Here is a link for information on how to get ready for your Doctor appoint and tips on communicating. kidney.org/kidneydisease/co...
Communicating with your Doctor: Here is a... - Kidney Disease
Thanks for posting this. I’m heading in to have a “pleasantly firm” discussion with my nephrologist on Friday this week.
I’m really not looking forward to this appt but have got to address the chronic chaos and disorganization I’ve experienced with this practice as well as the recent vitamin D toxicity that I believe evolved primarily because no one was really overseeing my case.
Ugh; I hate stuff like this!
Hope your appt turns out good. Keep us posted. I take Vitamin D supplement and my GP monitors it.
It will all turn out positively, Jayhawker!
I will be with you in spirit!
Let me know how it goes!
Is there anyone who can go with you to give you strength? I have no problem with conflict or confrontation, not that I love it, but I know a lot of people do. Be prepared with your questions and concerns all laid out so you don't forget any. Insist he or she sit and listen and answer your questions. If you need to remind them what they are paid to do, in a soft and gentle manner of course. If you do not get the desired results I would suggest finding a new one if possible. Best wishes!
I’ve actually created a short written statement articulating the issues I’ve encountered. It ends with my requests to resolve these issues.
If we can’t get these issues resolved I’ll ask my PCP when I see her in Sept to refer me to a nephrologist with whom she works regularly, etc. She’s excellent. I definitely trust her judgement. I’ll let her know what is most important to me with renal care, eg, supporting PD dialysis options etc.; also the dialysis clinic with whom the nephrologist works need to be close to my house.
The pharmacy, the lab, and I have all been running into the same issues with this practice. Mine are the more pronounced because I’m the one under actual treatment... Thus my recent issue with Vitamin D toxicity...
But the fact that everyone trying to work with this practice finds it to be unresponsive and disorganized is telling. Thus I suspect I’ll be requesting a referral to a different nephrologist in early Sept. I’ve checked out the options in my area of the metro. But I’ve decided I’d like to go with my PCP’s recommendation this time.
I feel that your decisions are wise and will prove to be beneficial to both you and the team that will be working together to promote the best care possible for you.
You have my support and hope that you will let me know your plan.
Okey, I saw the nephrologist yesterday afternoon at 3:20pm. My recent renal panel shows I’ve still got toxicity. But it is at least low enough now to be measurable. I asked how much longer it would take to come down the rest of the way. He used a logarithm to guesstimate how high it had been. He then was very quiet for several seconds. When he spoke next he said that he would oversee my care directly from this point forward. He said the first half life of the medication has moved out of my system; the other half life of this medication will move out over the next 4 weeks.
He clarified that he has not changed his mind; he’s still planning on PD dialysis for me. I asked if this was recorded in my patient record. He showed me where it was recorded. He seemed surprised when I asked. After he shared what was in my records I said that the head nurse in their practice had said that I had to go get a fistula now because it takes 6 months to heal... I added that she and at least one of the nurse practitioners are apparently not reading my medical record before talking with me or they are reading it but feel they can override him...
I then said that I was experiencing some serious problems related to overall quality of care with their practice. I said that my pharmacist and the lab people were also experiencing similar issues although they were not dealing with toxicity as a result of these issues as I now am...
We talked about the problems with prescription reauthorization. We talked about the difficulty the practice seems to have getting lab orders to the lab and the nurse’s unwillingness to post my labs prior to my appointments which doesn’t allow me to prepare for the appointments. I ended saying that it had been both chaotic and disorganized. As is evident with the toxicity, it was also negatively impacting the provision of care for me.
I asked to set appointments for the next year now—standing appointments. Apparently their scheduling system only goes out for the next four months. I mentioned that the other practices I work with book out a year in advance including my first nephrologist’s office affiliated with Stormont Vail. I said, clearly your receptionists aren’t able to effectively handle the scheduling system this practice is using.
I also requested standing lab orders. That he was able to do. I told him that I realize I may not be able to make it to the transplant off dialysis but that my transplant nephrologist has encouraged me to try as that would be the best case scenario for the transplant. Of course, if I’m truly not feeling or functioning well or if it is becoming medically unadvisable for any reason; naturally I would start dialysis...
How did it end?
1. I’ll see him every 4 months.
2. I’ll see the nurse practitioner every 4 months. This is the nurse practitioner with whom I’ve had a better experience but is only working part time.
3. I have standing lab orders.
4. I’m still on track for PD dialysis, thank goodness.
5. He’s not sure I’ll make it to the transplant without dialysis but has agreed to set that goal.
6. I told him that I’d give this 6 months to calm down and establish appropriate care. However, if at that time I’m still experiencing what I’ve experienced to date, I’ll have no choice but to vote with my feet. He said that if I decided I needed another nephrologist he’d process a referral for me.
That is progress on your communicating with Doctor . I have a specialist who can only schedule every 4 months. I told admin staff member that was fine do every 4 months.
