The Cost Of Hope

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1Shelly1
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Date Joined Oct 2007
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   Posted 1/14/2008 7:42 PM (GMT -7)   
To all my friends in the Healing Well Forum, today I had a really down day. I felt so sad and missed my mom so very much. I am going to my dads house tomorrow to pack up all my mothers things so I guess I have been thinking about the finality of removing all her clothes etc. It will be very emotional for me so please say a prayer for me. In the meantime I wrote a poem and I guess I was thinking of my mom when I wrote it. She was such a wonderful person and always optimistic. I felt like she would want me to share it. I hope it doesn't sound too sad. I wanted to express the things she had said to my dad and I when she got so bad at the end.The true meaning was to have hope no matter what.
 Shelly 
 

The Cost Of Hope

 

I am sick and my body aches

I am scared and I’ve got the shakes.

 

No going back; can’t change a thing,

I just pray God will remove the sting.

 

Sometimes I feel so lost and blue

and there I’d remain if not for you.

 

Your smile, your kiss, your tender touch;

it’s what I crave so very much.

 

We laugh, we cry, you and me.

That’s how it is and how it’ll be.

 

Keep strong with hope when I cannot;

because you know hope can’t be bought.

 

Keep strong with hope for you and me

because that’s how it is and how it’ll be.

 

You’ll notice this illness has changed who I am.

I’m no longer a lion but am now a lamb.

 

I know right now my mind’s not right

I get confused both day and night.

 

I can see through the haze of my cloudy mind

the wings of an angel with eyes so kind.

 

It doesn’t matter if you know who I am

it is kind of you to hold my hand.

 

I know everything you’ve done for me

was out of love and that was free.

 

There is no price or cost for hope

it’s spiritual and helps me cope.

 

So share these words with those who cry.

I’ll give you hope which you can not buy.

 

                                         Michele Agnew

 

 

 

 

 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/14/2008 8:07 PM (GMT -7)   

Shelly  I love your poem.  I feel that I can keep going as long as I have hope.  Jerry and I are at Vanderbilt now for two days of out patience testing.  Then the committee meets and hopefully he can get on the transplant list.  I'm so nervous because he has O type blood and I'm afraid its going to be harder to get a match.  Do you know anything about the live donor program.  Jerry wants to look into that.  He's going down hill so fast!  This last time in the hospital was scarey.  He got so dehydrated.  Sorry I'm going on and on.  Your mother must have been so proud of you.  I hope tomorrow is a better day for you.

 

JoAnn


Pink Grandma
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Date Joined Nov 2006
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   Posted 1/14/2008 8:10 PM (GMT -7)   
Shelly, that was a beautiful poem. Your mom would be proud of you. What I am saying?...........she is proud of you. My thoughts and prayers will be with you tomorrow as you do what needs to be done. When I went through my husband's clothes and packed them away in November, it was not as hard as I had anticipated. I only cried after I got it finished. While I did it .........it brought back fond memories. 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.


1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 1/14/2008 9:23 PM (GMT -7)   

JoAnn, an autologous donation is when you have the blood bank draw and store your own blood before surgery. There is also something called "directed donation." If a family member/members have the same blood type they can donate directly to Jerry. That has to be pre arranged. Ask the Dr first if he/she will allow it then speak to all the immediate family and see who has his blood type. Most adults know what type they have but the blood bank will definately retest the possible donors first. They have to make sure that it is an absolute match with no antibody problems. NEVER worry about going on and on as you say. We are all in this together! Type O blood is the most common blood type. Is he - or +? I am sorry to hear that Jerry is deteriorating. We will all pray that he gets on the transplant list and recieves a liver quickly. No matter what the outcome of their decision at Vanderbilt just have hope.

 Hugs, Shelly

 Pink Grandma, thank you for your input. I know I can do it and I will survive I guess it's just the memories and the heartache taht haunts me. My poor father has not been doing very well. He is so depressed and sad. I want to see him laugh again and be his old self. He is such a joy and I love him so much. It hurts me to see him like this. Anyway, thanks again.

