February 7, 2018
We asked TTP Clinical Specialist Nurse Ros Newton about what patients should expect after leaving hospital and beyond:
How often should patients expect to be seen once they leave hospital and what tests should they expect?
Post your acute episode you can expect to be seen at least weekly for a few weeks, this generally depends on how you are, what medication you are on for your TTP, and what your Adamts13 is.
As your Adamts13 recovers to your normal level these visits will be extended gradually to be 3-4 monthly. Over time if you need no further treatment the time in-between clinic appointments might be extended further.
You will be discharged with a normal platelet count but you will likely still be receiving treatment for your TTP. If after you are discharged you still need to complete your course of Rituximab this will be done in an outpatient setting, you will be there for half a day while the Rituximab is infused and can go home after, you will have blood tests done and normally see a member of the TTP team.
After you have completed your course you will be attending clinic appointments, where you will have a blood test first and then see the TTP team. During this time you will see a doctor, your CNS and should have access to a psychologist who specialises in TTP.
You may be discharged home still needing capla injections. You can either learn to self administer these or a family member or friend also can, as well as district nurses. During your clinic appointments decisions will be made about your TTP treatment.
What should patients abstain from when in remission?
There is nothing specific you should abstain from. You will need to be guided by how you are feeling but returning to normal life post treatment is the ultimate aim.
What nuggets of advice would you give to patients post episode?
It is very common to experience low mood/anxiety post an episode so remember you are not alone, and this is not something you need to deal with on your own. Speak to your doctors and nurses, there is psychological help available and many patients access these services either for a short time post episode or some find them helpful longer term.
Accessing the patient support network (TTPNetwork) can also be a great help.
Join in on groups/fundraising; having a rare illness can feel isolating so coming to patient days or the Bridgethon can help you feel part of a wider community of people who know what you’ve been through
Take things slowly and listen to how you are feeling but doing a little more each day to return to normalcy helps!
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