Chronic Kidney Disease (CKD): How do I stop progression?

@cldmeyers I have a gray bag that is carried to my appointments. There are folders for:
1. Biopsies/reports/procedures
2. Lab results
3. Individuals Dr's and notes from their offices
4. Miscellaneous
In the first 2 folders, everything is in chronological order, newest on top, with ordering dr's name highlighted on header. There is a hand-written index in those 2 folder, so I know what is where.

Many is the time a Dr has asked a question and I can pull out a report for reference. No way I will trust myself to remember everything!
Ginger

@gingerw Got heavy duty tests coming up and long discussions about what's to be done. Forgive my ignorance, but how does one get copies of all that stuff?

@cldmeyers,@gingerw,@trishanna, Cld, you raise an excellent question! With age and more diagnosed maladies it has become harder for me to keep a handle on all that is happening medically.

Ginger gets 5 stars for her organization and detailed info that she has on hand at her appts !!!

Because all of my docs spend very limited time with patients, this is what I do: I created a spreadsheet by hand on paper for my kidney and cbc lab reports. Top line going across page are dates. Underneath that on the left, I list the primary values I need to track...gfr, potassium, A1c, cholesterol scores, etc. On a separate sheet, I list Doc/ the specialty and date of last visit...this a running list in a steno lined notebook; A third page is list of meds, both prescribed and otc and who prescribed them. The 4th item and hardest for me is to keep a running list of questions that occur between appts and that I have for a specific doc for the next appt. I see most every 6 mos.

This one is hardest because before each appt., I go through that question or new issue list and try to reduce my concerns to the top 2-3 because I've learned that asking more has resulted in scolding from some docs. Unlike some very fortunate members here who have a "team" of docs who interact with each other and the patient, each of mine works very independently and is strictly focused on their own specialty. At my annual exam with my primary doc, I do update her on new developments, procedures, meds from others.

With my ckd diagnosis, I began insisting on receiving copies of all my lab reports and then researched how to read them by going to the kidneyschool.org site. Turns out I'd been at stage 3 ckd for some time, with no mention or caution ever by my primary, before receiving a scan report for another matter which mentioned I had kidney disease. That was when I asked pcp for the referral to a nephrologist.

At age 77 and with an increasing number of chronic health conditions plus not remembering what I had for breakfast the day before, keeping up with this is almost full time job. lol

Best to us all as we learn more than we ever could have anticipated about how much effort is required to stay at our healthy best!

@cldmeyers I have a gray bag that is carried to my appointments. There are folders for:
1. Biopsies/reports/procedures
2. Lab results
3. Individuals Dr's and notes from their offices
4. Miscellaneous
In the first 2 folders, everything is in chronological order, newest on top, with ordering dr's name highlighted on header. There is a hand-written index in those 2 folder, so I know what is where.

Many is the time a Dr has asked a question and I can pull out a report for reference. No way I will trust myself to remember everything!
Ginger

@cldmeyers,@gingerw,@trishanna, Cld, you raise an excellent question! With age and more diagnosed maladies it has become harder for me to keep a handle on all that is happening medically.

Ginger gets 5 stars for her organization and detailed info that she has on hand at her appts !!!

Because all of my docs spend very limited time with patients, this is what I do: I created a spreadsheet by hand on paper for my kidney and cbc lab reports. Top line going across page are dates. Underneath that on the left, I list the primary values I need to track...gfr, potassium, A1c, cholesterol scores, etc. On a separate sheet, I list Doc/ the specialty and date of last visit...this a running list in a steno lined notebook; A third page is list of meds, both prescribed and otc and who prescribed them. The 4th item and hardest for me is to keep a running list of questions that occur between appts and that I have for a specific doc for the next appt. I see most every 6 mos.

This one is hardest because before each appt., I go through that question or new issue list and try to reduce my concerns to the top 2-3 because I've learned that asking more has resulted in scolding from some docs. Unlike some very fortunate members here who have a "team" of docs who interact with each other and the patient, each of mine works very independently and is strictly focused on their own specialty. At my annual exam with my primary doc, I do update her on new developments, procedures, meds from others.

With my ckd diagnosis, I began insisting on receiving copies of all my lab reports and then researched how to read them by going to the kidneyschool.org site. Turns out I'd been at stage 3 ckd for some time, with no mention or caution ever by my primary, before receiving a scan report for another matter which mentioned I had kidney disease. That was when I asked pcp for the referral to a nephrologist.

At age 77 and with an increasing number of chronic health conditions plus not remembering what I had for breakfast the day before, keeping up with this is almost full time job. lol

Best to us all as we learn more than we ever could have anticipated about how much effort is required to stay at our healthy best!

I feel very fortunate that I am a part of the Intermountain Healthcare system in Utah. It consists of hospitals, clinics, pharmacies, insurance including Medicare Advantage, labs, therapy, etc.

I have the ability to log into the “My Health” App to see visit summaries written after each visit, lab results, test results, usually available that day or the next, depending on the time of visit. I am privy to graphs showing all trends, like GFR, Thyroid, weight, etc. It also reminds me automatically of appts. I am even able to send a message to my MD, Audiologist, Nutritionist, Physical Therapist, Nephrologist, with an answer that very day. Any MD within this vast system can easily pull up any of my info within seconds.

Sorry if I sound like a commercial, but just wanted to share my amazement and delight of the system I belong to.

I feel very fortunate that I am a part of the Intermountain Healthcare system in Utah. It consists of hospitals, clinics, pharmacies, insurance including Medicare Advantage, labs, therapy, etc.

I have the ability to log into the “My Health” App to see visit summaries written after each visit, lab results, test results, usually available that day or the next, depending on the time of visit. I am privy to graphs showing all trends, like GFR, Thyroid, weight, etc. It also reminds me automatically of appts. I am even able to send a message to my MD, Audiologist, Nutritionist, Physical Therapist, Nephrologist, with an answer that very day. Any MD within this vast system can easily pull up any of my info within seconds.

Sorry if I sound like a commercial, but just wanted to share my amazement and delight of the system I belong to.

I have had stage 5 CKD for 3 years now. Mine is the result of atypical hemolytic uremic syndrome. The aHUS was a reaction to the chemo I received for pancreatic cancer. Once the aHUS was cured, I have not had any further deterioration of my kidneys. I am not yet on dialysis, but my nephrologist keeps telling me I may need to start at any time. I was at Mayo in June. Still cancer free after 3 1/2 years. Started talking about a kidney transplant. I can start the testing process, but I can't have a transplant until I am cancer free for five years.