LaBunna, I think that is a VERY exciting update!! How wonderful for us to hear how well you both are doing. Your husband really is a miracle. I'm so happy to know that he is helping you out some and that you are not having to do it all. Anyone would have a breakdown over the load that you were carrying.
God bless you and keep you both, and please continue to let us know how you are doing!
Post Edited (hep93) : 10/31/2008 5:59:55 PM (GMT-6)
La Bunna, thank you for the update and how wonderful for you both . I did not know that you had a breakdown but am glad you got through it, sometimes I feel like I am going to have one too!!! Your right, he is one of God's miracles and I pray that my husband will be too. Take care and keep us posted ok,
I am sooo glad to hear from you. I know exactly what you mean about having a breakdown. While Jerry was on life support for that week before transplant, I never cried so much or prayed so much. I still cry and pray like crazy. I am soo happy about your good news, I had been worried since we hadn't heard from you. Take care and keep up the good news.
You give me such hope. By this time of night I'm usually down because I'm tired. We have had a good month. In fact it has been the best in over a year. I knew it wouldn't last but I just did not want to think about that. I ache to be in the place where you are now. I know it will come but the waiting is sooo hard! I think I read your post at least three times. It seems my short term memory is gone. I think its just wore out from trying to remember all the info about this horrible disease! I know its a lot to ask but please keep those wonderful posts coming. It makes me feel so good. Jerry is already due for another blood tranfusion. Its only been 4 weeks since the last and prior to that he had to get two in one week. He has this huge lump in his side that I suspect is his speen. And to top it all off his new MELD is 10! Go figure. That stupid MELD score is enough to give anyone a break down. The Dr.'s act very puzzled. Or maybe I'm just reading too much in to it. I just thank God every day I still have him and pray to have an ending like yours.
Thank you for HOPE
WOW what good advise. Something happened just yesterday to let me know exactly what you are talking about. I dont' want to post it. Thank you so much for this advise
I'm not surprised you had a break down. You went through the entire nightmare BY YOURSELF! Those dogs aren't too good at helping except with love which does help some.
I have had lots of mini melt downs. Those Docs haven't seen anything yet! Not until I have had a TOTAL MELTDOWN. As far as the sleeping. Jerry falls a sleep in between bites of food. He has been doing that for a year! Especially when his blood is low. Also the itching is back with a vengeance so I'm sleep deprived again. We had two weeks of NO itching. That was heaven for me because it drives me just as crazy as it does him (probably not quit as bad). Its so awful I start itching!!! I'm also noticing a big change in his mental status. Something I've noticed that is strange is counting. He has an engineer brain and he is having problems counting things. I'm also seeing a lot of signs of comfusion!
I miss my BFF's they are all in Seattle. I have one here. Her husband had a brain anursym two years ago so she is really a mess. My daughter tries to help but has an 8 yr old and 3 yr old twins! My oldest daughter moved back to Seattle. She was my rock and I miss her terribly! Fortunately I have awsome neighbors. They offer contantly to go to the drug store etc. That is a big help.
I know your husband is dead set on letting anyone know where you are but if you can figure out a way to call me without your number showing up. Please do!!!! Thanks again for all your support.
First of all, I am so glad to hear you are on "the other side" of this transplant issue. It is very encouraging to read as we are pre-transplant at the moment. My hubby has HepC and cirrhosis, and his MELD is only an 8 (I sometimes despise having to live by MELD scores!!)
Second, THANK YOU< THANK YOU for the advise about hammering. My hubby is not doing so well....but every time they check blood, etc they say well his blood work looks fine.....he has had alot of trouble breathing lately, and we have had a few trips to the ER as a result of it. They have done abdominal CT scans, chest CT, etc and NOTHING is showing up....not even any ascites!! They are now trying to say he has "some anxiety" and probably is having panic attacks. It is making me feel like we are crazy or something. I call our coordinator about everything, and now he has lost his voice....for two weeks now. His pain is excrutiating, ammonia level elevated, and the shortness of breath thing.....how much longerr does someone have to live like this??? Sorry, guess I needed to vent there! I have my mini meltdowns, too......All of that said, you have reminded me that I need to just keep telling them EVRYTHING no matter how "minor" it may be!!!
My husband had several episodes of breathing problems last year. What he had was fluid in the lining of his lungs. That is the only way I know how to explain it. I know how you feel because it was horrible. My husband's MELD was 17 and 18 all last year and now its a 10. He needs blood transfusions regularly and is very weak. I personally think its because he has been so sick for so long. He's just plain wore out! His metal status is now going down hill. I just wanted you to know I totally know what you are going through and NO ONE could possibly understand unless you live it. Just keep the faith and hang in there.
I thought of something else. My husband can barely talk at times. Some of it is weakness and some he is so dry from the meds its almost impossible to hear him. His voice sounds really scratchy. They have done a lot of the blood gas checks on my husband also. As far as the fluid around his lungs we always knew what it was. He couldn't take deep breaths. So he was really short winded and usually he had a lot of fluid in his belly at the time. So we knew that it pushed up around his lung. Jerry has never had verices but one time he vomited so much he tore this esophogus (sp). Nice uh! I'm sure he last year so much he hit every room in our house and all our vehicles and our driveway and I'm sure I have forgot some. I think verices is the only thing he hasn't had. Even though he has to have blood tranfusions. I asked my husband if it hurt when he had the fluid around his lungs and he said NO. Also it didn't hurt to have it drained. I was in the room when they did it. After a while all these procedures make us tougher! I think! So try not to worry they will figure it out. I know easier said then done! Just hang in there. If it gets too tough just have a mini melt down, that always seemed to help me get through another curve ball. Also I have found talking to people helps and of course this forum has been my savior.
Post Edited (hep93) : 11/3/2008 9:20:49 PM (GMT-7)