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Posted 9/8/2008 3:13 AM (GMT 0)
Hello everyone, especially the ones who haven't posted in a while. We have so many members now it's getting hard for me to keep track of everyone. I don't want anyone to feel like we don't need them. We need everyone.

So if you haven't posted in a while please reply to this post and let us know how things are going for you.

Thoughts and prayers to all...........
Posted 9/8/2008 11:57 PM (GMT 0)
Hello Pink Grandma,

I know it is has been a while but I do read the new posts daily (almost). I am doing OK, awaitting my new granddaughter who is to be delivered on the 15th. My oldest is boy is having serious medical problems (it is his baby we are waitting for ). He has been in the ER 4 times this week. He was born with pectis excuvatum (sp?) and had major corrective surgery when he was 9. He is experiencing severe pain and they are trying to figure out what is going on. He has also been blacking out during these episodes. The cardiologist does not think it is his heart but a bone and muscle issue. We go back tomorrow. I am taking him to Social Security asap. He is only 22 with 2 almost 3 girls and feels like he is a failure. His wife is not supportive at all ( and yes I am keeping in mind she is about to deliver any moment), and he moved back in with me for now. They are seperated but I am hoping this is a temporary thing. about myself, I had a wonderful picnic for the family over the holiday weekend. However I don't think my family will ever eat my potato salad again. I gave us all food poisoning. Guess it was left out longer than I thought. Fortunatley I was the only one who ended up in the ER. I am back at work now and feeling better. I hope all is well with you. I'm at work now but I promise to try and post more often. Love and prayers to all.

Pasey

Posted 9/9/2008 12:07 AM (GMT 0)

Hi, Pasey.  I hope that the docs are able to find the source of your son's symptoms and be able to treat him successfully.  Also, best wishes for a healthy grandbaby.

Hugs,

Connie

Posted 9/9/2008 12:18 AM (GMT 0)
Hi Pasey, My thoughts and prayers are with you and your family. Congratulations on the grandbaby on the way. I have two grandsons (15 months and 1 month). They have brought me so much joy already.
Posted 9/9/2008 3:12 AM (GMT 0)

Hello Pink Grandma

Life sucks these days.  The liver cancer has spread all up and down Jerry's spine from the C1 down.  He's lost so much weight and is sick most of the time.  I keep hearing everyone say get a second opinion, try this try that, but they tell you before you get a transplant, that they don't do transplants if there is cancer anywhere but the liver, because if there is any it will go crazy, guess what they are right.  I'm glad he got the transplant, because the family has had time with him, but as much as I hate to say it, he has suffered so much in the last 2 months, that it's time.  We took him off the Nexavar and when it got out of his system on Friday he actually got up and ate did some brushhogging, mowed, sighted in a gun and let me cut his hair, then Saturday he was OK, but took it real easy, Sunday he was down all day, same today.  He's real sick tonite.  I'm going or maybe already am crazy.  I cry alot and pray alot.   Keep us in your prayers.  I try to check the post and keep up with everyone.  Take care all.

Helen

Posted 9/9/2008 4:52 AM (GMT 0)
Hello Pasey and Helen, So glad to hear from you both.

Pasey I am sorry about your son and daughter-in-law separating but I am glad that he is with you. And working does help take your mind off of things for a while. At least it does for me. And congratulations granny.

Helen I know that things are getting real tough. cry

Hang in there. If you need to talk with someone.......email me and I will call you or visa versa. You know I totally understand your feelings.
And you don't have to keep up with everyone Helen. Right now we are here for you.

My thoughts and prayers are with both of you and yours......take care.......
Posted 9/10/2008 1:18 AM (GMT 0)
Hi Helen, I am so sorry to hear that things are so bad. My heart goes out to you. It's good that Jerry had a couple of good days. I'll keep praying for you.
Posted 9/10/2008 4:19 AM (GMT 0)

Helen, I am also sorry to hear how bad things are.  I know the stress and anguish you must feel.  I can tell you that bone cancer is the most painful form of cancer, so I hope that Jerry is receiving good pain meds.  Have you contacted Hospice?  They are so helpful with meds.  They would know exactly what he needs and how much.  There is no reason he should suffer.  That's amazing that he actually got up and out and did the things he did the other day.

