ckd, young need other people’s experiences and perspectives

[Yogi8716]

I’ve been living with stage 3 ckd no cause given to me since 2019, high anxiety, high blood pressure in addition. Currently 34 and feel like I’ve been alone in this journey. My wife, my family and her family beyond supportive. How have others faired with this?

[Bassetmommer NKF Ambassador]

Dear Yogi,It's all about the attitude. And taking charge of your health. Being empowered means taking the time to become educated, work with your healthcare team, get your family on board and commitment to a healthy lifestyle. These things are within you control. Take it in steps.

First of all, high blood pressure is a major cause of CKD. So, you need to work with your healthcare team to get that under control. Diet, exercise and less stress will all make a big difference.

Being anxious over CKD is fruitless energy. Acceptance if the first step. Next is finding out what you can do to improve or at least stabilize the numbers. Again, education can come in the form of reading, looking on the internet or even getting a peer mentor. Starting with the National Kidney Foundation is a good starting point. Read through some of the past postings on this site is also a great idea.

There is no getting around this: It's your life. At stage 3, you are going to find there is little or no medical intervention for CKD. It will be up to you to find out what is going on physically with you to cause the high blood pressure. Have your medications checked. Read about renal diets and then see a renal dietician.

Just so you know, many...MANY of us were in your shoes. I was stage 3 for over ten years but because I did not know any better, and had kidney stones for three years, it did go to stage 4 and actually stage 5 at one point. I became educated, changed my diet, have an exercise program and take care of myself and I have stayed at stage four for over four years now. I feel fine. Actually better than I did four years ago. I have more energy, no symptoms like edema and have a great busy life.

Ask questions. We are here to support you.

[orangecity41 NKF Ambassador]

I was diagnosed at CKD 3b 5 years ago and my GP put me on appropriate diet and it slowed down progression. I also changed my exercise routine. I agree with Bassetmommer that generally at level 3 there is not intervention. I learned that have to be proactive for yourself. Maybe ask your Doctor for referral to a renal dietitian about a CKD diet.

[S_dillow]

Hanging on for the ride.i take it one day at a time.

[PoodleTheaterFan22]

I'm in a similar situation. Also relatively young (29 year old male here). I see my nephrologist every 3-6 months for blood work and 24 hour urine testing. Assuming all is okay during each visit I am fine for a few months mentally. I definitely get it though...anxiety before and after appointments.

I'd recommend advocating for yourself. I asked my doctor about Farxiga to prevent my CKD progressing and she was okay with me trying it due to the data. Definitely do your research and have an open relationship with your neph.

[RoxanneKidney]

You have to get your BP down low. Did they check your urine for protein? That's important and they don't always do that. Get on a plant based diet continue to workout. Be as active bad possible then hope you don't die crossing the road or something. Cut salt too. The standard American diet is full of processed crap.

[Okiksaints1955]

I was also in my early 30's when I was diagnosed. I am now 67 and had my transplant last year. Never went to dialysis. So it is a very long journey (more than half my lifetime) with lots of highs and lows. Be prepared to faced them head on.

1. My outlook with CKD is that I have to be strong. And I cannot make this diagnosis the center of my life. I had the same attitude with my family. They cannot see me suffering and they must lead a normal life. I must too, even with the restrictions and disturbances (change lifestyle, diet, meds, etc)

They knew I had CKD but with the way I positively approached it, they did not "suffer with me". What's the point?

2. I assembled a very good Nephrologist and his circle of good specialists (cardio, gastro, internal, etc.) They are my partner in this journey (not my family). They are the impartial and objective people who gives me the right advise and options - so I can make the right decision.

Granted it took me 20 years to find the right medical team (and 7 changes). But I am persistent (and lucky) to keep looking . (I also have OCD and I used it to my advantage)

3. I enjoyed life, whatever it gives me - CKD was just a distraction. It did not run my life - and still not.

You can read some of my previous post and replies to have a gist of my journey.

Take care, be well and hope this helps.

[userotc]

My mum (stage 3) has relied on support from dad and me so far. She has a urologist who referred in a nephrologist but the nephro has limited his "support" to staying "carry on with what you're doing" at every consultation following tests. Her GP does testing only.

Along the way, we've reduced her high blood pressure to normal and improved serum kidney markers eg egfr >doubled.

Our current challenge is reducing her proteinuria which we are trying to resolve by further dietary changes focused initially on glucose reduction. We've also received support on this forum eg lower protein if/when required.

The use of "medical teams" seems to vary on this forum from abysmal to excellent.

[Yogi8716]

Thanks everyone so far. Really amazing to hear your different journeys and that it’s a long road but with long possible lifespans ahead. I’m working also with a psychotherapist to help me because with a change of medicine and my anxiety the blood pressure has been all over whether I’m anxious or relaxed so going to try and get back to being as relaxed as possible as frequently as I can.

[KidneyCoach NKF Ambassador]

I was 21 when diagnosed. Went through so many kidney infections, stones and cyst ruptures. Kept dialysis at bay until age 43. On dialysis for 20 years. It's a lifestyle change.

[JackieJ_NKF Partner]

Welcome to the National Kidney Foundation’s communities and thank you for joining!

[WYOAnne NKF Ambassador]

Welcome to our group! As Bassetmommer said it is all up to you. Education about kidney disease is POWER! Health care physicians take you more seriously the more you know and the more intelligent questions you ask. At Stage 3, a lot of docs don't take it seriously. But now is your chance to take control of your life.

