PAN / Vasculitis Chat

October 19, 2008

Participants:

Ed:     PSN Moderator
Jessica: PSN group member

Ed Moderator: Jessica...how the heck are you doing

Jessica: I am doing well - remission still holding. Good thing because of my new exciting demanding job.  Still counting blessings & still feel the future's so bright I gotta wear shades.

Ed Moderator: You said that one of the toughest things. When you were sick was just having others understand and to have sympathy

Ed Moderator: What was the reaction of your friends and family to the news that you had a rare disease. What was the reaction by friends and family to the news of your disease?   Did they believe you, not believe you, question? How hard was that when you needed them the most?Ed Moderator:

Jessica: Well for me it was different since all symptoms were mostly internal but severe. When I was first in hospital for 28 days, everyone knew it was serious. When meds started working was when people started questioning how sick I was.

Ed Moderator: Because you didn't look sick?

Jessica: They thought well she looks better so...she must be better

Ed Moderator: How hard was it to explain to them it's the nature of the disease?

Jessica: Only those closest me knew the truth & stayed loyal. As it went wider out in the circle did I see more people not understanding because I did not look sick.  Even now I get disbelief from people when I explain I'm in remission but not the same I was pre-pan.

Jessica: Well, thanks to the internet, Johns Hopkins, & of course this group I was able to get very educated very quickly.

Ed Moderator: Of course by now more family and friends have a better understanding of the disease. I mean, as you've learned more about it

Jessica: Most of my docs say I know more than their interns and usually leave them baffled.

Ed Moderator: Tell me about the experience when you were first told it was PAN - that moment? How did you process it?

Jessica: Funny thing is each specialist thought I was in that field in some way, rheumy, int med, opthmomology..  Ok, that was 7 months after presenting with symptoms the first time in July. The worst flare in Feb 2002. After angiogram showed aneurysms they diagnosed PAN & then I was told I had to be on cytoxan or die basically

Ed Moderator: Did your PCP give you the news or Rheumy?

Jessica: Specialist in the hospital gave the news because I was there for 3 wks after seizures, respiratory failure & renal failure. My mind in those 7 months wanted to believe I was misdiagnosed because they could not find out what was wrong. Then there was the problem of did I have Still's disease or vasulitis, or Pan or what. I had no prep to decide that by taking cytoxan I was giving up my fertility.  I was in no shape to freeze eggs for later use, etc.  That was the most heartbreaking for me.  Irrational since I needed to live first but that's how I felt at the time.

Ed Moderator: Was it worse to not know what you had, or when it was certain you did of unknown has to be awful scary?

Jessica: Absolutely not.  It was so much worse not to know.  I mean at first there is the relief, not cancer, not this, not that but... Then it was worse not to have something to fight against.  I wanted an answer, then when I got too many, I went into another mode.

Ed Moderator: What kind of mode?

Jessica: When they couldn't decide but narrowed down to autoimmune and treatments were similar, I felt resigned.The mode that even if this is all they can find I am now capable of getting over the fear, anxiety to fight the unnamed monster.

Ed Moderator: You knew there were options - that gives you some hope

Jessica: But it felt, in retrospect, that those stages are the normal ones to go thru to get to making some sort of peace to take action.

Jessica: Yes, but that did not mean trust in the medical field. Just that I was ready to find the right partners to join the fight.

Ed Moderator: And how did you find the right partners.

Jessica: The Internet, word of mouth, & most especially my tenacious spirit of inquisitiveness.

Ed Moderator: Wow. You typed that FAST and correct...impressed..:-))

Jessica: Believing that my future was not only in the hands of the doctors, but I had to have a proactive approach.

Jessica: Ha ha ha. I'm anal that way. I type fast but you don't even know that I also correct my typos before hitting send, lol

Ed Moderator: We know about the bad stuff, but what are the positive things you've experienced in the medical system since you have been treated for PAN.

Jessica: Gee, where do I begin? But of course with finding the group.

Ed Moderator: Good experience, good docs?  They do exist right?

Jessica: Also with Johns Hopkins, namely Dr. Regan.  He gave me the fortitude to understand there were diamonds in the rough willing to help genuinely.

Ed Moderator: Oh yeah, great doc.

Jessica: They most certainly exist. You need to be willing to not be complacent.  You need to be voracious in your quest for knowledge. Because it is the power to help you to the next level.  There will be docs who resent that, good, weed those out.  Don't just take it.  It is your life.

Ed Moderator: How did you present info to your doctors that you needed them to know. How to do it without turning them off?

Jessica: Sorry I get very passionate about this issue.  Too many people play victims, or are only used to following whatever they are told, and not taking the reins

Ed Moderator: Some have large egos you might have heard :-)

Jessica: Truthfully, I was fighting for my life so I did not care too much about stepping on toes. Those who had open minds, open ears heard what I had to say. I only got "nasty" with those who were condescending arrogant, etc.

Jessica: Most docs were happy that I went with a fully detailed synopsis of my med history, I also always take a spreadsheet of my drugs, dosage, refill info, and a complete doctor list with phone numbers.

Ed Moderator: It's probably natural to feel helpless at first...that you have no options.   That's where a good patient doctor relationship is key, isn't it.

Jessica: That is how I got into Hopkins so soon.  If I didn't already, I could email you a copy of the letter I sent to Hopkins the 1st time.

Ed Moderator: YES - please do -  in essence what did you say to Hopkins

Jessica: Yes it is important.  But I want this to have a balance too.  Patients need to check themselves as well.  When we are on strong meds (hello pred) our emotions are on a rollercoaster and we don't have the normal perspective normally would

Ed Moderator: Excellent point. Hell hath no fury like a patient on 60 mg of Pred

Jessica: It was a 2pg letter stating fact by fact, detailed report of what happened from the 1st moment to the time of the letter. Concise points of symptoms, willingness to send the med reports, no nonsense request for help.

Ed Moderator: Actually everyone who gets a diagnosis like this should do the same - keep some kind of journal/report...with lots of specifics.

Jessica: It's so hard because without the drugs, the emotions of fear, anxiety, and desperation all feel like too much when faced with all that we do.  I truly believe PAN- pals are heroes in the making.

Ed Moderator: Absolutely agree

Jessica: Actually I'm guilty of getting lax about journals since remission.  That's why I try to keep up w/group - to not forget, to support to ground myself.

Ed Moderator: Could we share the letter with the group sometime to make people think about what they too should be doing in terms of documenting.

Jessica: Absolutely.

Ed Moderator: Cool...well, I think this concludes a broadcasting day..:-))


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