Follow-up to post re: communication with yo... - Kidney Disease

Kidney Disease

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Follow-up to post re: communication with your primary care team

EchoMax1012 profile image

As you may recall, a few days ago I wrote a post expressing concern as to whether people were making medical changes without consulting with their care team. It was never my intention to cause a negative reaction from others...what I have learned from many of your posts are: you have very limited time with your nephrologist (ie 10 minutes); your nephrologist has no interest in alternative treatments and/or doesn't know much about them; and in general communication is not satisfying in a number of ways with the team. These were all a surprise to me. I had assumed you had better access to the team, and your nephrologist would be up-to-speed and knowledgeable (or at least interested) about all options for CKD a donor, I had a different type of experience, where each step along the way, I was thoroughly prepared for the next steps. It is disappointing to find out that this is not the case for potential recipients.

17 Replies
Bet117 profile image
Bet117NKF Ambassador

Depends on the person and the physician that they select as not all of them are stellar, communicative and patient oriented.

I believe in a second opinion or search for a new doctor if that is the case.

There are options out there and it is key to be your own advocate!

Thanks for contributing!

I do suspect that physicians treat fellow physicians who are patients differently than they do patients without medical training. That is, in many ways, unfortunate. I have found that the more I know and understand about my medical condition, the better my appointments go. However, I do expect my doctors to help me understand my medical data, what it means, what I can do to effectively manage my medical condition when I'm at home, and so forth. Doctors who aren't willing to do this don't get to be members of my medical team.

To be clear, I don't throw a fit or make unpleasant comments. I simply vote with my feet. I go to another doctor. Like any other profession, there are good doctors and poor doctors as well as many who fall in the middle and are merely adequate. I find and work with those that fall in the "good" category.

However, just finding a solid set of physicians to serve on my medical team is just the first step in the process. I certainly need to do my part, i.e., follow their treatment plan, let them know how it is working, share information about any symptoms I'm experiencing, etc.

In addition to the aforementioned I also need to put a lot of time and effort into seeing to it that my physicians are actually aware of what each is doing. It surprises me how few physicians actually take time to get information from one another. I've got one physician who reaches out, with my permission and appropriate signatures, to my other physicians a few times a year. I have to specifically request that the others do this. Even making this overt request, it frequently just doesn't happen.

Consequently, I make a point to share labs from one physician's office with other physicians. And, when I was feeling particularly poorly about 5 years ago, I was experiencing a host of symptoms, I finally went to the extreme of creating a "graphic organizer" showing the symptoms I was consistently presenting.

Graphic organizers are something we use with students with disabilities. They are a visual representation of complex topics, or topics children with disabilities find complex such as the relationship between the three branches of our federal government. The graphic organizer provides a visual representation of the topic.

So, my symptom graphic organizer was an outline of the human body, neither male nor female, just an outline of a body. I then listed the numerous symptoms I was experiencing on a regular basis in the right margin of the page with lines going from the symptom to the part of the body effected by the symptom. This looked like the diagrams we have biology students create to document what they have found when dissecting a frog, for instance.

I then coded the symptoms. The code identified symptoms that were worsening, those that were showing no change, those that were decreasing, and I had a code for those that were resolved. (I used the later code as we made progress with treating all of these symptoms.)

I then had a set of questions I asked each doctor:

1. Are there any symptoms on this list you think are likely NOT due to the condition for which you are treating me, e.g., CKD?

I crossed out the symptoms that doctor did not think were relevant to what he or she was treating.

2 Are there any symptoms you think are MOST LIKELY due to the condition for which you are treating me?

I highlighted these in bold.

3. I then asked whether the remaining symptoms might be due to the condition for which that doctor was treating me . . .

I left those symptoms alone.

4. I then asked whether there was anything we could do to treat any or all of the symptoms I was presenting that were most likely related to the condition for which the doctor was treating me.

We then began focusing on those symptoms.

I took this graphic organizer through all my doctors' appointments. After dong this, I had identified who would be working on what. I also documented what each would be doing to treat various symptoms.

As I went back through my doctors for the next visit I first shared what the other doctors on my team were treating, etc. I also began coding the symptoms each was addressing using my coding system:

Symptom resolved

Symptom improving

No change in symptom

Symptom deteriorating

New Symptom

I provided data to support my coding system.

This graphic organizer paired with lab data across all doctors' offices and my own data from home did the trick. It got all my doctors actually working together as a team, finally. And, it seemed to give them the visual representation of what I was experiencing they needed to begin more effectively problem-solving through all of my symptoms.

Two years later I was feeling and functioning much better. And, when everything was addressed, it turned out that quite a lot of what I had been experiencing was first not a major medical problem and second easily treated. My medical team had been both overwhelmed with the host of symptoms I was presenting and, because they weren't working together, unable to get a handle on the situation.

