Bad News

[Guest guest]

Dear ,

I'll say prayers and send the most heally thoughts your way.

Have a wonderfull trip.

Jean

----------

|

| To: ceda

| Subject: Bad News-Cancer

| Date: Friday, March 23, 2001 12:36 PM

|

| Hi everyone, again, I'm sorry I haven't replied personally to everyone's

| emails about the recent notes I've written regarding my bladder/kidney

| problems and also constipation. As you all know, I haven't been feeling

| very well lately. Unfortunately, after several tests, they did find a

tumor

| in my bladder and it is most likely cancer. They sent a biopsy in, but

my

| urologist said that it would be " very rare " for it to be benign. I still

| have hope that it may be benign, but I won't find out for sure until

| Wednesday.

|

| So, fortunately it is in its very early stages--the tumor is very small,

| and very treatable with a 94% success rate. Unfortunately, it means

surgery

| and lots of cystoscopies in my future, which are uncomfortable and a

little

| dangerous with the EDS. The good thing is that I had no trouble with the

| first cystoscopy, where they insert a scope into your urethra to view the

| inside of the bladder.

|

| At this point, I am feeling very grateful that my doctor took my

complaints

| of " not feeling well " seriously enough that he sent me to a specialist.

| Those of you who have been on the list for a while remember all the

trouble

| I have had with doctor's diagnoses of somatoform disorder-- " all in the

| head. " (My GP has always believed me--it was one specialist who was an

| asshole, thus, creating a chain reaction of other specilists belittling

my

| complaints.) This was at Mayo Clinic, btw! They all treated me like

shit

| even after a second opinion from a geneticst concluded that I did,

indeed,

| have EDS.

|

| Well, enough of that--I am tired of dealing with small minds. The good

news

| is that my trip to Paris on April 5 is still on--the doctor said there is

no

| hurry and I will have surgery when I get back because he feels is it a

slow

| growing tumor--most are, I guess, in the bladder, and especially since

mine

| is so small (1x2 mm). If anyone is interested to read about bladder

| cancer, you can check out www.afud.org.

|

| On the other hand, I am worried but still in shock. I have had horrible

| nightmares the past two nights. My mother died of breast cancer when she

| was only 34, so this is a very emotional thing for me. I have NONE of

the

| risks for bladder cancer, except that my race is white, so I don't

| understand why this has happened. The major risk factor is smoking, and

I

| have never had a cigarette in my life.

|

| Well, this is getting very long. Please pray for me. And, thank you to

| everyone who emailed me privately and to the list when I asked for help

| before. I am sorry I have been unable to answer everyone individually.

|

| I can't help but wonder if the EDS has somehow contributed to my

| susceptibility to cancer--my immune system? I know the answer is

probably

| not, but when there's so much going on in your body, it has to be all

| connected somehow(mind and body)---

|

| I could really use some support right now--my depression is under control

| right now, thank God, but I hope it doesn't come back because of this.

It's

| embarassing to say, but I don't have much of a support system since I

don't

| live in my home town and haven't been able to work, I have kind of cut

| myself off from my friends in the town we live in because I haven't been

| able to be much of a friend to anyone. My husband and I do have a pretty

| good marriage, even though we've had some terrible ups and downs because

of

| my illness. I used to be an " obnoxiously " upbreat extrovert....at one

| time, so this hurts me to not be around people--but it's just too hard

when

| people don't understand, and you can't reciprocate or you have to turn

down

| invitations. Then the invitations stop coming.

|

| Well, I've written a novel. Thank you for reading this. Please pray for

| me...I will keep you all informed. And, if anyone has any good info, I'd

| appreciate your sharing it with me.

|

| Hugs (and tears), Brecka

|

|

|

|

[Guest guest]

Hi Nina.

Proteinuria is probably down because of one or more medications (so many

messages, I forget what meds he is on, but ACE inhibitor is a good bet). An

ACE inhibitor will usually drop protein a bit and temporarily raise serum

creatinine a bit. As for the other stuff, I don't think it's all that

unusual. I can't speak for anyone else, but I haven't had a lab report that

didn't flag at least uric acid, cholesterol/tryglicerides as being high for

probably 20 years, and my BP has been high for well over a decade. It sort

of all goes together with the serum creatinine going up, and these things

are usually the first to be elevated. Why does it get worse? Who knows?

The absolute, most important aspect of dealing with this is finding a blood

pressure medication (or combination, like an ACEI and a diuretic) that

works, and to stick to it religiously.

