Energy efficiency

[HeWhoDares]

Hi I’ve got kidney failure and Ive got to wait till my kidney function hits 15% or lower till I can be put on the waiting list it’s on 17 % at the moment but I’m an engineer I’ve got so little energy after work I’m fighting to stay awake I cycle to work because I can’t afford to run a car saving up for if I can, get a transplant I’ll need 3 months off which because it’s the private sector won’t get paid for except statuary sick pay which is £80 a week is there anything anyone can suggest to boost energy levels

[Charlene_Coxhead]

To be honest you will be lucky to go on the transplant lost when you get to egfr of 15 as part of the requirement is you are 6 months always from dialysis. I didn't go on the list to I mime was 10 as was told there was little point being on the list as wouldn't score high enough. To be considered as a kidney match and would just mean I was on the waiting list longer and not really be considered.

Sorry if this isn't what you wanted to hear.

Have you not considered the life donor option as this is a far better option. I wasn't lucky enough for mine to work out.

Hopefully you keep your function at 17 for much longer. Stay eating a good balanced diet, stay active. Remove sodium from your diet and hopefully you can help keep the function you have.

You may want to check you HB and ferritin levels as may require epo injections or iron infusion. I don't it's app at stage 4 but everyone is different.

Sorry I couldn't have been more encouraging but always believed it's better to be honest

Good luck with everything

[HeWhoDares in reply to Charlene_Coxhead]

Thanks for the reply does help already had a iron infusion and on injections for ferritin levels every 10 days hope your ok 👍

[rabbit01]

I was diagnosed at 17% four years ago and worked full time until my kidney function dropped to 12% this summer and I was just too exhausted to carry on working. At present I have no income aside from SSP which is very stressful so I can relate to how you are feeling. I would suggest you do your best to build up some emergency savings whilst you are still able to work. I know it's not easy. In terms of getting more energy have they checked out your haemoglobin levels ? Also get your B12 checked as both of these can fall with kidney disease but can be easily increased with periodic injections. Let us know how you get on.

[HeWhoDares in reply to rabbit01]

Nice one will do my best just trying to save as much as can but there’s so many appointments I use all my holiday and have to have unpaid days but I’ll keep going as long as possible

[rabbit01 in reply to HeWhoDares]

Sorry to hear that. My company were very good and never expected me to take holiday or unpaid time to attend the numerous medical appointments. You may find that your renal centre has someone who can advise on what you are entitled to, ours does. Worth asking. Best of luck with everything.

[HeWhoDares in reply to rabbit01]

Nice one will see as could do with abit of help never asked before hope you had a good Christmas and happy new year

[Falkenhayn]

Since the kidney manufactures the hormone, erythropoietin, which is essential for the production of red blood cells in the body, your energy will decline with decreasing kidney function, so it will help to have injections of the artificial erythropoietin hormone to lift hemoglobin levels and strength. Unfortunately, the artificial erythropoietin has dangerous side-effects, so it cannot be dosed sufficiently high to bring your erythropoietin levels to normal, so instead of having a normal hemoglobin level of around 140 (for a male), you will be kept around 110, so you will have to remain quite anemic.

I can understand your eagerness to get on the transplant list when your renal function sinks sufficiently low, though when it is low enough to be on dialysis that process can provide only 10 to 14% of normal kidney function, so your energy and erythropoietin substitution problems will remain during dialysis.

The benefits of doing a pre-emptive transplant, so that the patient spends no time on dialysis, are now well understood, so try to see if you can arrange something like that. It is now known that there are no benefits to starting dialysis earlier rather than later, and the massive absorption of time through the dialysis process itself severely undermines the patient's ability to organize a productive life.

Good luck on a speedy transplant: it was life-transformative for me.

