Hi Samantha and welcome to the forum! You will find alot of support from our members.
I am my husbands caregiver, he like your father has ESLD. We have been through several hospitalization since December. He has serious bouts with encephalopathy as well and he went in a coma Easter weekend. He has alot of trouble with ascites also. He is currently listed on the transplant list and hopefully that call will come soon!
I am so sorry to hear about the cardiac issues keeping him from being listed for transplant!! The one where I live won't list when there are cardiac issues either.
I can honestly feel your heartbreak, just lost my mother to cancer almost 2 years ago and now I am watching my husband deteriorate daily.
I have to hand it over to God everyday, which is not always easy. Just know you are not alone and there are others on the forum going through the same thing. May God bless you and your family and keep coming back it really does help!
Hugs and Prayers,
Glad you found us. My husband also has ESLD and is not a candidate for liver transplant because he also has esophageal cancer. And every day he is a living miracle that there is still quality time to spend with our loved one. Only God knows when it is our time to go.
This is not an easy journey. But with the support of others on the forum, we live in hope, enjoy the moment and share tears when they need to flow. Keep up the fight.
Post Edited (hep93) : 8/1/2006 9:55:45 AM (GMT-6)
Wow, thank you for all the replies! My dad was released for the sub acute facility yesterday. He is absolutely thrilled to be home after 6 weeks in the hospital. I on the other hand was very nervous. Mentally it is good for him to be home, but it scares me that he is not under 24 hour nursing care. He needs another parasentisis. His belly is huge just after 2 weeks... the fluid is accumulating so much faster now. Of course it its painful for him. On the up side, Mount Sinai in NYC called yesterday and want to see him tomorrow. We will once again start the evaluation process. We are praying for a miracle. I also got a call from Westchester hospital and have an appointment for evaluation on Aug. 9th. We are trying to see as many hospitals as possible. W e just want him to get on a list. We broke the news to him yesterday about the rejection of UMDNJ. He was crushed but after a while he picked himself back up and said he is ready to start again. We are going to keep pushing until we have used up every option.
Thank you for the support. Congrats on being on a list. That is fantastic! I hope you get the call soon. How often does your hubby get tapped? How do they control the pain in is stomach? I am so sorry about the loss of your mother. I am sure she is looking down on you... sending you strength everyday!
I am sorry to hear your hubby is not eligible for the list. How do they treat your husband? I admire your wonderful outlook... When I am down I will certainly think of your words. I know they will give me strength. We just take it one day at a time, right.
Thank you for all your information. I have stopped working... I am so thankful I have a wonderful husband who is so understanding. We have moved, I haven't worked, and most of all he gets none of my time or energy. Even still he remains supportive in whatever I need to do. He goes out of his way to try and make things easier for me. This worries me as well... it is not fair to him. I am supposed to start the Radio City Christmas Spectacular in October again. I am not sure how I will do it. My schedule is gruelling... I guess we will see when the time comes. As for you, congrats on your treatment. It sounds like things are looking up a bit. Does the treatments make you ill? Are you feeling better and able to have quality of life again. I hope that your results will be clear. Your story definitely gives me hope! Thank you for your wisdom. This has made me feel better already.
Hi Samantha, I know it was hard telling your Dad about UMDNJ. But the good news is that Mount Sinai and Westchester are interested in evaluations. I will be praying for your miracle to happen also. It sounds like your dad has a good attitude! I know the nervousness of having your dad at home. My hubby is very unstable also, I just have a very hard time going to work on the weekends. He can change so quickly to the point of being critical. He was in the hospital last month for a week just to have fluid drained off daily, hoping to get it under control, he took off more than 25 lbs. of fluid weight in that one week. The fluid is back now! I am not sure what the plan is going to be now. His kidney's are not responding to diet or diuretics and the kidney function is not great. The stomach pain is not very well controlled, tylenol is the only thing they allow him to take for pain and then he can't take it that often. I am sure antibiotics and lactulose contribute to the pain also. It is a catch 22 there, we don't need the encepalopathy kicking in.
