Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 10-04-2009, 04:23 PM #11
JCPA's Avatar
JCPA JCPA is offline
Junior Member
 
Join Date: Aug 2009
Location: South Ga Girl
Posts: 85
10 yr Member
JCPA JCPA is offline
Junior Member
JCPA's Avatar
 
Join Date: Aug 2009
Location: South Ga Girl
Posts: 85
10 yr Member
Default

Hi Connie
I came on board while you were absent from the boards but it's good to meet you. Sorry to hear about your family illness. It was good that you did get some relaxation from everything. I know that definitely helped you to keep on keepin' on.

Keeping you and your family in my prayers.

JJ
JCPA is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ConnieS (10-10-2009)

advertisement
Old 10-04-2009, 05:58 PM #12
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Default

Connie

What a post, full of saddness and happiness, I hope your dad gets to feeling better and as for you.. well I am jealous you had a spa treatment! I guess this past week has been crazy for a lot of us but thank goodness for this site and the support from everyone here, I don't know what I would do without you all.
Joanmarie63 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ConnieS (10-10-2009)
Old 10-05-2009, 10:34 AM #13
ConnieS ConnieS is offline
Member
 
Join Date: May 2009
Location: Sunny South
Posts: 210
10 yr Member
ConnieS ConnieS is offline
Member
 
Join Date: May 2009
Location: Sunny South
Posts: 210
10 yr Member
Angry Hospital again!

Hey everyone, thanks for all the encouraging posts. I really need that now.

Dad's been admitted today again, and Doc spent a long time with us discussing options. He's considered to be in the final stages of his stage 4 cancer now, with holes appearing in his oesophaegus, causing food to leak through, and going into other parts of the body. causing infections. He won't be able to eat food for the time being due to the infections. He still has a high fever.. There's also fluids in his stomach which is very bloated (as shown from the CT Scans), due to some blockage between the stomach and intestines. So those liquids are all undigested and his stomach is filling up. Tmr they'll consult the surgeon to see if a food pipe can be inserted through the oesophaegus, pass the tumour, into the stomach to drain out the dirty fluids, and I'm really praying they get to do that. Cos thats the best option given so far. Else dad may never be able to eat again, not even through pipes. The only solution would be to put fluids through his veins, which doc said is expensive to do at home. Hospices and last wishes were also brought up, and it was an extremely draining session as I guess we didnt quite expect it to happen this way.

I'll have to be at the hospital at 9am tmr (my time) to meet his doctors, and I'm really praying for the strength to pulll through all these. I'm also scheduled for my EMG on Thursday at 930am, for my 2nd opinion done locally. It'll sort of let me know at what stage my nerves are at I guess. Neuro said its to see the progression. Everything's coming on so fast, I think I'm quite tired. Really need to pull through this week, praying hard that they'll b able to put the food pipe in for Dad. Else it will be just watching him waste away... Chemo's also not an option now as he is extremely prone to infections due to the holes in his oesophaegus.

I duno where to find the strength to get through all these, though I know I will. I'm just praying that I'll find enough for the whole family. Its tough making all these choices, even tougher when I know my mum's not prepared to let go of my Dad yet. I hate to think what effect my diagnosis will have on my family, I don't think I want them in my neuro's room on thursday.
ConnieS is offline   Reply With QuoteReply With Quote
Old 10-05-2009, 11:49 AM #14
Shari_W Shari_W is offline
Member
 
Join Date: Aug 2009
Posts: 241
10 yr Member
Shari_W Shari_W is offline
Member
 
Join Date: Aug 2009
Posts: 241
10 yr Member
Default

Connie

I am so sorry to hear everything that is going on with you and your father. I will keep both you and your family in my prayers every day. Life is so difficult at times but we have to continue to put our trust in God to carry us through the difficult days that lie ahead. I know that is so hard to do because I myself have trouble doing it too. Just know that we are all here for you.

Love and Hugs,

Shari

Last edited by Shari_W; 10-05-2009 at 12:09 PM.
Shari_W is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ConnieS (10-10-2009)
Old 10-05-2009, 03:13 PM #15
Nicknerd's Avatar
Nicknerd Nicknerd is offline
Member
 
Join Date: May 2009
Location: Toronto, Canada
Posts: 547
10 yr Member
Nicknerd Nicknerd is offline
Member
Nicknerd's Avatar
 
Join Date: May 2009
Location: Toronto, Canada
Posts: 547
10 yr Member
Default

Connie,

I'm sending a big, warm cyber hug your way

This is a lot to deal with all at the same time for anyone...I know that you will make it through, though, as difficult as it is...But I know that the heartache and stress must be a lot...

I hope and pray that your dad can get the feeding tube...Are they able to get rid of the blockage and then insert it directly into his stomach? I always thought that those tubes went into the stomach for some reason, not the esophagus.

I know that you want to be strong for your family, but I hope that you have a good cry now and then to relieve the stress...Comfort yourself whenever you can, and know that God's grace has no boundaries...He's with you all the time, and everything will work out as it's supposed to.

