Thanks, Greg! When he first started the seizures, they had him on Dilantin, and it was not effective for him. They have also tried Keppra and a few others. The Topamax worked for a while, but now we...
I have often wondered that. He had another seizure last night resulting in an ER trip because his head went through the drywall on our wall! He has been admitted to an EEG Monitoring Unit. They did a...
I usually post on the hepatitis forum for my husband who has liver disease. However, several years ago he started having epileptic seizures (generalized according to EEG), which were under control...
Carol, To answer your earlier question....his PCP is a whole 'nuther story!! He's more of an "order taker" than an advocate for care...I have to push for stuff to get accomplished...perfect example...
Carol, Thank you for the link. What the hepatalogist that he HAD been seeing for the last 8 YEARS explained to me was that the anti-rejection medications post transplant can cause or contribute to...
David, I am in Texas. He had been on the transplant list at a transplant center very near where we live and because of the change in his medicaid plan (i. e., it being switched to a managed care...
I have not checked in for quite some time, but do peek in the forum from time to time. Hubby has been doing "okay". He went through a period of time during the spring and early summer when he was...
Thanks, all!!! Yes, I am going to give it a few more days and if no improvement will definitely call his doctor. He's really having trouble walking as his feet are painful from being swollen. Will...
Rick, hanging in there. He did not get approved for SSD, but he is now on SSI. In the county we live in, he is forced to be on a managed care plan for Medicaid which truly limits his ability to see...
Hello, All! It's been a WHILE since I have posted, but have been checking in from time to time. Hubby continues to bounce around with his health issues, most recently having seizures almost every...
Thanks, Connie! I hope the side effects stay at bay as well. Poor guy has a hard enough time as it is and gets really frustrated sometimes because he realizes he cannot get the though processes, etc....
Hello! He was discharged home today....they got the ammonia level back to "normal" and have increased the dosage on the seizure meds. This will be a mixed bag of tricks because he already is having...
Hello, All! I have not posted in a long time, mainly due to my busy schedule, but I do check in on you all as often as I can! Hubby had gone about two years with no major "issues"...no seizures, etc....
Rick, They sent my hubby to....get this.....a rheumatologist!!! Hello??? Makes no sense to me either!!! Talk about clueless....had they let me back there, I probably could have educated him a little...
Well, the state I live in (TX) is an at will employment state. In other words, they COULD hire you on knowing the medical history, etc....but, they can also let you go for any reason, which is the...
Well, he has been receiving SSI, but SS has decided to do a review to make sure he's still disabled. He was a commercial plumber by trade, and obviously cannot do that kind of work as it is very...
Social Security has decided to do a disability review on hubby, so in the process they have scheduled him for "independent" doctor exams, one of which is today. They scheduled this one with a...
That's great news! We tried to get hubby in on that study/trial, but they would not take him with stage 4 cirrhosis.....hope things go well for you in that, and the side effects are minimal!! Mer...
Connie, so glad to see your own words here, and just wanted to let you know I have been thinking about you! You've come so far...I know you will pull through. But, you take all the time you need and...
So sorry to read about this! My hubby started having seizures a few years ago, and truthfully, they do not know the cause, and they don't want to specifically say it is because of his liver disease,...
Why am I not surprised that our dear Connie will be discharged this soon!! Thank you so much for the update. I am sure she is overwhelmed with all the information, but I am sure our Connie will get a...
WOW!!! This just confirms what I have always thought about Connie....she is AMAZING!!! Thank you so much for the update!! Love reading such good news, and no, she is NOT a sissie by any means, but...
I am so glad to see this!! Have been thinking about her, and just got on here to check! Doing a happy dance for you, Connie!! SO glad you got that liver, SO glad your recovery is going well!!! Cannot...
ML, I have been wondering the same thing as I thought it odd she had not posted for a few days. Praying she got the liver, and surgery was successful and she is recovering nicely! Mer...