Sending you positive energy and healing thoughts,

Connie

Posted 9/10/2008 6:11 PM (GMT 0)
Hi Pink Grandma,

I'm happy to report my Hep C is still under control & not controlling me. I have bad days & can tire easily, but for the most part am very happy
that my annual biopsy results remains the same, a high stage 2. I had a successful C-spine fusion this summer and am well & happy. I credit this good fortune to my diet & lifestyle, ongoing support and the divine plan. I also believe in taking medication for my depression, ocassional anxiety & sleeplessness. I know this is is a trade off as these drugs can affect the liver, but for me its worth it. I try to do everything I can to reduce stress as the virus LOVES it & taking these drugs is part of my stress management regimen.

Hope you are well and the summer has been good to you!

Best,
Cary
Posted 9/10/2008 6:19 PM (GMT 0)
Hi to all

Passey, so glad to hear from you and congrats on the new upcoming new grandbaby.

Helen, so sorry to hear about Jerry. My thoughts and prayers continue to be with you and your family.

Cary, love the attitude "the hep C is under control and not controlling me" we all need to have that feeling once in a while.

Lucy
Posted 9/11/2008 12:45 AM (GMT 0)
Wow Cary, I am so happy that you are doing so well and have such a positive attitude. yeah I know dealing with this disease.... a good attitude is not always easy to have.

I still have a problem with sleeping and have to take Ambien. I use to be anti drugs even medically for me. But as I have gotten older realize that if taken as prescribed they can give you a better quality of life.

Keep on trucking Cary......you are in inspiration for everyone.......

Thoughts and prayers........
Posted 9/11/2008 2:41 PM (GMT 0)
Thanks Pink Grandma,

Worries, what ifs, and why me's - never solved a single problem. I try to find something good about every day and begin each day with gratitude.
Yes, I agree that drugs can improve quality of life. I struggled for a long time against taking them, but accepted the fact that I was really depressed. The drugs have helped me manage the day-to-day quality of my life and I am now grateful for taking Drs. advice & taking them.
There's no shame in taking needed medication & I still get ctiticized by some of my organic Hep C friends for taking them - I believe there can be a balance. It works for me.

Best,
Cary
Posted 9/11/2008 4:19 PM (GMT 0)

Hello All,

Thank you for the prayers and support it is very much needed. Will is doing better, stress has definatley taking it's toll on him and Me as well! I actually think he's also going thru sympathy pains too. I recieved his Dr.'s reports from the ER and not sure how to take this? Will's fiance was posative for "trike" which is a parasite that is transmitted sexually and evidentley Will was concerned enough to talk to the ER DR. privatley to be treated. On his report in Dr's. instructions it read Patient wishes to keep secret from mom about this "std" I'm sure it is pretty embarrasing for him to tell mom, anyway, not sure how to read the test for this to find out if he had it or not but, he got treatment anyway. I of course did research on this and my main conceren is for the baby,fiance is now 10wks pregnant. I'm not sure how this could effect Will, of course with him having ESLD HEP B which fiance is negative for Thank God! Anyone with input please, I have no clue who to talk to or get info as Will, nor his fiance know I know. I decided he will tell me when he's ready! You all are still in our Prayers and Thoughts. All we can do is keep the strength and the faith that God helps us thru one day at a time.

Talk to you soon,

Huggs and smooches,

Toni

Posted 9/11/2008 10:30 PM (GMT 0)
Hi Grandma..............my situation hasn't changed. My spouse is still drinking 1/2-gallon of Vodka every 24 hours. He still refuses medical care. Next year, 2009, will be his 4th year in drinking this huge amount.
I don't know how he's still alive; but I see liver disease symptoms "physically" - of course, I can't tell what's going on exactly in his insides because he refuses to see a doctor. I see asites, ankle edema, diarrhea, very dark urine, daily activities TOTALLY GONE........he MAY shower once every 2 weeks.
He sleeps a lot as well. Oh, he also has these prominent red blood vessels across his abdomen inching upwards. Squiggly like vessels. Not engorged, but extremely visible. What is that?

