HealingWell
Search Close Search
☰

I'm new. My brother has been DX with Cirrhosis of the Liver

Support Forums
>
Hepatitis
✚ New Topic locked
1 2 34 5
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted Yesterday 4:14 AM (GMT 0)

Sue, I am so glad you posted that!  It will help many who read it.

So glad you're back here with us!

Big hugs,

Connie

Posted Yesterday 5:52 AM (GMT 0)

Connie, Thanks for the atta girl...lol just trying to remeber all the things I struggled learning and hopeing to save someone time and energy. All the time spent feeling lost could be time spent laughing and enjoying the time spent with your loved ones. We miss to much if we arent careful. The 10 yrs Doug was sick we tried so hard to hold onto ourselves and being organized with his care made it easier to have time to breath. It is amazing how easy it is to come home put papers in order talk it over as you do it make sure everything was understood then..... take a NAP lol......! Any ER run was expidited with my book, labs compared that maybe the local wouldnt know cause they were done in boston...... just hand over the RED book...... no 30 minutes of questions..... go get my tea maybe torment Doug about the car I was designing..... inside joke.....**** every ER run added an option to my MINI COOPER he was going to have to buy me when he got better....... best MINI anyone ever would see!!! That puppy was up to 30 grand !!!!! Visiting nurses used it too.... to update their notes. As I think on it I will come up with alot of other tips. Glad to be back

Sue

Posted 12/4/2009 8:03 PM (GMT 0)
Whooo!! Finally made it to the computer.  I have been taking care of my 10 mo old adorable grandson for the past month and things have been quite busy.  (that is another story)  Sue, the 3 ring binder is a great idea, I think I will bring one along with me when the family gets together for christmas and attach your post in it so my brother can get his information organized.  Thank you for the info.  Cheryl, our family is originally from Ohio.  Ever heard of a little village east of Cleveland called Gates Mills.  A childs paradise of fox hunting fields, woods, building forts, discovering fossils in ravines and swinging on vines (and sneaking in to ride the horses in their stalls).  Loved it.  Ope, hear the baby waking, be back in a minute.  Ok where was I.  The family got together for Thanksgiving, (it was wonderful) my brother was able to make the 2 hr trip down with my mom.  He did not look very well, he had Paracentesis six days prior.  He was having more and more difficulty recovering from it each time he had it.  I asked him if they had started giving him an Albumin IV drip yet.  He said no.  That was it for me.  I told my brother don't ask  for it anymore, demand it.  Well, he went in this last wednesday, very thankfully we just found out there is a radiologist from his regular hospital that travels up to the area he is in, so his commute to the hospital is 15 minutes now instead of two hours, and Medicaid put his primary Dr as the GP he had originally seen because there are no GI's in his area.  They drained 8 litres for almost a two week period and the GP ordered Albumin for him, (they only had two bags on hand, he should have had four), and when I talked to my brother 2 days later, if I did not know he had liver disease, I  would not have known he had liver disease.  His voice was strong, and his thoughts clear.  He said....,"today....I feel very good, the Albumin made a world of difference".  Also, a plus, his GP told him medicaid should cover it because it is now part of his treatment plan.  My brother said his GP is doing what he asks because my brother seems to have much knowledge of what is going on with his disease.  (Thank you HW forum and internet technology, and Rick, a thousand blessings).  He is eating well, keeping sodium down.  Rick, I believe he is going to try the same regimen of vitamins and minerals for the muscle cramps. Oh! and also, yaahhh, he just got approved this week for SSI.  I told him he should also see if he can qualify for food stamps, every little bit counts.  Sooo... we have victory in stage 1, and my brother appears to be stabalized, now I am getting ready to contact U of W in Seattle and see if we can at least get him over there for a check up.  I will find out all I can think of to ask, and get all diagnostic medical tx done in his state that he can so it will be covered under Medicaid.  You think they will extend that Taxi service eight hours, how about a plane ride....even one way?  O.K. maybe not, but I serve an awesome all powerful God whom through all things are possible.  I still pray nothing short of a miraculous regeneration of my brother's liver.  Well, I believe I smell a stinky little person standing next to and staring up at me.  I'll keep you posted.  If I don't make it back on for a couple of weeks.   MERRY MERRY CHRIST-MAS!!  May He fill you all with His peace, joy, hope, and healing.                           Harp.         
Posted 12/4/2009 10:55 PM (GMT 0)

Harp, it's wonderful to hear from you and to get an update on your brother.  So great that things are going well for him (thanks to your and your family's diligent efforts, in no small part.)  So glad to hear that he was approved for SSI.  He will have no problem getting food stamps and can apply online.  As for air travel, it's possible for him to get that free, too.  Here's a link:

http://www.angelflight.org/

Merry Christmas to you and yours, too, and God's blessings.

