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Author Topic: Not feeling my best  (Read 624 times)
Aaisha.Dar
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« on: August 28, 2018, 03:37:22 PM »

Ever since my surgery when I got a new cvc line August 1 i haven't felt my best since. I did lose some weight also. I havent eaten much like before. Also, laying on my sides hurts my bones a lot. Especially my arms and hips. The other day i barely had the energy to walk and go up the stairs. My hemoglobin is 10.9. Also, ive been having a tough time at dialysis because nurses dont listen when I tell them I have too much fluid in my gut that I can barely sleep. They said we gotta ask the doctor when he comes. Doctor never came. You can see my puffy eyes and face from the fluid. Nothings more frustrating than leaving the dislysis center swollen. Thdy removed 1 kilo but i think they added fluid st the end. I did the math .6 was removed :banghead;
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KatieV
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« Reply #1 on: August 29, 2018, 07:20:48 AM »

I did in-center for a year, during which I lost 70 pounds, and never had a problem with the amount of fluid to take off.  Based on my incoming weight and my dry weight, they would give me my total and I could agree to it or change it up or down.  They knew I knew my body well. 

Only 1 liter removed isn't much, especially with dialysis 3x a week.  Next time you see a doctor - and they are required to see you once a month - ask that they write your orders to be flexible.  An overload of fluid can be really dangerous!  I tend to hold my fluid in my face as well; ankles can look fine, but my face is a chipmunk!

Now I do home hemo - my dry weight is set at 85.0, but I came off at 83.6 last treatment and felt good. 
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
ezilu
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« Reply #2 on: August 29, 2018, 04:26:55 PM »

I'm not sure what clinic you are at or on PD or Hemo but how much fluid you remove from your body is YOUR choice.
Deciding a base weight should be a decision between you and your Neph on a monthly basis but that number is going to fluctuate and often with how much you have consumed between sessions and how much actual weight you have put on. Note. Be prepared for changes in weigh-ins with changes in the weather. I have shoes that weigh more than others, dresses weigh less than shorts and a t-shirt, etc.
I'm always a good .5 over or under my dry weight.
When I'm trying to find my actual dry weight; when I find I'm leaving swollen. I will drop .3 kilos under my dry weight each session and let my tech know to be prepared to shut off my UF "Ultrafiltration" in my last hour. That's when I typically cramp, it's my 3rd hour. You may have to check for pre-cramping by flexing. Flexing will generally bring on cramping for me but not the horrible cramps that sneak up on you.
Once you cramp, then call to have the tech shut off the UF. UF is just pulling fluids, your blood will still be filtering. Now when you go to weigh out add plus .5 this is likely your absolute dry weight.
So if you're 45.5 your dry weight is going to be 50 kilos
Now if you're cramping during your session note the time in your run, are you cramping in the 1st hour? 2nd? 3rd? etc. Chances are it's the 3rd.
There are a few things that bring this on but pulling too much fluid and too fast is usually the culprit. Either you lost weight between sessions, because of lack of appetite or increased urination, lighter shoes creating a false "heavy weigh in"       
If you are cramping before your 2nd hour you need to talk to your Neph about reducing your BPS "Blood Pump Speed" NOTE: Again, your body, you have the right to ask them to turn down the BPS.
PS. I forgot to add one more thing. There are different settings on the machines you can use to help draw fluids out more efficiently if you're overloaded and fluids need to move from your tissues to your blood, you can use a setting to pull the majority of your fluids at the beginning of your session allowing the fluid to transfer to your bloodstream. Talk to your Neph! And if you don't have a doctor that is willing to partner with you in your wellbeing and quality of life, find one that will. 


