Recent diagnosis

[Guest guest]

----I have another question or should I say I am wondering what

to do. Maybe just need an opinion. So far my Iga has been okay. I was

diagnosed 19 yrs ago, but probably had it longer than that. Anyway so

far I have hi BP and my cholesterol is high. I get restless legs and

I think maybe my urine is somewhat foamy, and retaining some water

and fatigue. I have an appt with my nep May 4. It has been two years

since my last appt, otherwise I was pretty regular. I started college

almost 2 yrs ago and it hit me yesterday, maybe I shouldn't be doing

that because of my Iga and the unknown. I thought, what if my kidneys

fail, then here I am stuck with all the student loans to pay back and

not even a job. I never really took this Iga very seriously. I just

figured since I am okay that nothing will happen to me. My neph

always told me to watch my salt and I never paid much attention it

it. I do take my BP meds everyday tho. Am I over reacting about my

future? I am amazed at the great comfort and warmth everybody shares

with each other. What a wonderful support group!! Thanks for being

there for people!! Laureen

In iga-nephropathy , W4JC@a... wrote:

> Hi ,

>

> I stayed pretty stable for the first 25 or so years, but the past 5

have become more challenging. I am currently down to 18% and will

need intervention (hopefully a preemptive transplant) probably in the

next year or so. I am very blessed that my IgAN stayed stable while

I was raising children. It was after my youngest left for college

that I started having significant challenges managing my IgAN.

Still, I look at my IgAN as a blessing because I know I have a much

greater appreciation of life in general, and of my loved ones too

that I probably would not have had without having IgAN. God has

brought more blessings than challenges that is for sure.

>

> I hope your daughter remains stable for decades to come! As long

as her labs remain good and you are able to keep her BP stable, she

should last a long time, and hopefully be one of the majority who

have a benign form of IgAN and never reaches ESRD.

>

>

>

>

> In a message dated 4/7/2005 10:15:14 AM Eastern Daylight

Time, " llinst " <llinst@y...> writes:

>

> >

> >

> >-Hi . 30 years! WOW! How has your Iga progressed? I got the

> >results yesterday about my daughter and so far so good. They

didn't

> >find any abnormalities. What a relief! The only thing we need to

> >watch as of now is her BP. So now is the time to really limit t

>

> he

> >salt in my home! Thanks for your prayers! Have a good day. Laureen

> >-- In iga-nephropathy , W4JC@a... wrote:

> >> Hi Llinst,

> >>

> >> You sound similar to me except that I have had IgAN for 30

years,

> >but

> >> I did have two daughters. What a blessing to get to raise two

> >daughters!

> >>

> >> I am so sorry your youngest is symptomatic. I know it must

break

> >your

> >> Mother's heart to see your daughter has HSP. I am thankful the

> >> Pediatrician was insightful enough to check into it and take her

> >> symptoms serious. Please let us know when you get her lab

results

> >back.

> >>

> >> I too believe that IgAN can be hereditary. My oldest sister

also

> >has

> >> IgAN, although a very mild case compared to mine, and my

paternal

> >> grandmother died of kidney disease in the 60s.

> >>

> >> I pray you get good news on your daughter.

> >>

> >>

> >>

> >> Re: RECENT DIAGNOSIS

> >>

> >>

> >>

> >>

> >> -Hi. I am a very recent new memeber also. I thought I would

share

> >my

> >> experince with pregnancy with you. I am 42 and have had IgaN

for 19

> >> yrs. I have had two daughters within that period. I wasn't sure

> >> either if I should get pregnant. I was told from DR's. at the

Mayo

> >> Clinic and also a Gyn not too. Since I couldn't get pregnant

> >anyway I

> >> had to take fertility pills. That worked. My first daughter was

2

> >mos

> >> premature however she is just fine. Shes 15 now. Whether the

> >> prematurity was due to the IgaN-I don't know. I figured I

couldn't

> >> get pregnant again so my second daughter was quite a surprise.

She

> >> was full term and perfectly healthy although when she was 4yrs

old

> >> she has HSP and I am currently at this moment waiting for lab

> >results

> >> for her kidney function as her(shes 12 now) BP has been

elevated

> >and

> >> there was protein in her urine. It was just by chance I had her

in

> >> for a recheck on her ear infection and noticed her BP and

explained

> >> to the DR (it wasn't her regular Ped, and her reg Ped didn't

seem

> >too

> >> concerned about my concerns when she had HSP and my IgaN) anyway

> >> there was protien in her urine so we just did a 24 hr on her

and am

> >> awaiting results from that and blood work. I also had a

maternal

> >aunt

> >> die from kidney failure when she was 11 back in the 1940's, so I

> >> really believe that this disease is hereditary. Its a tough

> >decision

> >> to make. Only you can come up with the answer. Make sure you

look

> >at

> >> the whole picture before making such a decision. Good luck to

you!!

> >> -- In iga-nephropathy , " lany_rocks "

> ><lany_rocks@y...>

> >> wrote:

> >> >

> >> >

> >> > Hi I have just been diagnosed with IGA two weeks ago following

> >> henoch

> >> > scholein purpura which I suffered with last year. It is all

> >quite a

> >> > shock and to be honest have found more information online

than my

> >> > nephrologist told me.I have been prescribed ramipril but have

not

> >> been

> >> > told any lab results like you guys all seem to have, is this

> >> something

> >> > I should be asking?

> >> >

> >> > I am still at uni but finding it very difficult as am always

so

> >> tired,

> >> > have you guys got any suggestions? I must admit I am quite

> >worried

> >> > after reading the complications between iga and pregnancy,

have

> >any

> >> of

> >> > you guys been able to have children as this is something

which

> >has

> >> been

> >> > worrying me. Any help and suggestions will be gratefully

recieved

> >> as

> >> > I'm kinda in shock!

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

[Guest guest]

Laureen,

I think getting your college degree now will aid you if you were on

dialysis in the future. A practicial college degree will open many

jobs to you that offer less strenuous work environments than jobs

without college degrees. For instance you could get a Comp Sci degree

and work in an office, just wash your keyboard and mouse often.

Phil

> > >> >

> > >> >

> > >> > Hi I have just been diagnosed with IGA two weeks ago following

> > >> henoch

> > >> > scholein purpura which I suffered with last year. It is all

> > >quite a

> > >> > shock and to be honest have found more information online

> than my

> > >> > nephrologist told me.I have been prescribed ramipril but have

> not

> > >> been

> > >> > told any lab results like you guys all seem to have, is this

> > >> something

> > >> > I should be asking?

> > >> >

> > >> > I am still at uni but finding it very difficult as am always

> so

> > >> tired,

> > >> > have you guys got any suggestions? I must admit I am quite

> > >worried

> > >> > after reading the complications between iga and pregnancy,

> have

> > >any

> > >> of

> > >> > you guys been able to have children as this is something

> which

> > >has

> > >> been

> > >> > worrying me. Any help and suggestions will be gratefully

> recieved

> > >> as

> > >> > I'm kinda in shock!

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

[Guest guest]

Hello to the group. I have never posted to a group before.I have read

many of your posts and although many are " scary " they are also

informative and mostly up-beat and positive. Today is Monday. three

days ago,I learned that a lump in my breast has malignant cells. Today

I had an MRI. Next week, I will learn from my " team " (surgeon,

radiologist, oncologist) what they recommend. I feel overwhelmed. How

do you all deal with this so calmly?