sad news yesterday (non ds related)

[steffipoo]

Hi folks this is totally non ds related but had to share with my uno family. Yesterday my husband jeff n I went to his cardiothoracic(sp) surgeon to find out how long he has till he needs his valve replaced. Well we came in with a feeling of when is the surgery and how he was going to put in the mechanical valve as opposed to the porcine valve he has in now. We had FIGURED he would get a mechanical valve because this will be his 3rd valve transplant and last time the surgery took forever due to massive scar tissue (it took them over 5 hours to slowly get the scar tissue off his heart which was stuck to his chest walls and everything and then they started the surgery so...) Well, the surgeons staff made us wait even though the doc was running 2 hrs late due to a surgery he was doing taking longer. They were really adamant we don't reschedule and to wait. K so we go in and the doctor who is a GREAT surgeon with a lack of bedside manner he is very frank and brutally honest says Jeff you hafta get your valve replaced again. K we know that. He said the surgery should be soon as it's failing at a steady rate. Then he proceeds to tell us that Jeffs liver disease has progressed so much that his chance of not surviving the surgery is 70% and up. He gave us some dreary statistics about his survival rate for the surgery and then on the other hand said he can't survive much longer without the surgery. I mean this was a REALLY HEAVY discussion. I looked over at Jeff and knew EXACTLY what he was thinking.( will share that later in the story) So after spending an hour and a half in the surgeons office we leave STUNNED. As we are waiting for the elevator the surgeon walks over like he's waiting too sees us then walks away looking for the other elevator. Kinda that he didn't wanna face us kinda thing. So we get to the car and Jeff says what I knew he was thinking....He says, "when the doctor told us that the first thing I thought about was OH NO We planned to live on a boat in the marina( us simple people that is our plan ) after the kids move out later in life. Then he got big tears in his eyes. Oh man I can't take it... He was so somber when he spoke to us and very very serious. The doctor also said he will NOT put in a mechanical valve as he was certain Jeffs body couldn't take it and it was almost a sure thing he could not survive. So he would put in another porcine valve and hope it lasts 10 years and then WHAT. Ya know It's not gonna get easier as then in another 10 years Jeff will need another valve transplant. Then he's be 58. And if they don't think he can survive this one well in 10 years what kind of survival rate then??? Ya know? UGGG it was a horrible day.

On another note am taking Olivia in to the doctors today to have her checked out and to get her thyroid tested. Am thinking her levels may be up to a medication needed times as she tested positive for hashimotos years ago but her levels haven't been high enough to be on meds. But now its been 2 years since her last blood test for it and think it's time. Will let you know. Also want to discuss issues regarding puberty as she has yet to get her period and wanted to know if there is something to perhapos when she does get it that will make her period lighter . ( some low dose birth control pills or something? ) whatcha all think on the subject lemme know will check the puter before I leave this AM.

Thanks for letting me vent. It's just not fair for Jeff he's the greatest guy and doesn't decerve all this hardship in his life. (((HUGS))) Stephanie

[Myria]

((HUGS)) I'm so sorry, Stephanie! I can't imagine how you and especially Jeff must be feeling~ I will keep you both in my prayers for a safe surgery and recovery.

[Googsmom aka Jennifer]

{{{{{BIG GIANT HUGS STEFF}}}}}} {{{JEFF TOO}}}}} I soooo know the feeling of "then what" It SUCKS!!!! Take each day as a Blessing and cherish everything. I know you do, just reminding ya I have to remind myself of that too, alot. Hang in there Steff. I'm praying for you and Jeff. {{{{HUGS}}}} This, I know, is one of the hardest things to deal with. You can do it!! You are strong and so is Jeff. {{{MORE HUGS}}}}

[momofrussell]

Aw Steff!!!! I wish there was more we could do for you guys.... your DH IS a great guy!!!!

Sending lots of love!!!

A.

[CC]

MEGA
HUGS
and many prayers going out to Jeff and you Steff from us here in Jersey

CC~

[steffipoo]

Thanks and (((HUGS))) right back at ya. Hafta take Olivia is this AM for her bloodwork. When we went in yesterday after seeing the doc found out the lab couldn't take Olivia cause she had to be fasting for one of her bloodworks. So taking her this am before school. they're testing her hepatic group, lipid panel with fasting, glucose, free t-4 by dialysis, tsh, and hemoglobin A1C. Didn't wanna have her get poked twice that would be mean. BUT did get to use my dads handicap placard so we didn't hafta pay the 11-20 dollar a day parking fee. So thats good. Take care and have a great day.
BTW they are sending Olivia to the endocrinologist for regualr apointments to work on her weight and her thyroid. When I told Olivia she was getting her thyroid checked last week I explained about the blood test etc and the next morning she got on the bus put her hand on her neck and told the busdriver lol MY thyroid hurts. paaaaaaaaaaleeeze lol.