Hugs,

Connie

Posted 12/4/2009 11:31 PM (GMT 0)
Uuuggghhh!  I wrote a long post earlier to get everyone caught up and it is not on here.  As soon as I get some more time I will rewrite it.   Blessings,    Harp
Posted 12/4/2009 11:40 PM (GMT 0)
Not sure what happened here, but I went back to see if my short post showed up, and then there was my post with Rick and Connies post afterwards.......Whew!  glad I don't have to try and recall all that.  And yes Rick, forgive me, God always gets the glory first.  Amen and Amen.

Siiillent  Night,  Hooooly Night....................                        Harp

Posted 12/5/2009 1:00 AM (GMT 0)

Harp, did you see my post with the link for Angel Flight?

Hugs,

Connie

Posted 12/5/2009 3:18 AM (GMT 0)

Harp, If there are no transplant centers in your state and they deniy your brother to go out of state he needs to appeal that decision in writing with in I think 30 days. He can request a hearing and present all his medical issues with doccumentation. It may work as you have to understand anytime insurance can refuse something they will and most people accept that. Upon appeal they will reconsider and he could get approval maybe. If he was going out of state by choice that will never be approved. there could be alot of concerns like his after care in his state so build the best relationship you can with his circle of Dr's and local hospitals. There support will make a difference! It is a fight worth fighting, even if you call your congressman. There are some orginizations that help to raise money to defray the costs. I wish I knew more about your state, maybe I can do some research too. I learned my way around Mass rules even when Doug was getting an inheritance that couldnt be changed but if he collected it he would lose his insurance. It was all done legally according to state and federal rules. Now my brain is in overdive... a good thing about my OCD but bad cause now I will be dreaming about ways to help.....LOL See I told my dr these drugs dont work as well as they say. I wont increase them though,,,,then I just wouldnt be ME and thats no fun LOL! But if I go off them I scare people!

Sue

Posted 12/5/2009 4:13 AM (GMT 0)

Sue, in some situations OCD can be a very good thing.   smilewinkgrin  We don't want you losing any sleep, though.

Hugs,

Connie

Posted 12/5/2009 5:51 PM (GMT 0)

Connie I actually dont lose sleep, I really do dream different plans and ideas! I have woken up in the mornings with brilliant ideas, my kids find it funny. They use me dometimes cause they will present me with an issue knowing I will come up with some alternatives or advice, it will usually be something I came up with in my sleep. Sometimes my brain just doesnt shut down. I will sometimes redecorate my apartment in my sleep. The next day off I will start re arranging LOL

Sue

Posted 12/5/2009 7:13 PM (GMT 0)

Sue, what a useful thing!  Sort of like a 6th sense.

Hugs,

Connie

Posted 1/7/2010 8:01 AM (GMT 0)
Happy New Year!

Yes Connie I did get the info on Angel flight and my sister and I read everything on their site. That is too cool.  Thank you!  Sue, I love a challenge, and I am going to talk to my brother about trying to get Medicaid to help some out of state charges. We had a wonderful Christmas, my brother made it down again, first christmas he as partaken in with the family in about 3 or 4 years.  It was so nice to have him there and sober as well.  I love being around him now.  He has been doing pretty good, the hospital up where he lives in MT now moves him to a private room with a television while he gets his Albumin IV drip and then they feed him afterward.  He still is dealing with alot of tremors in his hands.  My brother is taking some substance abuse rehabilitation classes in lieu of AA, he says he learns more from it.  It has been about 6 months now since he has had a drink. Things has been hectic at my home and now that they have slightly settled I am going to contact U of W in Seattle and try to get things going on getting my brother over there.  Hopefully all Dr's are back from vacation and peoples thoughts are in gear again.  If Angelflight agrees to do the flight it feels a little scary flying in freezing temps in a small aircraft.  At least this year we are not getting 38" of snow in 38 hours like last year.  Been alot of rain and about 2 weeks of an arctic blast.  Sounds like the midwest and east are getting the blizzards this year.  Rick, I will praying for your wifes niece, she is so young.  Just remember, Jesus loves His little children, the heart of a child, how precious.  Well, I appreciate everyones support and comments, you have all been such a blessing.  I am going to try and get on site more often again and keep up to date on things.  I missed you guys.  Ok off to bed, hope you all had a happy new year and wishes for good health and a peaceful joy to you and your families.                  Harp

Posted 1/7/2010 6:37 PM (GMT 0)

Harp, so good to hear from you!  And what great news that your brother is 6 mos. sober and was able to spend Christmas with you!  That just puts a great big smile on my face!  I hope that Angel Flight will be available to him and that things continue to move forward.

Please keep us informed and take care of yourself!

