TITLE:  Chat with Lesa and Niki

DATE:  March 29, 2013

Participants:

Ed:                  PSN Moderator

Niki:                PAN Patient—23 years old

Lesa:              Niki’s mother

Ed Note:
 I first met Niki and Lesa in early 2001.   My organization, the Polyarteritis Nodosa (PAN) Support Network had been launched a year earlier to help support patients with this rare autoimmune vasculitis.


Lesa found the website and contacted me about her daughter, Niki who had just been diagnosed with PAN.
Amazingly, we lived only about 10 miles from each other in the northern area of Pittsburgh, PA.

Shortly thereafter, I was invited by Lesa to attend a party Niki was having where she was given a beautiful white piano by the Make-a–Wish Foundation.


My first and lasting impression of Niki was someone who took the adversity head on.   At the time, she was quite ill but you would never know it by her energy, and playfulness.


Niki receives a new piano from Make a Wish Foundation 


  Niki enjoys a cake with her mother, Lesa   

Through the years Lesa and I lost contact.  Truthfully, that is often a good sign that symptoms have eased, or remission has occurred. 

Late last year, Lesa contacted me about Niki’s reoccurrence of symptoms.  When I saw Niki’s picture I couldn’t believe how much time has passed—she was a vibrant young adult now.

Unfortunately, Niki is dealing with reoccurring symptoms and is seeking treatment to stabilize her vasculitis.

However, more burdensome are the incredible medical bills Niki has occurred over the last year or so because of her disease.  Although she now has medical insurance, Niki is trying to pay down the costs of her care that have built up in recent years.

Therefore,  they are sponsoring an event called, “Niki’s Run” that will be held on June 9, 2013.
http://www.facebook.com/events/152084198284012/

Motorcyclists will start at Knuckleheads at 146  Three Degree Rd. in Ross twp.  They will enjoy a scenic ride with several stops for refreshments before returning to Knuckleheads for more festivities, food, auctions & fun.


You don’t need to ride a motorcycle to attend, simply come to Knuckleheads after 3:00 and enjoy the rest of the day.
Those who live far away or cannot attend can send donations to:

 Nicole Foster benefit.  PNC Bank 50 McIntyre Sq. Dr.  Pgh., Pa. 15237


In the following interview, Niki talk about what it’s like to be seven years old and facing a rare, life threating, life-altering disease.
Lesa shares her thoughts about being a mother who suddenly had to navigate the medical labyrinth to get a diagnosis for her daughter.

I encourage you to participate in this exciting event, or to donate to Niki’s cause. 
Ed Becker, Director, PAN Support Network

Ed_Moderator:  Welcome to the PAN/Vasculitis Chat Room.  It has been quite a long time since we crossed paths. 

Lesa: Yes it has been a long time; it’s really nice to talk to you again.  You have been a huge help. Although under better circumstances would be better.

Ed_Moderator:  Let's go back a bit and start with the tough years.  Lesa, let’s talk about some of the early symptoms Niki exhibited when she was 7 years old.

Lesa: Niki had a problem gaining weight. She was often sick.  I searched all kinds of avenues but to no avail.  Her pediatrician ran every test he could think of.  It wasn’t until I saw that she was losing blood by vomiting etc., that we became very alarmed.  Niki was so pale with dark circles under her eyes.

Niki: I remember having flu like symptoms and then one day my mom noticed the blood and took me to the ER.  My stomach hurt so bad even to a light touch.

Ed_Moderator: This would have been 1998 or 99?

Lesa: 1999

Ed_Moderator:  Okay so how long did the symptoms go on?  Did you go from doc to doc?

Lesa:  The symptoms went on for over a year. Not the blood loss, but she was just getting sicker. We stayed with the same doctor thru that year. He was doing his best.

Ed_Moderator:  Were you with a rheumatologist during this time, or a general doc? 

Lesa:  No, he was a general pediatrician.  We noticed the blood and got shipped to the 3rd hospital in a row.

We went to Children’s Hospital in Pittsburgh.  We had a team of specialists.   There happened to be an adult rhumy named Dr. Brooks.  She is the one who made the diagnosis.

Ed_Moderator: And then I'm guessing they did a biopsy or some imaging tests?


