Tag Archive for: MPN Care Partner

MPN Patient and Care Partner Share Tips for Communicating With Your Care Team

MPN Patient and Care Partner Share Tips for Communicating With Your Care Team from Patient Empowerment Network on Vimeo.

MPN Care Partner, Jeff ,and Summer, who is living with myelofibrosis, share how they communicate with Summer’s care team. Jeff shares how important it is to develop a relationship with your care team and find what communication method works best for you.  

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Transcript:

Summer:

Oh, Jeff. I’m almost out of my Jakafi. I have to get some more.  

Jeff:

Well, I guess we’ll have to give Dr. Tanaka a call, right? 

Summer:

Hi, I’m Summer. 

Jeff:

And I’m Jeff and we’re here to talk to you today about communicating with your health care team, and it’s very important to develop that relationship. Tell folks about our health care team, Summer. 

Summer:

Yeah, we’ve got a great one. We have my doctor, Dr. Tanaka, the nurses and the specialty pharmacy that takes care of my Jakafi. Should I explain about that? 

Jeff:

Yeah. 

Summer:

Okay. The pharmacy lets me know when I need new medication. It tells me when it comes in. I’ll let them know when I’m going to pick it up. They even offer to deliver it but I don’t think it’s a good idea to have expensive drugs delivered to your porch. So of course, I pick up. It’s no big deal. 

Jeff:

And why do we have to use a specialty pharmacy instead of going down to the local pharmacy? 

Summer:

Because they have more time and they really keep track of everything. They let me know if there’s a change, they have a question, everything. I really trust them. And they always tell me when the medicine comes in. And if it seems a little late, they call and let me know. 

Jeff:

The way we communicate these needs is great for us. Every one of you who has a health care team is going to have a different way of communicating and you really need to learn to use it. We’re very fortunate. We use the University of Southern California health care system here and they have a portal online. They call it the patient portal. It’s called My Chart. And you can send messages to the doctor and your health care team, they can send you messages, you can request refills on your prescriptions there, and you could also make appointments and you can view your test results. Summer, you get a test often, right? 

Summer:

Once a month. 

Jeff:

And so, we go in and get that, and within the afternoon they usually have our test results and we can look at them. So, we’re very fortunate. If you have one, if your health care organization has such a system, learn to use it. That is your prime communication way of communicating with your health care team. You may be in a location where you can’t do that, they don’t have such a fancy thing, or your cancer may not require that kind of communication, but whatever way you develop learn to use it. It’s really important to develop a way to communicate with your team. And that’s pretty much it for our subject this month. Till next time. I’m Jeff. 

Summer:

I’m Summer. Bye. 

Jeff:

Bye. 

Managing MPN Fatigue During the Holiday

Managing MPN Fatigue During the Holiday from Patient Empowerment Network on Vimeo.

MPN Care Partner and Patient, Jeff and Summer discuss how to manage fatigue during the holiday season. Summer tracks her and ensures she’s walking daily. Jeff shares to never overschedule yourself and make sure you prioritize your rest.

Transcript

Jeff:

Hi I’m Jeff. 

Summer:

Hi I’m Summer and this is Zelda. Say hi. Say hi, Zelda. 

Jeff:

And we’re your Patient Empowerment Network Leads for the myelofibrosis blood cancer, myeloproliferative neoplasms. And we’re here to talk to you today about fatigue. Oh my gosh, Summer, we’ve got improv in half an hour. 

Summer:

We’ve got two Starlighters parties. 

Jeff:

And we’ve got a Christmas party on the 11th. 

Summer:

And we’re going to go to a concert and the Nutcracker Ballet. 

Jeff:

All of those things happening during the holiday season. 

Summer:

And Christmas shopping. 

Jeff:

Oh, Christmas shopping, I forgot. That’s exhausting. Are you going to be able to handle it? I know fatigue is a real symptom of it, of myelofibrosis. 

Summer:

Well, it’s a symptom of it as long as you handle it. But I always get eight hours sleep and on my phone, my Apple Watch records my sleep. And I get a 100 sleep score. And it makes a huge difference. Plus I go to the gym and I do exercise and walking for one hour every day to get my 10,000 steps. 

Jeff:

And the exercise helps with your fatigue? 

Summer:

Yeah, it makes me tireder. Of course. 

Jeff:

So, you sleep well and you track it so well. She’s even got me tracking my sleep and I don’t have myelofibrosis. But we check in with each other to see that we get enough sleep. And we’ve also adjusted our schedule, haven’t we? 

 Summer:

Yeah, we have our performances at our theater a lot more matinees which is good because older people, no matter what, like to do things earlier anyway. 

Jeff:

So, we’ve made significant adjustments in our life to deal with the fatigue portion of myelofibrosis. And we’ve made even more in this holiday season by scheduling things correctly and doing what you’ve just described. 

Summer:

I mean, at 1:15 we’ve got a rehearsal, improv rehearsal. Then we have people that want to check our theater. Then I have another comedy rehearsal and Jeff has a guitar singing rehearsal. 

Jeff:

We would encourage you folks to do the same thing in this holiday season. Don’t over schedule yourself. Get enough rest and have a happy holiday. Bye from Jeff. 

Summer:

Bye from Summer. Bye from Zyada. Say bye bye. 

Jeff:

We’ll see you next time.