Just take one day at time and be good to yourself. We as care givers often forget that we need our space and end up getting burned out. So make sure you are kind to yourself and take some short breaks here and there!! Sounds like you have a wonderful husband. My prayers and thoughts are with you and your family.
Trish, so sorry to hear Rick is back in the hospital. I know how hard this must be on the both of you! It does seem like the treatments would be very hard on one trying to recover from Bypass surgery. Take care of yourself!! I am still praying for you guys! I know things are bound to get better! BIG (((HUGS))) to you!
Rat, welcome to the forum, the most important thing with your treatment is to stay sober!!! Okay you slipped, don't beat yourself up over it! Try getting yourself a sponsor and going to N.A. or A.A meetings everyday and more if the desire hits again. You need someone close by to help you with recovering from drugs and alcohol. Which is why a sponsor is very important here, you need this support! We do have members that are doing the HepC treatment that can support you with your treatments. My best to you, I know it is hard.
Hugs and Prayers to All,
Post Edited (TDT) : 8/2/2006 12:35:52 PM (GMT-6)
Post Edited (hep93) : 8/2/2006 12:08:17 PM (GMT-6)
So I have a bit of positive news. We went to Mt. Sinai yesterday and things went well. My dads blood work was the best it's been in months. He had a parasentesis.... 9 liters.... so he feels much better. The doctor was wonderful, very optimistic about getting him on the list. We will see the cardiologist on the 16th for further information. All in all it was a good day. I don't like to get to excited, but any little bit of good news gives me a boost to get up and do it again tomorrow. we also had home care and PT come in and evaluate today. It will take a couple of days to hear back but he does qualify so that will be a help.
Ohh, I also got a call from Colombia. My brother and I sent all of his records and a cover letter to the doctor. He called to say the letter touched him and he would like to see my dad on the 11th. Just another opportunity. Wanted to share that with you.
It is such good news to hear about the other transplant clinics wanting to take a look! It does give you all some hope here! Just keep the positive attitude, it really helps! Good Luck with the evaluation!
Mark had a paracentesis today also, 14 liters, they always give him albumin replacement, that keeps him from getting real weak or should I say weaker. His creatine is running between 2.6 and 1.9. He is rather resistant to his diuretics, they are just plain not working. He did respond with lasix and aldactone, but the aldactone would raise his Potassium dangerously high. He takes Lasix and Amiloride, which isn't doing the trick. Does your dad have trouble with his blood sugars? Mark has become diabetic and is now insulin depend, he has been on insulin since April.
Mark was tapped 14 liters... at most my dad was tapped 15. How does he do after such a large volume? We have been at 4 different hospital for taps... all do it a bit different, but they all have used albumin. after the 15 liters my dad was terrible. He was not able to walk, fell when I was helping him out of the car(he is 6'2 and I am 5'6) and blood pressure was 70's over 40's. I have a lot of concern for high volumes given our past experience. How does mark tolerate it? How much albumin do they give him? It is very strange, but it so crazy that I know nothing about you yet feel like we can sympathize with each other. Getting ready to say my prayers and you and Mark are in them. Thinking of you!
Post Edited (hep93) : 8/5/2006 7:20:30 AM (GMT-6)
It really sounds like you have been though it all. I admire your strength and positive attitude. I am sure you help people more than you know. I am so glad your treatments have gone well... and you are ready for hip surgery. I will say prayer for a great success. Keep believing and thank you for helping me to believe!
I am glad that Mark hasn't had any problems with the high volumes of fluid taken out. This time my dad did well with his tap. Every liter they took out they put a bottle of albumin back in. It is much more than they have ever given him, but it seemed to help. My dads first tap was in February. (2 weeks before my wedding) He was getting tapped about every month, but the last one was only two weeks. Just like Mark, my dads fluid is accumulating faster. After the parasentisis he used to feel much better... no pain in is stomach. Now he always has pain. He does have problems with encepolopathy as well. The past 2 1/2 weeks have been wonderful. He has been the clearest since he was diagnosed. Although the past two days I was starting to notice some different behavior so I gave him another dose of lactulose yesterday. Hopefully that will help.
This site certainly does help. Sharing stories and fear are oddly comforting. I thank you and everyone else for the pick me ups! My thoughts are with you!