Just Want to Share With People Who Get It

Hi Everyone, densgirl here,

I'm so grateful for this forum. I come here and read and read, cry, smile, rejoice with some of you, grieve with others and pray for everyone on here. Watching my husband progress while knowing he will get so much sicker is hard. Compared to a lot on here he's still doing pretty good. He just doesn't have any energy doesn't sleep much, it's like cat naps around the clock. The itching seems to be letting up some had to put him back on the Cholestyramine along with the Lactulose and his other meds. He sees his Gastro Dr. on the 26th, then his hepatologist on Aug 9th. On Aug 15 he'll have labs and another MRI hopefully his tumor has grown so he can get the MELD expcetion. The last MRI said it was only 1.7 cm. It's like having a time bomb in your body. If it goes off it's over. Once it grows to the right size they will start treating it. He's being treated at UCLA I love the team. I watch him like a hawk monitering every symptom. He gets bandings every three months, the meds, MRI's. We go to a Transplant support group and a liver cancer class. Just doing what we can to educate ourselves. I love the support group, we have people waiting on the list, a lot of post transplant people attend.

On a brighter note we are doing our best to live to the fullest. Next week we are going on a retreat with our church, In mid Aug (right after all his tests at UCLA) we are traveling up north to Washington, making stops all along the way sight seeing and visiting family and friends. Then we are going on a cruise to Alaska with Narcotics Anonymous. We are taking our two little one's with with us they are 10 and 8. Our goal is to make as many good memories as possible. What ever the outcome of all this is we know we won't be going anywhere other than the hospital for awhile. His TP Coordinator gave him the green light, so needless to say we are very excited. We've never been on a cruise before.

Thank you for letting me share,
Barbara

Hey Barbara , It's always nice to know you guys " Got it " . I think everyone would sympathize with you about the on going medical visits . I myself felt more like a human pin cushion or a Guinea pig for the longest while . Getting free of the monotony will be a good thing , Please remember to do a little research into nearby hospitals on your route just in case something goes awry .

I mention this because a visit to the coast a few years back while I was still retaining fluid , I got pretty sick at a moments notice . Always good to have a plan B . Sounds like a nice trip , Never been on the west coast but always thought I would like the Washington area . I love wildlife .

Keep in touch and hope you guys have a blast .



A. Ziffle

Hi, Barbara! Thanks for updating us. As far as upcoming appts., it seems that it would make more sense to see the hepatologist AFTER the MRI. That's how Mayo has always scheduled my appts.: Blood work and scans first and hepatologist or transplant coordinator afterwards, within the same week.

I hope you have a great trip and cruise! Just be aware that your hubby may not have the energy to do all you plan to do. He is still going to need his "naps." Has he talked with his hep doc or GI about taking something to get a better sleep? For awhile, I was using melatonin (over the counter) and it worked well. But I built up a resistance quickly and at higher doses I was having bad dreams that would wake me up. Then my doctor prescribed Trazodone (it's an antidepressant, but doesn't work that way on a low dose.) That has worked well for me, though I still get up a couple of times each night...but do get 4-5 hour blocks of sleep in between.

Around 2000, my guy and I took a cruise to the Bahamas, but had to drive from Northeast FL to Southeast FL for boarding and departure. We went the day before and stayed in a hotel about 25 miles north, so we got some good sleep before leaving early the next day for the port. The way home was different. I was exhausted from all that we'd done on Grand Bahama Island and the trip back to port in S. FL. I was totally exhausted, but my partner wanted to drive straight through to home. I couldn't make it. about 1/3 of the way north, I had to make him stop and get us a motel room. Aside from being tired, my neck was killing me (chronic problem.) We slept in our clothes, on top of the covers, and headed out in the morning.

So just be flexible if your itinerary has to change a bit.

Hi, Need Support, and welcome to the forum. You will find support here, as well as a wealth of information. There is a thread on here that may be helpful to you: Caregivers Sharing. I would like you to start a new topic to introduce yourself and your situation to others. Or you can just copy and paste your post into a New Topic. Click on New Topic instead of Reply. There is also a folder at the top of the page entitled Hepatitis Resources, though it's not just for viral hep. There is a lot of good info in that.

I doubt his age would prevent him from transplant. I got mine relatively late in life, but aside from hip replacements, hep C, and a liver tumor, was in fairly good health going into it. Would his weight be a factor? I can't see that gall bladder or spleen issues would make a difference. When transplant is done, the gall bladder is taken out, as well as from the donor's liver.

Hugs,
Connie

Barbara, the advise here is great. Having taken a trip, 7 hours from the house, so my husband could see his family at Christmas, which would have been his last Christmas with his family if he had not gotten his TP in Feb 2012, getting hospital info is a good idea. Our trip there was uneventful . . our first night there was a different story!! At about 3am, my husband fell out on the bathroom floor because his blood pressure dropped to 55/35, due to dehydration. We called the ambulance, he was taken to ER, and they were a small hospital and knew nothing about liver patients. The doctor was honest with me about it, showed me the bloodwork . . he was already feeling better becasue of the saline IV . . and we discussed options. Basically, we agreed that releasing him to me would be as good or better than the hospital, because the company, food and bed would be better, and there was not much they could do for him. We had planned a whole week there and left after 3 days because I was not comfortable being away from his doctors.
So. knowing about hospitals is a good peice of advise for sure!!

Good luck and have a safe trip!!

Debbie