Change of mind: Hi, my function is still 1... - Dialysis Support

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Change of mind

lauralou88 profile image
21 Replies

Hi, my function is still 12% creatinine is high at 414. I was going for PD but have changed my mind on Tuesday and opted for HD.

I am in to see the vascular surgeon on the 9th. just wondered what he will do and look at. And after that appointment how long will it be until I have it fitted.

Nervous but ready....

many thanks

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lauralou88 profile image
lauralou88
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21 Replies
Charlene_Coxhead profile image
Charlene_Coxhead

Hi Laura

I'm pleased you have reached a decision, as I know you have felt torn between PD and HD.

I hope your appointment goes well on the 9th.

Have you had your hepatitis B vacations yet, I've got mine booked for Monday as been toId i need this before I start dialysis. Not sure if this is every unit protocol.

Take care

Charlene x

lauralou88 profile image
lauralou88 in reply toCharlene_Coxhead

Morning 😀

Yea feel more at ease with my decision. I have had my hepB vaccinations last year. Had a course of them for a while. As of June 2016 I was still ' covered ' by them so that's all good.

Not be long, get them over and done with and your a step closer too, then aren't you.

Good luck.

Xx

Charlene_Coxhead profile image
Charlene_Coxhead in reply tolauralou88

I certainly am. I've been put on the deceased donor list now that my family have been ruled out of being a donor. I've had my arm check for having a fistula and have been making sure no bloods are taken to preserve the veins, but no date for surgery yet.

Cx

Nicolala profile image
Nicolala

Hi laura lou

The surgeons will want to check your veins and pulses in your arms. They may do a scan etc. This is to check the most suitable position for a fistula or graft. It terms of length of time: this probably depends on the hospital and the urgency. A fistula needs around 6 weeks to be strong enough to use although I've heard of them being used sooner. If it's a fistula, nothing is actually 'fitted' in your arm. The main artery is connected to a vein and to your pulse, which gives it the buzz or thrill. Your arm will be tender and probably bruised for a week after and you will have stitches and a thin scar of 1-2 inches long. A graft is used when the veins are not suitable or fistula attempts have failed. Here a special rubber tube is fitted under the skin instead and connected in a similar way. It will either be brachial ( inside of the elbow area) or radial ( wrist area) and if you're right-handed, most likely in the left arm.

vascular surgeons are incredibly skilled people. It's certainly an easier process than having a pd tube fitted. Hospitals have different views on whether you have a local or general anaesthetic -my latter 2 were both general. I think they tend to do that more often.

Good luck. X

lauralou88 profile image
lauralou88 in reply toNicolala

Thank you... I would rather general as I can't stand needles 😳 Bit silly really when I've chose to do HD 🙄

Does the procedure take long? Xxx

Nicolala profile image
Nicolala in reply tolauralou88

To be honest it's been a while since my last one, but I think something like an hour. X

poppydolly profile image
poppydolly

I had my fistula procedure under local. It is in my right arm and while he did the job, a lovely male nurse talked to me the whole while on my left side. When it was done they put my arm in a heated sling for about an hour (I think). Had to keep it warm (covered up) for a while after and do clenching exercises. My job at the time involved alot of typing which was also good for maturing the fistula. It was covered with dressing and I had to go back to the hospital 5 days later to have them removed. What I saw then really surprised me, there was a lovely little white scar 1.5 inches long, all healed and almost invisible. Good luck on your journey, it won't be anything as bad as you imagine

lauralou88 profile image
lauralou88 in reply topoppydolly

Did you feel much when having it done. Have you started dialysis yet?

Thank you very much xxx

lauralou88 profile image
lauralou88 in reply topoppydolly

Also how long did it take? Did it take long xx

Gannrita22259 profile image
Gannrita22259 in reply topoppydolly

Got 25% of my kidneys left how did that help you

He will examine your arm, maybe book you in for a scan to look at the veins/arteries.

If you are right handed he may try and look at your left arm and visa versa.

There is sometimes a waiting time for surgery, unfortunately if you are not yet on dialysis via a neckline you won't be 'urgent'

What you need to focus on is the AFTERCARE after surgery.. Your fistula is going to be your LIFELINE for dialysis which prevents you from dying. Treat it like gold!..

