Bob's Story

When were you (or loved one) diagnosed with Polyarteritis Nodosa? Do you have a particular classification of PAN (such as Classic PAN)?

Bob:

DIAGNOSED 1/17/00
I believe I have Classic PAN , Microaneurysms in renal arteries

What symptoms did you (or loved one) have prior to your diagnosis? How do you think you may have contracted PAN?

Bob:

I had been to Russia in 11/00 adopting our 2 yr.old.

When I returned my symptoms included feeling tired and suffering from nausea and other digestive problems.
On 1/1/00, I woke up @ 4:00am with pain so intense I went to hospital.

Blood pressure was in 200's. My Dr's did CAT Scan and other tests that showed necrosis in both kidneys (dead tissue from lack of blood).
Biopsy showed white blood cells in vessels causing tissue damage.

1/1/00 i was told I had a rare disease called polyarteritis nodosa.

What are some of my theories on how I contracted PAN?

1] Hepatitis B Vaccination 1996
2]Shingles 1990
3] Possible Virus From Traveling To Russia 16 Days In 1996 And 15 Days In 1999.
4]Stress From Job

How did you cope with the news that you (or your loved one) had such a rare disorder? What was the initial reaction from family and friends?

Bob:

I was thrilled i didn't have cancer until my wife and I pulled up more information and then I knew I was lucky to be alive but was in for a major life change. All my family was devastated but I kept reminding them that god would take care of the details , and I was a pretty strong candidate for survival[. I am "type a" and very competitive and there are those who would believe I'm to ornery to die soon"

Describe how your doctor gave you the news about PAN? Was he/she familiar with the disease and what course of treatment to follow?

Bob:

The Dr. was very somber and I was his 5th patient, he had only lost one.
He started me on 80mgs of Prednisone and 300mgs of cytoxan [daily] for 1st week. Then cytoxan reduced to200mg for next 15 months prednisone very gradually reduced over time to current level of 5mgs every other day and cytoxan still @ 150/day,

Describe some of your experiences with the medical community that has to deal with such a rare illness. What are the challenges and obstacles in getting information and the right treatment for a disease like PAN.

Bob:

Most of the info I received was from the web and some doctor friends. The PAN Support Group was by far the best.
I believe each case is different and I chose not to go to other DR's because I felt mine knew what he was doing.

I was also diagnosed very quickly which makes a huge difference as unchecked Pan is unmerciful.

What have been good and positive experiences with the medical community?

Bob:

My doctor is great .
No nonsense. Shortly after I was diagnosed I had a business lunch and being Friday I had a glass of wine . He smelled it on my breath and went ballistic that afternoon. I told him that I didn't consider "surviving" the same as" living" and that I planned on living.

We sort of bonded after that meeting, but I've scheduled the rest of my appointments in the a.m.
I have always felt my doctors really cared about me and my family.
The Dr. called my wife at home 2-3 times a during the first few weeks of treatment week to let her know i was going to make it.

What are some of the medications that you (or the patient) have taken or currently take. Describe side effects to these drugs and how you (he/she) handled it.

Bob:

Prednisone started @ 80mgs. I was a moody S.O.B., and became quite chubby.

After 2 yrs I'm down to [every other day ]5 mgs. I'm still 20 lbs over weight. cytoxan 2oomgs/day 1st 14mo ,150/day since .

I had 2 IVs when I first started but have no idea how much but i was sick to my stomach and did lose my hair[i resembled uncle fester with my weight gain } fatigue and joint pain were and are my biggest challenges.

How much has your normal life and routine been affected by PAN? What have been the positive and negative effects of your illness on your family.

Bob:

I went on disability 6 mo's after diagnosis and sold my business in may of 2001. Iconsider my Pan a blessing in the sense that I've spent so much time with my children. my wife and I also have a better relationship [it was good before pan] because we don't sweat the small stuff.
I try to rest when the kids are in school so i have the energy to hang with them when they get home.

What is the most difficult thing in dealing with a long term illness like PAN? How do you keep on fighting when things get to the worst point?

Bob:

When I feel good I play, when I feel bad I rest,everything else is left to my Lord and god seems to handle stress a lot better than I do.

How important is having a community of people like the PAN Support Mailing List in your recovery?

Bob:

I CAN'T IMAGINE GOING THROUGH THIS W/ OUT IT?