I hope this helps put it in perspective a bit. As for the anger, well, it's

only natural. I think some anger at first is part of the " grieving " process

of finding out that you really do have this IgAN and it isn't going to go

away. Heck, I still get angry myself, even after all this time, especially

when lab results are worse after having been relatively stable for a while.

We all have to learn to deal with it somehow. In a way, it's probably better

to express the anger for a little while, as long as it's not destructive,

than it is to repress it and have it continue to seethe inside.

Pierre

Bad News

I'm back with bad news. My fiancé's test results came to be worse

than the previous ones, just 1 day before he's leaving. His neph just

went crazy with the results he got. His protein is down to +1 (was +2

a month ago), but for the first time his creatinine level is high, I

think he said it's 1.9 (the normal is 1.2?), also high cholesterol

and trygliceride, high BP, uric acid and God knows what else. He

refused to give me details as he was very angry, and started to yell

at me when I asked what the neph told him.

Anyway, he mentioned something about his kidneys not filtering well,

that's why his protein is +1 and the uric acid is high, as he said.

I'm sorry I don't know more details, but I'm very worried. Does that

have anything to do with protein going down, creatinine going up and

uric acid going high? Any insight would be highly appreciated. Thanks.

Nina

[Guest guest]

Thanks for the insight Pierre. The meds he's taking

are Concor, Zocor, Cozaar, Neoral, Natrilix, Lercadip,

Ziluric (sp?), Omega3 and pH8. His creatinine has

always been within the normal range, now it's up for

the first time and his family is so worried. Well, now

that you said ACEIs do elevate creatinine and

everything related to it temporarily, I'm a bit

relieved. I will tell him that it's " normal " for his

creatinine to go up, maybe that will be some good news

before he leaves...

--- Pierre L wrote:

> Hi Nina.

> Proteinuria is probably down because of one or more

> medications (so many

> messages, I forget what meds he is on, but ACE

> inhibitor is a good bet). An

> ACE inhibitor will usually drop protein a bit and

> temporarily raise serum

> creatinine a bit. As for the other stuff, I don't

> think it's all that

> unusual. I can't speak for anyone else, but I

> haven't had a lab report that

> didn't flag at least uric acid,

> cholesterol/tryglicerides as being high for

> probably 20 years, and my BP has been high for well

> over a decade. It sort

> of all goes together with the serum creatinine going

> up, and these things

> are usually the first to be elevated. Why does it

> get worse? Who knows?

>

> The absolute, most important aspect of dealing with

> this is finding a blood

> pressure medication (or combination, like an ACEI

> and a diuretic) that

> works, and to stick to it religiously.

>

> I hope this helps put it in perspective a bit. As

> for the anger, well, it's

> only natural. I think some anger at first is part of

> the " grieving " process

> of finding out that you really do have this IgAN and

> it isn't going to go

> away. Heck, I still get angry myself, even after all

> this time, especially

> when lab results are worse after having been

> relatively stable for a while.

> We all have to learn to deal with it somehow. In a

> way, it's probably better

> to express the anger for a little while, as long as

> it's not destructive,

> than it is to repress it and have it continue to

> seethe inside.

>

> Pierre

>

> Bad News

>

>

> I'm back with bad news. My fiancé's test results

> came to be worse

> than the previous ones, just 1 day before he's

> leaving. His neph just

> went crazy with the results he got. His protein is

> down to +1 (was +2

> a month ago), but for the first time his creatinine

> level is high, I

> think he said it's 1.9 (the normal is 1.2?), also

> high cholesterol

> and trygliceride, high BP, uric acid and God knows

> what else. He

> refused to give me details as he was very angry, and

> started to yell

> at me when I asked what the neph told him.

>

> Anyway, he mentioned something about his kidneys not

> filtering well,

> that's why his protein is +1 and the uric acid is

> high, as he said.

> I'm sorry I don't know more details, but I'm very

> worried. Does that

> have anything to do with protein going down,

> creatinine going up and

> uric acid going high? Any insight would be highly

> appreciated. Thanks.

>

> Nina

>

>

>

>

[Guest guest]

Anne,

Your dad has been and will be in my prayers tonite along with your family, God bless you........

Vicky81856 IPH/PF 4/06

••••••••••••• Original Message •••••••••••••

Hi all,Just got home from a very long day at the hospital. My brother and I took my Dad in to emerg this morning. Mom had called saying that he was not looking good and had said a few things that didn't make much sense. Well, his blood sugar was too high to measure with a tester--had to wait for lab work--it was 60! (normal is 4-6).He's now on IV fluids, electrolytes and insulin--he's very dehydrated. I'm back there tomorrow to meet his endocrinologist and discuss what to do. Please say a prayer for us,anne (dad ipf 03/06)

[Guest guest]

Hi all,

Just got home from a very long day at the hospital. My brother and I

took my Dad in to emerg this morning. Mom had called saying that he

was not looking good and had said a few things that didn't make much

sense. Well, his blood sugar was too high to measure with a tester--

had to wait for lab work--it was 60! (normal is 4-6).

