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Participants:
Ed: PRSN Moderator
Deanna: PRSN group member
Ed Moderator: Hello and welcome to the PAN Network Chat. Hello Deanna. Since this appears to be just us I'd like to do some Q and A. Have you share some of your thoughts and experiences with PAN. May I share it with the group?
Deanna: Certainly
Ed Moderator: Nothing formal, but just want to ask you about living with PAN. And if you don't want to answer - no worries.
Deanna: Ok, this will be fun. He he
Ed Moderator: Nothing personal - I promise!!
Deanna: I'm an open book, anything to help - even personal
Ed Moderator: Starting at the beginning of your story...
Deanna: This has been my life
Ed Moderator: What symptoms did you first get, the first ones that made you say something is not right and share your age at that time and the year
Deanna: Well, during the pregnancy of my last child, I kept having what they said were kidney infections. I kept spilling blood and protein from my urine. yet, nothing ever grew on the cultures...I had high B/P and ended up with pre-clampsia they finally had to take the child emergency c-section because I started seizing after which I kept having high b/p then started having the most awful rash started on my legs and finally all over my body even bottom of feet and hands...it was very painful.
Ed Moderator: How long did it take for this rash to spread all over?
Deanna: The docs would hospitalize me for allergic reaction to infections, nothing seemed to help or cure the rash. I had terrible muscle and joint pain along with still spilling blood and protein. My urine was the color of coffee. The rash started within day after delivery and took about 2 weeks to spread all over.
Ed Moderator: Wow, so what's going through your head at this point?
Deanna: I lived like this for months going to doc after doc. Finally a little ol' country doc said I wasn't having kidney infections because nothing grew on cultures. He actually read my records. He sent me to a nephrologist (kidney doc). I had one doc tell me people pee coffee color and no big deal about protein and blood. Another doc said I was depressed. Deanna:
Ed Moderator: From when you exhibited the symptoms to when this country doc got you. How long approx
Deanna: I actually committed myself into a psych hospital for evaluation of depression.
Ed Moderator: understandable
Deanna: It took almost 2 yrs to get to a kidney doc. by this time I had been to all kinds of docs and we had transferred a couple times. The kidney specialist was in Tyler TX.
Ed Moderator: and had your symptoms gotten much worse?
Deanna: He was wonderful. He decided to do a kidney biopsy. He actually said, I'm going to check you for something that there is no way you can have because you don't fit the profile.
Ed Moderator: So he at least had a clue to go on!
Deanna: Low and behold was he surprised when the biopsy showed PAN
Ed Moderator: So how about your symptoms up to this point. I imagine it only got worse in two years.
Deanna: He really thought I had Lupus that wasn't showing up in blood work. yes, the joints, muscle, malase, kidney, fatigue, vomiting, stomach aches, rash...see, I hadn't had any treatments, I just kept getting worse. It took a country doc to say there was a problem and it was probably autoimmune.
Ed Moderator: Tell me about the experience of him telling you that you have this rare disease.
Deanna: It took a biopsy to confirm. They immediately started high doses pred and cytoxan.
Ed Moderator: How did he tell you...what did he say? And what was it like to get this news.
Deanna: Umm, I really didn't understand it. There was so little info out there and even less explanation. I was a young mom with 7 kids, I thought that since I was diagnosed that I could take pills and all would be better.
Ed Moderator: Did he seem to have knowledge of PAN?
Deanna: Not really, he tried to explain it to us, but he knew very little. He didn't even send me to a rheumy.
Ed Moderator: How did you deal with being a mother too? What a challenge!!
Deanna: You need all the help and support you can get. It was so hard. I tried to act like everything was fine, I went through the motions but I'd finally "fall out" and end up in a hosp. My husband transferred again, so had to change doc. My kidney doc set me up with a rhuemy in Sherman TX. This guy said I had MPA - another diagnosis - uhhggg
Ed Moderator: I can't imagine trying to take care of family and also wondering what's happening to you
Deanna: another explanation, by this time, I couldn't work anymore. I tried SSD, but didn't get approved, so decided to go back to work, with PAN, Vasculitis, MPA, chronic glomnurel nephritis...7 kids, and hubby... The rhuemy told me to stop over reacting, it's no big thing, just deal with it, take the meds live life the best I can and learn to manage my disease...it was at that time that I found PAN Support org, I so needed our group. A lifesaver, more than you'll ever know
Ed Moderator: No big deal, huh?? Tell me more about how your family and friends reacted to you during this time
Deanna: Yes, no big deal, manage my disease, while taking pred and cytoxin IV treatments
Ed Moderator: Did they believe it was real...did they question how did the disease affect your family and friend relationships?
Deanna: My husband at the time was so concerned about the money. The kids didn't understand why momma was so tired all the time. My family and friends just thought I was stressed.
Ed Moderator: That's really the worst, isn't it? When the people you love question your motives. (At this point we experienced technical difficulties. Our conversation continued a bit more the following week)