They were each decent doctors in their own right; but they truly needed to work together. My sense is that many of us participating in this forum are experiencing some variation of this same sort of problem. This is a problem with the medical system itself and the way it is set up. When we aren't feeling well this can be particularly difficult to navigate effectively.


What a great and thorough post, Jayhawker. There are many excellent points and pointers which I hope people will take advantage of--I'm sure your effort in creating this post will be helpful to many!!!

in reply to Jayhawker

Excellent. I wanted to share with you and others something else I do. In your fourth paragraph, you mentioned getting physicians to share your information with each other.

At each appointment, when I submit an updated medication list, I also submit a list of all of my physicians. It includes their name, specialty, address, phone, and fax. I also sign and date each sheet at the bottom giving the physician permission to share any information with any other physician on the list. They all do this or delegate it to their staff to send the information. It saves me from copying labs or diagnostic tests and allows them to send it directly to my other caregivers.

The ones that really take advantage of this are the PCP, nephrologist, cardiologist, retinal specialist, and urologist and most recently the surgeon.

Jayhawker profile image
Jayhawker in reply to

This is an excellent suggestion as well. I've done something pretty similar. It's surprising how many doctors just won't follow-up even with my explicit request that they do so and my signatures allowing them to do so . . .

I know they are busy, but this really is a part of their job. You have also mentioned in previous posts getting your medical team to participate in a conference call whether they are all on the phone together. Do you end up paying for an appointment with each one of them when you do this? I'd love to hear a little more about how you get this to happen . . .


in reply to Jayhawker

Almost all of my physicians, while not physically in the same location, are affiliated with the same hospital and its major clinic. I asked if this was possible and how I would go about it. It was done at the close of business and the major members of my Care Team were on the call. Mostly physicians and there were a couple of nurses who sat in for the doctors. It was set up so that I could ask for their support in coordinating my healthcare and be receptive to provide me with their best medical advice and accepting my decision. They were not obligated to do this and it wasn't going to be a regular thing.

One other thing I've come to find out. Tele-Med is gaining more acceptance and the physicians who provide this service, especially in rural areas, can join in the conversation with a patient to help coordinate care when advised. From what I'm told their offices will coordinate the time. My former nephrologist was a strong believer in Tele-Med and since he has moved on, I have no other physicians who currently use this option.

Jayhawker profile image
Jayhawker in reply to

Thanks for sharing this! Tele-Med is definitely becoming more common in my part of the nation. I’m fact my medical insurance through work is now strongly promoting it fas an option they cover. All my doctors but one are with the same medical organization. I’ll explore the first option you shared with them.


KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to

YES!Something I have always done as well. Some physicians like my PCP, I will hand carry copy of recent monthly labs from dialysis clinic to my appointment with him. He loves to see them and adds them to my chart which streamlines and facilitates thorough care without having to duplicate blood work. Been doing this for about 15 years. Is most beneficial for ME in the end. Blessings

horsie63 profile image
horsie63 in reply to KidneyCoach

I'm in a rural area...the closest lab I use is not the one at the neph's as it's an hour away, so I print my labs, pdf them and send them to the office a week in advance. I have a hard copy, a computer copy, and all the lab results in several places....just in case.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Jayhawker

Holy smokes Jayhawker, you are the most organized person ever. Amazing.

Yes, my mother used to say that I was the child who was organizing the family while still in uterine🐶

Like anything else, this can be both a blessing and a curse, so to speak..,


Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Jayhawker

I have to laugh because I am sort of the same way, but not to your extent. I bow to the Master :)


Bet117 profile image
Bet117NKF Ambassador in reply to Bassetmommer

I bow with you. My mother told me that I was the most organized in the house as well!

Best to both of you.


KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Jayhawker

Well done and well said. Agree 100% and my experiences have been similar in empowering myself through personal education and proactive involvement in self managing my own care. This is crucial to me. Blessings

lowraind profile image
lowraind in reply to Jayhawker

What a wonderful way of dealing with this. About four months ago, I told my pcp that I either needed another appointment with her, or, I needed a referral to a pain management specialist. Well, from the pain management specialist (who has helped with leg pain so intense that I felt I could not put weight on them), to a rheumatologist (who sent me to occupational therapy for wrist and hand pain in my left wrist and hand, and who ultimately diagnosed me with lupus), to an orthopedic surgeon (who sent me to physical therapy for right shoulder pain), finally, all of this time later, I feel that I am functioning more or less like a "normal" human being (whatever that means). Anyway, at each appointment, I am given a picture of front and back of the human body, and told to indicate where the pain is and then rate it from 1-10.

With your plan and Mr. Kidney's ideas, I now can see a better way of indicating, on an ongoing basis, what is happening to and inside of my body. I have had a spinal nerve block, am on Plaquenil to protect my body systems, and have exercises for shoulder and wrist/hand. I can now log changes as they occur and journal what is happening.

Thank you both!


Jayhawker profile image
Jayhawker in reply to lowraind

You’ve definitely got a lot of doctors to organize and coordinate!


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