Re: Newly diagnosed with lupus to Reon

[Guest guest]

Hi Reon,

Welcome to our group!

I'm a 23 y/o white female diagnosed w/ lupus nephritis (diffuse

proliferative) 2 weeks ago, and joined this group 1 week ago. I've

already found this group to be a fountain of knowledge, support, and

understanding. Feel free to ask any questions you may have, or to

vent, surely someone will have a response for you.

Take care,

> Hi, my name is Reon Pelser, I am a 33yo White male living in

> Irvington NY.This is kind of my introduction speech into the group

to

> tell you about my experiences

> I also happen to be a physician in radiation oncology-3rd year of

> residency. I was born in South Africa and played professional

tennis

> for years so I was quite an active person.(not any more)

> Well that all changed on 21st March 2003. I had been getting

> abdominal pains for 2 days and thought I might have an ulcer. On

the

> 3rd night of no sleep and this feeling of a metal ball clanging in

my

> abdomen had gotten too much. I went to see my gastro who ordered a

CT

> scan of abdomen and pelvis, which revealed a totally thrombosed

left

> portal vein.( Takes blood to your liver). This was a late Friaday

> afternoon, around 5:30 PM and before the CT I urged my Doc to let

me

> go home for the weekend and carry on with testing on Monday. He

> literally told me that if I had done that I would not be here

> today.Even with medical attention he said my odds were 5% to make

it

> through the weekend An ultrasound was performed next which

confirmed

> the PVT with no flow through it.They imediately started me on IV

> heparin, said it would take about a week to get out of hospital

> until they converted me to coumadin.Well as it so happens during

that

> week they tested my blood completely for lupus etc, full body

MRI'd

> me looking for cancer but nothing showed up. Except asevere line

> infection giving me bacteremia. I was placed on anti-biotics and

went

> foe an endoscopic ultrasound of my heart. All clear. Just as I was

> about to leave the hospital 2 weeks later, another line infection,

> more anti-biotics.

> Having been in the hospital now close to 3 weeks, guess what, a

third

> line infection and another ultrasound on my heart. This time

positive

> for endocarditis. So now I had to go on long term anti-biotics,

more

> time in hospital. During the course I also had sepsis. The nurses

> werent too happy with me because my lines would blow in a matter

of

> hours, so I had a portacath placed. Solved a lot of things, I was

> able to go home and give myself the rest of my anti-biotics.The

day

> before I left I experienced severe joint pains in my hands,

elbows,

> shoulders, feet and knees. A rheumotologist came to see me and

> classified it as reactive arthritis from all the drugs I was

taking.

> Just as an aside I was on a whole lot of narcotics for my

abdominal

> pain and continued them at home.

> Ah, 5-2-03 and I left the hospital with my fiance.During tne weeks

my

> arthritis got much worse, holding onto walls, crawling to make it

to

> the toilet, getting up was no easy task either. So there I was

laying

> in bed in constant pain tring to make these narcotics work for

me.My

> PCP, hematologist changed regimens to no avail. Eventually I spoke

to

> A college and recommended a rheumatologist at another hospital and

> off I went. He took one look at me and I could see the concern in

his

> eyes. I was wasting away with no appetite and minimal exercise, he

> looked at my fingernails with a magnifying glass and said

Raynauds.

> From my medical training my mind started to spin, my fiance was

with

> me and I began to cry which only confused and scared her even

more.He

> did his routine physical asked me questions and said it appears

you

> may have lupus. That word was like a death threat to me,

remebering

> all the lupus patients on dialysis in my former training. This

time I

> held back the tears.He took a barrelful of blood and told me too

see

> him in 2 days. Depression struck which again scared my fiance. I

was

> born and raised in South Africa and no members of my family lived

in

> the states, still dont, and I had just left aworld of friends

behind

> me in Birmingham, so my social support rested on my fiance.Well 2

> days passed and I was shown the results. Positive anti-cardiolipin

> antibody, great now I had to take coumadin for the rest of my

life,

> POsitive forSm antigen, together with the Raynauds, mouth

> ulcers ,fatigue, insomnia,migraines, joint pains, I was diagnosed

> with lupus. I went to 2 more specialists and the verdict the same.

I

> rate my official diagnosis to be 6-16-03. My fiance read up on

lupus

> and after about a month and a half later said good bye to me and I

> really havent spoken to her since, she just disappeared, this all

in

> the face of her moving from Alabama, selling her house, leaving

her

> friends to be with me and now she was gone.Great now no support

either

> Thankfully I was started that day on disalsalate(NSAID)and

plaquenil,

> and of course I had to wean myself off all those narcotics that

did

> nothing for inflamation. A week passed and I was in and out of bed

> with little pain, and walking once round a track. Since then I

have

> had aflare up with my joints and was placed on steroids witha 3

day

> sick leave

> It is now November and all sorts of things are happening to my

body.

> Over the past 3 weeks I have bowel problems, pain, the runs,

stopped

> up. I am due for a colonoscopy under anasthesia on the 19th.

Chronic

> fatigue has taken over my life, a walk to my car is now a

marathon,

> headaches everday. So tired but unable to sleep, insomnia till

4AM,

> and then that alarm goes off at 6AM. Afternoon naps are my only

> saviour. I have been placed on paxil which seems to be working,

but I

> still have no appetite, which is tough considering the medications

I

> take.To date the last 3 weeks have been the worst.

> So this is my story, anyone willing to share experiences please do

> for I am at a loss. To live life like this is miserable. Even

harder

> is to make people at work understand. Desperately seeking advice

> A fellow Lupie

> Reon