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Mary1
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/23/2009 7:50 PM (GMT -7)   
Hi Everyone, the other day I found all of you wonderful people, I needed you then but what a difference a few days make and I need so many prayers now!!! When I posted my first message I sent a reply and now I know I should have done it differently. Here's my story, my husband Dave has hep C & for quite a long time ( years ) his liver was doing pretty well. Last week Dave was really tired and on Thursday while I was at work our son couldn't wake him up, he would respond briefly and then fall asleep right away, I also noticed his belly was retaining a lot of liquid. I told our son to bring him to the ER at our local hospital, now I know what extremely high ammonia levels will do to your body! After three days he woke up, he felt better with his belly drained and his confusion was almost gone. Two days later his belly and all around his entire belly was a severe hematoma, Dave told me he fell on the floor in the hospital the nurses never told me, I guess that was why he was restrained on the third day, keep in mind this hospital is horrible and everyone in our community knows not to go there with a severe emergency, they are great for stitches and a band-aid but that's it!!! Last Thursday our daughter took Dave to our family Dr. to see what he thought of the hematoma since it now covers the upper half of his body, our Dr. said to take him to UCSF since his liver specialist is there. The next day he had a MRI and Cat Scan, before I called his Dr. to see how the tests came out I was making a list of questions I had for him regarding my intention of becoming his living liver donor, I was shot down pretty quickly when he told me he found a 9 cm tumor on his liver and spots on his lungs. I'm still not out of shock and trying to get the swelling down on my eye lids after two days of continuous crying. I couldn't hear anything the Dr. said to me after that, I finally met him today and I will continue our story on my next posting. sad

Miss_Melissa
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/23/2009 11:16 PM (GMT -7)   
sending you prayers and good thoughts.

Mary1
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/24/2009 2:04 AM (GMT -7)   
Thank you so much Melissa, we need as many as we can get. Hope your doing well, a hug to you!
Mary1

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 8/24/2009 5:28 AM (GMT -7)   
Hi Mary and welcome to HealingWell. I am so sorry that your husband is suffering with liver disease. First I want you to know that you are not alone. We are here for you. We have collectively all either been through this or are currently going through it. We can all relate to your situation. It is devastating to receive the news that cancer is involved I know. I went through it with my mom. To answer your question oral anticancer agents are unlikely to cure him. At best it will give him a few extra months or years. I do want to say that miracles do happen and you should never give up hope. Realistically though it would appear that your husband is terminal. I also know that you have to take care of yourself or you will be no help to him. You have to get your rest and get some sleep. If not then you will get sick too. It seems like (at least for me) that it was impossible to get any quality of sleep because I was so scared that something would happen to my mom while I slept. The reality was that we all wore ourselves out by not sleeping while she slept most of the time. The best advice I can give you is to become as educated as you can about liver disease. We have an educational thread here that is in the Resources area under the topic area. Click that and you can get some insight about this disease. We have had several people contribute some great information there.
You will find that coming to this forum will really give you some great support. Everyone is very caring and understands what you are going through. You can just vent or ask questions and the members will be there for you.
I think it is important also to handle any legal issues that need to be attended to. Such as, a will, healthcare surrogacy, and a living will. It is easiest to do while he can still answer questions. Otherwise, there could potentially be some unpleasant issues late on.
Now that you know the diagnosis you can write down your questions for the Dr. Take your time and make notes when you talk to him/her. If you don't understand what they are telling you then tell them that. Have them explain in terms you can understand. I wish you both the best and I will pray for you and your husband.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Mary1
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/26/2009 7:35 PM (GMT -7)   
Thank you so very much 1Shelly1, I can't tell you how nice it is to know that I'm not alone, I know that doesn't sound right, I'm sorry any of us are in this horrible disease. Yes, my husband is terminal the news just keeps getting worse, the Dr. said the tumor marker came back very very high and he belives it's also in his blood. They have given him just a few months, I am so scared! I'm afraid of being with out him. What do I do, how do I prepare for this parting? I am so blessed to have such a strong family beside me but today I thought when the day is done everyone still has their own life and families and I will have no one, I do have my wonderful two children 25 and 27 years old and my three little grand-daughters! I feel so selfish worrying about being alone! I married Dave when I was 18, started dating at 16 and now am 49, he is only 58. I am so lost, scared, confused and physically numb, this is absolute torture. Today he had his stomach drained and feels so much better and I'm hoping I can take him home on Thursday. Tonight the liver team at UCSF will be getting together to discuss Dave's and other patients cases so tomorrow we will know what approach will be best for Dave, I'm so thankful he's @ this hospital. Please, can you pray for us? God Bless

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 8/26/2009 9:03 PM (GMT -7)   
 

Hi Mary,

 

I’m so sorry you are faced with such a difficult challenge.  I was there no too long ago.  My husband was diagnosed with a rare liver disease, Primary Sclerosing Cholangitis (PSC), in 1994. At that time, the Internet wasn’t available to the average Joe then and very little information was available at the library.  I stumbled onto this site last year when his liver began to fail.  Regardless of diagnosis, ESLD End Stage Liver Disease patients share the similar symptoms.  This was the only site I found where patients and caregivers were speaking my language.  I cannot say enough about the support I gained here.

