Mixed emotions

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 having seizures non stop. He was readmitted, and with some changes in meds has been seizure free until a couple of days ago. What they have found is that he has "normal" seizures, like epileptic seizures and then pseudo seizures that are brought on by stress, etc. So, today we called his transplant center to make a follow up appointment to find out they have removed him from the transplant list. This is news to us, as it was done apparently back in June. I made phone calls and long and short of it is that the transplant committee reviewed his case and says due to "co-morbidity" he is no longer a good candidate for transplant. The letter they allegedly sent us that we never received (I had them email me a copy today) was very vague and gave absolutely no reason for being removed from the list, and the transplant program all together. So I called his liver specialist today and told her I needed answers, and not vague ones. Long and short of it is, they used the pseudo seizures as their excuse, but it was mainly a financial decision. His medicaid (in our state) has been put on a managed care plan, and the transplant center does not take that plan. So, when they removed him for medical reasons, they "ungrandfathered" him. What I found out today made me sick to my stomach. Not only do they not take the managed care programs for medicaid, I was also advised they will no longer be taking some other insurance plans, to include any of the plans on the new insurance exchange! Basically all they will accept is private health insurance or corporate health insurance and only those that also have good prescription plans!!! So, since my husband is one of those that transplant is the only option as there is no viable treatment for, he is left to his own devices to find a transplant center that WILL accept his insurance, and also a liver specialist that will. Unfortunately, I feel like this will be the beginning of a long road of declines. Now, the kicker of it is, that earlier this spring, his liver specialist said he needed to have a repeat MRI due to a small spot that showed up on his liver on the last MRI....but, now we are without a transplant center, a hepatologist etc. She said we normally could follow with her in her private practice, but her practice does not accept his insurance either. Sorry for the long post....just incredibly frustrated right now and needed to vent!!!

Hi Mer.

I hope that your hubby is feeling better. Can you call your insurance company and have them send you information on the closest transplant center, near where you live? Also, sometimes, if you're denied at one transplant center, you may be approved at another (depending on their protocol and criteria). Make sure to follow up on that spot they saw on the past MRI. Wishing you much luck!!!

Post Edited By Moderator (hep93) : 10/4/2013 11:59:37 PM (GMT-6)

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 plan), the center got special approval on the financials because they do not normally accept the insurance. Unfortunately, due to the seizure activity, they removed him from the list, and now that it's been stated that his seizures are pseudo seizures, he is not a viable candidate and they used that to completely remove him from the transplant program at that center altogether. What a mess!! I will be making phone calls Monday, but this is just insane! I think what got my feathers ruffled today was the passive way the whole thing was handled and I let it be known with the doctor that was unacceptable!

Connie...thank you! They cannot say specifically that the seizures are due to the liver disease....although the started a few years ago when his health was getting worse. Now, they are saying his seizures are both epileptic type (which is a very broad term I have learned) and also pseudo seizures....the pseudo seizures are triggered by a stressor of sorts...hmmm...ya think?? The other place in the town I live that has a liver specialist is a nightmare to get appointments at that hospital. He has a suspicious "thing" on his face and we went through heck just trying to find a dermatologist that would take his insurance!!! So, it's an uphill battle and I am going to have to take a step back and really arm myself with tools and information to fight this battle!

Mer,

Mike was almost caught in that Managed Care glitch in FL.

But someone clued us in to sign up for the one that IS not managed care while we still could.

And our TP center got him a diagnosis to 1 year post transplant exception so that he could have his TP on Medicaid.

Then after 1 year, they slammed the door shut on his exemption and tried to drop him from Medicaid altogether. Now we have had to find treatment alternatives in the community rather than at the hospital. WE prefer the hospital but have found that some of the specialists he was seeing BEFORE His lost his private insurance have kept him on as a patient because they like him! His dermo is so wonderful. He has had several (several) skin cancers and they see him every 2 months as NURSE wound follow up. The office does not take Medicaid at all.

The rule now is you are allowed $1500 of hospital based care a year starting July 1st. That is used up by a liver patient in a minute.

His cardio doc keeps him on at the Hospital because the case is interesting and they get him some kind of charity designation. Mike has aortic stenosis and needs a heart valve....this did not keep him from TP in 2011. We keep our fingers and toes crossed that this doesn't mess up for another 13 months as Mike is eligible for Medicare in 2014.

I would be frantic if this happened to Mike.

And WAS frantic when they totally dropped him from Medicaid last year for a while and sent him a DROP DEAD LETTER...some glitch in their system...they said he hadn't returned his "annual reapplication paperwork" which he did on line -- and had a receipt.

