Transitioning to a Primary Care Physician

[Dora76]

Hi All,

I'm in the process of scheduling my last official follow-up appointment at my Transplant Center (They're actually working on rescheduling me for the THIRD time, which is quite frustrating, but that's an aside...).  It'll be my one-year appointment, and after that I'll need to transition to a primary care physician.  I know this might sound a bit odd, but I've never had a regular doctor.  I was 27 when I donated and I didn't have regular health insurance until shortly before I donated, at which point my physicals and tests, etc. were covered by the Transplant Center and my mom's insurance. 

I'm kind of nervous about moving on without regular follow-ups at the Transplant Center for a couple of reasons...  As far as the doctor's could tell, my mom's chronic kidney disease was caused by hypertension so I know it's a genetic risk factor for me.  At the time she was diagnosed, it was sudden because she wasn't seeing a physician regularly.  But it came as a huge shock because she had recently started exercising regularly, lowered her blood pressure, and lost a lot of weight.  But still the damage had been done, unknowingly.  I guess you could say I learned my lesson from that and I'm a little scared myself.

Anyway, here are my questions: Does anyone have any suggestions for important information I should ask for from the Transplant Center and my nephrologist before I officially "leave"?   Also, what other tests or evaluations do I need to make sure my new doctor-to-be watches out for in the future? And any other suggestions for things I should make sure to do moving forward to try to maintain a healthy lifestyle?  I know those are kind of broad questions, but I guess I'm just worried I may have some complication or develop chronic kidney disease too.

I'm trying to prep for my appointment so I can make sure to get all my questions in.  The Transplant Center is always very busy, so I get frazzled when I'm with the nephrologist.  Even now, sometimes my incision aches when I've been on my feet for a long time or I feel I get fatigued easily, which she's told me is "normal," which sounds feasible.  But sometimes in the middle of the night I worry if that really is normal. 

Now that I'm a post-donation donor, I feel a bit like I've been neglected by the transplant coordinator, etc. because I'm not as "critical" as the other patients they see, and I completely understand that, but I just want to make sure I walk away informed--but I'm not really sure what I need to know, and I think it's stressing me out...especially the longer I wait for them to reschedule my appointment!

Does anyone have any thoughts or suggestions?  Thank you in advance for reading.

[lawphi]

I may be in the minority, but I see little to no reason to have a face to face with anyone from my transplant center absent complications or research.  I simply email my lab results and fill out the form that updates the center on my health.  

If I had lost my kidney in an accident, I would have one follow up appointment with the surgeon and have annual blood work with a primary care doctor. 

If you have fatigue, you need to go to a primary care physician or your ob-gyn.  Fatigue can be caused by numerous things, like dehydration, junk food and stress.  Any surgical incision will itch from time to time, especially in the pelvic area with hair growth.  Scar tissue will ache from time to time when you lift or bend.  

Your primary care doctor will know exactly what to look out for in terms of having one kidney.  You will be advised to take your blood pressure, watch your diet and run annual labs for function.    

[Orchidlady]

The transplant center sent a copy of the records along to my PCP along with specific instructions as to the annual testing that was to be done. A copy of the annual testing is  sent to the transplant center for their records.

It's interesting that my husband and I have a husband & wife team for our PCP's. They both got a full copy of our records from the transplant center. I was surprised in that they actually did fully read those records (I was assuming they would skim through them) and asked both of us questions at our respective visits. It's nice to know that we have two doctors up to speed on our situation.

Dora, I think the greater concern would be the blood pressure issue. My husband's kidney failure , like your mom's, was caused by unrecognized high blood pressure. Your PCP may want to see you on a regular basis to monitor your blood pressure, and it certainly would be a good idea for you to monitor it regularly yourself. While exercise, watching salt and healthy weight can help blood pressure issues, it is false thinking that these things in and of themselves can stave off high blood pressure if you are genetically pre disposed to it. We have hounded my husband's younger brother since the transplant to go to the doctor about his blood pressure, since everyone in the family has it. He felt that since he excercised regularly and ate healthy it would be just fine. He looks good, and is not overweight. Guess who went to the doctor and is now on blood pressure medicine?

Best of luck to you and hope you find a PCP whom you trust and are comfortable with.

