Re: Kris from W-auto immune diseases

[Guest guest]

Kris,

glad to be of help. Unlike most autoimmune diseases, the antiphopholipid

syndrome (APS) is very easy to diagnose. There are two antibodies and you can

have either one or both with APS. They are the lupus anticoagulant (and you can

have this and not have lupus) and the anticardiolipin antibodies. I have the

lupus anticoagulant and my daughter and sis have the anticardiolipin antibodies.

The blood tests are not cheap, but at least the clotting disorder can be

diagnosed easily. In my daughter's case, the rheumatologist was sure that it

wouldn't show up when she tested her because she was only 21, but she told her

that she would continue to test her into her 30's because it often doesn't show

up til your late 20's or 30's. Suprisingly, it showed up the very first time

they tested Nikki. So, now we know she will have to be watched very closely

when she is pregnant and probably have heparin injections to keep her from

forming clots in the umbilical cord and placenta. She and her husband (newly

married May 29th) plan to start trying to begin their family shortly after she

finishes her master's degree next May and they want her to be through having

babies by the time she turns 30 because of her health issues. She says she

wants 3 kids and he says 2.5 kids - he's majoring in accounting (two classes

this fall and graduates in Dec) so he says they have to stick with the averages

and have exactly 2.5 kids! He's a nut and we love him soo much! I have a

feeling when Nikki realizes just how much energy it takes to raise little ones,

she'll decide two is plenty! Who knows though, she may stick to wanting 3. She

insists that if their first two are boys that they will adopt a little girl from

China, because she says she will love having boys but she absolutely has to have

at least one daughter! Ha! If her daughter(s) are as moody as she was, she's

got her work cut out for her! I am so proud of her, though. She has matured

into the most awesome young woman I could ever imagine. She was rather indulged

throughout her life. Christmas and birthdays meant lavish gifts and lots of

them. However, I made her pay for a lot of the things she wanted from a young

age. At 10, we started giving her a clothing allowance twice a year because I

wasn't going to argue with her about her jeans coming from the Gap vs Walmart!

She's always liked the finer things, yet she also knew how to save for a goal.

She lived on a pretty tight budget her last two years of college because she

decided her part time job at a large bank was interfering with her grades. She

did quite well making ends meet and I think it was good for her to learn to do

without. She had a yard sale at my house this past weekend and made $100. She

was so excited later that evening when she told us, " My husband said I can use

the $100 to buy clothes for school! " It was so sweet that she asked his

approval before spending the money and she was perfectly okay with getting his

approval. She's getting a masters in education so that means she is in the

classroom one day each week this semester and then every day next semester while

she does her student teaching. She's got to have clothes that are appropriate

for a teacher. They are trying to be frugal because they want to move to this

area as soon as Nikki graduates in May. They are also saving toward knowing

that her car will have to be replaced before long. When they got married, she

told she wanted him to take care of the bills and finances because she

had trouble even remembering to pay the phone, cable, and utility bill each

month!

I had told Nikki that she'd probably have to get a night/weekend job when they

move up here so that she can be available as a substitute teacher, since

teaching jobs are hard to come by in this area. She said that's what she

planned to do. When I said something to , he said, " No, that will be

too hard on her. I'll make sure we can make it on just my salary and what she

makes substituting will just be a bonus. I don't want her working nights and

weekends and then substituting during the day. She can't handle working that

many hours so I'll see to it that she doesn't have to do that. " He is just

barely 22 years old, yet he accepts her health issues and the fact that without

insurance her medications are $500 a month. He knows that any job he accepts,

he'll have to consider what type health insurance they have before he can accept

the job. Thank goodness for the new HIPA privacy law. It has provisions that

say that you cannot exclude pre-existing conditions if the person has not gone

more than 60 days without insurance. So, that means that when they got married,

's insurance had to cover all Nikki's pre-existing conditions because

she had other insurance coverage prior to them getting married. the same thing

will hold true when changes jobs. This kid is very healthy, believes

in eating right, exercise, and so on, yet he totally accepts that Nikki has

health issues and it's entirely possible they will get worse as she gets older.

Boy, I totally got off the subject! Can you tell I am proud of and love my

daughter and son-in-law?

W

alabama

W-auto immune diseases

Thanks !!! That was some great information you wrote. I also

read that if you have one auto-immune disease then you have an

increased risk of having another. My current concern is that the

celiac gives me a high risk of developing diabetes type 2 and with

the CP that just adds to the mix. I am going to bring this up at my

next doctor appt. and see what he says. I also plan to start

testing my blood sugar levels on a weekly basis too. Funny that you

mention about the one auto-immune disease (APS), and blood

clotting. I was diagnosed with a DVT in 2000 (blood clot behind my

right knee). I wonder if it had anything to do with such a

disease? My cousin has a blood clotting disorder too and will be on

coumidan for the rest of her life. Hers is not APS though. I can't

seem to remember the name of it right now. Anyway, wanted to thank

you again for all the great information that you shared.

Take care

Kris in TN

[Guest guest]

,

It's perfectly ok to go on and on about your daughter!!! Actually

you took my mind off the pancreas and other stuff for awhile

anyway. It is nice to talk about something other than panc problems

every once in a while. I think we all need to hear about members

families and daily activities too. It helps me to get through some

tough days too.

About the APS, my cousin has the anticardiolipin (sp?) antibodies.

She suffered a stroke when she was 34, luckily she has recovered

well but has to deal with seizures and stay on coumadin. When I had

the DVT (deep vein thrombosis) I was also 34. I made my mother call

her sis and ask what the name of the disease that my cousin had. My

doc ordered the test right away and I was also tested for lupus.

Everything showed normal luckily.

Hope you are having a good day today.

Take care

Kris in TN

[Guest guest]

Kris,

the anticardiolipin antibodies cause exactly the same problems as the lupus

anticoagulant and both cause the antiphospholipid syndrome. Since you have a

relative with the disorder and you've had a blood clot yourself, please make the

doctors test you for both the anticardiolipin antibodies and the lupus

anticoagulant periodically because they just might not have shown up when you

were first tested. If I remember correctly, you are a lot younger than me (I'm

43).

I'm glad your cousin is doing better. I've been on coumadin since Sep 02, only

2 months after being diagnosed with the antiphospholipid syndrome. I firmly

believe that if I had not been on coumadin already, my mine strokes (TIAs) would

have been full blown strokes!

take care,

W

alabama

[Guest guest]

I guess we're on line together !!! Thanks for the info , again. I

will bring it up to my doctor next time I see him. I never thought

to be retested but hey, it's worth the blood test to make sure.

I need to get some sleep..

Take care

Kris in TN