Hello,
I have had an appointment scheduled for about 5 weeks now with an MPN specialist at City of Hope. They just called and switched me to another doctor. I looked him up and I don’t see anywhere that he specializes in MPN’s. How do you find this information.? I called back but I have to take the receptionist’s word for it.
I am finally at an MPN specialist. 5 years ago diagnosed ET. Was being treated by a hemotologist, then switched to another, then another and then a 4th. I finally went to the "best. He cost me 1400€ for 6 appointments and was not able to answer my questions. It was like pulling teeth. I then went to another hospital and landed a fabulous docotr who asked questions from me and listened to me for 1'20". Then we made a plan with me. She was a normal hemotologist, but was great. I started doing better. then I was assigned another doctor, not good then another, great! then she had a burnout.
I then actually looked up MPN specialist in Austria where I live. There are only five. The expensive one I had pain was in Vienna and head of the department at the hospital and took only private patients. The other one I found is in another city and I made an appointment. I just had to drive an hour and 20 minutes to get there. So amazing. She looked at details of my specific make up and dared to switch my medication, made a plan of action and I am so much stronger. For the first time, no side effects! Tomorrow I will know what my bloodwork is doing! (I'm very well studied about medicine and natural healing and am much healthier at 57 than at 42!)
1. It is amazing if the doctor is an MPN specialist. Look up the doctor's name in internet. If you cant, have someone do you this favour! If not, there are really good hemotologists that know a lot about our illnesses and are prepared to go that extra mile to help you and care. If you have one of those, build a good relationship, become a team.
2. Be well prepared for the appointment and ask questions. Ask for options. If you are suffering side effects, try to find a balance or seek to change meds.
3. Take charge of your health. No one has time for anyone today. Do your part and your doctor will be able to help you better!
4. Smile!
in general, you’ll be safe with a hematologist. Listen to the suggestions in the previous post and become your own advocate in all things relating to your diagnosis.
While there are some regular hemotologists who are somewhat familiar with MPNs there is no substitute, if you have access, to an MPN specialist. It is like most things in life, practice makes better (never perfect)...if regular access is difficult perhaps your local hemo can work in tandem with a MPN specialist
Here is a list of MPN specialists
Good luck!
This is another of those situations where you have to be your own best advocate. You have a right to select your provider. Switching you without your consent is not acceptable. You chose to go to see a specific provider who is a MPN Specialist that you selected, not to seen by any hematologist at City of Hope.
In looking at the two resources we have available, these docs are listed for City of Hope.
USA Duarte CA Dr. Stephen Forman
USA Duarte CA Dr. David Snyder
Haris Ali is also listed on this site
pvreporter.com/mpn-speciali...
The City of Hope site lists these docs as having expertise. you can go through the list and see some information about each doc. cityofhope.org/search?searc...
Haris Ali cityofhope.org/haris-ali
Idoroenyi Amanam cityofhope.org/people/idoro...
Amanda Blackmon cityofhope.org/amanda-blackmon Note that Dr. Blackmon has co=published MPN research on inflammation with Dr. Fleischman, one of the leading MPN Researchers.
Given the number of docs listed on the City of Hope website, they may have MPN expertise built in to their Hematology And Hematopoietic Cell Transplantation team. Suggest you review each o the docs on the list at City of Hope and see who is available. Be sure to look at the list of publications as it can give a clue about interest/expertise in MPNs.
If the doc they switched you to is one the list as a MPN expert doc and acceptable to you, the it may be OK. If you do not see evidence of the expertise you wish to have, then you have every right to insist on switching to an available doctor of your choice.
Thank you for responding. I was on the phone off and on for three hours yesterday. They kept putting me on hold to speak with a nurse. I was in tears. I already have a hematologist, Dr. Gilmore, at City of Hope in Corona. He is the one that referred me to Dr. Ali for MPN specialty. I am not sure what to do now. The receptionist told me that she spoke to the nurse and she said the doctor I am getting specializes in MPNs. I read his bio and I don’t see that. His name is Dr. Ahmed Aribi. I called back after reading up on him and got nowhere. I am so upset about this but I gave up. I did send a message in the patient portal on their website so hopefully someone will respond.
It does not appear that Dr. Aribi has a specialty in MPNs per their own website. Dr. Ali does, as do some of the other docs in the hematology clinic. Perhaps Dr. Gilmore can help since he referred you.