 

Shelly is right in that you are not alone.  Here you will find those who have loved and lost, those who are overwhelmed with the prospect of loosing a loved one, and those who have experienced miracles.  We all have incredible stories to share and you will find the most compassionate souls on this site. 

 

Don’t consider yourself as selfish as you are experiencing a natural human reaction.  Too few people achieve what you have—to be so connected to your husband that you cannot imagine life without him.  This is a rare emotion in this day and time.  You have truly been blessed.  Trust that if your husband doesn’t pull through that the Lord has a greater plan for him and you as well.  I don’t go to Church on Sundays as I should, but I thank God everyday for all that he has created.  You must take time to stop and smell the roses.  Life on this Earth is short.

 

My husband was blessed with a liver transplant in January of this year.  We didn’t think it would happen and he almost died on more than one occasion.  It was an uphill battle.  The experience brought us closer than ever.  Many people loose their mate suddenly without a chance to disclose their TRUE feelings—we on the other hand, embraced and confronted the possibility head-on  My love for my husband gave me the strength to pull through regardless of the outcome.  Love is a powerful force and can bring strength, joy and peace in the most difficult of circumstances.  It’s what helps us carry on.

 

I must go back to what kept me going through my ordeal, “The Lord doesn’t load you with more than you can handle” and “That which doesn’t kill you makes you stronger”.   Salvation lies within unconditional love.

 

You are in my prayers.  May God bless you.

 

Penny


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 8/27/2009 3:39 PM (GMT -7)   
Mary, I know you feel lost and alone right now. That is a normal reaction to what you may be facing. PLEASE try to enjoy what time you have with your husband. I read you response and I was so touched by the love you have for him. It is so rare that you have been with your soul mate for such a long time. What a blessing that is. It is really hard to imagine that you can survive without him but the truth is you can and you will. At this moment though he is still with you and there is still time for some laughter and love. Put each moment of happiness somewhere in your memory banks so that later when you feel lost you can pull those thoughts into the forefront. You are also blessed to have children and grandchildren that will be able to help you to cope. There are grief counselors that you can go to when the time comes. All those things are for later though not for now. Talk openly and honestly with your husband. He may need to talk and express his fears and anxieties too. Make sure that all the legal issues are taken care of now so that is behind you both. Then concentrate on the two of you. I hope that today you got good news from the Dr as to the plan that they have. Then all this sadness can be put on the back burner. We care about you both and are here for you.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Mary1
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/28/2009 2:59 PM (GMT -7)   
I can't thank you enough for your kind words and support, it means so much to me!! I truly felt alone until I found all of you wonderful, loving people your words of comfort touch me. I feel that my husband and I are in the fight of our lives. I am waiting to hear from the nurse @ UCSF who will schedule Dave's appt. to see the oncologist. Does anyone have any info. on juicing or vitamins that we may start with? How about any miracle stories? I thank all of you from the bottom of my heart for responding it does help me when I'm so fearful. How have others coped knowing that your soul mate won't be with you much longer? What have others thought about their own future without their true love, how do you go on? I constantly have this over whelming fear about being alone, he truly is my other half. I pray for all of you and again thank you so much for the love you send.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/30/2009 8:52 PM (GMT -7)   

Mary, I just returned back home yesterday after having hip surgery on Aug. 12th, and cannot be online much right now...but I absolutely had to post to welcome you to the forum and tell you how sorry I am about your husband's diagnosis.  I was diagnosed with hep C in '92 and with liver cancer in '05.  The tumor was 11.5 x 8.5 cm and took up most of the rt. lobe.  It had also metastasized to the inferior vena cava (a large vessel that runs off the liver.)  Shands gave me no hope, so I went to Mayo.  They treated me with a study drug that essentially killed the tumor and most of the rt. lobe.  It also shrunk the metastasized part of the tumor back into the original tumor.  It was indeed fortunate that the cancer had not spread to another site.  Then, the entire right lobe of my liver was removed.  It will not regenerate.  I have been cancer free for 2 yrs. and 3 mos.  There is no guarantee that the cancer won't return, but I am so grateful for the time I have been given.  I am using some of that time to help out on this forum and to give people hope.