[HeWhoDares in reply to Falkenhayn]

Thanks for the advice 👍

[toeragthecat21]

Hi i had transplant just over two years ago..the things that i can say to help is cut out red meat and eat fish.its not so hard to digest..drink water...sleep well..keep to bmi weight levels ..keep blood pressure low..dont get stressed..and allso do a lot of this😊

merry xmas...

[HeWhoDares in reply to toeragthecat21]

Thanks for the advice I’m always smiling anyway it keeps me going there’s no point in being a miserable git hope you had a great Christmas and happy new year when it arrives in 5 days have a good one 😝😜

[Stephk85]

I'm having the same frustrations on my second one. No insurance to cover any time off and on SSP if I go off again. Fully sympathise. Having a live donor is really helping shuffle things along as personal circumstances can be taken into account. Like my financial situation. The fact is though, there is always someone who a more important case than us. I've recently started a macros diet where I'm limiting my protein intake which is seriously helping my digestion issues and managing to work out 3/4 times a week which is really helping me mentally. Work have also found an alternative role within the business until my surgery has happened. Perhaps this would be an option?

[HeWhoDares in reply to Stephk85]

Thanks for the advise I have had a meeting with the hr guy at are place which did say we will do what we can but can’t pay you it’s not our policy if your off sick and if I get to a point when I can’t do me job as well as others they can sack me for health reasons apparently i just thought what a sympathetic lot I work for but they can reduce my hours which means less money mines the only income I’ve got just wish I could pause my bills whilst you go through this it’s stresssful enough as it is

[Stephk85 in reply to HeWhoDares]

I would start looking at your own legal advice if were you. You have a condition that will improve so fast once you're recovered. Sadly we can't do much about your employers sick pay policy and I know that first hand, but citizens advice could provide a little assistance when it comes to their comments on keeping your job. Check out your contract too. After the treatment I received from my employer with my sick pay and their procedures, I changed how I talked about things. Make a concise log about any correspondence you have with anyone at work about it, verbal or written

[HeWhoDares in reply to Stephk85]

Yeah that’s what my step dad said as well I’m on it now thanks tho I haven’t signed anything so I’ll see what they say appreciate your input tho thanks 👍

[Damigi28 in reply to HeWhoDares]

Hi, I am assuming you are in the United States. What kind of job do you have? The reason I ask is because if you are full time than you should have short term disability coverage. You have a disability under the federal law. You need to look up the ADA rights that you have. (Americans with Disabilities Act) It would be pretty risky for them to terminate you. I would double check with your employer. (my HR dept had the wrong info) They can also put you in a different position or you can take a medical leave. I would be happy to help you in any way that I can. I have studied all about this. You will also qualify for social security also. Best of luck to you.

[Sstan in reply to Damigi28]

Short term disability is completely dependent on the employer, if it’s a small company they are not required to offer it.

[Damigi28 in reply to Sstan]

Oh, ok. I didn't know you worked for a small company. Best wishes for you.

[Philipjm]

Hi,

Transplant list is a bit of a post code lottery and will depend on the policy of yiur health care trust.

My renal unit will put suitable patients on the list at egfr15 with the hope of a transplant before dialysis required.

Has not worked for me but I have been called twice in the last 18 months but a no go after 12 hours waiting.

There are so many hoops to jump through even when you get the call, be prepared for dissapointment and keep faith. It will happen , best wishes for Christmas time, a happy and peaceful Christmas.

Philip

[HeWhoDares in reply to Philipjm]

Thanks for that appreciate it hope you had a great Christmas and have a good new year 👍

[Sandybru]

Hi. I was put on the list when my levels dropped to 10% I was working full time, and still going out at weekends even tho I couldn't do a lot due to energy levels. I only was on the list for eight months. If you can try and save money even after your transplant, as problem s can pop up and may end up on the sick for a few weeks. My transplant was three years ago , the past two years I've came down with the normal cold which it's hard . I tend to still eat my healthy diet and drink plenty of water. I had iron infusions and epo injection s weekly this kept me going until my transplant. Good luck. Sandra