[Emilysmom]

Oh Steff........I'm just so sorry. It seems like Jeff has had one piece of bad news from docs over and over and over for years now. So, are they going to schedule the surgery for the porcine valve soon? I'll pray that he does just FINE through that surgery and that this valve gives him NO trouble at all. Please let Jeff know that we are here for him and we care! ! !

About puberty and Miss Liv!! Just seems like it couldn't be time to be talking about this for her, but I know how time flies!! Honestly, I can not remember exactly when it began for Emily, but I know it was October so I'm thinking it was just a few months after Emily turned 10 years old. She has stayed fairly consistent (plus or minus a few days) over the years........one heavy day with almost no cramping (but bloated! ! !), 2nd day is medium, then 2 more days of light flow. She hates every day of it!! She has always been totally capable of handling all the hygiene issues with no help at all, but sometimes she still makes bad decisions about it all! It's like she thinks if she ignores it, it will just go away! GRRRR. A few years ago, we tried her on low dose birth control pills in an effort to "schedule" her periods better for vacations, swimming, etc. It was a fiasco, and totally not worth it in my opinion. We had a hard time getting the right dose, and it actually made things more UNpredictable for a bit. So, we stopped the pill after a very short trial. We talked to her doc about the injections, and after a long discussion (risks vs benefits) decided Emily would just have to get through each month like everyone else.

Fast forward to last year.........we tried her on 2 different pills that were designed to make her ony have one period each 3 months. Thought that would be great, because we could totally skip the summer months. And, I don't know if it was just Emily or a side effect of the meds, but the girl ate everything in sight! ! ! It was like she could not get enough to eat! She gained 6 pounds in just a few months, and the doctor was very worried that if she continued to do that over the course of a year or two, her weight would be totally out of control. So, we stopped that too.

Thinking of you ALL! ! !

Susan

[steffipoo]

Omg Susan don't want ANY weight gain at all sounds very unreliable. Guessing we'll do the same the ole fashioned way. One doc suggested depo-provera which I immediately said no to. Thanks for your input it helped a LOT. Hmmm liv hates blood and needs a bandaid for anything that bleeds so thinking a big pad will be like a big bandaid. Lol
Thanks for your thoughts for Jeff. He decided he's gonna wait n think for a bit. Funny thing the dic tells us the news then says... Lol I can schedule u for surgery in the next 2-3 weeks whereby he declined and said he needs to think a bit first. Kinda like gee 70-90% chance u won't survive wanna do this in the next couple of weeks??? Lol yea ooookay... Thanks again gotta run ((( hugs))) steff

[steffipoo]

Lol the doc not the dic Freudian slip lol

[Ericsmomma]

Steph,
You can be sure you and your wonderful Hubby will be in my thoughts and prayers. Keep us posted.

[Chris too]

Awww, Steff! ((((hugs)))) I'm praying for your family & the great surgeon with the pathetic bedside manner.

I can provide some help, perhaps, with the puberty issue. Have a look on the net at an herb called "vitex" or "chasteberry" - it's a hormone regulator. It helps my daughters quite a bit. Easy periods run in my family, but these girls tend to be irregular in their timing. Taking vitex every day makes them have perfect 28-day cycles, so we know what to expect.

[steffipoo]

Hi and thanks for the heads up on the chasteberry. Sounds like something she'll try when it's time. Hafta share...
Took Olivia this am for her blood tests as she had to fast. So we're waiting and she's asking me a million questions about it. I tell her after the poke it doesn't Hirt. Olivia gave me a look of disbelief and asked another million nervous ?'s. So they call her in...#62 she jumps up that's me holding up her number like she won the lottery then looks at me like wait a minute I don't think I like this. She sits down the lady asks which arm and Olivia proceeds to put both arms behind her back. Well she says okay this one. She will not stop asking what's that ?'s to the lady and watches as she puts it in. She looks horrified then looks up at me with this brainstorm look and smiles n says your right mom it doesn't hurt. Then we leave I take her to school and she is ADAMANT about keep her long sleeve tee rolled ip on her injured arm. Lol. The first person we see I look at Olivia and she is posing next to the wall with her blood test arm out looking at the girl then looking at her arm then looking at the girl until she made a point of saying Olivia you got a blood test today!!! Then liv lit ip n told her how brave she was n they used a butterfly and a tiny needle n it didn't hurt lol. The she waked into the classroom with her arm out to her side so EVERYONE in her class could see it n comment about it. Talk about fishing... Lol cracked me up!!! K all done talk to you all later!!!

[char]

Thoughts and prayers from Tucson....Char

[ALLISA]

Steff....sorry to hear Jeff's news....and for the shock you all must be feeling

Puberty ? We are still trying to keep Erin DRY and accident free....I figure just about the time I get THAT all finalized...should be time for period....GREAT...can't wait !

[alisonzmom]

Steffi,
I wish I could just hop a plane and go out to sunny CA to give you guys a great big hug!!! This really stinks........

Know that you guys will be in my prayers and thoughts.

Barb