We drove that very second to the local Medicaid office and someone said there was nothing to be done, that the "computer" had it cancelled. What could she do? Like a computer never made a mistake...have you seen my spelling?????

So he called for 2 days to get through to the main office in our district and told the lady that she was signing his death warrant, that without his antirejection drugs and post tp care, he was a dead man in the next month! And how could an office worker have that kind of control over a human being? Because of a clerical error, a man should die? When he logged back on an hour later, he was approved and back on Medicaid...but not on real Medicaid, on the Managed Care one.

They have exemptions to get on Regular Medicaid in our state for folks with Aids, for example. I have written letter after letter to our US senators and reps, but with no success YET.

How can AIDS patients be more sick than Liver patients? Crazy.

Good luck fighting the good fight.

I don't understand about the seizures. I know that they triage the livers to the folks who have the most likely chance of a long survival and they age out folks and take off folks with large tumors (over 5 cm total). That must be awful for those families. We have had some members in that boat! Not very good news there either. But there just are not enough donor organs for everyone who is sick.

This whole business about medical care is awful.

I'm so sorry this is happening to your man!

Hugs,

Mama Lama

Post Edited By Moderator (hep93) : 10/5/2013 11:14:26 AM (GMT-6)

Mer,

I have been poking around the Internet looking for a correlation between seizures and liver disease and any info I could find that would suggest someone with seizure disorders would have a poor outcome post transplant. I could find nothing that suggested seizures indicated poor outcomes or were used to cut listed patients from programs. I may not have looked far enough...

I did find an interesting article with some language about seizures being pretty routine part of liver and kidney failure and that folks who had seizures after transplant had as good a chance of making it as those who did not.

Hmmmm...

http://professionals.epilepsy.com/page/transplant_liver.html

Good luck...those who succeed fight hardest!!!!

Mama Lama

I had my transplant at a MELD score of 24, though most people at MGH are at 27-30. CA, Oregon and WA all have high MELD scores needed; over 30. Helmet laws make a difference in FL, though in PA they have high scores needed and they don't have a helmet law. It might be that having good insurance makes for long waits because people aren't being turned down because they don't have the money, but the state will pay. Rich people don't have an advantage. I prefer that to people dying for lack of money to pay for a transplant, or the money to pay for meds after a transplant. In a country as well off as the US, people shouldn't be dying because they have no money to pay medical bills. Look at what you've had to go through. Wait until you see how well the Affordable Care Act is going to work. We have it here (12 years now) and I have yet to hear any complaints. Especially from those people who are alive because of it.

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 seizure activity and with him having "regular", "epileptic" type seizures AND pseudo seizures, they could not take the chance and the transplant committee expressed concern...mainly about the pseudo seizures and they were concerned he had an emotional problem that was not under control. Then, she mentioned that they won't even consider looking at him now because of the managed care plan for his medicaid because this transplant center does not accept ANY of the managed care plans, and even indicated to me they will not be accepting the plans on the insurance exchange that are to take effect....I have a nurse friend that works at another hospital in our area that also has a liver center and she mentioned it was probably worth a try to call the center at her hospital and see if we can get in.....it's going to be a process.

I did break the news to him today, and he took it better than I had anticipated. So, we trudge forward and take everything one step at a time.

Mer

Mer

The research does say seizures are not unusual post transplant but the symptom is manageable and unlikely to cause more organ failure than others post TP.

Have you talked to Medcaid directly? Mike got Regular not managed care Medicaid exception for a while.

I would appeal your hospital's decision AND look at another.

Has your Medicaid PCP any balls? Ours FINDS docs who will take the insurance. And we are not proud and inquire about the charity funding. Mine got some extra PT that way last year.

Good luck

Carol

Post Edited By Moderator (hep93) : 10/8/2013 2:09:50 PM (GMT-6)

You just like Texas because they barbeque beef, not pigs. Texas could have more money from the feds, they're just being recalcitrant.

Nov 2014

We are counting the months

He has questions about Medicaid as secondary. I need to ask you about that when I'm back home.

Carol

Post Edited By Moderator (hep93) : 10/8/2013 5:55:54 PM (GMT-6)

Take more lactulose, that will clear up the woozy's.

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 is getting a referral for hubby to see a dermatologist for a suspicious spot on his face...it has taken MONTHS of phone calls to get the referral done. Partly because, due to his medicaid plan, there are few specialists that will accept the plan....are you seeing a pattern here?