The one thing that I have learned in my own "kidney journey" is you do have to be your own advocate! No one else will do it for you.

You need to get control of your high BP! Get on the right medication NOW. I have had a transplant and have to get an ECHO every year. There is scarring in my heart due to high BP during my years of CKD according to my cardiologist. So, not only does high BP damage your kidneys but you can pay for it later in life with heart issues.

I would suggest you go to davita.com and sign up for their "kidney class." It is a good place to start. Also go to the NKF site kidney.org It is a great place to learn a lot about your kidneys. Helps a lot to know what is going on with your own CKD. They also have diet suggestions. Look at the "support" section - beside HealthUnlocked there is a Peer Mentor program that may help you.

I am now 22 years post transplant. I was diagnosed with FSGS in 1992. It was related to strep throat I had at age 9. I then was in the hospital a couple months later with nephritis. Some 30 years later I was in kidney failure. I was put on the transplant list in 1998 and a transplant in 1999. My life now is fantastic! I was able to see both of my daughters marry, now I have grandsons, my husband and I travel and a few years ago we moved to Wyoming. I love the mountains and spend as much time as I can walking on trails.

Do your own research and then let us know how you are doing. Make the appt. with your PCP and get your BP under good control. It is vital for your kidney health and your heart!

[Hawaiilover in reply to WYOAnne]

What a wonderful story. Hearing success stories of transplant and longevity afterwards gives me hope. I'm 58 yrs old & I was diagnosed with CKD about 12 yrs ago with GFR slowly declining. Now have GFR 13 and recently approved for Kidney Transplant & on the wait-list. When diagnosed I was so down, depressed & anxious saying why me? So many are worse than me so I am grateful and try to look for positives instead of the negatives. This site and reading everyone's stories helps me to prepare for what's ahead and is encouraging. I know the journey ahead will get harder for me but so grateful for this site.

[Chimama]

I can relate my Drs never told me I had kidney disease. It’s only until they started putting blood tests etc online. I was in shock to see that I had been up and down from 3a-3-b. I’ve had so many tests that took the damaging nuclear iodine and mine started in 2009. Ive taken meds and ate totally wrong. I had to keep on my Drs to refer me to a dietitian and nephrologist. You can live with it for many years before you can have significant signs etc. Stay on top of your Labs.

[ILMA54]

I was first diagnosed when i was 30 as part of a routine physical where my creatinine was 1.5. Two years later, i had moved cities and had a heart to heart with by primary doc about getting on BP meds to save my kidney function. I also started the 2X/year visits to a nephrologist.

Long story short, it was 24 years from initial diagnosis to Stage 5 disease and getting on the kidney transplant list, and another 21 months until I got my transplant last July.

I was spared many of the issues others talk about. I never had to do dialysis (largely due to a proactive nephrologist who got me on the transplant early before I would need dialysis). I never had swelling or the metallic taste in your mouth that often occurs when GFR drops below 10 (11 was my lowest). Up until my transplant, I swam 45 minutes three to four times per week.

Building on what others have said, here is my “packing list” for the journey - in no particular order

1) Get your BP under control and keep it that way.

My GFR was stable in the 20s for over a decade. There was a period of about 9 months where my BP was not well managed as we searched for new meds. That is when I moved into Stage 4 and Stage 5.

2) Take your other meds and follow the advice of your doctor

With the caveat that you have to educate yourself on this disease and learn what questions to ask and when to push back. I am an engineer by training, and I view my body as essentially being a system of systems. It is usually straightforward for me to understand the causes and effects. When something doesn’t add up, I raise questions until I understand.

3) Educate yourself about kidney disease so you can anticipate, not plan out, the arc of the journey.

4) In what may seem contrary to #3, take it one day at a time

My journey from transplant to diagnosis lasted approximately 10,000 days. Over that time frame, my wife and I welcomed our youngest son into the world and saw him graduate college. I switched jobs 3X, with each switch requiring a move. I contracted an autoimmune disease that manifested itself as blisters all over my body, and I buried both my parents.

I mention this last point because the reality is that managing your kidney disease is only one aspect of your life. If you choose to make it the sole focus of your life, you will end missing out an amazing life, including the chance to experience joy and grief. As Ecclesiastes says, there is a time for everything.

When I started this journey, I assumed that my kidney (I only had one pre-transplant) would slowly degrade but that I would die before needing dialysis or other measures. In 2008, during a routine exam with my nephrologist when my GFR was in the 20s, the doctor informed me that within 5-10 years, I would be on dialysis. That was such a shock. I had never considered this possibility.

Jump ahead 10 years to 2018 when I went into stage 5 CFD. The process of getting worked up for the transplant brought home the stark reality once again that I would need a transplant.

If you were to ask me whether I would have wanted to know all of that information up front (In 27 years, you will need a kidney transplant), I would not have wanted to know that. I would have spent too long obsessing about something I was not able fully control.

Having been on the transplant list from October 2018 to July 2021, and knowing that it would likely be 2-3 years from the time I got on the transplant list to transplant, it was not until a month before I got call that it fully occurred to me that I was going to get a transplant (by the end of the year). Little did I know it would be one more month.

In closing, and without trying to be preachy, I believe God reveals what I need to know when I need to know it. At least that has been my experience. While there will be some sad and shocking days, it has been an amazing journey. Like you, I had a lot of family support. I got connected with this amazing community, and I got to work with an amazing team of doctors who helped me navigate this journey and get a new lease on life.