Thank you so much for letting us know what the outcome of your appointment was.
You were in my thoughts; better care, less distress and good health.
The senior staff that you met with really needed to hear what you had to say.
My late Mom's oncologist was Chief of Staff and encouraged us to alert him to any unprofessional or poor care administered; eg: drawing labs with ripped gloves. As much as he is on top of things, he was honest in saying that unless someone brings issues to his attention, that he may not
find out and set a rule about it; and he did.
The office staff is a representative of the practice; and do not belong displaying unkind or inappropriate behavior and directly communicate with the physicians that they work for.
Who needs nastiness and incompetence. You were dynamic!
Your head must be spinning, but I am so glad that you got some answers, direction and will soon feel better.
Hmm. Appointments ?You are making me think.
This neck of the woods....
The only appointment that my PCP 's office schedules a year in advance are annual physicals.
My specialists all go with 3 months or what is ordered.
My present nephrologist hands me a copy of the lab orders and also the containers needed prior to leaving the office.
" Metro disaster nephrologist" did put in standing lab orders when he was monitoring me during a treatment, but that is a specific instance of every 7- 10 days.
I try to remind doctors to put in lab orders before leaving the office.
Most importantly, you have a plan; and if not pleased - give them the boot!
Get some rest and do something nice for yourself.
Your communication at that appointment was a great model for so many members in the same position and don't know what to do.
Stay safe and please take care.
They’ve been trying, unsuccessfully, to schedule labs and appointments the way you mentioned. I’ll see how this 4 month scheduling system goes. I’m hoping it will work. I’m sure he’ll bring Molly, the nurse practitioner, up to speed. I just want this chaos and disorganization minimized. The unprofessionalism on the part of his personal nurse is absolutely unacceptable. I didn’t deal with that though. If needed I’ll deal with that later.
He was definitely surprised by my questions about him moving me to HD dialysis. Honestly, these nurses need to look at the patient’s records before talking with the patient. They can’t override the doctor’s prescription.
I’m truly glad the appointment is over. My BP was 159/92; that’s very high for me. The nurse commented. I simply said that I was not surprised because I was pretty stressed out.
It was clear from his body language after he calculated to guesstimate how high the toxicity had been that he wasn’t happy. My creatinine is noticeably worse than it had been prior to the toxicity. I’m truly hoping and praying that the toxicity hasn’t caused additional permanent kidney damage.
Well, I’m trying to focus on other stuff today. I have no idea whether I’ll be voting with my feet in 6 months or not. But both times I’ve seen this actual nephrologist I have had a good appointment as far as actual renal care goes. So I’m not sure I want to give up on him yet. I just need to see him more frequently, I think.
This practice has had a really good reputation. I mentioned that to him. But the experience I’ve had with them is not at all consistent with their reputation. They’ve had quite a few nephrologists retiring so they may be experiencing some issues related to that. Nevertheless, if they don’t get their acts back together, their reputation will change and likely not in a positive direction.
Well, I’m at least done with the appt. I’m extremely relieved that he isn’t doing a bait and switch regarding dialysis modality with me. I suspect dialysis is very near at this point. Possibly nearer than I realize if there is additional permanent damage from the toxicity.
For my part, I will not let them schedule me with anyone but Molly and this nephrologist rotating between the two every 2 months. The standing labs should solve that issue. Plus, since I’ll get them at the hospital the results will be posted in my patient portal at the hospital so I’ll be able to see them before my appointments. Then I’ll have to see how the medications prescription renewals go.
What an ordeal! Good grief! No wonder your BP was over the top!
Please think positive about the toxicity/ further damage to your kidneys and there of. Don't jump to the dialysis mode until the doctor tells you so!
If you hadn't pursued this situation and had it addressed it would be one thing, but you are on top of things. Think of how many people would just accept what these people say at face value.
The stress of this ordeal, the heat and unknown is enough to effect any test result.
As far as the NP not reading your records prior to meeting with you, totally unacceptable! Those labs should have at least been pulled up for a duel view and discussion.
As far as the other non professional; she needs to have her place and their expectations pointed out to her. One step at a time.
If you ever call and are told that you can't see Molly, ask to have the doctor call you or send him a note regarding this on the patient portal. You deserve to see those who you are comfortable and are familiar with your case.
I understand how having the patient portal readily available is indeed convenient and having a history with this practice. I use it myself.
Several of our metro hospitals have merged; yielding substantial personnel and policy changes. So I try to be patient; re-scheduling me for a doctor of their choice is unacceptable and understand re- vamping
If you want to get a second opinion just for the heck of it; you have that open door of choice.
Right now. .. Catch your breath and process all of this.
Know that I am always in your corner. Please feel free to reach out to me, be it here or via private message.
Sending you warm and good thoughts.
🙏 I will definitely go directly to him if I have more problems with scheduling.