 Shelly


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/14/2008 10:03 PM (GMT -7)   

Thanks Shelly  Thanks for the info.  What I was talking about by a living donor is when they take part of the liver from one of Jerry's sons and give it to Jerry.  They say the donors liver will grow back to normal within two to three weeks.  Also the receipent will grow a complete liver.  Have you heard anything like that.  From what I have read it has been very sucessful.  Be patient with your dad.  He's lost his best friend.  Jerry's mom lost her 41 yr old daughter and 8 mths later her husband.  It was horrible.  Then the poor women lost all three of her brothers last year within 7 days.  She's the last one.  But she still has two living children and a whole slew of grand children and now has 10 great grandchildren.  We sure have fun at Christmas.  She thoroughly loves it.  She does have her blue days but we try and talk to her every day.  I f anything happens to Jerry I just don't know how she is going to handle it.  Hopefully your dad has some of those grand babies to cheer him up.

JoAnn


1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 1/15/2008 12:17 AM (GMT -7)   
JoAnne, sorry. I thought you meant a blood donor. Anyway, what little I know about a living donor for liver transplant is limited. I know that there is quite a bit of criteria that needs to be met. You are right about regeneration of the liver for both the donor and recipient. The donor is in the hospital for about a week I think. They take a portion of the right side of the liver for transplant if I am not mistaken. I'm sure there are people on here that know alot more about it than me. While you are at Vandy why don't you ask if you see the Dr. There may be a possibility that they will consider it or at least tell you why they won't.
I feel bad for your mother-in-law. How horrible for her. We will keep positive for Jerry.
 Hugs, Shelly

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 1/15/2008 2:14 AM (GMT -7)   
    
     Sorry to hear about your mom. That was a wonderful poem.  I hope someday to be remembered like that.
     I went for my eveluation in October. Got listed in December. Probably very low on list. Will have to waite for quite some time unless I get very ill. Right now it is just my memory. Which is sad because I can remember all my childhood memories , but forget what happened yesterday. What day it is , what happened 20 minutes ago. So I can relate to the confusion your mom went through. People think I'm not paying attention. I do !!! but I forget things quickly.  Good luck today.  I could'nt have handled cleaning out my moms things.  She had a massive heart attack 8 years ago and it still seems like yesterday. She was 89. Hope I have a little of her stamina. She was very strong up to the end. Had 12 children. And here I am #11 and falling apart from a long ungoing (undiagnosed) disease . Oh well thats my life for now.
     When I went for evel. My husband went with me to every appointment. So he could be my (memory).  He wanted to be a doner he is 0+ . I just could'nt accept. My son wanted to be a doner as well but again I could'nt accept. He has two small children and the risk is to high. My grandchildren need their daddy. He's my only child. My sibling are not in good health except for my younger brother.But again He has his two boys and a grandchild.
      I have severe arthritis and am no longer able to take any type of meds. Due to over use of Tylenol , Ibuprofen, and other prescribed meds. Which they think is the result of my Cryptogenic liver disease.
     Enough about me. Hope every one keeps in touch . I need some one to listen to me gripe Even if I have to reread the post 12  times so it sinks in.
     Please excuse my errors. I do not Edit my posts or I would end up erasing everythin.   june
    
 

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 1/15/2008 5:16 AM (GMT -7)   
Shelly

What a wonderful poem to share with all of us. It brought back memories of my own mother. I know how hard this time is for you, not only because of your mother but dealing with your fathers grief too. I know in my heart that my father died the moment that my mother did. His grief was so deep and would say at the times that he allowed himself to be soft that he was so lonely. In ways watching his decline was more difficult that dealing with the death of my mother.

Please keep those positive thoughts of your mother close to your heart while you deal with the heart wrenching details of the end.

My thoughts and prayers will be with you today.