Hope this helps.
#Renalology #Makedialysiseasier #PatientRights PatientPOV   

« Last Edit: August 30, 2018, 09:48:55 PM by ezilu » Logged
Aaisha.Dar
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« Reply #3 on: August 29, 2018, 05:56:35 PM »

Ive really learned alot about my body and what it can tolerate. I am st a in center hemo clinic. I wear the same shoes each time and similar sweats and sweatshirt also. Same sweats diff color. I had a recent hospitalization and also I changed my diet i cut out dairy. I know I lost weight for sure. I feel my legs are heavy so obviously thsts fluid. Ill try this thing again tomorrow and see what they say.
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Aaisha.Dar
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« Reply #4 on: August 30, 2018, 11:33:48 AM »

Did remove 1.7 today at dialysis but not where I want to be. I will try to nit drink much so i can go to my desired weight. The nurse and tech really listened to how I felt today which was overloaded with fluid. The doctor still didnt come though so I gotta wait until next week.
I met with the nutriotnist today and talked about my appetite and nausea. She mentioned my albumin was a bit low. At the hospital I tried different nausea meds and I found phenegren worked best for me but I have run out. Hopefully I can get a prescription.
Another thing is I was actually very sleepy today at dialysis. But was unable to sleeo because randomly I would feel like I couldnt catch my breath. It was odd because its was throughout the whole dialysis even in the beginning and I was laying down. Anddd i was not even cold more on the warmer side.
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ezilu
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« Reply #5 on: August 30, 2018, 10:24:56 PM »

Did remove 1.7 today at dialysis but not where I want to be. I will try to nit drink much so i can go to my desired weight. The nurse and tech really listened to how I felt today which was overloaded with fluid. The doctor still didnt come though so I gotta wait until next week.
I met with the nutriotnist today and talked about my appetite and nausea. She mentioned my albumin was a bit low. At the hospital I tried different nausea meds and I found phenegren worked best for me but I have run out. Hopefully I can get a prescription.
Another thing is I was actually very sleepy today at dialysis. But was unable to sleeo because randomly I would feel like I couldnt catch my breath. It was odd because its was throughout the whole dialysis even in the beginning and I was laying down. Anddd i was not even cold more on the warmer side.

Find some small cube ice trays and eat ice instead of drinking, it will soothe a dry tongue without putting on the kilos.
You need to keep your Albumin in check because dropping below 4 is dangerous, deadly even, bring up your protein intake just be sure to take those binders!
https://www.renalandurologynews.com/nutrition/hypoalbuminemia-in-dialysis-patients/article/119117/
If it drives up your phos too high, or your hemoglobin is too low, there are different hemofilters you can change to as in high flux vs low flux and even in those categories there are variables, Right now I am on a Baxter "revaclear" 300 and it lets more iron and epo through and drops my phos faster than any other filter I've tried.
but hemo-filters is a whole other bag of nuts. I'll try to put something together.
Also, you should be running on oxygen, you're likely anemic as most patients are and with low hemoglobin, there are simply not enough red blood cells to circulate oxygen to your cells and organs, add dialysis to that and your oxygen blood saturation drops in the first hour. I'm not sure why everyone in the clinic isn't running on oxygen their entire run.
https://www.rsnhope.org/health-library/importance-oxygen-hemodialysis/
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Aaisha.Dar
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« Reply #6 on: August 30, 2018, 11:09:16 PM »

Usually I eat fruits and veggies to clear my thrist. Honestly I feel part of my weight loss has to do with the fact that I have really incorporated lots of fruits and veggies into my diet. Ill have a fruit bowl for breakfast and probably thats it for that meal. But im not complaining I really enjoy it. Also, I have really cut out salt. Ever since I have lowered my salt amount my fluid intake has really been controlled.
For some reason I dont like the oxygen. I feel it also puts my breathing off. I cant really explain it.
Not sure how low albumin can be deadly. I remember when I first got on hemo my albumin was 2!! Now that was a bad time for me. I felt like I was half dead. I will try to incorporate  more protein into my diet but at the moment my portions are pretty small.
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lulu836
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« Reply #7 on: August 31, 2018, 09:02:23 AM »

I'm curious as to how pure oxygen flowing freely up your nose is detrimental.?  I've been on an oxygen regimen for 3 years with no problem.
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Of all the things I've lost, I miss my kidneys the most.
GA_DAWG
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« Reply #8 on: September 01, 2018, 09:45:12 AM »

Low albumin can be deadly because it affects the bodies ability to fight infections.
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Aaisha.Dar
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« Reply #9 on: September 01, 2018, 01:53:19 PM »

Yeah its hard to explain about the oxygen. But I dont really like it. I just got some labs done and I see that even though my calcium is normal at 8.3 my pth has gotten even lower 110.
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