Frustrated with the Transplant coordinator

[bette1]

I have been having lower back pain for months since the transplant.  I've been to see the primary care doctor, and had physical therapy with little improvement.   I feel that the transplant coordinator keeps blowing me off!   They think I'm just out of shape or something, but I researched the issue and both myfortic and prograf have back and muscle pain as side effects.  I'm on 4/4 or prograf and 2 360 mg tabs of myfortic twice a day. 

It sucks because I'm in pain every day and no one thinks its a big deal.  I can't even take anything but Tylenol!  Plus I never had back pain before the transplant.

[MooseMom]

I really don't understand why more people are not concerned about your pain.  Pain always means something...maybe not anything important, but maybe something pretty critical.  What do they tell you specifically when you tell them about what you are experiencing?  Do they even hazard a guess?

[bette1]

The transplant people think it's just something that I can exercise my way out of .  But I've tried their way with no results.   I sent my coordinator an e-mail this morning and got no response.  I am lucky because my transplant is functioning great.  I think once that is ok, they figure I'm fine. 

[Chris]

My transplant center is a pain also, but once I had my transplant, we no longer have contact with the coordinator. My center isn't even in the modern age like te rest of the doctors offices there with the use of email and access to lab results from home. I was having problem in late June and they did not do anything till I became really sick in September and then stepped in to change my immunosuppressants which was causing the problems.
 
I hope you do gets answers sooner than later. When you go to your next follow up visit with the transplant doctor, ask the doctor about this directly, not a nurse or coordinator. Go straight to the source as they say.

[Riki]

Why talk to the coordinator?  I'd be talking to the neph. That's his job.  The transplant coordinator just figures out who gets which organ, they don't have anything to do with care.

[bette1]

At my center they have a pre-transplant coordinator and a post-transplant coordinator.  She's supposed to be your bridge to the docs but I don't think the system is working very well. 

[Riki]

That's an odd system.. why would you need a bridge between you and your doctor? sounds like a way to make jobs for friends

[okarol]

Pain could mean internal bleeding or some fluid build up! If it were me I would ask the transplant surgeon to order an ultrasound. This is scary!

[paris]

 Because you don't see a neph or the surgeon .  At my center, you have a pre-transplant co-ordinator to help you with all the logistics to get listed. Then a different co-ordinator while you are in the hospital, and finally a post transplant co-ordinator.  She is the line between you and the surgeon.  I have only seen a nephrologist a couple of times in the clinic -- once during the IVIG infusions and once during the biopsy a couple of weeks ago.  I met each surgeon an a diifferent visit through the years, but you rarely seen a neph in the clinic.  The co-ordinator and nurse practitioner see me every time.   At least in my center, you don't have a one on one relationship with the surgeon. It is a huge hospital and the surgeons office is off campus.  I can get ahold of the co-ordinator instantly. That is who you call if you have any problems.  The co-ordinator and nurse practitioner see all your labs, go over everything several times a week and call if your numbers change, etc.     Of course, you are under your own nephrologist care until the transplant and then released back to him after a period of time.  Your normal neph doesn't know the ins and outs of transplantation or the after care.  That is a whole different specialty.     Now, in other counties, or  small transplant clinics, their system may be entirely different. 

Bette,  Is you center in Winston-Salem?  Or am not remembering correctly?  It is a great hospital.  UNC has been very good to me.   I have found, though, if I have other pains not connected to the kidney, they say go to the GP.  Everyone seems to only want to deal with their specialty!    I am sorry you are in pain.   

[Riki]

still makes no sense to me.  Isn't the neph a member of the transplant team?  At the transplant centre that I go to there's more than one neph, but they all review your case when you're trying to get on the list. There's usually one or two who stay with you for everything.  The surgeon, who's also on the transplant team, you only see just before surgery, and maybe for a bit afterward.  Everything goes through the neph.  Nurse practitioners are illegal here

[Chris]

That system seems weird to me of not seeing a doctor. Not seeing the surgeon post transplant after a few months I can understand,but not seeing the neph is od. I see a doc on every visit.
 
I would ask you local doctor for help if you are not getting anywhere with the transplant center He or she may get somewhere with  your clinic or atleast order a scan.
Hope you get somewhere  soon.

[okarol]

Yes Jenna's transplant center is small, but very busy. Every appointment was with either the surgeon, neph or physician's assistant. The would take her weight, blood pressure, review her meds, go over that mornings labs and discuss any changes. It's been that way for 3 1/2 years.