MiMi in Memphis
Posted 9/11/2008 11:12 PM (GMT 0)

Toni, thanks for checking in.  I wouldn't worry about the STD, since it was treated.  I understand your concern about the fetus, but I'm fairly sure there's no way to know at this point whether the baby is affected.

Cordovian, it's amazing how much punishment the human body can take.  It does sound like your spouse is going downhill fast.  The dark urine may be an indication that the liver disease is affecting his kidneys.  The blood vessels you mention could just be spider veins or something similar, from his increased abdominal size.  I don't know how you can continue staying with him.  You must be one strong lady.

Hugs,

Connie

Posted 9/13/2008 4:33 AM (GMT 0)

Hello, I also am checking in.... I have missed checking in here. I guess I have just been busy causing havoc I gave my HR manager 30 days to come up with a plan for me to keep my job..... he still doesnt have one..... gee no kidding. I have hired a young girl to come in to help ( hubby loves that nono ) a redhead too. Believe it or not Cerebal Palsey got our insurance to approve paying her 10.84 an hour for 23hrs a week, way better than what I had which was NOTHING. I now have hubby in therapy I told him he used to be Doug who happened to be sick and now he is SICK DOUG and it feels like there is this big elephant in the room and we are all ignoring it.  Oh and the best fun I had recently..... my stepfather fell of the wagon pretty bad, he lives over 300 miles south, he ended out in the hospital. WEEELLLLLL I called the hospital and told them I went down there in January to bury my mom and also detox him for the service. I told them he was a "FALL RISK" and also to watch his solid foods he really does better with clear fluids.........hehehe so I wait 2 days and call him in his room, oh my he couldnt understand why he had an alarm on his bed and he was staving to death..... hehhehe I did tell him what I did... out of concern for him of course. Doug said I got too much joy from it.... maybe I should increase my meds.. hehehe.

I also have been trying to get Doug out of the house more, took him and grandson to Jimmy Buffet, couple of weeks ago I turned our amex point in for Kid Rock and Lynard Skynard that was fun more than Buffet for me anyway. Hubby likes Buffet...... I am a Willie fan. Going to Farm Aid next weekend with my girls.

Doug is going through a rough time lately, more tired than usual so the wheelchair is being used more often. Even with fluid gains he is losing body mass so fast so the scale goes down yet the belly grows. sad  

It does get so hard to watch but we keep our humor going and just take each day as it comes

Sue                                                                                             

Posted 9/13/2008 6:00 AM (GMT 0)

Hi, Sue!  It's so good to hear from you!  I'm glad you were able to get some help, and also that you are getting out to some concerts.  Regardless of how ill Doug may be, you still have your sense of humor intact and that will sustain you.

Big hugs,

Connie

Posted 9/13/2008 6:10 AM (GMT 0)
Hello Toni,Mimi and Sue, So glad that you each checked in.

Toni, being a mother is tough.......even when they are adults. It's hard to be able to step back and let them make their own mistakes. The mothering instinct doesn't go away just because they are adults. I still am learning to bite my tongue where my adult kids are concerned. Now where my granddaughters are concerned it's even harder.

((((Mimi and Sue))), I wish I could make it better.........

Thoughts and prayers for all of you and your loved ones...........
Posted 9/18/2008 6:02 PM (GMT 0)

Hi Pink Grandma,

I am new to the forum, but I have found it to be a very good place to come. I've only been diagnosed with Autoimmune hepatitis for the last 6 months and well, I'm ok now, but I wish I knew about this forum about 5 months ago when all I wanted to do was cry.  I'm feeling pretty good these days and I go back for a follow up appt with my doctor on Monday and i PRAY that all is well. smilewinkgrin

I am trying my hardest to wake up every morning with a positive outlook on life, each day that I wake up is a day worth celebrating! So my goal is to continue to live each day to the fullest and not let the disease control me...

Still going...


