Saturday IR Update: Hi guys, I hope... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Saturday IR Update

PaigeyPaigeForLife profile image

Hi guys, I hope this day is meeting you guys in no pain. I seem to be doing great from my IR procedure, no tenderness in the spot, i can finally sleep on my right side... Moving forward do far no pain yay for me.

I personally think the IR procedure is something to explore, i know its different for every individual but it is something to think about. I think i posted a link on IR procedure.

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PaigeyPaigeForLife profile image
PaigeyPaigeForLife
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9 Replies
Wmspl profile image
Wmspl

Can you forward the link pls again, Thanks

PaigeyPaigeForLife profile image
PaigeyPaigeForLife in reply to Wmspl

Here is the link, it is talking about what Interventional Radiology is and the benefits. I shared it because I know there are lots of people who can get some relief with pain...

I tried looking for one especially about PKD and IR but found none. youtu.be/-broGPtxV50

Wmspl profile image
Wmspl in reply to PaigeyPaigeForLife

Thank you 👍

Wmspl profile image
Wmspl

Nice to hear that ur doing well, the IR procedure has given us confidence.

Great Update

Rick234 profile image
Rick234

That’s great that you’re better, I was about to ask you, since you complained in the forst few days...

Rick234 profile image
Rick234

Now you’re feeling better, would you mind if I asked you a few questions? Was thay schlerotherapy what you did? Like were the cysts “killed” (filled) with ethanol or something?

What was the size of the cysts you drained? I have one of 4 cm on my left ribs that is bothering me a lot...

Did you have it i the uk? What hospital?

Best wishes!

PaigeyPaigeForLife profile image
PaigeyPaigeForLife in reply to Rick234

Intervention Radiology, my cysts were 16cm and bigger it was done in Baltimore Maryland Johns Hopkins

snowcastles profile image
snowcastles

Hi PaigeyPaigeForLife,

you are a champion for sharing what you went through I had a similar reaction to this procedure, the fever and how it has healed and progressed into comfort from the cyst going down.

Before it was drained As I sleep on my left side I had missed sleeping though discomfort and pain and the cyst felt like it was caught in my side under my ribs, I found it hard to breathe and it was painful.

After the cyst was drained through a syringe at the radiologist I felt instant relief. I fell asleep at night. I still have pain from another similar sized cyst on that kidney that is positioned in the centre of the kidney but its bearable if I don't do so much around the house.

Other symptoms are as my kidneys are huge now I am tired, can't eat much and have had repetitive bad infections that I was told were mild. I was in a lot of pain. Seeing my GP and doing a urine test I was told that I could have antibiotics for this two lots and had another infection also in my liver.. I also got antibiotics for this also.

Good news is the infection must have calmed down and my kidneys have since calmed down a lot and I can sleep. I do get very sore if I do vacuuming, lift anything much like shopping, bend to do dishes, too much around the house. Good news the kidney specialist has given me a permanent antibiotic for my kidneys to stop infection from reoccurring all the time. I'm taking it and go back in a month. I can write back on here later and let you know how it goes.

Just thought to share this.

Cheers

Snowcastles

Thanks for sharing snow castles, I understand about the pain when sleeping. Not so much pain as before just discomfort from my enlarged kidneys.

I am however suffer with depression and anxiety so not having a good time right now.

I hope that you are feeling and sleeping better.

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