We're all with you too, as far apart as we are, thinking about you and praying about you.
Nicknerd is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ConnieS (10-10-2009)
Old 10-06-2009, 03:20 AM #16
ConnieS ConnieS is offline
Member
 
Join Date: May 2009
Location: Sunny South
Posts: 210
10 yr Member
ConnieS ConnieS is offline
Member
 
Join Date: May 2009
Location: Sunny South
Posts: 210
10 yr Member
Default Thanks!

Thanks Shari and Nicky and everyone else..

Just got back from a day at the hospital with dad again, and went in real early today to speak to the doctors. My dad's doc is really nice, so I thank God for her everyday. The surgeon came to see my dad, and said that a feeding tube / peg is not possible, as the blockage is between the stomach and the intestines (think I got it wrong earlier Nicky). So all the undigested foods/liquids accumulating inside his stomach (which was like 3/4 full when we saw the scans). The food pipe has to go through the oesophaegus to go into the stomach, which is tough too, as my dad's tumour is in his oesophaegus. This morning they inserted this small tube through the nose, to do the suction, to suck out the liquids from the stomach, and it sucked out the ensure he drank yesterday afternoon. -.- The only way it seems, is to go for surgery to remove the blockage, which is likely a new tumour (probably a lymph node). We'll prob know the directions tomorrow morning, after the docs have a discussion and review the scans this evening.

As my dad's 70 yrs old, theres gonna be lots of things to think about for the surgery. Surgeon said some people never walk out of the hospital after that. He was very truthful, which I appreciated. Dad will be considerably weakened by the surgery, but both my dad's doc and the surgeon feels that thats prob the only way to allow foods in again. Otherwise, even with food tube or peg, the foods will still accumulate in his stomach, and remain undigested, not to mention vomitting.

I'm really just praying for a miracle. I know I'm not leaning on my own strength anymore. I cant do it alone, but I know with God in me, with me, I'll be able to do so much more with His strength and love. Thanks for all the positive thoughts and love, I really wish I had more good news to share. Shall catch a nap now, then head back to the hospital an hour later.

Perhaps its good too. So that on Thu, my neuro can see me in my tired state... Lol. Am really just praying for peace in my mum and dad's heart. That they'll be able to accept it. Thanks for everything babes and hunks!
ConnieS is offline   Reply With QuoteReply With Quote
Old 10-06-2009, 05:18 AM #17
redtail's Avatar
redtail redtail is offline
Member
 
Join Date: Jun 2007
Location: western australia
Posts: 894
15 yr Member
redtail redtail is offline
Member
redtail's Avatar
 
Join Date: Jun 2007
Location: western australia
Posts: 894
15 yr Member
Default

Hi Connie,

I am thinking of you and your family
You are an incredibly strong person, I wish I had the right words at the moment.
Just know Iam thinking of you at this time

take care
Kate
__________________


Outside of a dog, a book is a man's best friend.
Inside of a dog, it's too dark to read.
Groucho Marx
redtail is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ConnieS (10-10-2009)
Old 10-07-2009, 04:05 PM #18
erinhermes's Avatar
erinhermes erinhermes is offline
Senior Member
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
Heart Hi Connie!

Oh sweetheart, I am so sorry to hear that!

Your post moved me so much - you are so strong and brave! It killed me when I read about your having to be strong for your whole family - you have enough to deal with without dealing with that........You need to think of YOU sometimes and just retreat from it all.........just for a while to recharge your batteries.....

Cancer is such an awful sickness...my friend of 31 years mother died of lung cancer. I loved Mrs. Campion so much. I still see her in the hospital with all of her pain meds and still vomiting from the pain. It was like losing my mom. I still can't watch certain shows b/c they remind me of her and I bawl like a baby.........she left this world 4 years ago and it still feels like yesterday........ I still dream of her.

Know that I am sending BIG hugs and prayers your way!

Love,
Erin







__________________
Erin
.
erinhermes is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ConnieS (10-10-2009)
Old 10-07-2009, 05:31 PM #19
Pat 110 Pat 110 is offline
Member
 
Join Date: May 2009
Posts: 586
10 yr Member
Pat 110 Pat 110 is offline
Member
 
Join Date: May 2009
Posts: 586
10 yr Member
Default

Hi Sweetie,

I am so sorry for what your Dad and the family is going through. It is so difficult when a loved one is so ill. You take good care of yourself too. I will keep you all in my thoughts & prayers.

Big Hugs,
Pat
Pat 110 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ConnieS (10-10-2009)
Old 10-07-2009, 06:07 PM #20
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
Default

Just read your post - - I am so sorry you are going through all this at once. There is nothing to say except that you and your family are in our thoughts and prayers.
Sue
suev is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ConnieS (10-10-2009)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Notes about meds for sleep Mari Bipolar Disorder 23 12-22-2012 02:07 PM
Seminar notes Riverwild Multiple Sclerosis 30 11-16-2008 02:47 PM
Notes to my Neuro today - what do you think ??? snoodles The Stumble Inn 5 08-07-2008 02:37 PM
mvd post surg notes shelly Trigeminal Neuralgia 0 03-17-2007 07:42 PM


All times are GMT -5. The time now is 05:50 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.