LadyL

 

Posted 9/18/2008 9:03 PM (GMT 0)
Hello LadyL, I am so glad that you found us. I think everyone has the same sentiment........" wish I found it sooner." But at least your with us now.

I know that trying to deal with the diagnosis is awful. Once to get through all the why me's and anger then it's time to take a proactive step in your health care. And this is two of the steps........getting support and getting educated.

As you have found out already we do have a bunch of wonderful members so welcome to the ranks.

Thoughts and prayers............
Posted 9/19/2008 10:31 PM (GMT 0)
Hello to everyone and my thoughts and prayers to all in these posts and all of you who are so helpful by "just being there".

Anyways...I believe the last time I posted was a month ago when i returned from the CPMC in San Francisco from TP evaluation. Well since then I have had real good days and real bad days. The muscle aches have ghone from bad to worse. Feels like the flu times 20 lately. Starting to blow up again from ascites. Although I can say that I haven't been "drained" since the middle of August which is a first for me. I just received 2 letters from CPMC that stated I have been denied being put on the transplant list for now due to my financial situation. I am on Nevada medicaid and am on SSI as of July. Nevada will pay for transplant but not anesthesia and a few other IMPORTANT treatments that are necessary for TP. I am really upset about it basically because the coordinator and the Hepatologist in SF said right to my husband and myself that I was a great candidate and although my MELD score is still low at the time, I "would" be put on the transplant list. And no, I did not misunderstand because I said right back to both of them and asked were they sure and they both said yes. I don't lie and I really hate being lied to. I guess what i am upset about the most is that I was told that as long as I was on the list, if for some reason I suddenly got real sick and put in hospital that I would get better care and knowledge etc from the Dr's. I guess I am going through another "poor me"" minute or two and i hate that. My husband is real good about taking me to Dr but just does not understand yet ( and doesn't want to) about how I feel physically.

OK enough of my ranting about myself. And just for those who don't know, I have ESLD, Hep C, encephalopathy, ascites,portal hypertension,muscle wasting and every thing else that goes with it. But I want to thank all of you for all your info and personal experiences that you share so that someone like myself will know that we are not alone. You are all a God send to me and like others, I wish I would of found you earlier.
So prayers for those who are sick, recovering and caretakers. Keep positive thoughts ALWAYS

Karen in Nevada
Posted 9/22/2008 3:58 AM (GMT 0)
Hello Everyone, Hope everyone is doing well. Matt is feeling sick ever since starting the lactulose. He says he has bad cramps and he's stomach just hurts. I told him last week he was not going to eat red maet anymore. He agreed but begged for one last steak!! I let him eat that tonight. He has not drank anyhting since Aug.2. It's hard for him, i catch him staring at beer in the store. I always offer to buy him special drinks (sport drinks or fancy soda)  when i go shopping. He like those cream sodas in the bottles! I can't wait till we go back to the doctor at the end of the month. We have a lot of questions and hope to get some answers! I had to pay out of pocet for that lactulose. It was not covered! Well wishing everyone a good week!
Posted 9/22/2008 11:58 PM (GMT 0)

Mia, I think that is to be expected...the Lactulose making his stomach feel uncomfortable.  Hopefully, he will get used to it.  That is GREAT that he's still not drinking.  Let me tell you that 22 years after I had my last drink, I still have to rush past those beer and wine displays in the store.  So try to divert his attention when you catch him staring at them!

Karen, I just saw your post, above Mia's.  You know, you can ask for an appeal from Medicaid re: the treatments/medications you need.  Ask for your caseworker.  Someone has been assigned to your case.

Hugs to all,

Connie

Posted 9/23/2008 1:21 AM (GMT 0)
Connie.. thanks for your input about getting a hold of caseworker. Thats what I love about this site. Hi and prayers to everyone

Karen
Posted 9/23/2008 2:51 AM (GMT 0)

You're very welcome, Karen.  You may have to be persistent, especially with government agencies.  Remember "the squeaky wheel gets the grease."  You don't have to be obnoxious or threatening...just be firm in your stance that you need certain tests and medication before you can have a needed liver transplant.

Good luck!

Connie

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