Regrets

[Thelma]

Feeling fed up again today. The anaemia is really getting me down because I just can't function at all. I come close to fainting if I have to stand up for any more than a couple of moments, meaning simple things like crossing the road or waiting in a queue in a shop are frightening. I'm supposed to be seeing a consultant tomorrow, but may have to postpone because my son has an upset stomach and can't go to nursery. I really want to storm into the consultation and roar at the doctors.

I'm sure I will feel a million times better when it's sorted, but I'm fed up of waiting for them to get on and do something.

[xtiand]

I do hope you get some help at the appointment tomorrow, not sure if roaring at the consultant would help though! I'm seeing my consultant too - I'm planning to ask what's happening about dialysis, when I saw him four months ago he said someone would contact me about starting the process for home dialysis but I haven't heard anything yet! The EPO injections are a big help for me along with regular iron infusions but I'm feeling gradually less and less well so I think dialysis is probably not far off now. I would like to do home dialysis but would be happy to go up to the hospital if not.

[Thelma]

I didn't roar, but I was... clear. Anaemia team should be in touch within a week (ish) and I've had my BP medication reduced. Hopefully the end of feeling awful is in sight.

Bad news is that if my creatinine isn't down a bit (it's been climbing a little) they want to biopsy my new kidney. Consultant is concerned that there might be vasculitis going on. Keep all your fingers crossed for teeny tiny creatinine numbers please!

[Tibbs]

Good for you that you made your voice heard. I've gotten much better at making my point over the years, and as I'm someone who normally defers to authority that's a big step for me!

I'll be hoping for a nice low creatinine score for you asap.

[Thelma]

145 unfortunately. There's still time for it to come down before my next Clinic appointment. I've not been drinking anywhere best enough so will be sure to guzzle plenty and hope for the best.

[Tibbs]

How much do you have to drink each day?

[dirverd]

I had a similar problem post TX. My creatinine went up. And of course I was very worried.

But thanks to advice on here I upped my fluid intake (between 3 - 4 litres per day. Depending if I've exercised.) and it helped.

It now goes from around 115 to around 130) and the last wo months it's hovered around here.

It's quite common for it to go up and down a bit post TX (this is also what everyone on here told me) before you get your baseline.

Hope it comes down again for you soon.

[Thelma]

I'm almost too ashamed to tell you. Today I've had half a cup of tea and a can on diet coke. That's quite typical. I've never been a big drinker.

[rheaybou]

Drink more fluid.....look after that kidney. You may not enjoy it, but think back to the days of dialysis/fluid restrictions if need be....


Just drink

[Thumps]

It's true, you really need to try and get into the habit of drinking more. Take a bottle of water (or a tastier fluid ) with you everywhere, and make a reminder in your phone that it should be emptied every 2 hours to make sure you keep up. Get into the habit of just sipping regularly, a lot of the time. It will REALLY help your kidney to make sure it's well lubricated Did your unit not have you do a fluid balance for the first few weeks?

[Aileen]

Thelma, your shame is not misplaced, no-one leaves a transplant unit without knowing the minimum fluid required and in any event common sense tells you that half a cup of tea and a tin of crap is bound to be insufficient. I just wish posters would say what they REALLY think! especially posters waiting for a cadaveric kidney to become available.

[Thelma]

Funnily enough they didn't actually tell me how much to drink. It want until is been out a well or more that I asked. But I do know now and I do need to drink more.

[Thumps]

That's really crap of your unit not to advise you, I reckon - the staff on the ward immediately after the op were bugging me to drink 3-4litres a day and had me keeping a fluid balance book for a month afterwards to make sure I was doing it right! The lady opposite me was on a 500ml restriction, I remember how sorry for each other we felt

[dirverd]

It's sounds like your nurses forgot to give a load of stuff / advice when you left.

I was given a measuring jug and a urine 'input' urine 'output' book so I could write it all down. And told quite strictly that my input should always be more than my output.

For others coming up to a TX make sure they give you this when you leave. When your stumbling about on pain killers it's quite easy to forget to 4 odd litres.

I found that I go to the toilet a lot more, but it gives me an excuse to give my hands a thorough washing quite regularly so it helps make it less likely for me to pick up bugs.

[rheaybou]

Thelma ..

People here are not being nasty. I think we all just want you and your kidney to have a long life together.

If I remember rightly you have never been fluid restricted/spent time pre op in hospital?

It may come easier for people who have been in that position. Just try and slowly build it up, will soon become a good habit. Its a good habit i had to break when I went onto dialysis.....Boy i could guzzle all day.

Will be my challenge to get back into that habit post tx, but we all know how important dehydration is.

Keep up the good work and find a fluid you enjoy.