. I'm not asking for a full head of hair but just a little so my scalp doesn't show.

[Charlie B53]

Talk to your Dr.

Two things I want to pass on.

Many balding men once started on blood thinners have regrown hair.  Most hair loss is a loss of blood flow in the scalp.  Think of it as a garden that doesn't get watered enough.  It dries out and dies.  When these guys started taking blood thinners making the blood more easily flow througoh the thinner arteries and veins in the scalp, the hair began growing again.

Of ALL the various 'hair growth' snake oil on the market, the ONE THING in common with them all, is scalp massage, Religiously massaging the scalp to promote blood flow, THREE TIMES daily. Morning, Noon, and Night, at least. It takes commitment and effort, but ten minutes of gentle massage can make a huge difference.

Talk to your Dr about blood thinners.  Aspirin alone can make a big difference.  I used to take niacin for cholesterol, it would make my whole body flush red. Felt like an instant sunburn.  I had to take a regular 325 aspirin along with the niacin twice daily to prevent the flush.  The aspirin also thinned my blood.  I bled. Bad. It wouldn't clot.  As a mechanic I was always scratching a hand, breaking the skin. I would drip, make a mess.  Always had to have a paper towel nearby to make a pad at least 4 layer thick and a roll of black electrical tape to hold it in place or I would never get anything done.  Did this for close to 20 years.  One day mowing the yard I got a little too close to a tree and a branch poked a nice little gash in my shin.  I didn't notice it until I stopped to get a drink.  Found my show FULL of blood, and an inch thick pool on the floorboard of the mower around my shoe.  It was a LOT.  Rinsing everything off with the garden hose I finally found the source, and it was still bleeding, still wouldn't stop.  Two whole paper towels folded up into about a three inch square, direct pressure for the whole hour it takes me to get to the VA Hospital, cause I was sure it would need to be stitched closed.  And it finally stopped.  Direct pressure for an hour.  Dr put a Whimp Sticker on (Band Aid) and sent me home.

I quit taking the aspirin and niacin.  I was afraid a major cut, like a major artery in a real accident, and I would bleed out before an EMT could get to me.

If you can tolerate aspirin, and do very regular massage, these are the most likely cost effective measures that may contribute to hair growth.

Good Luck.  Let us know how well it works.

Take Care,

Charlie B53

[Riki]

I wasn't aware that the machine was capable of different 'take-off' profiles.  I will have to learn more about this and see if/how this may apply to me as well.

Not all machines have the same settings.  I'd check to be sure which machine your unit uses, then look up the user's manual online.  My particular unit (and others in the province) use Gambro Phoenix machines, which I believe were discontinued years ago.  They only have 2 profiles, unless you include a step program, which the nurses hate because it means an extra minute and a half to program the machine.. I use the "constant" profile on the machine.. it takes the same amount out per hour, which I like and it seems to keep my bp stable, if it can't raise it a little bit

I've learned that food labels that say "Low Sodium" have much less sodium in them than foods that advertise as being "Reduced Sodium".

Be very careful with anything labeled this way.  A lot of the time, they replace the sodium with potassium, so you're taking one thing out only to get another.

[cassandra]

One more concern of mine everyone,
I have lost literally all of my hair. It has become so thin you see my scalp. I'm a 21 year old female so I really care about my appearance. I don't feel confident anymore and I keep my head covered I even get embarrassed to show my family. I used to have thick hair ......

Buy yourself a wig. I have 7 or 8   

At home I wear caps (they have really nice, affordable human hair wigs and lovely hats at Amazon)

Love, luck, strength, Cas

[Michael Murphy]

The wig idea is a very good one why suffer till it grows back. I also like the Dolly Parton line when asked if stupid blonde joke bother her. She said no for two reasons, one I know I am not stupid and two I know it's a wig.

[AaishaDar]

So quick question for everyone. Does anyone have really bad night sweats?? Ive never had this problem until i started hemo. Ill wake up in the midde of the night full of sweat on my face and neck.

[cassandra]

Do your night sweats coincide with low BP?

[AaishaDar]

No i do not have low bp anymore
 Ever since hemo it has trended up but is in a better range noiw

[Michael Murphy]

Every one thinks that dialysis is science, well part is but a lot of things like dry weight are art.  When something is bothering you like hair loss, night sweats, or any other side effects take them to your nephrologist or gp. Explain the problems and don't let them ignore them have them find a cause and a if not a cure a way to minimize your problems.