I had something similar happen when my old MPN Specialist left Johns Hopkins. The doc they assigned (without asking me) did not show as a MPN Specialist, though he was a very good general hematologist. I already have a great hematologist. I declined the referral and insisted on a different doc as my MPN-expert consultant. I made a point to define for the schedulers/hematology team what I meant by a MPN Specialist in writing on the patient portal. I declined the doc they referred to me, screened the available docs, and did accept a doc that met criteria as a MPN Specialist.
Suggest that it is time to be assertive. Decline the suggested referral to Dr. Aribi and insist on referral to a doc you find acceptable as a MPN expert. No need to waste time going back and forth with a receptionist who cannot really do anything about the situation. You can also contact the City of Hope patient Advocate office for assistance or file a grievance. cityofhope.org/patients/you...
Do not give up. you most certainly can navigate this situation for the outcome you wish to have.
All the best
You are awesome. I am on hold now and I won’t give up.
How did it go?
they sent a message to Dr. Ali saying that I am requesting him and I need his expertise. He is supposed to reply within 24 hours. I kept my appointment with Dr. Aribi since I’ve been waiting almost 6 weeks. I should know something tomorrow.
Stick to your guns on this one. You have the right to select your provider. Hopefully, they will respond to your very reasonable expectation to see the doctor of your choice or an acceptable alternative MPN Specialist. If not, then you can file a grievance per City of Hope policy.
File a grievance. If you want to file a grievance with this hospital, you may do so by writing or calling City of Hope Patient Advocate, 1500 E. Duarte Road, Duarte, CA 91010, Phone 626-256-HOPE (4673), extension 62285.
FYI - This is the note I sent when I was transferred to a doctor not of my choosing.
I am looking for a MPN Specialist to advise me and my local hematologist about my MPN care plan. I am not looking for a hematologist with familiarity with MPNs. I have an excellent local hematologist who meets that criterion.
I am aware Dr. Streiff is a renowned expert in venous thromboembolism. VTE expertise is related but not what I am looking for as part of my MPN care team. He sounds like an outstanding hematologist, but not a good match for what I need.
Major Criteria
1. Active member of a MPN Center/Clinic team.
2. Focus on MPNs as a primary/major focus of clinical practice
3. Up to date on state of the art and emerging MPN treatments.
4. Active participation in MPN research.
5. Presents/attends MPN forums/trainings/conferences.
Minor Criteria
1. 100+ MPN patients (past & present)
2. Values a collaborative relationship with patients. Respects the patient’s ability to make decisions.
3. Focus on underlying mechanisms involved in MPNs (e.g. molecular pathogenesis, kinase pathways, proteomics, genetics).
Having reviewed the doctors listed for the Johns Hopkins Center for Myeloproliferative Diseases, the following would be my preference.
1. Dr. Alison Moliterno (aware not taking new patients)
2. Dr. B Douglas Smith
3. Dr. Alexander Ambinder
If there are other options for MPN Specialists other than those listed on the Johns Hopkins website, please provide that information.
My preference is to keep my MPN Specialist consultation at Johns Hopkins since it will facilitate collaboration with my Neurofibromatosis/Neurology care. If this is not going to be possible, I will look to options outside of Johns Hopkins. I could consider placement on a waiting list providing it is not too long of a wait.
Please advise as to the options.
this will help so much. I can’t write a letter right now. I don’t feel good at all. Thank you.
Glad that this will help. Sending this note in the portal resulted in being transferred to a good doc with the expertise I was looking for.
All the best moving forward.
Update: I got my appointment with the MPN specialist back. I kept calling and doing everything I could to keep my original appointment. I kept at them for 2 days. A nurse from City of Hope called me this morning and tried to get me to switch to the doctor that had more availability. I stood my ground and pleaded with her. Finally she offered to contact Dr. Ali (the MPN specialist) and see if he could make room for me in his schedule. He told her to go ahead and move some of his patients around so I could have my appointment back. Thank God.
I wanted to make sure I updated since I truly had to fight for this. It paid off. Thank you Hunter5582 for coaching me along. I am so very grateful.
Congratulations. I am very glad to hear that you will see the doctor of your choice. Assertive patients do receive higher quality care.
pleas do let us know how things go.
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