Lucy

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 1/15/2008 5:22 AM (GMT -7)   
June

We all need people to listen to us gripe when we need too, please feel free to do that here. It helps me sometimes just to know that other people are feeling the same frustrations and aggrivations that I am, even if there is nothing concrete that can be done. Don't worry about the typo's. We all make mistakes.
Will keep postive thoughts that they will find a donor soon for you.

Lucy

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 1/15/2008 7:04 AM (GMT -7)   
Goodmorning All,
I've been down with broncial nemonia for the past week so I'm trying to get caught up! Took Will to Shand's Fri. for apt. 3hr.oneway drive for 15min. office visit they cancelled CT again and rescheduled for April 3 and 4. First question when we got there was about MEDICAID. Go figure! He stoped by this morning to check on me and he's sick with a bad cough, sore throat and chest hurts. He said he has been sick to his stomache all night! I have a call in to the Dr. not sure what meds he should take! I sure hope I didn't give this to him mine was from a sinus infection and I was only with him on Friday.
Shelly, your poem is very touching and written from the heart, which I know is acheng. I lost my daddy 10yrs. ago and even tho he is not with us in person I feel his spirit with me always and talk to him daily. Your heart will heal with time! I'm sure your mom, was very proud of you your a very kind and generous woman!
Joanne, if you haven't got info on the live donor yet go to lifelinkfound.org  it pretty much tells you what you need to know. It is risky, but I've read the success rate is very good! The criteria, is you the donor has to be of perfact health fisically and mentally also financially as you could be out of work for up to a year. Check it out!
Hope all is staying well and know you are in our thoughts and prayers.
Huggs and Smooches,
Toni

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/15/2008 5:53 PM (GMT -7)   
Hi Well we just finished our first day at Vanderbilt with nutritionist, the head surgeon (which I like very much) Psychiatrist who was very informative.  I could have listened to her all day.  Jerry also had a Pulmonary function test.  Also met with the NP of the Liver specialist.  He expained step by step what will happen.  We also learned that Jerry's MELD score was an 18.  the nurse just poked her head in the door to tell the surgeon what the score was so I'm not sure the date that was documented.  No one has ever discussed what his MELD score was.  The surgeon said he is a pretty good judge and he thinks Jerry's score is probably in the mid 20's.  That really scared me.  He confirmed what I was thinking.  We did discuss live donor with the NP.  Basically it takes aabout 2 months of preperation.  They would start with one of Jerry's sons at a time.  In order to be considered for a live donor the receiptant must have a MELD score between 12 and 18.   Tomorrow he has more tests all day.  Next Wednesday the comittee will meet to determine if he can be put on the list.  I do know his blood type is O but not sure if its positive or negitive.   Thats pretty much it.  I'm kind of down tonight but I will be better after a good nights sleep.  I will keep in touch.      JoAnn

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 1/16/2008 4:24 AM (GMT -7)   
Joann...........I wish you and Jerry the best of luck today with his testing. I know that yesterday was an exhausting day. It always is sitting and waiting at the docs, but it certainly sounds that things are finally getting acomplished and you are on the right road. My thoughtas and prayers will stay with you both today. Keep us posted.

Toni...........Sorry to hear both you and Will are feeling ill. I am sure you are worried about how illness will affect him. Will keep you both in prayers.

Lucy

ggirl
New Member


Date Joined Jan 2008
Total Posts : 13
   Posted 1/16/2008 6:32 AM (GMT -7)   

Good Morning Everyone,

Shelley, like everyone else said your poem is very beautiful. I have only lost one person in my life it was very hard and even harder for my husband.  I know this time has to be very hard for you but you have God and the Angels with you I hope you can draw strength just knowing that.  I worry about my husband leaving us because of his liver disease all the time and even though we are apart alot I always know I will see him again.  I don't know how I would handle loosing him.  Anyway, may you find some peace in what you have to do today and God Bless You.  Gina


