I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: marlinfshr on September 24, 2014, 01:15:39 PM
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I have had ESRD since May 2013 and other then the first couple of month's after my heart attack, which caused it, I have not been anemic or perhaps slightly as my numbers have been 13.5 to 14.5. Those first couple of month's went down to 8 but that was it.
Now this year and a quad bypass about 5 weeks ago. In the hospital I went down to 7 so they gave me a transfusion and then about a week later I got another unit of blood before being released as I was down to 8. Then I saw my nephrologist for blood work 2 days later in which it was 10 so the gave me an iron injection. That was a couple of weeks ago.
Since then I have had nights where I was extremely cold when it wasn't that cold in the house and I get out of breath really quickly. Then the breathlessness wears off and I can go about what I was doing but still feel a bit tired. As an example I will drive to the boardwalk to walk a bit. Upon getting out of my truck I am out of breath for the first 100 yds or so. Then I can continue walking for about a mile or so and feel fine. I stop because I am getting a bit tired and don't want to overwork my heart so I return. I am fine until I get home and get out of my truck again to go to the door in which case I am out of breath.
Does this sound like anemia? When I checked myself into the ER before my bypass I was extremely out of breath and winded a few moments AFTER starting a short walk and then my breathlessness got worse in which case I had to sit down. I would also get out of breath while bending over (tying shoes, putting lines on boat) and at home when lying down. But now I am fine with all that, it is just when I get up and start initially!
I am starting cardiac rehab tomorrow and have blloodwork with my nephrologist next wednesday as well as an echocardiagram at my cardiologists office.
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To me it sounds like you have too much fluid on board. See if they think you need to challenge your dry weight. At the end of the day are your calves and ankles full and puffy? I don't carry fluid in my lower extremities but some people do.
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To me it sounds like you have too much fluid on board. See if they think you need to challenge your dry weight. At the end of the day are you calves and ankles full and puffy? I don't carry fluid in my lower extremities but some people do.
Thanks, I had some fluid to begin with, especially where they took the vein out of my leg and was pulling off extra fluids with the green, but my leg has returned to normal. I am also pretty sure I a have stopped retaining fluid as my ability to urinate has come back and pretty much everything that goes in comes out. My lungs are clear as well and I am still losing weight and I am still losing weight. Also the green bags are going back to pulling up to the standard amount they did before and no more.
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Hello marlin,
When I suffered severely from anaemia, I had real trouble to go for my daily walks...
... because I not only became breathless very quickly, but I also felt "dead-tired" most of the time...
Since I was trained to give myself one weekly haemoglobin-"shot", I have noticed,
that I only feel "dead-tired" the evening before the next morning of my weekly haemoglobin-injection,
but then, shortly after the injection, my body picks up very quickly again...
Unfortunately, my "picking up quickly again" only lasts for about 6 days ... until the next haemoglobin injection...
Fortunately I don't experience any water-retention, not yet anyway...
Good luck wishes from Kristina.
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Hi marlinfshr,
I am sorry that you suffer so much.
Personally I am super sensitive to medication.
I am guessing that you are reacting to the Iron injection. Maybe if you could find out what type of Iron they gave you and the side effects that come with it?
There are other way to increase the Iron level without medication...
Best,
- The drops of rain make a hole in the stone not by violence but by oft falling. ~Lucretius
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I think it's the beta blocker (metropolol). It never affected me before but I had high blood pressure and I had on a few more pounds. Now i'm about 20 lbs lighter and have freed up arteries in my heart so my blood pressure seems more normal, at least by stopping the beta blocker for a day. I felt great. Then I took one in the evenings only (prescription is for AM and PM) and I started feeling it again and my BP started to drop. Now I went back on the AM/PM dose and felt dizzy and out of breath upon starting anything today. I go get an echocardiagram tomorrow in which case I'll see who I can talk to about changing prescriptions or cutting back.
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Could you find out whether it was the beta blocker?
When I was put on the beta blocker Metoprolol (and Atenolol), my whole system slowed down considerably and I became very sleepy...
... and because of my drug-intolerance my blood pressure could not be regulated through the beta blockers...
... My medication had to be changed to Amlodipin (Istin) and this medication works much better to regulate my blood pressure reliably...
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I am allergic to most betablockers and am on Amlodipin too instead.
I take it at night as it drops my bp a little too efficiently !
I have struggled with anemia over the last two years. Anything under 10 and you will feel like crap.
Mine hovered around 8 for quite awhile, and despite several blood transfusions, wouldn't stabilize.
