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Author Topic: Referrals?  (Read 618 times)
kristina
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« on: January 29, 2023, 01:18:42 AM »

Hello ... and ... I would like to know how many different specialists are generally consulted as a transplant-receiver? For example, if one takes medications to keep the BP under control, is there a hypertension-specialist at the transplant unit or is it “sorted out” through the GP?

Another of my questions is, do you consult with one specialist only at the transplant unit or do you consult with a different specialist every time?

And, if one needs to see any other specialist for whatever, who precisely makes the referral, is it the transplant unit or is it the GP?

Many thanks for answering my questions from Kristina. :grouphug;
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SooMK
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« Reply #1 on: January 29, 2023, 02:35:18 PM »

I’m in the US so it’s probably different for you. My insurance doesn’t require me to get written referrals. My neph/clinic might tell me I need to see a specialist and I’m sure they would give me a name if I asked but it would be too far away from my town (two hours) for me to consider it. I usually get a name from either my primary care doc or I ask friends and acquaintances. I also spend hours doing my own research on docs online but I’m not sure how valuable that is. Many common meds are prescribed (after approval from the neph) by primary care. At my yearly clinic visits they always ask about my routine screenings, vaccines, any medications changes, etc. It’s my primary care doctor who does a complete physical exam, labs and evaluation. So some labs might be out of whack and she might be concerned.The patient is the liaison between these specialists, at least for me.

I’m very fortunate to be able to navigate this system (make appointments, remember them, get there, check my results, etc), have good health insurance and am able to make the trek into the clinic once a year. I believe that different recommendations will be made for different patients. I am sure that all these doctors are always evaluating the competency, fragility, finances and support systems of each patient. At least I think that’s true at the clinic which is a large university-affiliated big city hospital. Meantime, I know that many of the doctors—any specialists or primary care—in my area will not give appointments to people who don’t have enough insurance.

I always see the same transplant neph at the clinic who was assigned to me when I had my transplant. I think the system is very flawed and I feel vulnerable sometimes but I think a lot of it, for me, is my location so far from my clinic in the city.

Sending my best to you Kristina!
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
kristina
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« Reply #2 on: January 29, 2023, 03:22:57 PM »

Many thanks SooMK for your kind reply because I try to get my mind around very confusing & negative health-care changes here.
Our health system appears to undergo terrible changes which do not make any logical sense and this is very confusing & distressing because surely even people who try to "demolish" a formerly pretty good health system may sometime in the future need a good doctor as well and I wonder what happens when they realize that?

Many thanks again for your kind reply and I send you my best wishes for good luck in the New Year from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #3 on: January 30, 2023, 08:28:45 AM »

I hope someone from the UK can help you with your questions because the answers really depend upon which kind of system governs your access to healthcare.

When I moved back to the US, I saw a GP to whom I told my history of fsgs.  He ran labs and referred me to a nephrologist within the practice, and it was the neph who I saw on a regular basis.  He was the one who prescribed and managed the various meds he put me on when he saw just how bad my renal function was.  He was also the one who referred me to a Chicago based transplant hospital when it came time to be listed.

After a two year wait, my neph referred me to another transplant hospital in Madison, WI, which is where I got my transplant.

Now, 10 years later, I see my GP for anything/everything not related to my transplant.  He is the one who manages my BP meds and a statin, while my tx coordinator manages my immunosuppressants.  My clinic isn't interested in things like cancer screenings or bodily injuries; those sorts of things are managed by my GP.  If I were to get in an accident or get some illness unrelated to my transplant, I'd go through my GP but would let my tx clinic know.

Does that help?
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