Gfr down to 19

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Re: Gfr down to 19

Postby DavB » Sat Mar 25, 2017 9:11 am

Thanks for the replies guys. I think I'm gonna just put up with it and not take the Furosemide. I'll just buy some jeans in a bigger size for when it happens. My consultant said that my kidneys are less able to cope with hormonal water retention.

Yes, the gout started when I was pregnant with my son as did cramp in my thighs. I kept going to A & E thinking I'd sprained my ankle, there's no worse pain in the world but I'm on allopurinol to try to prevent it.

At my last consultation my consultant suggested we start my pre transplant work up tests so they can put me on the register but in a suspended state to be activated when needed. He made a loose prediction that I might have a couple of years before I will need dialysis/transplant. I have my sister and husband both willing to donate. The thinking now is that my consultant would be looking to transplant prior to me having to start dialysis. This is a tricky thing to time because it's silly transplanting too soon due to a transplanted kidney not lasting forever. I suppose dialysis costs a lot of money so it makes sense to avoid people having to wait on dialysis for ages, especially if they have a potential live donor.

It's really hard not to worry but then I shouldn't spoil these last few relatively healthy years worrying about what I can't control. I'm hoping at least I can manage to stay well and working as long as possible until my son is in high school and a little less dependant on me - he's 9. The pressures of family are hard, my husband is registered blind, can't drive so practically a lot relies on me being well.

But there's people a lot worse off and I think a positive attitude will help in the long run. I just have to buck up and carry on like we all do. Keep well :D
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Re: Gfr down to 19

Postby wagolynn » Sat Mar 25, 2017 4:12 pm

Hi DavB,

Two thoughts on skipping the Furosemide - If your weight returns to normal on it's own that would appear to be OK but if you are always carrying excess water then this can lead to other problems.

The second thought - tell your consultant you are not taking them, he/she will be making decisions believing you are taking them.
Last edited by wagolynn on Mon Mar 27, 2017 2:26 pm, edited 1 time in total.
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Re: Gfr down to 19

Postby Notso » Mon Mar 27, 2017 12:02 pm

Things do move quickly sometimes. Saw my neph today who suggested it was time to have a fistula created. I still have egfr of 19 and he tells me he thinks he can keep me going for at least a couple of years. Perhaps he always has a punt each way and never on the nose.
I also told him I had a preference for PD however he still thinks they should create a fistula. His main rationale is that if I crash I won't require a neckline as he reckons that necklines should be avoided if possible.
Moving on from that he told me that HD would probably be better for me. The reason he gave is that due to my size (6'3 and 16 stone) PD may not do a good enough job. He suggested home HD 5 or 6 times a week.
I just might pop.in and see another neph for a second opinion and I still.intend to hold off for longer than Angie100!!!
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Re: Gfr down to 19

Postby wagolynn » Mon Mar 27, 2017 2:26 pm

Hi Notso,

A neck line will not give a sufficiently high enough blood flow, maximum flow with a neck line is about half that of a fistula.

PD doe's not work well with bigger than average patients.

Best wishes.
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Re: Gfr down to 19

Postby Notso » Mon Jun 05, 2017 5:55 am

Well I went and saw another neph who I am very happy with. I am currently bouncing between eGFR of 17 to 20 but am feeling very crook and tired. The neph wants a true GFR using nuclear medicine however it can't be done where I live so I must fly 1770 miles (one way) to get the test done. He suspects that my true kidney function is less then the estimates. I hope he's wrong!
In the meantime my youngest brother is keen to donate and has started all the testing. Should he be a goer I will be having the transplant in Newcastle (Australia) which is 1930 miles from where I live.
My neph says it doesn't really matter anymore about HLA and tissue type which I have found a little surprising (we are the same blood group) but I am wondering if that is correct of whether it is better with a closer match. The last thing I want to do is take a kidney from my brother that's not going to last.
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Re: Gfr down to 19

Postby wagolynn » Mon Jun 05, 2017 3:09 pm

I would think, the greater the mismatch the more drugs required to maintain the new kidney.
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Re: Gfr down to 19

Postby suz » Tue Jun 06, 2017 2:23 am

Hi Notso
I had my transplant in Sydney over 3 years ago now, from a deceased donor with a 5/6 mismatch. My Renal Specialist told me the same as yours has told you. I am also on a lower dose of drugs than many transplant patients. I have attached a link that may also be helpful. http://www.ucdmc.ucdavis.edu/transplant ... tible.html
Hope this is useful.
Regards Suz
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Re: Gfr down to 19

Postby Notso » Wed Jun 07, 2017 7:36 am

thanks Sue and Wagonlynn. This transplant business would be very interesting even if I wasn't in need of one. I.must read more.
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Re: Gfr down to 19

Postby menardfrane » Thu Nov 23, 2017 3:58 am

I was kidney transplanted year ago and still have water retention on my ankles. Anyone out there experiencing same problem?
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