I’m not sure what the training requirements for NPs are in MO. These NPs may be of lesser quality than I’ve experienced in Kansas simply because they have less training. Regardless, there is only one left in the practice who is decent. So it’s her only from this point forward. And I’ll insist that I see him every 4 months as well.
I’m not planning to jump to dialysis until he tells me it’s time. However, I need to prepare myself mentally so the transition will be easier for me. I’m an advanced planner🐶🐶
COVID has created so much more uncertainty for the medical community. It’s done the same for all of us actually. So I’ll do my part to make this work including helping them schedule me appropriately. But I want to try to balance this with empathy and support for the medical community in general as they continue to serve on the front line against COVID 19 even as so many of our citizens choose to violate CDC guidelines, etc, thereby placing medical personnel at such greater risk. And that doesn’t even touch how COVID is bankrupting and shutting down smaller hospitals...
However, I did not share any of my thoughts and concerns for medical personnel related to all of that yesterday. It was critical to stay focused on the issues at hand related to my care.
You are amazing and absolutely did the right thing regarding the COVID and where we go from here.
The entire situation is heart wrenching.
Like yourself, I have tried to be as empathetic as I can to medical personnel who are continuously walking on their hands caring for the sick, referring covid testing as well as having their practices turned upside down and vast amounts of safety precautions added in for themselves, the families that they go home to and acclimating their MA's to this.
We are the kind as we appreciate them and show compassion where possible. Besides sickness they listen to hostile people who lack consideration and the ability to be flexible even at the expense of their own health and safety.
It wears the good people out.
I have a telecommunication call which was changed several times due to problems on my PCP's end. As long as we speak and not delayed a month it is all good.
As far as personnel lacking credentials from one area to the next, I feel that it is who they hire and what rules and expectations the practice sets forth for them.
My brother for one has had to deal with poorly trained office personnel who called to specify an appointment without telling him their name and who they are setting the appointment with; cardiologist, podiatrist.
Yet, in the big metro hospitals I have delt with less articulate but highly professional folks who are on top of policy and helpful.
I think that it is all in what is tolerated.
Dialysis; of course I see your point about mental preparation, but right now it is out of your control. ( and that comes from the mistress of organization and planning) Stand strong in the knowledge that you are doing all that you can for yourself. You now have been seen by a competent nephrologist who is aware of the toxicity and doing what can be done to move you forward. You eat well, take medications as prescribed.
Hold tight to hope as until you hear the words, you are not there.
Being comfortable with your medical team, especially now is so vital to body, mind and soul.
You have been fabulous enough to bring issues to the doctors attention, not only for yourself but to benefit others.
A gift. You will make sure that error doesn't occur again.
Right now; take some time and relax- do things that you love to do and be good to yourself.
Stay strong and know that you are not alone.
Friends here are with you.
My BP has been back to normal since Saturday. I’m definitely feeling better otherwise. Yesterday was 5 weeks off the medication that caused the toxicity. Supposedly in three more weeks the toxicity should be gone. Hopefully I’ll be feeling totally back to normal by then. I’ll have labs again on Friday, Aug 14, 2020. That’s about half a week after the toxicity should be resolved.
In the meantime, I think I’ll plan another virtual vacation for Labor Day weekend. I took a virtual vacation to Germany over Memorial Day weekend. I may reach out to a firmer colkeague from the university of North Dakota. She’s Norwegian. Perhaps it’s time to take a virtual vacation to Norway and connect with her via zoom for some of the virtual vacation activities.
So delighted to hear that you are feeling better! Looking from the outside in, it's no wonder that your BP elevated with the amount of stress that you have been under,;forget medication toxicity. Having to deal with that level of nonsense and incompetence is enough to make anyone sick; forget angry. My instincts remain positive - you will see much better results via the August 14th labs as your system will have time to settle down; if not, by the next labs. You are diligent; eat well, drink your water which is a most important part of self care and also one that you can control. Hold that thought! A virtual vacation sounds wonderful! A change of scenery and good company is a magic potion to feeling like a different person. Go!!! Please take care of yourself and get some relaxation time; it's long over due. Thinking of you and sending positive thoughts. Please reach out and let me know where your path has taken you and how you are feeling!
I have a recorder on my phone and I've gotten the okay from each of my physicians to record the answers to my questions so I can enter them in my log when I get home. Don't try that without the knowledge and permission of each doctor.
Good information, OC.
Wow! That is a good way to remember important points of your visit.
I am a note taker. I write everything down.
So do I. I use the recorder because I don't take dictation or use shorthand. When I get home I play the recording back and enter the notes into my anecdotals for all of my physician visits. This way I have an accurate note on what we discussed. If the physician says anything I don't understand during the visit, I do my best to have it explained and that is what I enter into my log.
Excellent article, OC!
This is very definately a keeper!
Thanks for sharing!