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Asking for feedback on your healthcare experience

Hello, Reposting here as I work with heart transplant patients: 

My name is Tara, I am a post-heart transplant coordinator at Allegheny General Hospital in Pittsburgh. One of our biggest roles as coordinators is education. I work with a wonderful group and think that we are doing some of the best work in transplant. However, due to the limited research on the transplant coordinator role I would like to ask everyone what we can do better. No holding back! I'd love to hear everyone's critique, your words and advice will help future transplant patients. No matter how grateful you are, or how wonderful your team is, I'm sure that you still have valuable advice for how we can improve. In the end my goal is to produce an app that will be given to everyone once they are made 1A status. It will guide them through the post-transplant life by reinforcing aspects of their care that are necessary for health maintenance. 

Specifically I would like to know about your pre/post transplant education experience. 

Is there anything that you wish you knew more about?

Did you have any complications that you feel could have been prevented through better education?

Did you feel prepared for everything? How much education did you receive? 

Was there something in particular that you found especially helpful?

Please feel free to elaborate on these questions and talk about what hurdles you had to overcome due to inadequate education. I would love to hear from you!

And while we are at it, please give all general advice, what can we do to be better overall? 

Thank you!!

And for everyone waiting, hang in there- you never know when you will get the call. Best wishes to all, we all are working hard to promote transplant awareness!

Thank you,

Tara

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Replies

  • Stanford, Ca. Is where I received my transplant. I do have an excellent doctor there and here in Santa Cruz,Ca. I can't say better things about my doctors. ..although the co ordinating team at Stanford is excellent. I ask a question and always answered promptly. They don't want me to seek advice from anyone else. I received a full package on diet, drug side affects, and exercise. I do listen to people here but always run it by them first. Primarily a fresh diet , no grapefruit , cook meats and fish well done. Limited salt , prefer very limited sugar, live culture yogurt.... plenty of hydration. Lots of fresh fruit and veggies organic... exercise . My blood tests so far (knock on wood ) are excellent. Watch out for high doses of stress , that emotion can lead to problems. As my life picks up speed , I notice the tendency... my daughter sent me the book Dr. Wayne Dyer Wishes Fullfilled and A world Without Fear. By John Jones. For me it is the emotional re adapting that has been challenging even though my outlook is usually up.
  • I am a very pro-active patient.  I see myself as the captain of my ship, and my tx team of neph and coordinator is my crew.  The buck stops with me.  As captain, it is my responsibility to find ways to educate myself.

    I was transplanted at UW-Madison, and once I was listed with them, I went to their website and looked through their transplant patients' handbook.  Once I was transplanted, I was given a paper copy of the handbook and have used it as a reference guide on many occasions.

    Saying that, I have three points to make.

    1.  I agree with other posters that the financial/insurance side of transplant is a nightmare.  It is a disgrace that sick people have to dig into the insurance weeds to such an extent.  At UW, each patient is assigned a financial person, and that person goes to see the patient before s/he is released. 

    2.  There was nothing in my handbook that mentioned the word "neutropenia".  I knew that one of the side effects of the meds was "low white blood cell count", but when I was diagnosed with neutropenia, I knew I had not seen that word before.  It's a small point, but it would have been helpful in my case.

    3.  Post tx communication between patient and coordinator is vital and should be facilitated.  It is not always easy to get your coordinator on the phone during the day, so it is important that there is another, secure way to communicate.  Your center probably has some sort of MyChart communications hub; mine did not when I had my tx, but they do now, and it has been a godsend.  Make sure patients know how to use it!

    • Thank you MooseMom! 

      The finance side is not my area but I am understanding more the importance of bringing our finance coordinator in. It's a big deal. I might deal with a health crisis or critical lab, but the day to day reality is that we are are all just people trying to survive in the world- finances are a huge and ever present burden, while an abnormal lab value is not always, and is often more easily corrected than a broken bank account. 

      I think often the term 'low white blood cell count' is thrown around, and it can mean a couple of different things. Then someone comes to you with a diagnosis of neutropenia, and it sounds like a much different and much more serious thing. Additionally, if the two terms aren't correlated then everything you know about how to protect yourself when your white count is low is sort of meaningless. I find this feedback especially useful. It should not be taken for granted that a medical term is familiar or understood no matter how much it has been described to a patient, because it may not have been described with the same terminology. I hope I am understanding you correctly!

      Lastly, communication is the biggest factor that I take personal responsibility for. I give my email to patients if requested, do not leave work without returning every voicemail and lab result, and make it very clear that if a response is needed and I am not available to please call the on call physician. Many of my patients even text me, which has prevented more than a few ER visits for them. In reality though I don't think that I am particularly good at communication. Rather my team is especially amazing and have trained me to be extremely responsive. Our physicians will call back immediately. You will never go more than 12 hours without hearing back from me, 24 on the weekend. And no emergency is too small for our Heart Failure MDs to respond right away, 24/7. I'm happy to hear that this is important to you. We also have MyChart etc and that is utilized as well, but it is good to know that communication is key- I consider it one of the most important parts of my job :-) 

      • Regarding communication, when I need to contact my coordinator, it is for two reasons.  One is for information, and the other is for reassurance.  I understand that coordinators have pretty much seen it all, but I have not.  If I am feeling nervous about something, I always specifically ask, "What can you tell me that is reassuring?"  So, if you sense anxiety in a patient, maybe make a point of telling him/her what s/he can feel good about.  That has always helped me.

  • Hey Tara ,

      getting back to your post ,  I have been with 2 different cntrs , Univ. of Rochester Strong Memorial  in NY  and the Cleveland clinic in Cleveland  Ohio ,   I went from a small cntr to one of the biggest cntrs  and back to the smaller cntr ..   with the advancements in computers and patient portals the  link  between primary care dr. and cardio dr.  should be better , granted everyone of these cntrs are looking out for the best possible care for their patients ..   I feel  if I see my primary doc  when he finishs with my visit and writes up the visit  his or her report should go directly to my cardio doc and txplnt cntr  and vice verse  ..  I  find myself  sitting  waiting as these cntrs  try and find notes  of visits  from prior dr. visits  ,  not sure if this makes sense  ..  I take my trsplnt book  to every doctor I see  and generally  how they all get caught up.  this next comment may be  long to your social workers ,  correct insurances  and  prescripition plans , Most people don't know that if you are on medicare prior to txplnt ,  medicare covers  rejection meds 100%  so  getting the right plans  may limit a lot stress that is placed on patients and their familys  ...  hope  this helps some ..  

    • Thank you David, sounds like this is a continuity of care issue. I always try to make sure that my patients are provided the best care, in the most convenient location. It is true that at times consult notes just get lost in the mix.<br/>
      <br/>
      With so much going on I believe that the best approach is finding the most effective and appropriate providers for our patients. But also following through to see what those consult results are. <br/>
      <br/>
      I truly appreciate your feedback and will consider your words when my patients are being provided care locally and/or outside of our network.<br/>
      <br/>
      Also, I am seeing how important insurance issues are. I intend to utilize our financi coordinator a lot more now. <br/>
      <br/>
      Thank you!!
  • Prograf, Myfortic, and perhaps others are available at $0 co-pay under programs by their makers.  Perhaps others.  No one told me about it.  Had to find out on my own.  That cost me about $1500.

    Otherwise, my coordinator and all the nurses and staff we angels I did not know had visited earth.

  • Hi Tara ,   Thanks for someone Finally asking this question :   let me think on this for a day and I will get back to your post !!

    • Thanks David I really look forward to hearing what you have to say!

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