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/16/2008 4:55 PM (GMT -7)   
Hello Everyone  Well, day number two is over.  Even though we were feeling tired we were very encouraged.  That is until I got on the computer and up pops a message from the psycologist.  Even though Jerry is seeing a counselor she has decided he needs to complete a six week program before she will let him on the transplant list.  I am so frustrated I can't believe it.  We got approval from someone on the team  re the counselor we chose.  Now they throw this at us!!!  Why didn't they tell us months ago.  He could have been finished by now.  Now another delay and I'm starting to panic.  Jerry doesn't have a LOT of time.  OHHHHH I'm so frustrated I could scream!!!  We head home tomorrow if we don't get snow in.  That would just by the icing on the cake.  Thanks for listening.    JoAnn

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 1/16/2008 7:16 PM (GMT -7)   
Oh JoAnn, I am so sorry. I know how disappointed you are. When they turned down my husband the first time I was devastated. Even though he had already stopped drinking for 2 years on his own they required that he go to AA first. Even though he had lost over 70 lbs and the surgeon said that any excess weight would not hinder the surgery they said he had to lose about 27 more pounds. They have your husband's life in their hands and it stinks. I realize that they are trying real hard to give liver transplants to the best candidates but when it's your own family who's life is at risk it is so hard to deal with the delays. They have you jumping through hoops for months and months and then when you can see the light at the end of the tunnel... it's like they put up a road block in the middle of that tunnel.
Hang in there JoAnn. Don't give up. Recharge your batteries and start going again. It's a set back but it not the end. Special thoughts and prayers are coming your way.
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.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/16/2008 8:05 PM (GMT -7)   
My batteries are recharging!!  I'm going to take a hot bath get a good nights rest and get going tomorrow.  I have already e-mail my daughter to make the appointment first thing tomorrow morning for Jerry.  So by the time we get home hopefully he can begin immediately with the what ever the hell that thing is she wants him to attend.  Its a six week ordeal.  Don't get me wrong its probably a good thing for him and I plan to go with him.  But it sure would have been nice if they would have told us sooner.  We have done everything they asked.  The thing that upsets me so much is he's not even on the transplant list yet.  She e-mailed me back and said not until he completes the course!!!  I feel like they are playing GOD!  I will be OK tomorrow.  Thanks for listening.  JoAnn

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/17/2008 12:03 AM (GMT -7)   

{{{{{{{{{{{{{Shelly}}}}}}}}}}}  That's a big virtual hug for you.  I know how difficult it must be for you to have to go through your mom's things.  That was a wonderful tribute you wrote to your mom.  You will get through this.  BTW, my daughter's middle name is Michele.

Sorry I've not been on here in a couple of days, and feel like I'm really behind in what's been going on.  I'm not able right now to respond to each of you personally, but I did read every post in this thread.

JoAnn, I know you must be beside yourself with frustration about the delay!  But what can you do?  Just go with the flow...and that is what you are doing since you've already made arrangements for an appt. to be made to get this 6-week thing going.  My prayers are with you and Jerry.  It is very frustrating to me that I have O+ blood, which is the "universal donor," and I am unable to donate blood because of the hepatitis.  I also have impossibly difficult vein access.  When I had my first hip replacement, I was sent to the blood bank to have the pints drawn.  They test for EVERYTHING...even though the blood was not going to anyone else.  I finally found out I was free of HIV.  I'd been afraid to get tested for it, feeling the hep C was enough bad news to deal with.

What you were told about the living donor thing is what I was told at Mayo--that it takes about 2 weeks for the donor's liver to regenerate, but 4-6 weeks for the donee.  The right lobe of my liver that was removed is not expected to grow back, as they did not leave any tissue for it to do so, and it was all shriveled up and basically dead from the chemoembolization and TheraSphere to shrink the tumor.  If the left lobe should fail (I do have some cirrhosis and still have hep C), then I would need a transplant.  I am hopeful that this won't be necessary and I will do fine.  The remarkable thing is that the left lobe of my liver grew to twice its normal size, prior to the surgery.  The body knew that it needed to take over the function of the defunct right lobe.  Isn't that amazing? 

