What would be the ideal CKD4 to CKD5 transition?

By Anna Bennett

Bill, Peter and I have been spurred to commentary by the article from Forbes. The three of us are in a good position to be critical, Peter is an MD with CKD5, Bill is a veteran of 20+ years living with CKD and I am a second generation PKD'er who was diagnosed at birth and encouraged to maintain optimum health all of my life.  We are the lucky ones.  Peter has the knowledge and experience to call out his peers, Bill has the education, knowledge and industry experience to chastise (or applaud) the industry as a whole when needed, and I have been preparing for renal failure my whole life.

In addition the the commentary/criticism of the past few days, I'd like to add something proactive, a dialyzor's former dialyzor's perspective on the optimum transition to CKD5.

I like to think that my CKD experience has been optimal, (a couple of bumps in the road - notwithstanding it has been a fairly smooth transition).  I'll use my journey as my blueprint of a successful transition to renal replacement.

Upon diagnosis, my family made sure that I was informed as to what was going on with my body.  I was seen quarterly and as needed by a board certified nephrologist.  When it was age appropriate, I was genetically counseled as the ramifications of my choices in life.  I was also given a solid renal education courtesy of the NKF.  I also had a front row seat to my mother's transition from CKD4 to death (due to co-morbidities, she was not a candidate for transplant or dialysis).

Good medical care, education, the encouragement to live as "normal"/active life as possible, coupled with the life and death of my mother as a roadmap to the ravages of PKD - well that prepared me to live my life to its fullest and then, when my GFR declined to <25%, more intense medical care was in order.

This medical care included: following a low protein renal diet (or at least trying to), maintaining optimum blood work by supplementing, medicating co-morbidities (elevated PTH, low CO2, anemia) and testing monthly.  Early creation of dialysis access - in my case an A/V fistula, 18 months before commencing dialysis then listing with UNOS when my GFR hit 20%.

I also chose a job that has solid insurance.  That is a great benefit of early diagnosis, I had the luxury of preparation:  Emotional, financial and physical. 

When dialysis was finally inevitable - I had to cancel a vacation, and it infuriated me.  But the time had come.  Even though I was prepared for in center dialysis, I was not prepared for over staffing and simple errors.  (challenging my dry weight  - when I was still urinating, infiltrations by under trained staff, treating me like a number in a chair rather than a unique person)  I was surviving on dialysis, but I was so unhappy and so unhealthy.  A lot like many of my peers in CKD5.  I was also told that it would not be an option to do Home Dialysis (even though this was my first choice) because at this time in my life, I live alone.  After six months, my Nephrologist of seven years (the medical director of my unit) respected me enough, and was sympathetic to my plight, signed off on me training to dialyze alone at home on NxStage.  There was no looking back.

Suddenly, armed with my NxStage Machine, running 120 liters each week over 5 runs, I had my life and health back.  I felt empowered, energetic and that there was a future.  Of course, this is a case of the Halo Effect in action, as I had Bill's solo dialysis example to guide me, and the support of others on the same CKD journey when I joined IHD.

Then, 3.5 years after I was listed with UNOS, I was transplanted with a deceased donor kidney.  It is still early days yet with my transplant (day 26) but, if things keep progressing as they are, it is a resounding success.

So, in summary - what is my take on the ideal transition from CKD4 - CKD5? 

• Diagnose
• Educate (working with a nephrologist who you trust and respects you)
• Medically manage
• Follow optimum dietary guidelines
• Choose renal replacement modality
• If transplant is an option, list/test early
• Create access

Finally, you wait.  And while you are waiting, join some support groups, engage your family and friends, and most important live your life.  CKD is not a death sentence - it is scary and life altering, and you'll face some serious challenges, but you can go on to live and love and be an active member of society.

Comments

[Joel Topf]

What a great view of CKD care. I love the information on dialysis care. You have made me regular reader of this website. Keep up the good work.

[S. kennedy]

today I did find out that I have ckd4. Reading this page has helped to put me a little at ease thank you so very much
I am 40 years old and had Type 1 Diabetes for 33years

[Anna Bennett]

Dealing with the shock of a CKD diagnosis can unhinge someone. But after dealing with that initial blow, it is WONDERFUL to know that there are resources right here at our fingertips. I was very lucky to find www.Ihatedialysis.com/forum for peer support when I first started dialysis. And even luckier to find MEI's www.kidneyschool.org for a good, interactive, at home, at your own pace to educate yourself about Kidney Disease.

And then Bill came along and started DSEN. I encourage everyone, once they have come to terms with their health and their treatment (you always MUST take care of yourself first) to then try advocacy if you are up to it. Bill and Peter have set the bar rather high at DSEN, but advocacy could also just be letting your friends and family know that you are living, and planning on surviving with CKD (see the big list of CKD related blogs on the menu to the top right for many people who are doing just that). CKD is NOT a death sentence. You do need to drastically modify your life, it isn't easy and it can be a Herculean struggle, but that is where education and peer support comes in.

You are simply keystrokes away from connecting with people who know what you are struggling with intimately. And even if you don't want to interact, you can simply and anonymously read their stories over at IHD. That is what I did before I jumped in and started posting.

This is why I started writing about my CKD so publicly, because others went before me, and I had what they shared to shine light upon my sometimes rather dark path. I am just trying to pay it forward.