Charlie, What a wonderful surprise, and then to top the day with a Cowboys win AND a Rangers win!!! Good day all the way around! Hope your wife is doing well!! Enjoy the retirement gig! Mer...
Glad to see everyone is taking time to take care of themselves. I did the same today. I woke up this morning feeling completely exhausted (last week was crazy for me), so I just lounged around all...
Charlie, I was laid off a couple of years ago, and while it was traumatic at the time, I realize that the stress I was under, and also taking care of hubby was really just too much for me, so it was...
Charlie, So glad to see you posting! Sorry you have had so many ups and downs this summer, but sounds like she is stable! We also go through Baylor Dallas and received that same letter. What a...
Elle, I am just now catching up here, and Al sounds like he is doing fantastic!! I know your kiddos were excited to see him, and him them! I am thinking it was a major morale booster for everyone...
Connie, That makes sense that you are at the top. I hope you feel better quickly!! You rest and take care of you! Mer...
Connie, I am so sorry it was a no-go! But, it's best that they did not, given your congestion issues, etc. Yes, they will definitely want that cleared up! You rest, get better so you can get...
WOOO HOOOO!!!!!! Dancing a Happy Dance!!! This is the best news I could have read today!!! SO Happy to hear this news. ML, thank you for posting for us!!! Connie, I know you probably will not get...
This is the wonderful news I have been waiting to hear from you!! Praying the infections steer clear and that things progress smoothly! Mer...
Elle, Praying for a successful surgery! You get some rest tonight, too!! I know things will be crazy, but please post and update us as you can....thinking about you both! Mer...
Yes, anytime there is infection, they will not be able to have surgery, thus bumping off the list until infection is cleared. Praying he does not have infection, and that the liver comes very...
Elle, will continue to pray that he stays stable. I know you have your hands full, but update us when you can! Mer...
Elle, Been thinking about you and hoping and praying that hubby is still stable, and that you receive some news very soon about the new liver!! Hugs, Mer...
Elle, this is good news!! This week will be the beginning of a new life for you guys! I am not only praying for you and your hubby and family, but for the family of the donor. I cannot imagine what...
Praying that liver comes SOON!! Mer...
My hubby was prescribed Ambien to help him sleep and I will say that it contributed to his HE issues, so the doctor refuses to give it to him any more. I hope you can find a good balance Mer...
Blonde, I have been following your posts about your hubby. I hope things are starting to turn around for him. Yes, it is scary when something like that happens! I hope you are getting to take some...
Thanks, I was just really hoping he could have at least gotten in the trial and gotten a handle on the HepC. Because, it's like the hepatologist said, once he's transplanted, we will still have the...
Well, not such good news. Because he has cirrhosis, that excludes him from the trial. So, basically, since he cannot take any of the treatment due to his issues with the interfuron, and he cannot get...
Hello, all!! We saw the hepatologist today for hubby. Good news, the biopsies from the colonoscopy came back within the normal range. She did say the polyps they removed are the kind that have a...
Elle, I am just now catching up on all this! Praying he will get some sleep!! I truly think the more he sleeps, the better he will be come. Hoping you are taking care of yourself through all of...
Glad to hear a good report, Rick! This is wonderful! On the drug situation, I hate that "catch 22", and I will not get on my little soapbox, but do hope you find some answers soon!! You take care! Mer...
Natasha, You may want to check around at some of the children's hospitals, etc so see if there is a Child Life Specialist that can work with him to help him understand. Child Life Specialists work...
Hello, all!! I have not been posting much, but I do check in (or at least try to) daily to see how you are all doing. There has been so much loss this last couple of weeks, I am praying for each and...
LOL, ML.....I am here!! I have been checking in, but not posting. Hoping to here from Elle soon, her quietness is worrying me!! Hope you have a great Labor Day!! I am getting a few things done around...
I kind of suspected that...thank you, Connie! Possibly she's doing this since he had the biopsies done and she wants to check everything. I left a message with our coordinator, but probably will not...