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Author Topic: Still feeling bad despite new Cath  (Read 976 times)
Aaisha.Dar
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« on: October 07, 2018, 11:32:27 AM »

Hey everyone,
Not sure if you have read my last posts about whats been going on with my Cath if not, Ill give a short update. I got a new Cath placed in august due to an infection. One month after they had to start reversing the lines because one of the lines wasn't pulling. 2 weeks back I have been cutting my treatment short because dialysis was becoming unbearable. During treatment I would get dizzy, nausea, vomitting, very weak. My arms and legs I could barely feel them. I got a new Cath on Wednesday. Despite all that I STILL continued to feel bad. I even went to the er and the doctor put me on a blood pressure med to make it higher. One hour into treatment my bp drops. Same symptoms. These problems are really starting to get to me because I have no answer. Ive tried raising my weight even though I feel fluid in my chest.
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kristina
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« Reply #1 on: October 07, 2018, 11:54:49 AM »

Hello Aaisha.Dar, I am very sorry to read about your troubles and unfortunately I don't have any answer and just wanted to send you my best wishes. What does your nephrologist say about this? Your feeling of having fluid on your chest, has it been medically investigated by your nephrologist?
Best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: October 07, 2018, 12:00:15 PM »

Hi Aaisha, what are your bloods doing? Also I wanted to say that adding cayenne pepper to nearly all my food helped raising my bp a bit.


Love, luck and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Aaisha.Dar
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« Reply #3 on: October 07, 2018, 12:41:08 PM »

Sodium level is low, like 129 I dont think its that bad. Umm what else, hemoglobin and albumin good. I saw my ktv was 1.86 which dropped from 2.50. I guess this has a lot to do with me cutting my dialysis. I appreicate the well wishes. Its very frustrating. Last time I spoke with my nephrologist I told him I was having problems and the next day I was going to get a Cath. He said are you on the transplant list I said yes, he forgets all the time. Then asked you dont have any donors I said no. In reality, I denied letting my sister in law, sister, and brother to donate. I took my dads kidney in 2009 and it failed a year later I dont want to go through that again. I know I shouldn't but I feel guilty.
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Aaisha.Dar
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« Reply #4 on: October 07, 2018, 05:41:49 PM »

Forgot to mention, when I bend down I have chest pain/cramp.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #5 on: October 07, 2018, 10:24:41 PM »

Forgot to mention, when I bend down I have chest pain/cramp.


Is it on the site of your caths?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Aaisha.Dar
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« Reply #6 on: October 08, 2018, 10:42:43 AM »

No, my Cath doesn't hurt only the stitches hurt around the Cath. But my chest right in the middle is where I have pain.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #7 on: October 08, 2018, 02:09:26 PM »

I would mention the pain to yr doctor. Probably muscle, but I'd ask.


When my Calcium is dropping I feel absolutely terrible, what's yours?



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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Aaisha.Dar
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« Reply #8 on: October 08, 2018, 03:49:53 PM »

calcium is 8 so a bit low
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cassandra
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When all else fails run in circles, shout loudly

« Reply #9 on: October 08, 2018, 11:08:32 PM »

Maybe ask for an increase in whichever Calcium/vit.D supplement you are on. Calcium can drop steeply if Cinacalcet (Sensipar?) is increased.



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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
GA_DAWG
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« Reply #10 on: October 09, 2018, 09:17:24 AM »

When you lay down to sleep, can you lay your head flat without it affecting your ability to breath or do you need multiple pillows in order to not be able to breath? They told me that is a sign of congestive heart failure from too much fluid in your lungs putting pressure on your heart.
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Aaisha.Dar
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« Reply #11 on: October 09, 2018, 09:19:13 AM »

So my case is a bit different. My parathyroids got  taken out so I donít need sensipar (thank god). I do have to watch my phos.. today was a bad session as well. I only removed .4 how sad is that. I vomited and my head is killing me. The blood pressure med doesnít do anything my blood pressure drops after an hour... to 70s. The nurse practitioner came in and said maybe I need to see a cardiologist. What is going on with me. If they were removing too much fluid for instance then why would I still feel awful even when they arenít pulling. I cut treatment again, I donít have an answer. I feel like I might just die like this.. does anyone have any suggestions anything? My cath is working fine itís me that isnít working.
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Aaisha.Dar
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« Reply #12 on: October 09, 2018, 09:21:00 AM »

