Dialysis?

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Thumps
Posts: 1251
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Dialysis?

Post by Thumps »

Yeah, basically :)

As Wagolynn says, glad you're feeling a bit better!
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
harrym1byt
Posts: 10
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

I had my second IV iron three weeks ago, rather later than the 6 monthly they suggested and probably only then because I asked for it - suggesting my energy level was low and the monthly Aranesp 80 were not really helping. This time they did the IV a little slower the result in energy was less immediate and thought I still felt slightly ill for several days after it, it was not nearly so bad as the first time. From the blood tests, they have decided to increase my monthly Aranesp dose from 80 to 100.

In the midst of this we had a week away in the tourer caravan, after the IV. During the trip I managed to walk around 4 miles in one session, by walking a few hundred yards, then pausing for a while to recover. Much more than I could have managed before the IV iron.

I was supposed to have my last Aranesp 80 at 3 weeks after the last one, rather than the prescribed 4 weeks - administered by my local surgery, the equivalent of an higher dose, but that would have been whilst we were away in the caravan. They just said to have it ASAP after we got home. I asked if it might be sensible to find a surgery or hospital whilst away, to inject it, but they said not to bother - despite my keenness to keep it on time. Surely there ought to be some way to have such injections whilst away from home?
JMan
Posts: 3440
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: Dialysis?

Post by JMan »

Hi Harry

You can get a good idea on this website on the different types of dialysis
See the animations
https://www.kidneypatientguide.org.uk/treatment.html

The link below is from an American site, but can help you get an idea of how to choose the dialysis you want to fit your life.
Your consultant will be able to confirm with you which type is the most feasible.
Both types require a bit of training and self management to really get some semblance of life back.

http://www.davita.com/treatmentevaluator/


You can find even more info on the 2 main charity websites

https://www.kidney.org.uk/helpline

https://www.kidney.org.uk/

Hope thats not too much information overload

J
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Image
http://www.flickr.com/cybercast
harrym1byt
Posts: 10
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

Thanks for the links, I will study them later.

I am still managing to avoid the dialysis so far.
JMan
Posts: 3440
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: Dialysis?

Post by JMan »

harrym1byt wrote: Fri Jun 11, 2021 8:59 am I had my second IV iron three weeks ago, rather later than the 6 monthly they suggested and probably only then because I asked for it - suggesting my energy level was low and the monthly Aranesp 80 were not really helping. This time they did the IV a little slower the result in energy was less immediate and thought I still felt slightly ill for several days after it, it was not nearly so bad as the first time. From the blood tests, they have decided to increase my monthly Aranesp dose from 80 to 100.

In the midst of this we had a week away in the tourer caravan, after the IV. During the trip I managed to walk around 4 miles in one session, by walking a few hundred yards, then pausing for a while to recover. Much more than I could have managed before the IV iron.

I was supposed to have my last Aranesp 80 at 3 weeks after the last one, rather than the prescribed 4 weeks - administered by my local surgery, the equivalent of an higher dose, but that would have been whilst we were away in the caravan. They just said to have it ASAP after we got home. I asked if it might be sensible to find a surgery or hospital whilst away, to inject it, but they said not to bother - despite my keenness to keep it on time. Surely there ought to be some way to have such injections whilst away from home?
Most people home patients take there Arenesp at home. Also it can be stored outside of the fridge for up to 7 days, so not sure what the hassle is from your medical team.
Maybe some thing to discuss with your consultant, despite you not being on dialysis yet.
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Image
http://www.flickr.com/cybercast
harrym1byt
Posts: 10
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

JMan wrote: Tue Jul 13, 2021 10:35 am Most people home patients take there Arenesp at home. Also it can be stored outside of the fridge for up to 7 days, so not sure what the hassle is from your medical team.
Maybe some thing to discuss with your consultant, despite you not being on dialysis yet.
Neither I, nor my partner would be able to administer the Aranesp, despite the package suggesting that and how it should be self administered. I was quite concerned when the first pack was delivered, but instead and without me mentioning my concerns, or asking for one - an appointment was sent to me for the surgery to do it on a regular basis.

Since my last posting to the thread, I have been in touch with a surgery local to where we tend to holiday and they have suggested they are willing to do the deed. All I need do is sign on as a temporary patient make an appointment and arrive with the Aranesp. I don't understand why neither my local surgery, nor the renal department of the hospital suggested this as a solution?
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