Hugs,

Connie

Posted 1/8/2010 3:27 AM (GMT 0)
Harp, I am so happy things are looking up for everyone and so glad for a good christmas. Holidays are so awesome when everyone can enjoy and participate.
Sue
Posted 2/14/2010 7:52 AM (GMT 0)
Hello all,

I want to wish everyone a Happy Valentines Day!  Many personal trials this last month, but just wanted to give a short update on my brother.  He got together Calcium, B complex, and multivitamin for muscle cramping (that Rick told me about, that Connie told Rick about) and he says it has helped to reduce cramps.  He was having some problems with low sodium and high protein and has been working on that, although he has been eating very healthy.  He is still getting together medical records, (boy, it sure seems like it has taken a long time), but nonetheless he is hanging in there.  As of a couple weeks ago, he has his good days and not so good days, still no drinking, smile and taking it one day at a time.  I am going to call him tomorrow to get an update and see how close we are to being able to get together a Seattle trip. 

I will keep you posted.    Blessings and prayers to all of you. 

Harp

"Come to Me, all you who labor and are heavy laden, and I will give you rest.  Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls.  For My yoke is easy and My burden is light."            Matthew 11:28-30 

 

Posted 2/14/2010 7:18 PM (GMT 0)

Harp, thanks so much for the update!  The low sodium and high protein can be an indication that his liver is continuing to deteriorate.  I've forgotten all the particulars of your brother's case.  How close is he to being evaluated for transplant?  (I know he was going to go out of state...is that what you are referring to regarding a Seattle trip?)

I keep getting credited for suggesting vitamins for muscle cramping and I swear it wasn't me! 

Happy Valentine's Day to you, too, and please keep us posted!

Hugs,

Connie

Posted 3/1/2010 7:31 AM (GMT 0)
Hello to all,

Yes Connie, the Seattle trip is to see a Hepatologist.  I am going to meet one of my sisters up at my mom's this Thursday to spend some time with my brother and my mom.  From what I was told today my brother is not doing well.  His ammonia levels have been very high and encephalopathy is becoming worse, (probably the worst it has been).  His intestines are backed up because he has been feeling very weak and is not getting much excercise.  None of us have seen him since Christmas but we call, and I think he needs to know we are still there for him.  I am going to do some checking with his Dr and get some answers on the medical records and then go to Health and Welfare and get him set up with some food stamps.  I guess he has not got to that either.  He is really out of sorts right now, the Dr has been giving him 1/2 the dose of IV Albumin at his Paracentesis thinking that might help with the high protein buildup, and my brother is taking his Lactulose, but this Dr is on a GP.  There are not any GI Dr's in his area either.  I think I am going to check on them giving him some Xifaxan along with the Lactulose to help with the protein/ammonia problem.  When I talked to my brother the day after my last post he said his MELD was 11  (went from 25 to 18 to 11) but he feels worse than ever.  I am very worried for him, and am at a point I don't know what else I can do for him.  He NEEDS a qualified Dr.  I think we have done a pretty darn good job without one up to this point, but we are going to need to step things up a notch.  Spring is pretty much here and traveling should be safer.  Please keep him in your prayers.  My prayers have been with all of you too, this is hard to see this happen especially to the loved ones in our lives, but all we can do is pray and keep moving forward one day at a time.   God bless all of you.   Harp.   

Posted 3/1/2010 7:17 PM (GMT 0)

Harp, thanks for the update.  It's so frustrating for your brother not to have the care that he needs!  I hope he can get some good medical care before he deteriorates further.  Metamucil or some type of fiber laxative might be good for him.

I hope your personal problems straighten out.  Do keep us posted.

Hugs,

Connie

Posted 3/13/2010 1:07 AM (GMT 0)
Hello, well I saw my brother and mother last weekend.  He was at the store!, so I guess he is on an upswing again.  His mental clarity seemed pretty good also.  We both went to turn in his paperwork for food stamps and then went to his GP office.  They did NOT send any of his paperwork over to Seattle and still one hospital they did not contact!  It has been almost 2 months.  And right in the front of his chart was the email of all the info they needed and name address and fax of U of W transplant facility to send everything to.  Well, I was all over them (in a nice way) and I had U of W immediately fax over HIPAA releases and filled out a HIPAA release with the GP as well.  His last and only MRI was almost 6 months ago, I am wondering if he should have an updated one done.  Do you know how often they usually update them because we want everything done that Medicaid will cover, done in his state.  He is also checking on an excercise program he might be able to get into at the hospital that does his paracentesis.  TIPS is not out of the question until a Hepatologist sees him.  Also, my mom found a GI/Liver Disease Dr about 45 min north of where he lives, and one of my patients told me about a Hepatologist in my area (3 hours from my brother) so I went down and picked up his business card and gave it to my brother.  I told my mom to find out if the GI/Liver Disease Dr that is north of them is actually a Hepatologist.  We had a nice time together, 3 of us sisters, my mom, my brother and my grandson.  Celebrated a birthday also and ate wonderful, healthy home cooked food.  My brother makes some killer spaghetti sauce from scratch too. 

