moms Will to live

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1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 12/4/2007 7:04 PM (GMT -7)   
 Toni, I am not sure but did you send me a sympathy card? I recieved one today in the mail and a I don't know any other Toni except you. If it was you Thank You so much for your kindness. It was very thoughtful.
                                 Shelly
 

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 12/6/2007 10:00 AM (GMT -7)   
Hello Shelly,
I can not take credit for sending the card, but do know you have my deepest sympathy for the loss of your mom. You have definatley been in my thoughts lately! Tomarrow, Will and I are going to Shand's Hospital for testing. I'm am so scared! I don't know if it's that mother's intuition but, I feel something is not right! Please, tell me I'm overreacting. He has lost about 10lbs since Thanksgiving. He seems tired alot but, he say's he feeling okay! Usually, I can read him like a book but, for some reason he's been kinda distant. Maybe it's just stress and the not knowing? Of course once we get these test we will be in that hurry-n-wait mode til we get the results! Don't mean to drop my worries on you. Thanks for listening! I Hope you find peace in knowing your mom is no longer suffering and that as a daughter, you did everything you possibly could to make her comfortable and feel Loved. I'm sure she is smiling on you now knowing that you have continued on educating and helping others threw their pain and worries!
Huggs,
Toni

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 12/6/2007 4:52 PM (GMT -7)   

Toni, I can only imagine what you are feeling right now. It's the NOT KNOWING that is so tramatic, at least in my opinion. I will say a special prayer tonight for Will. I can't tell you that you are overreacting because I would feel the same. I am a little concerned that he says he's fine when every indication (sleeping alot, wt loss, etc) indicates he is not fine. Can I suggest that on the way to Shands tomorrow you have a heart to heart with him? Let him know that no matter what he can always tell you anything. Reassure him that no matter what you can cope with anything-even bad news- if you know the truth. In my experience I have found that loved ones are reluctant to say how they really feel because it affects their immediate family so adversly. I would guess that he diminishes how he really feels so you won't be hurt or upset. This is a guess on my part because I don't know Will personally. Whatever the case may be do not feel guilty or bad. You are his mother and there is no love on this earth that compares to that. He is probably scared to hear what they have to say too. He needs to know that it is OK to be scared. Again, it's the NOT KNOWING that is so difficult.

Having gone thru so much with my mom, (Dr visits, labs, hospital stays, etc) I can tell from experience that sometimes its good news, sometimes bad news, and sometimes things are staus quo. No matter what-it's hard. We truly came to the point of acceptance. That was probably the hardest to take for me. Her deterioration was so quick that I really didn't have time to adjust emotionally. For myself, I deal much better with all the facts-good or bad. I guess that way I can set a plan of action. That's just me though.

You will say and do the right things Toni. I have evrey confidence in you. You are smart, well informed, and willing to do whatever is necessary. Go with your gut-time after time it has proven to be correct. Always trust your instincts. Kisses and hugs to you both.

                                                      Shelly


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 12/6/2007 7:31 PM (GMT -7)   
Toni, I just want you to know my thoughts and prayers will be with you both tomorrow. It's a good idea that Shelly has about the heart to heart talk on the way. I have been able to get my boys to talk lot easier in the car than anywhere else. I think it's because there's not as much eye contact as if you were just sitting together. The drivers eyes are mostly on the road. Good luck and take care.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 12/7/2007 9:51 PM (GMT -7)   
Hello, Will and I just got home! It has been a long day and We are both very tired. Thank you Shelly and Pink Grandma for the support and advice! I just read your post and we were all on the same page as on the way up we did talk a little and he is convinced he's going to be fine! On the way home it was a little different emotionally as he's pretty scared now Dr's. changed their minds and instead of ultrasound they did CT. I'm very concerend as we were told Oct 4th he should be checked every 3 months and ultrasound would be fine. We have to go back Tuesday for EDG Endoscopy to check for varcies in the esophogus (not sure if spelled right) and a return apt for Jan.11,08 . Also, nodule on Sept.7th ultasound was.7cm and come to find out on the ultrsound done on day of biopsy Sept.17th it was a .9cm could this have grown a tiny bit in 2weeks and if so why did we wait 3 months (for his new meds that we aren't even sure there working?)Dr. say's it's not reversable so what signs, symptoms or any should I be looking for? If he has varcies wouldn't he be spitting up blood? They don't even have his labs yet and Dr. sends us to a Transplant financial lady but, in same breath say's he's not at meld yet. How fast can this disease do damage? Please, help me to understand I'm not ready for this nor do I want to be! Poof!!! my Christmas Wish is (You Know)!!! I'm keeping my chin up ! Bless you all! Lots a Huggs and smooches!
Toni

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted Yesterday 12:01 AM (GMT -7)   

"Dr's. changed their minds and instead of ultrasound they did CT."

