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