While your husband's case does seem terminal, I want you to know that you have many people here who understand and care.  I hope you will get hospice involved if he returns home.  They can be of such great help not only to him but also to you and your family.

My thoughts and prayers are with you at this very difficult time.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Mary1
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 9/3/2009 3:47 PM (GMT -7)   
Connie, thank you so much for your kind and inspiring words and thank you so much for even taking the time to post when you are recovering, you are an amazing women and I'm so glad you have been given more time to live life and help others, God certainly has a plan for you, we need you! I hope your feeling better and trying to take it easy? I had to take my husband back to UCSF yesterday because of severe pain, I'm not sure if the cancer is causing the pain or his extended belly but today they are tapping him again, he is sleeping because of high ammonia levels. Well, we finally have an appt. with the oncologist Sept.10th!!!!! I will know more and I pray there is some hope for us, that's it not too late. I was so tense yesterday driving my husband back to the hospital, I felt that I was avoiding every little bump on the freeway so it wouldn't bounce him around, when he was finally comfortable in the ER, I began to have shortness of breath and chest pains along with feeling like I was going to pass out and became so very tired I couldn't stay awake. I guess I had a nice panic attack or what ever the hell hit me. Boy, stress is such a powerful emotion, it had control over me and scared me really bad but at least I was in the right place, ha! Thank you, everyone for the time you take to reply it means so much to me. I pray for each and everyone and your families, God bless us all.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/3/2009 5:21 PM (GMT -7)   

Mary, it does sound like a panic attack.  Breathing is key.  Try closing off one nostril and breathing in through the other, then opening the closed nostril and exhaling through that one.  Then close that one off and inhale through the other, etc., all very slowly.  This will stop an anxiety attack in its tracks.  Or just breathe in and out of a paper bag.

The oncologist will probably note different treatments that may buy your husband some time, if not cure him.  My thoughts and prayers are with you. 

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 9/6/2009 7:36 AM (GMT -7)   
Mary, panic attacks are horrible. I suffered for a few years with severe attacks. I found that over time I could tell I was going to have one and was able to do a few things to stop it. First, I have to breathe deeply in thru my nose and then purse my lips and blow out slowly. The influx of oxygen helps to reduce the anxiety. Then I have to cool down. I don't know if you feel really hot when you have an attack but I do. I use cold water or ice on my face and neck. Then I use either one on my pulse points. That really helps alot. The deep breathing is really effective. I have to concentrate on my breathing and repeat the whole thing about 3 times. The ice or cold water slows my heart rate down some which reduces any chest pain I have. I went to the ER twice because I thought I was having a heart attack. They immediately realized it was an anxiety attack. The ER doctor told me about the cold water or ice. He said that in the 1800's they used to throw people in the lake to cool them off and stop the attack. For some reason I thought that was funny at the time. I could just imagine the panic that some felt when they hit the water and couldn't swim. Now, that would really increase their anxiety right? Anyway, maybe it is my sick sense of humor. If you have any more attacks you will eventually be able to feel them coming on and can nip them in the bud.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/6/2009 11:03 AM (GMT -7)   

Shelly, that strikes me as funny, too!  smilewinkgrin

Mary, how is your husband doing?  How about yourself?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/7/2009 6:38 PM (GMT -7)   

Mary, How is your husband doing? I know how you feel. I started dateing my husband at 17 and we were married at 18 and Im 49 now. If you read any of my posts about us then you know we both have hep c, chirrosis, and I have end stage liver disease. My husband is an alcoholic, stopped drinking for a few months and just started again. We had a long talk today and he is going to give it his best shot to not drink. We both have different ways of dealing with our disease. I am doing my best to fight it,but he just thinks about losing me. He says he cant be with out me. I told him he needs no be here if....... Im not ,for our kids and grandkids. He has to be strong.

Please be strong, and dont be afraid to cry when you need to or call someone to talk to, you are not alone and your family needs you and will be there for you and so will we.

My thoughts,prayers and love go out to you ,your husband and your whole family,

DeeDee

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/7/2009 8:00 PM (GMT -7)   

DeeDee, the best response to your husband's fear of losing you is to tell him to keep on drinking and he will assuredly lose you, as you will not stick around.  Maybe that will get his attention.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/8/2009 5:33 AM (GMT -7)   

Connie,

I did tell him that. I told him that I need to worry about me now and if he continues to drink then I will get a divorce,that I dont need the stress and I dont need to stand by and watch him drink himself to death. I told him I love him and dont want to be without him but enough is enough. He told me that he wishes he could be like me and that he feels like a loser needing to go to meetings,even though he does like them. I told him I was proud of him admitting he has a problem and for going to the meetings and that i think of him as a loser when he drinks. So wish us luck/him, He seems to need more prayers than me. What a dreadful disease,addiction.

Take Care,DeeDee

 

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