[paris]

A nurse practitioner is similar to a Physicians assistance.  They have a Masters degree in the field of their specialty and actually have more education than a physicians assistance.   The only reason I am so familiar with it is my daughter in law is starting the program this winter.  She has a B.A, in nursing, has been in labor and delivery for 12 years, and her specialty will be Mothers and Children.   They are able to prescribe medications and are the right hand of the surgeon.  Doctors are so overloaded, they need trained professionals to aid them.    Rici, what kind of education do nurse practitioners have there?  Every country is so different and I find it all fascinating.

Each center alters their program to fit their needs.  No two seem to follow the exact same protocol.  As long as they are taking good care of me, I am thrilled!

[cariad]

Bette, I am so sorry to hear this. I believe you went to Madison?? I really need to be careful what I say because I LOATHE them there, and one of the primary reasons was that they behaved as though getting in to see a doctor was some special, personal favour that they were performing for you. I am hours from Madison, and I once scheduled a biopsy at their suggestion along with some very expensive childcare. After I arrived, the doctor, if I must call him that, berated me, told me I was going to die of stroke or graft vs. host or from the biopsy itself. I don't want to name anyone, but his initials are JP. BEWARE. I have found him to be nothing more than an arrogant, self-involved nightmare. In fact, I had requested anyone but him for my biopsy and then in he sauntered. If the transplant nephrologist Dr. Hoffman is still there, he was always respectful and had a personality. You will never get a Madison doctor on the phone, though. The nurse always told me "They're just so busy!!" Apparently, I was not too busy to drive all the way to Madison, sit around half the day, be told they would never give me a biopsy because I will drop dead on the spot, and then sent home with no more information than I had before. OH!!! And, I received a bill for over $300. (That doctor at one point told me he could be my GP. Clueless!)

I see my surgeon at every visit, and of course they are really busy. I have his mobile number, his office number, his email. I am past the point where I need to see a doctor constantly, but he will just come by to say hello and have a chat when I am in town. Nurse practitioners are great, one of the best medical professionals I ever saw was an NP, but transplant seems to require a doctor, especially if you are experiencing issues. I say burn the bridge and demand to see a transplant nephrologist. Aren't you in Chicago? Can you have your care transferred locally? I wish you luck!!!

 

[paris]

If I were having big issues, they would hear me all over the hospital until I saw who I needed to see.   Bette, I hope you get some answers soon.   I do know with Fibro and Arthritis, they refer me back to the Rheumatoligist.   Too many specialists---- I just want Dr. Welby to take care of everything!   Am I aging myself?  That show hasn't been on for years!!

Let us know how you are and if anyone helps you.        (getting back to Bette's problem)    It does sound medicine related. Those side effects are clearly stated on the meds.    We'll be waiting to hear what they do for you.   

[bette1]

Well I finally heard from my Coordinator who says she has never heard of anyone actually having this side effect (so apparently it couldn't be happening) and they didn't want to reduce my medications because they were at good levels and maybe I should get an x-ray of my back.  I called her back with additional questions and am still waiting.  I don't know if it's her or the center but I am still hitting a wall.   

I went to Madison because of the wait times.  I didn't have a donor, but it is really hard to go there for the after care. 

[Riki]

Rici, what kind of education do nurse practitioners have there?  Every country is so different and I find it all fascinating.

We don't have any. Plain and simple.  There was a trial with them a few years ago at one hospital in the province, but that trial ended, and the nurse practitioners went back to being regular nurses, even with all the extra training.  The Doctors did not want them

[Chris]

bette if you are closer to Chicago, there are a few to choose from for after care and 2, but maybe 3 now in Southern IL. I knowone for sure in Chicago will not take in patients who get a transplant out of area unless they recently changed their policy.
 
In April the NKF of IL holds a seminar regardng transplantation of all types,but mainly kidney of course and there are always reps from the area transplant centers you can ask questions and concerns too. I believe it is also held in downstate IL.

[bette1]

Thanks Chris,  I'll have to go to that seminar.  It sounds helpful.  I had after care for my first transplant at Rush, but was not impressed.  I can't believe that you can't transfer to another center.  What if you move from California to Chicago.  Does that mean you have to fly to California for all you aftercare for the life of your transplant? 

[Chris]

That is or was Rush's policy when asked at the seminar a couple years ago. Loyola, Northwestern I know yu can and I'm sure you can with U of I and U of C.
 
I also got an email today that there will be a seminar October 30 about CKD treatment options from PD, NxStage, Hemo, ut didn't see anything about night dialysis. I will try to post that Sunday as a new thread.