Shelly, why would a living donor need up to a year off from work???

I have been really busy lately, trying out slow cooker recipes, shopping, and helping out someone who is gathering info for a proposed book.  Also battling on the phone with the postal service and credit card companies over payments that were sent on time, but never received...therefore sticking me with late fees!  I had also sent two gift cards about a week or so before Christmas (one to my granddaughter in the next county) and they were never received.  I really felt bad about that, but can't afford to replace them.

Anyway, it's 2 AM and I must get to bed.  I should have some free time soon and will try to catch up on the forum then.

Hugs to all,

Connie

 


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 1/17/2008 7:02 PM (GMT -7)   
Hi Everyone, I also have gotten behind on the posts here. I wasn't able to check in yesterday. I wanted everyone to know that I am catching up now.

Shelly, Your poem is so beautiful. I wrote one for my mom when she passed away also. I know that it must be really hard having to go through all of her things. Maybe you will be able to find some wonderful memories within them. My husband and brother-in-law packed up my mom's things. She was shot to death by my stepfather, and I didn't think I would be able to handle seeing her home. But her things were brought back to my sister's house, and we all went through it together. We couldn't believe all the things she had hung on to over the years (pages from coloring books, our art work from childhood). The memories were happy and sad.

Joann, I just wanted to say hang in there, and my prayers are still with you. I know they are going to be answered, and Jerry will be well soon.

Toni, I hope you and Will are feeling better.

My heart and prayers are with all of you.


Butterflythree
 
There is always hope!

Post Edited (Butterflythree) : 1/18/2008 4:27:38 PM (GMT-7)


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 1/18/2008 3:47 AM (GMT -7)   
 Joann; try to think of what you've already gone through . Five weeks is nothing in comparison. Good luck to both of you. I know the caregiver does take the toll.       june

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 1/18/2008 4:00 AM (GMT -7)   
Joann

I know you felt like the rug had just been pulled out from under you, but you will recharge and be ready for the battle. Seems we find the strength to do what needs to be done even when we don't think we can. Keep postive thoughts (I know it is hard) and trust that things will work out. Hope you and Jerry had a safe trip. My thougths and prayers are with you both.

Lucy

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 1/19/2008 5:12 PM (GMT -7)   

Hi Everyone, I just got home late today. I was able to take care of all my mom's things and my dad was able to help me a little. We cried at times and laughed at times but overall I did better than I thought I would. He is holding up Ok right now but remains a little depressed and sad. I think removing her clothes and other things helps. He doesn't have to look at them every night now. I guess my being there helped him emotionally too. Just having someone to talk to that understands his grief. My poem was probably a little silly but I really felt it in my heart. Thank you all for letting me share it with you and for you not laughing at it.

JoAnn, I am disappointed for you and Jerry having to wait 6 weeks longer for an answer. I don't blame you for being frustrated, I would be too. The set backs only make us stronger honey. It doesn't seem like it but it does. We do what we have to do even tho we don't think we can. Keep reminding yourself that your glass is half full - not half empty. Jerry will take your lead. However you see things he will probably follow suit. Staying positive is such a difficult thing to do when there is so much adversity I know but it does make a huge difference in many ways. You know that my thoughts and prayers are with you both. I am here for you as is everyone else. You can vent, scream, yell, cry, or whatever you need to do and we will understand. Then as you know in your heart when you have done all the screaming you have to pick yourself up by the bootstraps and start again. One day at a time is all you can do. Do you remember when you were in school (high school and/or college) and you marked the calender for the countdown until the semester was over? Half way thru the semester we called it "Hump week". It really made us feel good when we got to hump week because we knew we were on the downhill side. Maybe seeing it in black and white would help both you and Jerry. tongue Sometimes these little psychological games are useful. I believe in doing whatever it takes to get us thru these rough times. I guess it shows us how far we've come rather than how far we have to go. Justa thought anyway.

I love you all and I'm glad to be home!!!!!!!!!! Shelly

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