Introduction to my story

[Emzmc]

Hi there everyone. Just thought I'd introduce myself as I've just joined today. I'm Emma and I'm a 28 year old mother of two children. Last year, after giving birth to my son, I was diagnosed with Renal Tubular Acidosis, after a very bad pregnancy, resulting in a weight loss of 6 stone. Renal Tubular Acidosis is a form of kidney disease. I'm basically feeling very frustrated at present as I haven't been given any support or information from my medical team, and online information is also very limited. I just wanted to know if anyone else has experience with RTA? Thank you for taking your time to read this. Really appreciate it 😊 ❤️

[Hidden]

Hi and welcome,

I found this for your reading. It's from a US organization. I understand that being in the UK health program you have issues as have several others here. National Health is what it is and I can't offer you any help there. I've tried in the past and seem to run into roadblocks so this is the best I can do. If you need any other information that I can help with from a US source, let me know and I'll see what I can find. You'll meet a lot of good folks here and many will be able to offer you assistance. Best of luck.

niddk.nih.gov/health-inform...

[Charlene_Coxhead]

Hi Emzmc

I'm sorry you haven't been given the support and advice from your doctors.

Sorry to hear you had such a rough time with your last pregnancy. Am I right in saying you lost 6 stone or you weight 6 stone whilst pregnant?

Have they done any biopsies or told you what your renal function is? I know it all feels very scary right now but the key is to get a good renal consultant.

I know I'm asking you a lot of questions but was it your GP that told you or a renal doctor and where abouts are you based.

I was diagnosed 18years ago although I was born with renal disease but didn't affect me till I was 20 years old and at thst point only had 20%gfr. I'm now at 4.5% and still not on dialysis and this is because I have a fantastic doctor thst works with me and has helped me know end with the right medication and diet. Up until July my renal function was still at 7.5% and I was stable it's only know I'm having to learn home HD to start very shortly.

I want to tell you a bit about my journey as it doesn't have to be scary and it doesn't have to take over your life but getting the information you need is important.

If you haven't been told your gfr or been given a renal doctor you need to go back to you GP and push for one.

I feel for you as when your first told it's the unknown that is more scary than the disease.

Take care and some one is always here for you

Charlene x

[Bunkin in reply to Charlene_Coxhead]

Was glad to hear your story as I’m at 8 GFR now and still not on dialysis and doing pretty well. You give me encouragement.,😀😀😀

[Charlene_Coxhead in reply to Bunkin]

Hi Bunkin

I'm glad I have given you some encouragement and that no everyone follows the same path. I felt good at 7.5% and was going most things still bit being very strict so I can't recommend following your doctors advice to the letter as it has definitely worked for me. I see and gear so many delay making changes and by the time they do it's to late.

Well done what ever you are doing is working for you just don't push yourself to hard.

Take care and hope you stay off dialysis for a bit longer.

X

[Bunkin in reply to Charlene_Coxhead]

Me too! However I have found myself being lax on my diet. I just find it so hard now and I’m so tired of fruits and I’m hungry! I’ve always been little but better be always eaten a lot! So moderation is sometimes hard for me. But I keep plugging along. Feeling blessed😀

[Bet117 NKF Ambassador in reply to Charlene_Coxhead]

Charlene,

So well said and compassionate. We may not have gone through exactly what Emma has, but through our own journeys can support!

Hope to hear from you again soon!

Bet

[Charlene_Coxhead in reply to Bet117]

Thank you for your kind words. I hope what I said gave her some comfort. We are all here to support each other through our journeys, and I find sharing my journey helps remind me how far I've come.

Charlene x

[Bet117 NKF Ambassador in reply to Charlene_Coxhead]

Charlene..

Your words are meaningful, filled with great advice,inspirational and wonderful!

Happy to be on your team!

Bet Xx

[Charlene_Coxhead in reply to Bet117]

Thank you that means a lot

[Bet117 NKF Ambassador in reply to Charlene_Coxhead]

AfA.. Behind you all the way!

Xx

[Bunkin]

Hi Emma, just read your story. I don’t know anything about your particular illness but do understand your frustration. I think that’s pretty much everywhere as kidney disease just doesn’t seem that important to people in the grand scheme of things. But on this site you can get valuable information and people to help you along the way. It’s great support from people who understand. Know that you’re in my prayers as is everyone in this site. With God, all things are possible😀

[rabbit01]

Welcome Emma, you are at the right place for support and advice on kidney problems. Thank goodness for this forum and the people that write on it as I have found out far more about my condition and made good friends and got wise advice far more than any doctor has ever had the time to advise me on. I don't have RTA but I know of it. I have IGAN which is a condition where the immune system produces chains of molecules that get stuck in the kidneys causing inflammation and damage. I am at stage 5 with about 13% kidney function left. One thing I would suggest is that if you are not getting the support you need from the doctors you need to make a fuss. Honestly mine have been rubbish and it was only after comparing treatments with other people on this forum that I had the ammunition to go back to my docs and get some action. My advice is learn all you can about you condition and don't just accept what your doctor puts forward. I even had one idiot doctor who told me to go home and carry on eating normally. If I had of done that I would have been on dialysis by now. I wish you all the best.

[Bet117 NKF Ambassador]

Hi Emma,

Bunkin said it all. The people on this site are compassionate and knowledgeable. Reach out to any one of us at any time and we will always reach back.

Hearing that you have something abnormal going on with your kidneys is a shock; we have all been there, it is perfectly normal. There is no rhyme or reason, often..it just happens. Hugs..

The key is to maintain an excellent rapport with your GP and nephrologist. Ask questions and be informed. Insist they communicate as well. If they are not meeting your needs, don't be afraid to find doctors who will...and work with you; answer your questions and save you unneeded stress.

Eat healthy- kidney-friendly..

Lots of vegetables such as onion, red peppers, cabbage, cauliflower, zucchini, eggplant and summer squashes. Fruits such as apples, strawberries, blueberries and pineapple.

Low sodium and low protein..as well. Your doctor can advise you there or refer you to a renal dietician.

Many ways to prepare veggies..snack on them with hummus is great and you won't be hungry.

Remember that everyone is different and every case is different, so listen to your body and communicate with your doctors.

I may not have the same disorder as you, but will do everything that I can to support you!

Sending you all of my strength and caring thoughts..

Bet Xx

[RhenDutchess123]

Welcome Emznc....you have been given some great advice from these people...i would also remind you to stay away from sodas and carbonated drinks...lots of water and i snack on celery sticks ...helps fill you up guilt free...best of luck and keep us posted...shelly