[sam101360]

Hi:

I posted earlier this week that I had great news from the nephrologist... today I saw my GP for a normal visit...He had my biopsy results and asked when I would see the nephrologist again.

Of course, I said early October, but there's no worries, his office called and told me everything was just fine!

He sat down...with his doctors face...and said...No!

He showed me the results, I have "Proliferative Glomerulonephritis" with basement membrane thickening and mesangial expansion.

So I with my usual aplomb, say, well then why did they tell me all was OK!!! I was just a little freaked out. I figure I was standing on home plate with a run in the "win" column...now I just don't know.

He said, that I shouldn't worry, it was all found out relatively early and this can be very treatable, to just wait until I see the nephrologist in Oct.

Siiigh...I already told my friends and family what the nephrologist said, and I am not repared to take them on this roller-coater ride with me right now. Hubby is out of town for the week, I am not gonna tell him and ruin his trip. Mom was so relieved she started to cry, so I cannot tell her...

So my friends...as always I come to you for support and guidance until I see the nephrologist (who is on vacation till Oct 7th and I see him on the 9th).

I am not totally worried, just a little confused by the change in results but hey what can you really do about it?

Thanks for anything you can toss out as a lifeline...I'm drowning here!

Love you all - Stephanie

 

[greenhaggis]

:grhug: Stephanie, Lots of hugs being sent your way! I can't even begin to imagine how you are feeling, but I'm here for you vent away! :grhug:

 

[x_claire_x]

I send you a big hug... what a rollercoaster this is! The 9th Oct is my daughter's birthday.. I hope it is a better day for you than you think...take care until then.xx

 

[Katharine]

Oh Stephanie :hug:

What a turnaround and I can understand why you're confused and I'm sure quite worried

I guess that's the problem with results on the phone

Katharine

 

[keebler]

(((Stephanie)))

My goodness what a shock to be told all is OK then have them say it isn't ok.:hug:

Vent away Stephanie we are here for you. I am sorry that you are on this roller coaster ride.

I think I would tell your nephrologist about the phone call you got. That is just awful for you to go threw.

You are in my thoughts and prayers.

Love,
Lyn

 

[orangelily]

Hi Stephanie, just wanted to let you know that we are all thinking of you and you are more than welcome to vent away.

Take care of yourself

 

[Merle]

Hi Stephanie

So sorry to hear your news.

If it is any comfort, Wikipedia states that "Mesangial Proliferative Glomerulonephritis" is "classified as type II lupus nephritis by the WHO " and that "This form typically responds completely to treatment with corticosteroids."

Maybe for your nephrologist's office a treatable condition is seen as good news, whereas your GP is worried by any finding of inflammation.

Take care of yourself and try not to worry.

Merle

 

[Lily]

Hi Stephanie,

I'd be encouraged by what Merle has written about staging. If it is stage II then that's a better place to be in :hugbetter:

I'm so mad on your behalf, I can't believe the office told you that.........I hate getting any results on the phone unless it's straight from the docs mouth.

Hang in there.............sending hugs,

love
Lily

 

[KarolH]

Know that I am thinking of you Stephanie and I am sorry that your dealing with this after thinking everything was sooooooooo good.

I will keep you in my prayers.:wink2:

 

[oesa]

Hi Stephanie - so sorry things aren't what you were first told, I'd be pretty upset I think!

If you're looking for a bright side, I'd try to take some comfort in knowing that your nephrologist doesn't view this as "urgent", and in the information on the WHO classification. If you do indeed have Class II, it's generally considered quite treatable.

Sending hugs and positive thoughts your way!

Lisa

 

[Fairy]

Hi Stephanie

I think your nephrologist needs to find some middle ground - going from showing you dialysis machines to telling you there's nothing wrong when there is is an interesting way of handling things :lol:

On the bright side, if it is class II, that's probably the best bad news you could get because it is very treatable. I suppose the protein loss had to be caused by something, and at least you know what it is now - knowledge is power and all that.

Take care :hehe:

 

[sam101360]

Hi:

My uncle is a Dr and he has been keeping involved with my care, answering questions and things like that.

I sent him the biopsy results and asked whay I got the different responses from the two Drs.

He said that the kind of damage I have to my kidneys is indeed the best of a bad situation. This kind should respond well to treatment, and renal failure is just a slim possibility.

He explained that to a nephrologist, this is a "FINE" result and thus the phone call. Basicall, don't worry, you are being treated, we can tweak the meds thus we can continue to keep this manageable.

He also explained that to a GP, this is "NOT FINE" as there are changes to the kidneys that are abnormal and represent concerns.

So the two sides of the coin are now understandable. Confusing, scary but now that I know the details acceptable.

I will call my Rhumy's office today - my rhumy had been off sick for 3 months already (he had emergency heart surgery) and may not be back for several more months. I have been waiting for him to return as I have care from the nephrologist and GP...but now believe I need to get them back into the mix even before he returns. I will see which Dr in the practice is available and hope it all works out OK.

Thanks again all of you for your kindness and support...I am doing better now that I understand the implications and reasons behind the current situation.

Fairy, you are right...Knowledge is power...or at least piece of mind!

Much Love - Stephanie

 

[debatat]

(( Stephanie )) I have only just caught this thread, it must have been a shock, I am glad your uncle has explained things a little better to you. It is still a lot to take in though. Thinking of you and sending you good thoughts to get through this.

Deb x