Well, I will keep you posted, praying the Lord blesses and keeps you safe.  By the way, anyone on here on Facebook?

Harp

Posted 3/13/2010 2:02 AM (GMT 0)

Harp, thanks for the  update!  I'm glad that your brother seems stable at the moment.  The release of records form may have been the thing they needed to comply with the request to send records to the transplant facility.  Any medical facility or doctor's office absolutely has to have the patient signature on a release form before they can send records to anyone else.

As to the scan question, he should probably be getting at least a CT with contrast every 3 mos.   If the CT shows anything questionable, then they will recommend an MRI.  I'm not sure how many of these Medicaid will cover in a year, but I haven't had a problem with Medicare.

I'm happy to hear that you all have located some possible liver specialists closer to your brother.  Please keep us posted and take care of yourself!

Hugs,

Connie

Posted 3/27/2010 7:14 PM (GMT 0)

Hello all.   My brother got a call from University of Washington Medical Center in Seattle.  They have scheduled him an appointment for April 20th for an evaluation for a liver transplant.  Montana Medicaid is going to pay for the evaluation.   Between my mom, sister and I,  he will be in transit through 3 states about 4 hours driving, rest at my house, then after I get off work we fly 55 minutes into Seattle, and then another 1/2 hour driving to our destination.  We are staying overnight at UWMC's Hospitality House and then fly out the next evening back to my house.  It will be a full day(s) for all of us, (my sister, myself and my brother) especially my brother.  His appt is at 9:15 a.m. Tues and they said it will last about 4 hours.   I am wondering if this is the stress test and all that stuff?  I am concerned because he still has that umbilical hernia that has really started to bother him.  Maybe that is why his intestines are messed up. I had forgot he had that because no one has brought it up for quite awhile, and his GP  said there was nothing they could do about it.  A lady at the hospital told my mom maybe it was because of the pressure from the recurring Ascites.  The hospital wants him to start coming in every week instead of every two weeks for Paracentesis now.  His MELD is holding at 11.  My mom found a GI/Hepatologist about 45 min north of him and they have an appointment set up for April 16th.  FINALLY we found one.  I told my mom to have my brother check with Medicaid first and he might need a referral from his GP, hopefully he can get this GI listed with Medicaid as his Primary Dr.  If his Ascites is the problem with doing the hernia surgery, I was thinking they could temporarily do the catheter drainage tube until the repaired hernia healed and then remove the catheter.  They are going to ask the GI.  If anyone has done this procedure this way how did it go?  Well, I have to finish making some final reservations.  Thanks to each and every one of you for all your input, it is truly duly noted and appreciated.   Blessings and prayers.  Happy Resurrection Day +!        Harp. 

Posted 3/27/2010 9:11 PM (GMT 0)

Harp, very good news about your brother being scheduled for transplant evaluation!  This has been a long time coming.  It will be tiring for your brother, along with the traveling, but it needs to be done.  Also glad to hear that your mom found a GI doc not far from him.  You are doing all the right things.  My prayers continue to be with you, your brother and the whole family for a good outcome.

We look forward to hearing what UWMC has to say.

Hugs,

Connie

Posted 3/28/2010 12:33 AM (GMT 0)
Hi Harp, I've been through the transplant program at Mass General Hospital and spoken to the Mayo Clinic in Jacksonville. At MGH, the testing took the better part of a week, not including a endoscopy/colonoscopy, prostate exam, and liver biopsies that were done close to home. Mayo said their testing took longer than that. I'm guessing a 4 hour test wouldn't cover all of that. As far as a stress test, they often do it by injecting drugs to simulate stress, so that your heart rate goes up to 140. I didn't want that and did mine the old fashioned way. I was in good shape and it was hard, but it went off fine. Evidently, the drug routine works as most people go that route and the doctors like the fact that it's quicker for them. Good luck! **David**
Posted 3/28/2010 2:36 AM (GMT 0)
David, you are most likely correct that all his tests will not be done in a 4-hour period.  Most likely, it will be an initial interview and physical exam, blood work, and maybe a scan.  Harp, he will likely be there longer or be called back for additional tests.

Hugs,

Connie

Posted 3/28/2010 3:18 AM (GMT 0)
Thanks for the feedback.  I do know the first hour is for blood work up, but I can't imagine him going very long on a treadmill if that is part of it.  Connie, did you mean longer than 4 hours, because we have a flight set up to leave at 6 pm and 4 hours would be until about 1:15 pm.  By the way have you ever heard of anything like an abdominal sling for a hernia?  It is like a stretchy wrap around the abdomen to help hold in the weakened stomach wall.  Thanks again, I'll check back later.  Blessings,   Harp.
✚ New Topic locked
12345