S/P TP/ICT? What Kind of Doctor Do I See?

[Guest guest]

Kathleen,

You wrote, " I was also wondering, after the tp, ict, what kind of doc do I see?

an endo? a gi? an xplant? who does the initial follow up (I will be going out of

state). "

That is a great question. I am glad that you brought it up. The PAI supports the

recommendations of the ADA, and AGA, and feels that a comprehensive care plan

team should be maintained by anyone who is " high risk " . As I have mentioned in

previous posts, that includes anyone with pancreatitis, prediabetes, or

diabetes. Anyone who has had a TP/ICT (or, of course, TP/w/o ICT) is considered

a high risk for developing diabetes. Therefore, it would behoove you to continue

your relationships with each discipline of your care plan team. When you meet

with them, take a list of questions and concerns that you have or feel may

arise. Ask them to identify with health care provider is responsible for each

specific area of concern. Make sure you address each one. I took my medication

list and wrote the name of the doctor who prescribed it, who would be writing

refill prescriptions, and who would be contacted if there were problems with the

medication. Sometimes, the consultant will write the original script, but the

PCP will write refill prescriptions, yet would not agree to take phone calls for

problems, since, they died not feel qualified to make those decisions.

Essentially, it was more of a logistical standpoint, of being in able to access

someone to physically write the scripts, since the consultant are frequently out

of state. The consultant, however, is always willing to take your phone calls

about problems, make adjustments and notify your MD with the new script order.

Sometimes, the consultant will want you to call your PCP for everything, have

your PCP call them, etc.

Sometimes, it is clear and simple who to contact for what, but not always.

Particularly, when such comprehensive care has been delivered to someone

receiving the TP/ICT. In this case, the endocrine system is subdivided. Today so

many providers have their subspecialty, it makes it difficult to make sure

everything is being assessed at all times. There has to be at least one person

who is willing and committed to serve as the care plan leader to make sure

nothing falls through the crack. Sometimes, of course, this is dictated by the

insurance company, who seems to assign this to the PCP, or family practitioner.

It is customary in high risk cases, though, to have this responsibility

transferred to a more skilled practitioner. In my case, I am able to choose my

health care providers. Therefore, for my PCP, I requested an internal medicine

physician with an interest in endocrinology to serve as my PCP. The way I knew

his interests was to do a simple websearch for his bio and current research by

typing his first and last name into the search engine. Today, more physicians

are pursuing Internal Medicine vs going into practice following graduation as a

general practitioner or family practice physician. Years past, to see an

internal medicine specialist required a consultation, etc.

Although, my PCP is quite capable of managing my diabetes, and pancreatitis, for

that matter, he is actually the one who felt we should have active participation

from the specialists. On my team, my PCP is willing and committed to serve as

the care plan leader / coordinator, per se. The degree of involvement of the

other providers varies. I see my PCP and Endocrinologist every three months.

They are both responsible for writing their own prescriptions and calls for

problems, although the endocrinologist sends the PCP a copy of each visit to

make sure I have one complete medical record, somewhere, in this case at my PCP

office (and my house:-) Since IU has an excellent diabetes education

department, I am taking advantage of their interest to be an active member of my

health care team. This was confusing to me at first, since I didn't know when I

would call my endo and when I should call the CDE. I did what I suggested in my

first paragraph, laid out my potential concerns, ect, and now I have it in

writing, who to call for what and when. That is helpful since it can become

frustrating and scary when you need someone and can't remember what to do. At

any rate, the CDE's at IU have received advanced training, and though they are

not nurse practitioners and cannot prescribe medications, they are qualified and

authorized to " tweak " insulin doses to facilitate achieving blood sugar control.

Most patients are set up with a 'sliding scale' at home, in order to make slight

adjustments as necessary to accommodate increased exercise, illness, etc., but

it is helpful and reassuring to be able to call the CDE and go over this, as

well. They can make changes to that scale, as well. This is particularly helpful

if you are on a new insulin or medication. When I have not been able to

determine any rhyme or reason to my blood sugars, having a new set of 'eyes' to

review my log helped identify patterns which I missed. I asked about the

communication and coordination that occurred between the CDE's and my

endocrinologist, so I know that they talk daily and meet regularly to keep each

other informed. My endocrinologist assured me as well, that I can call her as

well, it is my choice.