[dodger]

I can see where you are nervous.  This is the only health care team you have had interaction with and now, you will be out there on your own.  If they are affiliated with a HMO that you can join with your insurance that might make you feel more secure.  Otherwise you will need to stay in network of your insurance to keep costs down.  Once you have decided on where to go, then call and set up an appt as soon as you can.  Apparently you haven't used your own insurance this past year so you should be elligable to go for a complete physical now, which is a good idea if you haven't been examined this last year.  Do all the blood and urine testing.  That will give your new physician an extra base line to compare your previous tests to.

It might be a good idea for you to get established with a nephrologist of your own.  One that is not affiliated with the hospital transplant team at all.

Remember not to let anyone use dye for imaging as it is hard on your remaining kidney and get a medical alert bracelet or necklace informing anyone that you only have one kidney and on which side it is.

I would ask for a transcript of the surgery and copies of all the testing this past year for your own records and for your new doctors as well.   You can also get copies of the x rays and nuclear imaging.  There will be a charge for getting these, but if it is important to you it will be worth it.

It you prefer someone that is a bit more holistic, seek out an osteopathic doctor.  They have had additional training on wellness health.  Still a certified doctor just has extra training.

You can get your own blood pressure cuff and take your BP everyday or once a week and keep a record for yourself and for your doctors.

Also be aware, you need to be in charge of your health now.  You must arm yourself with all the information you find on living your life with one kidney.  You must be pro active on this.  Don't just sit back and expect any doctor to come running after you.  You have to let them know what your expectations are.

This site is a wealth of information and lots of folks willing to help in anyway they can.

Best wishes,  Janice

[Linda]

http://familydoctor.org/familydoctor/en/healthcare-management/working-with-your-doctor/choosing-a-family-doctor.html

THe above website has some good info on selecting a primary care physician (PCP).  For me, it is important to find someone who listens to me and respects my opinion.  Think about your interactions with the doctors you have worked with and which ones you like the best.  Those are the things you want to look for. I encourage you to "interview" more than one doctor to see who feels the most comfortable.

Also, as you have a the potential for the same condition your mom had, I encourage you to get yearly exams to monitor your kidney function.  Good luck finding a healthcare provider!

[Aries7]

Hi Dora,

I would suggest making sure you get a copy of all of your medical records pertaining to your donation from your transplant center. Also, once you do select a primary care physician, I would request that the center send a copy to your new doctor as well.

As far as finding a doctor, you could try "word of mouth". Ask friends and co-workers who they go to. You also could try to Google doctors in your area. Sometimes networks will list their doctors, as well as areas the primary care doctors "specialize" in. If you have an OB/GYN that you see, you could also ask her/him for some guidance with this. I was fortunate that I already did have a primary care doctor who I really like. It so happens that she did part of her internship in the nephrology department at the center where I donated, and was very familiar with both my Husband's surgeon and the nephrologist I saw there.

As far as what tests, the following are the tests my center recommended I have done yearly to monitor my remaining kidney:

Serum Creatinine (e-GFR)
Urinalysis
Urine microalbumin
Blood pressure

I make sure to have these tests done yearly and I do go to my primary care physician for these.

Best of luck to you in finding a primary doctor that you really like and are very comfortable with.

Linda

[llinton98]

What about choosing a primary care physician and then asking him/her for a referral to a nephrologist in your area? I have been followed by a nephrologist since my donation in 2010. If you do have the coverage why not use it for the best care available to you. This may give you better peace of mind going forward.

[Dora76]

Hi All,

Thank you SO much to all of you for taking the time to share your experiences and all the practical tips on things to watch out for and how to find a good doctor.  I truly appreciate it, and I know I was pretty frazzled when I posted that question.  I was overwhelmed; it was like I was suddenly confronting the risks of my decision when I never put much thought into it in the first place!  It's funny, some of you who responded have actually had your transplants more recently than me and here I am still learning to manage my own health and the health care system.

Just wanted to say thank you.  It's been a while since I was on the forum, but wanted to let you know your posts didn't go unnoticed.  In fact, I sat down and took notes since my appointment was rescheduled for tomorrow.  I've got a list of questions for the nephrologist and I'm planning to connect with a primary care physician.  I discovered we have a free health clinic at work (independently operated) and I can easily go there for a physical and eventually find a primary care physician.

Hope all's well.

Peace,
Dora