Lesa:  Niki presented with a surgical stomach and they did an exploratory and then found the intestine which was dead and they took the biopsy confirming the diagnosis of Polyarteritis Nodosa.  We later got a second opinion at The Cleveland Clinic that confirmed the diagnosis.
 

Ed_Moderator:  So to you Niki---just tell me about what was going through your mind as a kid.   Going through this stuff...what were you thinking and feeling?

Niki:  I was so young and I was asking my mom if I was going to die.  I was so tired and so out of it.   It is all a daze--being in the hospital that is.

Ed_Moderator:  That’s pretty scary, Niki.    Lesa----from the mom's point of view.  What was going on in your mind at that time?  What was your reaction to find out it was a rare illness?

Lesa:   Before she was diagnosed, I was mad because she was so sick and in so much pain and no one had an answer. Dr. Brooks said to me, “sometimes no answer is better than an answer.” That is when I realized that I understood the severity of what she had.  I was devasted. That’s when I did some research and found the PAN Support Network.

Ed_Moderator:  Okay do you got the dx of PAN.   What treatment did you go on?

Niki:  I was on high doses of steroids, and other supportive medications.   And then Methotrexate, because the steroid side effects were so bad.  

Ed_Moderator:   Now Niki...did you go into a remission in the years following treatment...leading up to May 2012?  How were you in the 5-9 years after treatment began?

Niki:  In between say 1999 and 2012 I was diagnosed  with shingles.  Other than that I had no known relapse. Well,  except one time I forgot in 2005.

Ed_Moderator: By the way, who is your rheumatology now?

Niki:   I do not have one

Lesa:  Niki was without insurance for a long time. 

Ed_Moderator:  Okay, so in May of last year you started into relapse.   What has been happening over the last year, Niki?   Are you getting any treatment for it?

Niki:  It started late April.  I felt sort of  sick.  A flu that wasn’t too bad, but bad enough to effect me.   I had a stomach ache.  One night I just simply had a gut feeling something was wrong.  The joint pain (joint pain is always a symptom for me) so I drove myself to the ER.  
My  levels were off,  but the thing is a few weeks before they were normal. Other symptoms months before like some occasional belly pain sharp, but blood work was always okay.

Ed_Moderator: Have you been in any treatment since last May?

Niki:  I was on steroids after that relapse.  I took myself off them in July because  of the side effects and the cost.

Ed_Moderator:  Lesa...from the mom's standpoint...here you are with Niki no longer a kid, but you must still ride the roller-coaster as this goes on.

Lesa:  She is no longer a child, but it hurts all the same.  You never stop worrying about your children.   Let me tell you about this girl’s tolerance. I have never seen another human being take the pain level that she has. It’s unreal.

Niki: The pains everyday aren’t something I like to complain about but is a lot to deal with---I will not lie.
Also the PAN  has caused my tolerance for pain to go up causing it harder for me to notice what it all means and if I should go to the ER.  It is so hard knowing that a simple head ache cold mean terrible things.  This disease is very scary.

Ed_Moderator:  Okay, so let's focus now on this event called “Niki’s Run”.  Tell me how the idea for this fundraiser came to be. What is the goal or the hopeful outcome of this event.

Niki:  I did not have insurance until recently, my hospital bills are huge. I need to get this monkey off my back.

Ed_Moderator:  Sure. Totally understandable—and not uncommon either.  So the goal of the fundraiser is to help raise monies to offset the cost of your medical  bills.

Lesa: Yes, exactly.   And to help raise awareness about PAN and Vasculitis.

Ed_Moderator:   Tell me about the idea for a ride.   How did it all come together?

Lesa:  Many of my friends are bikers (motorcycles) and  many of them have put on multiple bike benefits before.  Niki needs out from under the weight of medical bills and my friends are happy to help. Which is one of the reasons we love them endlessly!

Ed_Moderator:  Thank god for good friends.  Tell me about the actual event...is it a sponsorship where you pledge for so many miles?  How does one donate?

Lesa:   It is a donation to go on the motorcycle run or to attend the festivities after the actual run.  Not a sponsorship.   There will also be a Chinese auction, food, music & fun..  

The donation includes a buffet style dinner.

Anyone can donate to:  Nicole Foster Benefit   PNC Bank   50 McIntyre Sq. Dr.  Pgh, Pa 15237