When you lay down to sleep, can you lay your head flat without it affecting your ability to breath or do you need multiple pillows in order to not be able to breath? They told me that is a sign of congestive heart failure from too much fluid in your lungs putting pressure on your heart.
I use two pillows when I sleep. There are days when I have fluid on me and when I turn to my side I canít breathe properly I feel short of breath. Today I feel short of breath.
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Aaisha.Dar
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« Reply #13 on: October 09, 2018, 11:43:35 AM »

Things just seem to get worse and worse. I think my clamp was open and all of a sudden my dressing was full of blood. I just closes the clamp. My chest feel weird should I be worried. The guaze was soaked in blood.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #14 on: October 09, 2018, 12:27:26 PM »

Not to worry you, but go see a doctor. A nephrologist who knows about you, your cath, and your situation and body.
Last Sunday I spent 9 hours in A&E from the only hosp I trust, waiting for the only surgeon I know and trust, just because I had a weird pain in my new fistula. Go see someone please.


Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Aaisha.Dar
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« Reply #15 on: October 13, 2018, 09:12:36 PM »

Miraculously, dialysid went well today. I only gained .5 between treatments and took off a total of 1.5 with no problems. I just cant he the hang of dialysis my body i mean
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cassandra
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When all else fails run in circles, shout loudly

« Reply #16 on: October 14, 2018, 03:20:15 AM »

Jeez I'm happy for your miracle session


   :flower;


Stay strong girl, love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
GA_DAWG
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« Reply #17 on: October 14, 2018, 09:36:10 AM »

Glad your sesion went well. Hopefully it is a sign of better, at least easier,  things to come.
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Aaisha.Dar
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« Reply #18 on: October 14, 2018, 06:40:11 PM »

I know Im happy too. Thanks to all of you for trying to suggest helpful tips means a lot. Its tough when ur going through a bad time and some people dont understand and double question me
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lulu836
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« Reply #19 on: October 14, 2018, 08:39:06 PM »

Anytime..............
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Of all the things I've lost, I miss my kidneys the most.
Aaisha.Dar
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« Reply #20 on: October 14, 2018, 09:28:32 PM »

Anytime..............
I thought you were out of this whole conversation???.....................
The sarcasm wasnt needed.
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Aaisha.Dar
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« Reply #21 on: October 16, 2018, 04:36:21 PM »

I spoke too soon im guessing or maybe Im jist not doing something right. Today it happened again but a lesser terrible version. The nurse said maybe its because after the weekened thentoxins build up its hard on ur body when u remove it all. I feel like that too. But ever since i got home my breathing hurts. Meaning on my right side im restricted from breathing in because I have pain. Not sure what this could be. Im going to watch my drinking even more so next treatment will be bearable.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #22 on: October 17, 2018, 01:12:18 PM »

O Aaisha I'm sorry that this happened now. And the nurse could be right on the thing with the toxins. Didn't I read that you were thinking of home hem?


I hope you feel better soon.


Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Aaisha.Dar
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« Reply #23 on: October 17, 2018, 01:18:48 PM »

O Aaisha I'm sorry that this happened now. And the nurse could be right on the thing with the toxins. Didn't I read that you were thinking of home hem?


I hope you feel better soon.


Love, Cas


Thank you so much for ur concern and always trying to help out. So far I havent had a sip of anything to drink. Im trying to test out to see if its too much fluid they are pulling in one fluid or that my body is starting to hate dialysis and i just gotta deal. Btw they are only pulling 2 kilos during one treatment













Fixed quote mod Cas



« Last Edit: October 17, 2018, 01:25:14 PM by cassandra » Logged
Simon Dog
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« Reply #24 on: October 17, 2018, 02:13:53 PM »

Maybe ask for an increase in whichever Calcium/vit.D supplement you are on. Calcium can drop steeply if Cinacalcet (Sensipar?) is increased.
Funny thing.. high calcium is one of the reasons I was just prescribed Sensipar.
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