You should get the information below from the surgeon or vascular team but have a good read NOW.. Its vital you try and strengthen the fistula as much as possible BEFORE its needled (its not a bad idea to consider learning how to needle yourself as well).

esrdncc.org/ffcl/for-ffcl-p...

nhs.uk/Conditions/Dialysis/...

Fistula Fanatic:

Facebook page for better fistula care:

facebook.com/purplechick820...

There will be some pain, but take painkillers and keep your arm warm and wiggle your fingers frequently!

sylla123 profile image
sylla123 in reply to

Hi JMan .. hope you are doing well .. do you still have pain from the spine infection Spondylodiscitis ? My Husband is all over the place with pain ! A new pain doctor came on the scene and we were told he should not be on Fentynl , he had been on it too long 14 months without being monitored ! it is 100 times stronger than Morphine and 50 than heroin .. could make his pain worse and mess with head .. so much so that he took an over dose ! life has been and still is just hell ! just from getting that infection through his neck line ... If any of you get back / neck pain don't wait for it to go; get it checked pronto with tests .. I wish I knew what I know now !

The Orthopaedic Surgeon told us his vertebrae T11 /12 had fused naturally which was a good thing .. His pain just gets worse and now can hardly walk .. so we have gone private to a top Nuero Surgeon in Cambridge .. he wanted an up to date MRI and a CT scan to be sure .. but he tells us his vertebrae have not fused properly .. we are seeing him again this Friday coming ,, but the out look is not good ...

The last time we saw the NHS Ortho Surgeon he didn't examine my husband or xray .. and he never ever had a CT scan in NHS Leicester ... Why not ? with something so serious , you trust these people as they are supposed to be experts ; we asked him why is his pain getting so bad .. and he just replied " Try a hot water bottle " I just couldn't believe it .. We shall not be seeing him again ! Why did he tell us his Vertbrae had fused ? when it had not . and didn't even check with a CT scan ?

lauralou88 profile image
lauralou88 in reply tosylla123

That's really bad. I hope he gets sorted soon and the pain can be eased quickly too.

Like you say you would have thought the NHS would know what there doing as that is what they are trained in, isn't it. You put your life in their hands, thinking they are helping thank goodness you both went private

I wish him the best of health and a quick recovery!

Good luck, take care. Xx

sylla123 profile image
sylla123 in reply tolauralou88

Thank you Laura ... everything was going fine with the dialysis , so don't be afraid of that .. we had a near normal life except for dialysis days ... we even had a huge party for our anniversary of our meeting 50 years ago ... I didn't want to wait for our actual wedding anniversary .. you know ! just in case ! 5 days after the big party which was like a dream , he got the infection ..if we had waited there was no way we could have a party this year .. must have had a premonition...!

in reply tosylla123

No, I've had severe back pain since, and they've rescanned but not found the symptoms of discitis again.. Mine was an infection that is apparently common with necklines, not fistulas.. But then I'm not one to keep to the textbooks! :)

I'm moving soon so I just hope my new team can be as well involved and managed as my old.

sylla123 profile image
sylla123 in reply to

Yes JMan .... my husband's infection was from his neck line while he was waiting for his fistula to be ready to use .. sorry to hear you still have back pain .. my husband also doesn't have any sign of Discitis .... Have they found the reason for your pain .. what happened to your spine /vertebrae with the infection ? Have you seen a neuro surgeon ? I will let you know how we get on when we see the surgeon on Friday ... He is one of the top ones in the country , he also specialises in cronic pain and infection of the spine , but he has told us a OP is very risky , especially with the added complication of dialysis , and my husbands age 77 ... Good luck with your move ...

in reply tosylla123

They thought the source was from my fistula.. I'm far more careful these days and use a body wash on it daily. (Octanisan)

It freaked me out when suggested surgery/investigation. Once the infection was treated the inflammation reduced.

I do light Tai Chi, Quigong when I can and really hope to get back to swimming.. Or at least getting in the water.

sylla123 profile image
sylla123 in reply to

Keep in touch ;-)

poppydolly profile image
poppydolly

Sorry I honestly do not remember. Less than an hour I think

welcome profile image
welcome

Hi Lauralou88, Please do not worry ab8 the procedure at all. Everything will work out smoothly as it did with me and a lot of other renal patients that I know. Good luck and hope all works out well

lauralou88 profile image
lauralou88 in reply towelcome

Thank you very much 😊 Xx

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