Genny Pogar Johnson is 34. In 2011, she was diagnosed with a rare chronic Leukemia, Myleofibrosis. The only cure is a blood or marrow transplant.

Genny is a patient here at Presbyterian-St. Luke’s. She and her mom Ann have been working with our blood or marrow transplant team since August 2011. And I do mean “working with.” Genny and Ann are great examples of what it means to be active participants.

There’s been a lot of discussion this week about the importance of patients and their family members being engaged in their care alongside nurses and doctors. It’s a crucial component of patient safety.

(For updates on Genny to learn how you can help others who need a blood or marrow transplant, visit Genny’s Hope Foundation. They have also set up a Facebook page. They are working hard to raise awareness and increase the list of donors.)

We asked Ann if she would share some of their story with us on the blog. Here is that conversation:

Tonya: This year, the theme for National Patient Safety Awareness week is “Be Aware for Safe Care.” It’s easy to think that this theme is for healthcare providers like nurses and doctors only, but it speaks to patients too. As someone who has recently spent time on the patient side of healthcare as a caregiver for your daughter Genny, what does this theme mean to you?

Ann: Well, it’s certainly important, as a patient or family member of a patient to be aware. Genny was aware of her own safety.  I mean she went into a transplant, a stem cell transplant, knowing that her life was at risk if she didn’t get the transplant.  She also went in knowing that there were things that she needed to take care of through the transplant process if she didn’t reduce her risk of disease, of you know, contracting an illness.

If a member of the medical profession showed up in the room without gloving up, she would look at me and sometimes even comment and say, why isn’t that person in a gown or gloved up? Because she knew, based on the caregiving class we went through at Presbyterian-St. Luke’s, conversations with the hospital staff and personal research, that the rules were anyone coming into the isolation room, had to wear a gown and had to glove up.  She also was her own self-advocate, letting her family members know they couldn’t come in without a gown and gloves.  And if she suspected they had any type of sniffles, they weren’t allowed in the room at all.  So she didn’t really need the doctors and nurses speaking up for her on that, she spoke up for herself very well; as did I.

Tonya: What are some of the things you do in the hospital setting to ensure that you’re engaged as an active participant? What advice would you give to others?

Ann: Ask questions. I was involved in all aspects of her care and safety.  With her disease, she has tremendous bone pain and then as she was starting to engraft, the bone pain got even worse. So, she was on a heavy drug regimen to keep her comfortable.  And I felt that it was time to start drawing her down off the drugs, that were keeping her so doped up. So, I worked very closely with the palliative care doctor and said I want a plan in place to get her off these heavy duty narcotics and see what we can do to help her breathe through her pain. And we worked together.  We found a happy medium.  She was almost comatose, she was out of it, so she couldn’t have even hoped to have participated in that conversation because she was so drugged up.

Tonya:  And it sounds like you felt that your thoughts, your opinions, they were received well, and they were listened to.

Ann:  Yes, I have to tell you I have nothing but good things to say about Presbyterian St. Luke’s Blood and Marrow Transplant process and facility.  They have a top notch team and everybody was very concerned, very involved and worked with me as a team member.  It was a wonderful experience, quite frankly for a very scary thing to go through.

Tonya:  What are some of the things you’ve seen hospitals do well to facilitate an environment that encourages patients to be active participants in their care?

Ann: Oh gosh, there were so many things.  If you just look at our time at Presbyterian-St. Luke’s, for example, when the physician assistants and the nurse practitioners would come in in the morning, they talked to both Genny and me.  It wasn’t like when you go with a patient to a doctor’s office, normally the doctor doesn’t look at you at all as the caregiver. But they involved me in the discussion, they talked to both of us, they answered all my questions.  When I challenged them, they were good about responding to my challenges.  I mean I slept in the room so they knew who I was.  It was kind of hard to avoid me.

(laughter)

Tonya: How is Genny doing today?

Ann:  She’s doing really well.  She is, I think day plus 39 post transplant, and the first 100 days after transplant are the riskiest.  She still goes to clinic three times a week and she lives in an apartment close by to the hospital but she can’t go home yet.  But she is doing really well and she has the best doctor in the world, Dr. Mark Brunvand. We just adore him. He’s wonderful, and he’s been her doctor since last August.

Tonya: Ann thank you so much for taking the time to talk with me.

Ann: Thank you.

 

Be sure to visit Genny’s Hope Foundation as well as their Facebook page to learn more and find ways that you can help increase the number of bone marrow donors.