He's now on IV fluids, electrolytes and insulin--he's very

dehydrated. I'm back there tomorrow to meet his endocrinologist and

discuss what to do. Please say a prayer for us,

anne (dad ipf 03/06)

[Guest guest]

Anne,

I will bring your family before God in my prayers tonight. Thank God that you got him to the hospital when you did. Get some rest. Let us know how he is tomorrow.

Hugs, Joyce PF 1997>> Hi all,> Just got home from a very long day at the hospital. My brother and I > took my Dad in to emerg this morning. Mom had called saying that he > was not looking good and had said a few things that didn't make much > sense. Well, his blood sugar was too high to measure with a tester--> had to wait for lab work--it was 60! (normal is 4-6).> He's now on IV fluids, electrolytes and insulin--he's very > dehydrated. I'm back there tomorrow to meet his endocrinologist and > discuss what to do. Please say a prayer for us,> anne (dad ipf 03/06)>

[Guest guest]



Vicky and Beth,

Thank you for your kind words and prayers for my family. I just hope that we can get things stabilized for Dad without something else going wrong. If all goes well, I think we'll be bringing him home on Monday or Tuesday. Until then, I'm hanging in there.

anne (dad ipf 03/06)

Re: Bad News

Anne,

Your dad has been and will be in my prayers tonite along with your family, God bless you........

Vicky81856 IPH/PF 4/06

••••••••••••• Original Message •••••••••••••

Hi all,Just got home from a very long day at the hospital. My brother and I took my Dad in to emerg this morning. Mom had called saying that he was not looking good and had said a few things that didn't make much sense. Well, his blood sugar was too high to measure with a tester--had to wait for lab work--it was 60! (normal is 4-6).He's now on IV fluids, electrolytes and insulin--he's very dehydrated. I'm back there tomorrow to meet his endocrinologist and discuss what to do. Please say a prayer for us,anne (dad ipf 03/06)

[Guest guest]

Anne,We are praying and thinking of you...keep us posted.Cyndi (DAD,PF 12/05)anne wolf wrote:  Vicky and Beth, Thank you for your kind words and prayers for my family. I just hope that we can get things stabilized for Dad without something else going wrong. If all goes well, I think we'll be bringing him home on Monday or Tuesday. Until then, I'm hanging in there. anne (dad ipf 03/06) Re: Bad News Anne, Your dad has been and will be in my prayers tonite along with your family, God bless

you........ Vicky81856 IPH/PF 4/06 ••••••••••••• Original Message ••••••••••••• Hi all,Just got home from a very long day at the hospital. My brother and I took my Dad in to emerg this morning. Mom had called saying that he was not looking good and had said a few things that didn't make much sense. Well, his blood sugar was too high to measure with a tester--had to wait for lab work--it was 60! (normal is 4-6).He's now on IV fluids, electrolytes and insulin--he's very dehydrated. I'm back there tomorrow to meet his endocrinologist and discuss what to do. Please say a prayer for us,anne (dad ipf 03/06)

[Guest guest]



Dear Ginger,

Thank you so much for the lovely prayer. It brought many tears to my eyes this morning as i read it and I am so grateful for your kind words.

Also, thank you to everyone who posted with their best wishes and prayers of support for me and my family during this difficult time. I will be leaving shortly to pick up my Mom and take her to see Dad. I am hoping and praying that things are better today and will let all of you know what's happening later.

Love to all of you,

anne (dad ipf 03/06)

Re: Bad News

Anne,

Your dad has been and will be in my prayers tonite along with your family, God bless you........

Vicky81856 IPH/PF 4/06

••••••••••••• Original Message •••••••••••••

Hi all,Just got home from a very long day at the hospital. My brother and I took my Dad in to emerg this morning. Mom had called saying that he was not looking good and had said a few things that didn't make much sense. Well, his blood sugar was too high to measure with a tester--had to wait for lab work--it was 60! (normal is 4-6).He's now on IV fluids, electrolytes and insulin--he's very dehydrated. I'm back there tomorrow to meet his endocrinologist and discuss what to do. Please say a prayer for us,anne (dad ipf 03/06)