Help

[aowens]

I just recently found out that I have Stage 4 kidney disease with 25% function. I will need dialysis and transplant very soon. I am very scared and unsure of what option to choose for dialysis. I am 28 and I feel like I have missed out on so much already and I feel like dialysis will be even more of a hindrance and disruption. Can anyone just provide some advice?

[SN23]

Hello Aowens,

I totally get how that must feel. My son was also 28 years old when he found out that he was in stage 4 after an acute event when his blood pressure shot up and he ended up in the ER. However, with diet changes ( no salt, red meat, processed food, colas or alcohol etc) and regular exercise as well as blood pressure medication he was able to gradually improve to stage 3. During the three years he has occasionally faced drops in EGFR but by reviewing/changing medications, and keeping himself hyderated and with a largely plant based diet (with occasional eggs and fish) he has been able to manage to bring it up and do all the things that he wants to continue to do. So do not loose hope while dialysis is an important option, you can make lifestyle changes if you have not already done so and work with a renal dietician to preserve and to improve.

While I do not know about your specific condition (my son has IGAN) I wanted to share this to let you know that it is possible to stabilize and even improve. I pray that you get the right guidance and support that you so deserve. Please talk to your nephrologist regarding your options and for a referral to a renal dietician. You can in the meanwhile also check out Davita.com. Of course modifying their recipes based on your labs and preferences.

All the very best to you,

[aowens in reply to SN23]

Thank you so much!!

[SN23 in reply to aowens]

You are in my prayers🙏

[Hidden]

Hello my friend. I lived with kidney disease my entire life. I have been on hemodialysis and peritoneal. I have had two transplants. I had my first when I was seven and my second last year and I am now thirty-five. I lived through my entire twenties on dialysis.

I agree with everything SN23 said. You can take control of your health and possibly improve your kidney function through diet and exercise. Maybe you will be responsive to medication so that diet changes and medication will be all you ever need. Ask about a renal dietitian and look for some diet and lifestyle information on the National Kidney Foundation website.

If you do ever have to start dialysis and be listed for a kidney transplant, dialysis will be much easier on your body and mind if you are taking care of yourself with a good diet and exercise to begin with.

If you do ever face dialysis I highly recommend peritoneal rather than hemo if you are more independent and want to take care of yourself. I was able to attend and graduate university then work a full time job while dialyzing every night at home. I spent three years on hemo and I have some war stories about going to the center three days a week.

Check out this guys YouTube channel for some inspiration to exercise and take control of your life and health:

youtube.com/channel/UCjHbYG...

[aowens in reply to Hidden]

Thank you!!

[cmaxwell78 in reply to Hidden]

Love Renal Warrior! Great share!

[YollyD_NKF]

The PEERS Program is a national, telephone-based peer support program from the NKF that connects you with someone who has been there. For more information visit: kidney.org/patients/peers

[KidneyCoach NKF Ambassador]

Try homedialysiscentral.org they have a tool called My Life, My Choice to help you determine which dialysis will most fit your lifestyle. Try kidneyschool.org and lastly there is a new one at American Kidney Fund call KidneyCentral. kidneyfund.org/kidney-disea...

Blessings

[aowens in reply to KidneyCoach]

Thanks!

[lincoln53 NKF Peer Mentor NKF Ambassador]

Hang in there, Aowens! I did peritoneal dialysis for 4 years and worked 30 hours a week. I then got a kidney transplant, which has lasted for 9 years but now is failing. I started hemodialysis 3 months ago. I decided on in-center hemodialysis rather than going back on peritoneal dialysis because the daily treatments and equipment and supplies are a constant responsibility and concern. I am choosing hemodialysis this time around because I would like to have a professional looking after my treatment. And I enjoy having 4 hours to read, do puzzles on my computer, and watch movies on my tablet. The advantage to peritoneal dialysis is that you are constantly dialyzing, so the fluid and wastes are always kept under control. With in-center hemodialysis, you must go 2 or 3 days between treatments, so you have to be careful that you don't gain too much fluid. And you have to be mindful of things like potassium and phosphorus. But, so far, that hasn't been a problem for me. I am doing well on hemodialysis.

I guess my point is that you don't need to be scared of dialysis. The treatments have greatly improved over the years. I occasionally hear kidney patients complain about the treatment they receive at dialysis centers, but my experience so far has been very positive.

[aowens in reply to lincoln53]

Thank you!

[Hidden]

Talk to staff at your renal unit. Tell them of your concerns. I visited the dialysis unit a few times and discussed matters as being petrified is normal for the first months of dialysis is normal. Your unit will run special clinics to show you your options and give you plenty of books leaflets and help. Theres a lot of patients online and facebook groups who are also willing to help. Talk everything carefully over with close family as dialysis can have an impact on them no matter which method. In my experience

Capd and apd need relatives to get you to your hospital pronto in infection cases and the risk is high. If you have a relative that could learn the processes perhaps you may consider home machine dialysis which offers massive benefits or just doing some of the process at your unit to help both get through it. My partner does some of my dialysis for me and is like me a patient rep. Our unit live most is more like a weird coffee club as we all know each other on first name terms chat a bit and share hobbies and histories.

Some units run evenings where those approaching dialysis can meet patients on the dialysis systems to help you choose. In my case I couldnt choose as ive had a lot of infections so that ruled out capd much to my annoyance. It is possible to change systems or you may need to but doing so will mean surgery.

The dialysis systems are interesting and are well worth learning about. Its also an ice breaker to get to know staff. They are used to showing people and demonstrating what goes on. I did and found it a lot less daunting even though my mother had at that point spent over 25 years on it and I had a knowledge of the issues and seen my mother many times on machines and capd. All of the staff are friendly at units and you get to know them more as friends. We discuss all sorts of issues and have quizzes ,chat and help both staff and patients through each others problems.

Whatever you choose its vital you get the surgery done well before you need it. Mine was done but was barely done in time as my kidneys went well before predicted time and I narrowly escaped further emergency surgery as a result. My fistula was barely formed and nurses had a few continuing issues as a result but these do disappear. The first couple of months are tough but you will get a lot of support and they will get to know what works for you as humans differ. Units in the uk have renal psychologists to help with stress, phobias and any other issues. Other countries are similar

So speak up. Every patient is scared and wants help.

Good luck

Mark