I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on March 26, 2014, 04:52:05 AM
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I have been told that for my very serious anaemic problems doctors urgently needed to initiate "Mircera" treatment in order to avoid a blood-transfusion.
"Mircera" is an artificial hormone like the natural hormone erythropoietin which is produced by the kidneys in the production of red blood cells
to increase the hemoglobin level in the blood.
Has anyone had this treatment and were there any side-effects and how many injections have they been given?
I have already had three injections over eighteen days plus 500 mg Venofer (for my very severe iron deficiency).
I feel pretty rotten and would like to find out if anyone else has undergone this treatment and how did they cope with the treatment and all the side-effects?
Thanks from Kristina.
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Thank you, Noah for your kind and very understanding letter.
Your letter helps me to feel a little bit calmer and I can see your kind understanding. You must have gone through a lot when your transplanted kidney failed
and the Procrit/Venofer medication also failed, which left you in such a terrible quandary...
I am going through a similar quandary because ever since 1971 I have tried so very hard to keep “my two little fighters” functioning –
- despite all the odds, despite my very fragile health and despite all the nephrologists grim future outlook for me and “my two little fighters” -
... I had one little hope to perhaps keep my "two little fighters" functioning a little longer... but unfortunately time has caught up with me
and “my two little fighters” have become very tired and exhausted from their struggles and right now I am trying one last effort with the “Mircera” injections,
but these injections make me feel terribly exhausted and very hot and ice cold and irritated all at the same time ...
One good point has emerged and that is that I have become much calmer about my situation now
and I also appreciate very much your kind thoughts and your kind understanding -
- because you have been fighting a very similar battle ...
...it makes me feel a little better to know that I can always ask for support and advice – that knowledge helps a lot and assists me to feel much calmer.
Thanks again Noah for your very kind and much needed understanding and support, it is very much appreciated, Kristina.
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kristina,
With knowledge as your sword, you are well poised to do battle with this monster we call End Stage Renal Disease.
All the best,
--Zach
8)
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Kristina,
This time last year I was sick, and tired, and had been for almost as long as I can remember. I told my Neph that I, we, need to do something cause all I do is lay in bed with my boys (Dog) cuddled up trying to stay warm. I don't hurt so much laying still cuddled with them.
Dr said I could have a cath placed, once it healed I could start PD. So we did. By mid-May they said I had healed well enough to start training so the wife and I spent a week in class. My dwell times on exchanges were short, one to two hours, but still we could see water coming off. End of the week we started 4 exchanges a day at home. I took off almost 40 pounds of water in the first week to ten days. My legs, knees, calves, ankles, and feet aren't swollen, not even puffy any more.
I feel alive again. Still no energy, but alive, not just waiting to die any longer.
Now if I could get some energy I'd be thrilled.
I have a chest cath.It comes out about level with my nipples and about 3 inches left of center. I think it is in a good spot so I can see it with and without a mirror, making it very easy to clean and cover. I haven't any problems banging it against anything as I've heard some do with it located in the belly. I am numb in that area from my by-pass surgery years ago. That can be a good thing and also a bad thing. I haven't had any infections, I'm careful so far. But we did have some delays in healing as not feeling the hose pull during exchanges the hole kept becoming enlarged, oval, and they kept using those silver Q-tips to burn/cauterize the opening. Never hurt til they got down inside. I learned how to tape and support the hose better and all lis fine now.
All manual exchanges is a bore, and I have alarms set to remind me that it is time. Someday after the 'Boys' are gone I'll most likely start using the cycler so all exchanges will be done by the machine during the night. Hook up, go to bed, wake up in the morning and disconnect. I'm looking forward to it.
Think about it, ask if PD may be suitable for you.
I have this 'thing' about needles. I don't care for them a bit. Between the added sugar of the PD solution used, and having my top teeth out, eating only sift foods, I am now in the diabetic zone and on insulin. Lucky for me those needles a super thin and short, so I do manage to inject my insulin nightly. But the idea of going on hemo scares me stupid. I just pray that I don't get any infections and that PD always works.
Continue to ask questions, it's the best way to learn.
Talk to your Neph, are you a candidate for PD, when can you get your cath placed as it takes time to heal well enough. Get started earlier rathe than put it off until it becomes too serious of a problem and you are too sick to cope.
Sorry for such a long posting.
Take Care,
Charlie B
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I usually get at least one dose of venofer every month, sometime several times a month. It always knocks me out for the rest of the day and sometimes the next day. It usually makes me sleep the rest of the day.
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Not unusual with ESRD to get very serious anaemia problems. A lot of us have been there.
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Hello again and thank you all for your kind thoughts and writings.
I consulted with the nephrologist again and he told me that my blood tests/Urea (Bun)/Creatinine and my red blood count have all improved
and he suggested that I could “enjoy my honeymoon of feeling better" before starting dialysis, consult with his clinic and go from there.
His suggestion made me very happy because since starting with the "Mircera" injections “my two little fighters” and I have come back to life again.
I shall continue with my rigorous vegetarian kidney-friendly diet so that my pre-dialysis situation may last for as long as possible without me taking any more risks.
I feel very much better physically and emotionally and I also feel so much calmer about my situation.
I am also glad to have been given a little more time to adjust with the thought of what the future holds for me...
Thank you very much again, Kristina.