Other than weekly therapy and monthly pain management doctor visits for

prescriptions, I see the other members of my care plan team ( GI /

pancreatologist, pancreatic surgery, dermatology, GYN, dental, and

neuro-opthalmology) on a consulting basis one to two times a year, or as needed,

even if there is not a problem. It is important to maintain the contact and

communication so they know who you are in the event there is a serious problem.

The other huge consideration, of course, is that I need to make sure I do

everything possible to have documentation that I am still disabled, if, in fact,

I am. I wouldn't lie, of course, but as the pancreatitis progresses everyone

becomes more lax, including myself. I rarely go to the ER anymore, because I

have a good relationship with all my doctors and I have everything I could

possible need to manage anything I would go to the ER or the hospital for, at

home. I know much more, and for the most part, when I get really sick and feel

like I am going to die...I know I won't, and... " this too shall pass...it always

does. Now, I am no fool, either, and if I need medical care, I will get it, but

as time passes, living with a chronic disease is different than dealing with an

acute one.

If the multidisciplinary care plan team concept has been developed, promoted,

and nurtured, a strong and trusting relationship exists with anyone you would

need and would likely be available. I did not mention the ancillary members of

the care plan team: pharmacist, lab technologist, hospital social worker,

hospital and doctor office accounting / billing person, etc.) I take their

business card or make an entry in my own book of a particular person's name,

title, and contact information. Whenever I can, I make a point to poke my head

in and say, " Hi. Thank you for your help. "

I do a quick self assessment everyday at 3pm to see if there is anything I need

from anyone on my care plan team, so I do not have to deal with the " Friday at

5:00pm scenario " It isn't worth it, since it usually involves dealing with

people who do not know anything about pancreatitis, etc.

The point of the last few paragraphs was to point out that after a while there

may not be frequent hospitalizations or ER visits, even the doctor visits drop

off, since many things can be handled over the phone. Therefore, it is important

to be able to provide documentation that you are still in need of this level of

medical care, it is just provided in a different way. Another situation was that

a while back I was needing to locate a new pain management physician. When I was

in his office, he asked me when I was last in the hospital (admitted). It had

been sometime, but certainly did not have any reflection on whether or not I

still had justified pain. In his mind, it did, he said, if I had not been in

enough pain to require hospitalization then I wasn't really in pain. Today, that

makes no sense. You would think he knew what pain management was. If I am

managed, then I wouldn't need to be in the hospital. I showed him the letter

from my previous PCP regarding my medical condition, etc. He said that old, you

are not that sick now. At any rate, if a doctor thought that way, you can

imagine how a disability reviewer thinks. Today, of course, I have the medical

letter updated annually. And, I make sure that each provider has an entry in

their medical record, at least annually, supporting my diagnosis, pain

management, and disability.

This is a long message, please delete it and do not carry it over into your

post. Thanks.

Karyn E. , RN

Executive Director, PAI

Pancreatitis Association International

[Guest guest]

Kat I dont see a GI, I need to find a new endo because the one I had

was a horrible human being and I haven't been back since January. Just

waiting until the kids go back to school so I wont have to drag them

along behind me. but I plan on calling around to see who knows about

the auto ict. I see my pcp when I need new scripts or have a sore

throat or something. I was going back and forth to see the surgeon,

but thats all done with and I have absolutely no intention of EVER

becoming a surgical pt again.

[Guest guest]

In all honesty, I have been stalling. I have had doctors up to here

and am just sick and tired of all their crap. I was a lot healthier

before I ever went to any doctor. Never underestimate the power of

ignorant bliss!! I know I am better now, but just hate the thought of

seeing anymore of them. Maybe if I can find a female endo I might do

that. And a cute male pediacurist that not gay.. hhmmmm

[Guest guest]

-you are cracking me up! LOL I know what you mean! I was saying the

same thing the other day, good thing I didn't know what I was in for! LOL I

might not have ever done it. You'd pretty much have to drag me kicking and

screaming to the hospital....I will not go quietly! LOL...but in all

seriousness, I am still hanging on to the concept of a straight guy

pedicurist-Kathleen