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Christine,
My husband had this problem also. He was being tapped once a week for 4-5 liters. Then, unexpectedly, the radiologist suggested a pleurex catheter. The doctors had discouraged this for months. We quickly agreed before he could change his mind. It was wonderful. I drained him for 2 liters every couple days and he was SO much more comfortable. Highly recommend it.
DiannePam,
I ‘m so sorry to hear of Lauren’s passing. She fought this illness with such patience and bravery, I was in awe of her. Your family and her fiancé (whom I know is part of your family as well) were truly amazing throughout this ordeal. You all have my deepest sympathy.
DianneGlad you are doing well Tiffany. Thanks for the update. I’ve been wondering how things were going for you. I read up on the domino transplant; what a fantastic idea! I’m so impressed with the brilliant people who come up with such clever solutions to our most difficult problems.
DianneHi,
Saw your post and although I can’t give you that info directly, I can tell you that you can get his contact info quickly by just googling him. There’s no email address there but there is a phone number. Best of luck to you and your family.
DiannePam,
Just read your update. I know this is such a hard time for you and your family. Glad you are staying positive. I used to be an ICU nurse and have seen slow wake-ups after major surgeries, they are sooooo unnerving. Hang in there. I think your husband’s right. Tomorrow’s the day. Can’t wait to hear the good news. Thanks for keeping us posted. We’ll keep praying.
DianneSusan,
So sorry to hear about your Mom’s passing. You have my deepest sympathy. Try to take comfort in the knowledge that she suffers no more.
DianneI can tell you why my husband didn’t enter a clinical trial. When he was first diagnosed, we were both so freaked out about the prognosis that we wanted to get started with chemo right away to start fighting the cancer. When that drug regimine stopped working, we found that he didn’t qualify for some clinical trials having already had treatment of some sort. I also found the process of looking for one very complicated, trying to judge whether he fit the inclusion criteria which was in some cases pretty extensive. Bottom line, I think you need a doctor who encourages participation and would be willing to help you find one whose criteria you matched. We didn’t have that.
Pam,
Wow! I know you and your family have been through the ringer over the last few days. Stay strong. Lauren’s got youth on her side and a heck of a lot to live for. I’m sure she’s fighting as hard as she can and sounds like she has an awesome medical team. I continue to pray for you all.
DianneI am SO excited for you Tiffany!! I’m really glad they’ve expanded the criteria so that more people have a chance of beating this disease. BTW, whatever happened to the option of a living donor transplant?
DianneThis discussion is fascinating to me and I have a question. I understand why a liver transplant is not an option when the CC has metastisized outside the liver, but why not do one for cancer that appears to be completely contained in the liver as in ICC with mets to liver?
I watched this movie with great interest, as we just went through the process with my husband. I can tell you that if it were available in PA (we moved from Columbia last October), he would have chosen to end his life earlier than it did naturally. Liver failure is a tough process, but I will say, that in the last stage (last week or so), pain control was not an issue. It was the encephalopathy that was most disturbing. I really hope that he was as oblivious to what was happening to him as he seemed to be.
The sweet lady in the movie that had liver cancer chose to end her life at about the point that Chris was about 6 weeks before his death. She seemed to be very short of breath, probably due to the ascites. She should have had a drain so that she could have been more comfortable. Chris had one for about 2.5 months and it made a world of difference. Anyway, although his last 6 weeks were pretty hard, I can’t say I’m sorry to have had him here for that time. Taking care of him was very rewarding to me although heartbreaking at the same time.
Having said all that, I hope that the option is available to me when my time approaches. I would find it very comforting to know I had some control over my life.Pam,
I’m so happy that things are going well for Lauren. The only thing I can think of besides the things you’re already doing for the fluid retention is limit salt intake and perhaps the doctor has another diuretic he could prescribe if Lasix not doing the trick? Fluid retention is a common problem after major surgery. Hope it improves soon, I know it’s very uncomfortable for her.
DianneAlanC,
I understand your concerns perfectly,and would have the same ones. I am a medical professional (CRNA) and will tell you that the most important thing is to have a very experienced surgeon which it sounds like you have. This is very big surgery but you’re lucky it’s an option for you. I pray all goes well with you and you have a quick and uneventful recovery. God bless.
DianneThanks so much to all of you for your responses and your condolences. I really appreciate you and this website. It’s been such a comfort over this past year to have a support group that knows what you’re going through. It’s been difficult to say the least, but I know that this is part of life and hard as it is, we all have to go through it at one time or another.
I am having one strange response I didn’t anticipate, survivor guilt. I keep wondering why him and not me? A question with no answer and I usually don’t waste my time with things like that, but it’s really causing me some pain. I know it has a lot to do with the fact that I am now living his dream. He always wanted to return to this area to be with his family and retire here, fish, plant a big garden, orchard, etc. and he never got the chance. I know I’ll get past this cause there’s really no other choice, but I was wondering if anyone else has experienced this?