I was always cold and always tired. I slept a lot. Walking upstairs or up a hill became very difficult, and because the oxygen doesn't travel
round your body very efficiently breathless quite quickly.
They changed my epo brand and that made a difference. (Was on Aranesp now on Eprex)
Now managing to stay within 13-10 bracket.
And I feel a hell of a lot livelier!!!! :cheer:
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It is most interesting what you mention about the different EPO-brands, Sugarlump.
My very first Epo-brand was “Mircera” 100 micrograms 0,3ml and it has just now been changed to “NeoRecormon” 3000IU...
...I thought the “Mircera” was much more effective, in fact I recovered from the “dead-tiredness” and severe coldness very quickly,
whereas the (once-weekly) “NeoRecormon” does not make me feel that much alive and certainly not so quickly ...
...and last week my feet became on one day suddenly very swollen and I could hardly put on my shoes...
... I deducted that was a side-effect of the “Neorecormon”, because my “two little fighters”
are still working very well on their own (without dialysis) ..
...I do hope very much that my body gets along better with the “NeoRecormon” in the future...
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It is most interesting what you mention about the different EPO-brands, Sugarlump.
My very first Epo-brand was “Mircera” 100 micrograms 0,3ml and it has just now been changed to “NeoRecormon” 3000IU...
...I thought the “Mircera” was much more effective, in fact I recovered from the “dead-tiredness” and severe coldness very quickly,
whereas the (once-weekly) “NeoRecormon” does not make me feel that much alive and certainly not so quickly ...
...and last week my feet became on one day suddenly very swollen and I could hardly put on my shoes...
... I deducted that was a side-effect of the “Neorecormon”, because my “two little fighters”
are still working very well on their own (without dialysis) ..
...I do hope very much that my body gets along better with the “NeoRecormon” in the future...
If it doesn't ask your nephrologist to change it.
The reason lots of units choose Neorecormon is that its three times cheaper than the other epo's and
probably three times less effective. There are quite a few brands and they vary a lot in efficiency!
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Thank you for the information, Sugarlump.
I shall also ask the nephrologist next time I consult with him...
... There are another few weeks supply of "NeoRecormon" in my fridge and
perhaps my body might soon have found a way,
to tolerate the "NeoRecormon-injections" a little better...
Thanks again from Kristina.
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It is most interesting what you mention about the different EPO-brands, Sugarlump.
My very first Epo-brand was “Mircera” 100 micrograms 0,3ml and it has just now been changed to “NeoRecormon” 3000IU...
...I thought the “Mircera” was much more effective, in fact I recovered from the “dead-tiredness” and severe coldness very quickly,
whereas the (once-weekly) “NeoRecormon” does not make me feel that much alive and certainly not so quickly ...
...and last week my feet became on one day suddenly very swollen and I could hardly put on my shoes...
... I deducted that was a side-effect of the “Neorecormon”, because my “two little fighters”
are still working very well on their own (without dialysis) ..
...I do hope very much that my body gets along better with the “NeoRecormon” in the future...
I doubt it was the medicine causing the swelling. With your low kidney function it wouldnt take much to cause edema quickly if you simply ate too much salt or drank a bit too much or ate a lot of friuts and veggies which are mainly water.
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Thank you for your kind thoughts obsidianom,
I don't use any salt and don't eat too much fruits or veggies,
but it could be, that I had a little too much water to drink that day...
I have recently reduced my daily water-intake and I am doing much better again...
Thanks again from Kristina.
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Hello Kristina!
I'm interested to know, what other side effects did metoprolol cause you?
I'm asking because recently my metoprolol dosis has increased froom 1/4 to a half every 12 hours. I feel cold hands and I'm tired most of the time... actually I will have to suspend some art lessons. Also, my hemoglobin is around 11,5 and my doctor is only giving two dosis per month which I consider not enough. I believe the insurance is trying to save some money this way :S
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Hello Kristina!
I'm interested to know, what other side effects did metoprolol cause you?
I'm asking because recently my metoprolol dosis has increased froom 1/4 to a half every 12 hours. I feel cold hands and I'm tired most of the time... actually I will have to suspend some art lessons. Also, my hemoglobin is around 11,5 and my doctor is only giving two dosis per month which I consider not enough. I believe the insurance is trying to save some money this way :S
1. Metoprolol is a beta blocker . It is somewhat cardio selective meaning it mainly effects the beta receptors on the heart , but it can also effect the peripheral areas in some patients. Beta blockers are notorius for causing vaso costriction of the hands and feet which makes then cold. That is due to the unblocked alpha receptors taking over . In addition slowing the heart can cause fatigue.
