At last Guys date

[Spanelmad]

Post arrived a miracle in it self ,and then in the stack of letters a hospital.Not till June it's with Priya Sriskandarajah.

What do I need to take with me as this a second opinion?As I expect one hospitals it will not talk to another!!!

[PhysAssist]

Hi and Congratulations Spanelmad,

It's about time!

I'm a belt AND suspenders* guy in cases like this- take copies of everything you can.

When I met my MPN specialist, I even ended up using the "My Chart" lab reports to show them the history and progression of my Hct, Hgb, and eventually RBC increases, my BMB results, and even my local Heme/Onc's progress notes.

This is despite my local MD assuring me that she would make sure that they received all that in the several months I had to wait for the MPN visit. I did find out that she had sent it all, but it had gotten lost/delayed in between Roswell's mail and medical records areas. They had collated it all into my chart at the next visit about 6 weeks later.

Best of luck and best regards,

PA

*But not really in the men's apparel sense: I always wear just a belt...

[Spanelmad in reply to PhysAssist]

You've sort of confirmed what I thought.I've started to collate a history of the RA journey and spinal stuff.And will ask my Go to send me his platelet chart( he's been ploting then for the last 5 years).

Next local Heam appointment will get copies of jak 2 info.

[hunter5582]

I concur with take everything. All of your labs, reports, BMB results, and information about co-occurring conditions. The CBC and CMP results are particularly important. Every electronic medical record i have ever seen have the ability to produce a historic view, showing all of the CBC or CMP results in chart form over time. The results are much easier to review in this format. Depending on the patient portals in use, you may be able to forward electronic copies of your records yourself. Still take hard copies though.

Suggest that you also take a written agenda that includes all of the relevant issues and questions that you have. Take 2 copies, one for yourself and one to give to the doctor. This is the format that I use for the agenda I take to all appointments.

Treatment goals:

Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.

Treatment

Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.

Wishing you continued success with self-advocacy.

[Spanelmad in reply to hunter5582]

Thank you for the format it will be very helpfull .I'll trial it at my next local hospital appointment.

[Mostew]

Cant add any other advice. You will be listened to and feel confident you are receiving the best of care.

It's a pleasure to go there...

[Spanelmad]

Looking forward to the tests that you have all been talking by about especially the allele burden and the %jak2.

[Exeter21]

Just yourself . They will chat to you to see how they can help & do more tests. I was changed from Hydroxy to Interferon . 👌 Julia

[Lyndjs]

Great news, I'm so happy to hear you've got an appointment at Guys. Lots of great advice from the forum, too.

I hope all goes well, and I look forward to hearing all about your experience. Please keep us updated xx

[DeKa]

Dr Priya is awesome. She proactively communicates across other hospitals. You’re in the best hands. Good luck.

[Spanelmad in reply to DeKa]

I did some research after posting yesterday so I'm aware of her work with the Marsden

[lizzziep]

I’ve spoken to Dr Priya a couple of times, she’s very nice.

[Spanelmad]

Thank you that's adding to my confidence in getting the answer to whether this is marsked pv

[Gaithersburg]

I would just add that you should give them an up-to-date list of all medications and vitamins and their doses. Hope your appointment goes well.

[Spanelmad in reply to Gaithersburg]

Thank you for the vitamin reminder I always forget!

[Tyce500]

Hi, glad to hear you have an appointment with Guy's! Can you tell me how long it took to get from referral, I was supposedly referred in February but Guy's do not have any record of this? Will chase up again with my haematologist at Harlow hospital but just wondering .... thank you.

[Spanelmad in reply to Tyce500]

Hi, there was some apparent problems with the referral it was eventually done in January.

[Tyce500 in reply to Spanelmad]

Thank you!

[Wyebird]

take all your blood test results x ray and ultra sound results etc. guys is fantastic.