Actually, this is a good thing, as a CT will show more of what's going on than an ultrasound.  Yes, the nodule could be growing, though that's a small amount and possibly could have been measured incorrectly.  I went from no tumor to a cancerous tumor taking up most of the rt. lobe of my liver in a year's time.  And I'm still here.  From what you've said, it sounds as though they are taking Will's case more seriously.  Rather than being scared, be glad that he is getting tests, etc., to give the docs a better look at his problem.  It's doubtful that Will is just going to keel over this week or this month.  That must have been a draining trip and day at Shands.  Make sure both of you get lots of rest this weekend!  And thanks for checking in with the results of your trip!

"They don't even have his labs yet and Dr. sends us to a Transplant financial lady but, in same breath say's he's not at meld yet."

I nearly forgot to comment on this.  There are some things that can be done in advance, and the financial review is one of them.  Believe me, once testing for transplant is done and a match is found--things will go unbelievably fast!  I got pre-registered last week for my upcoming surgery on the 14th.  On the 12th, I will go to the hospital for an EKG, chest x-ray, and a pre-surgery consult.  That way, when I go for surgery on the 14th, I can be prepped and poised to go right in without delay.

BTW, it's spelled varices.  You were close.  ;)

Hugs,

Connie

 


Post Edited (hep93) : 12/8/2007 12:16:56 AM (GMT-7)


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted Yesterday 8:16 AM (GMT -7)   

 Hi Toni, thanks for updating us. I thought about you two quite a bit yesterday. As for your question about the varices, they bleed when they rupture. Just because he has varices doesn't necessarily mean they will bleed out. My mom had them for years with no bleeding at all. Do you understand what varices are? If not then it would be easier for you to look it up on the web and get a full understanding so you will know what they are. They are doing the EGD to evaluate them. I worked for a short time in the endoscopy unit. EGD's are common proceedures and are done for several reasons not just varices. (In his case however that is why they are doing it). If he has not had this done before please reassure him that the proceedure does not take very long and he will be sedated before they do it. The most common sedation is called Versed. To me it is a miracle drug! I have had it for other proceedures myself. It is a sedative and amnesia medication. They give it thru the IV. There is seldom much of a hangover afterward and it makes you feel euphoric. It truly is a "I don't give a darn about anything" medicine. The EGD is an outpatient proceedure so when they have completed it they will take him to their recovery room. He will have his vital signs taken immediately in recovery and the drug starts wearing off very quickly. The nurse will get him to wake up a little then when they are done evaluating him they will have you come in to sit with him. They will NOT let him eat or drink anything for a couple hours. (that is because the tube they use for the EGD goes down the throat). However normally the patient goes home in about an hour after the proceedure. That includes their recovery time. For 24 hours they don't want him to operate any electrical machinery or drive a car. IT takes about that long for the Versed to completely exit from the body. He will go on the nods alot for several hours and sleep alot. That is normal. Unless things have changed that is how it works. I hope this helps a little.

                             Shelly


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted Yesterday 10:30 AM (GMT -7)   
Hello Toni, Shelly was right on about the endoscopy. My husband had 3 endoscopies with bandings twice. They band varices sometimes to keep them from bleeding. My husband was fortunate he never had any of them bleed. But you are right it is very scary for the caregiver. I knew that he needed to have them but I was terrified each time. But he came out okay all 3 times. We can tell you don't worry but I know it's really not going to happen. You're his mom and are going to worry regardless. Just know that you have a whole lot of friends here praying for you and your son. Just make sure that your son eats properly and gets enough rest and exercise. And with taking his meds properly that's the best things that he can do to slow it down.
Toni if it turns out that your son does develop cancer there is a pretty new cancer drug out for liver cancer now that had good results in the trials. It's called Nexavar. Google it and find out about it so that you can tell your son's doctor about it if needed. Get as educated as you can about everything that can happen so that you can be your son's advocate and push for treatments. If his doctors know that you are educated in this disease they will be more apt to go above and beyond for your son.
Take care and hang in there........thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted Yesterday 1:51 PM (GMT -7)   
Hi Toni, My husband had an endoscopy about a year ago, and it was still preformed exactally as Shelly described. He was found to have varices and placed on a medication to help with the portal hypertension (this is what causes the varices) to lessen the chance of bleeds. So far so good. Portal hypertension develops when the liver is unable to filter the blood correctly and causes the blood to back up which causes the veins to enlarge (varices). I hope everything goes well. I am keeping you both in my prayers.
Butterflythree
 
There is always hope!


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted Today 9:18 PM (GMT -7)   
Hello Friends,
Just thinking of all and wanted to say have a good rest and may we all have a great day tomarrow and everyday! Thank you all for the help! The support is so moving on this forum and you veterans, we newbies don't have a clue do we!? I hope that I give my Will the same strength and support that All of you have given to me! My Thoughts and Prayers are about You All!
HUGGS AND SMOOTCHESS!!!
Toni
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