2. A hemoglobin of 11.5 is excellant for a renal patient. EPO becomes dangerous when it pushes heme above 12 . The studies have shown increased heart problems when EPO is used to push heme above 12 . So 11.5 is a good safe target. So as long as you stay at 11.5 , the dose of EPO is coreect. If it drops below 11 then you need more.
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Hello Kristina!
I'm interested to know, what other side effects did metoprolol cause you?
I'm asking because recently my metoprolol dosis has increased froom 1/4 to a half every 12 hours. I feel cold hands and I'm tired most of the time... actually I will have to suspend some art lessons. Also, my hemoglobin is around 11,5 and my doctor is only giving two dosis per month which I consider not enough. I believe the insurance is trying to save some money this way :S
Hello Caton,
My own side-effects with Metoprolol and Atenolol were, that I felt always very cold (needed a hot water-bottle even during the summer) and I also felt "dead-tired" most of the time... I had no energy... It became dangerous though, when these Betablockers failed to control my blood pressure and my BP remained high, without the BP-medication having much of an effect any longer... unfortunately that was leading me up to suffer a stroke... after the stroke, my medication was finally changed and I have been on Istin (Amlodipine) only 5mg daily ever since and this medication controls my hypertension very well...(touch wood that it keeps that way...) ... But I don't take my BP medication in the morning, because my BP is "naturally" lower in the morning anyway.... (I check that up with my own BP-machine myself...) ... and that is the reason for me take my BP-medication every day at lunch, because my BP would rise "naturally" only in the afternoon and since I take my BP-medication at lunch, my BP keeps well (and evenly) controlled through every day and evening...
Good luck wishes from Kristina.
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What causes your hb to drop suddenley?
I have been maintaining good levels between 11.5-12.5 then suddenly it dropped like a stone to 9.3
And I feel rough, cold all the time and tired like you wouldn't know.
My EPO regime has stayed the same, Eprex twice a week and I have had no other blood losses...they are talking transfusion if it doesn't improve quickly.
Which is something I would rather avoid.I have enough antibodies as it is.
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I've recovered from an HGB of 6.2 twice with no blood. Fortunately, the head of hematology at the hospital I used understood the reason for avoiding it in my case and worked closely with the docs who were primary on my case to lend his support for "riding it out"
Is there anything a person can do diet-wise to help with the ill effects of anemia? I'm going to have my husband bring this up with his dietician but wondering what has helped any of you.
Edited: Removed blue color-kitkatz,Admin
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With hemoglobin being very low multiple times (too many to count) 5.9 the lowest (ugh) they always hospitalized me immediately for blood transfusions due to the risk to my heart, lungs, liver, etc. With out the blood volume and oxygen they tend to fail. I am in fairly good health, and have no others issues other then my kidneys. It sounds pretty risky to ride it out. As too foods to eat to increase hemoglobin, I don't think they are kidney friendly and would cause problems with future labs and levels.
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It sounds pretty risky to ride it out.
It's a balancing act. In addition to the generatl transfusion risks (small), there is the risk of immunization making it harder to find a matching organ.
The hematologist I saw told me the literature suggests riding it out is better, but that if I dipped into the 5's, he'd have me transfused.
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It sounds pretty risky to ride it out.
It's a balancing act. In addition to the generatl transfusion risks (small), there is the risk of immunization making it harder to find a matching organ.
The hematologist I saw told me the literature suggests riding it out is better, but that if I dipped into the 5's, he'd have me transfused.
Did you require rest or were you encouraged to go about your daily activities as normal? Stay in and keep away from (germie) people or get out and about as you normally would? And what about food? Anything in particular boost your energy level to help with the fatigue and loss of appetite? My husband mostly feels fatigued and washed out. He feels aches and pain but then has dialysis and says the aches go away. But he is feeling wiped out.
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I was told to rest as needed. as functioning below par could lead to "accidents"- trips, no paying attention, nodding off- The doctor also told me to eat more kidney friendly foods. Simon Dog brought up a good point and one that I now wrestle with, is that the more transfusions you get, you get everybody and their uncle's antibodies. This makes it that much harder to find a match for donation.
Other than blood transfusions, the doctor can increase your Epo. or other red blood cell raising medicine. This does not work as fast as a transfusion, but over a time will help "ride it out'.
Good luck, being low on hemoglobin makes you feel like something you're tongue grew overnight!
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Other than blood transfusions, the doctor can increase your Epo. or other red blood cell raising medicine. This does not work as fast as a transfusion, but over a time will help "ride it out'.
The other tool in the box is iron sucrose (venofer) given when there is a shortage of the building blocks for the red cells.