Oct 31

LaBunna, I think that is a VERY exciting update!!  How wonderful for us to hear how well you both are doing.  Your husband really is a miracle.  I'm so happy to know that he is helping you out some and that you are not having to do it all.  Anyone would have a breakdown over the load that you were carrying.

God bless you and keep you both, and please continue to let us know how you are doing!

Big hugs,

Connie

LaBunna, Thanks for sharing that wonder news with us. That gives me so much hope for the future. Right now I miss my husband so much I can hardly stand it. It is good to know that I have a chance of having him back someday. It is just so sad that they have to get so much worse before they can get better. I am so happy for you. I know how rough you both have had it lately and am glad that you are back on the road to normal.

Take Care! You are still in my prayers.

Helen, Just wanted you to know that you and Jerry are always in my thoughts, and I am still praying for you both.

What wonderful news LaBunna, I am so happy for you. Anyone who deals with this disease goes through the wringer with it. I came mighty close to that break down myself. But by the grace of God and HealingWell
I was able to get through it. I squeeked by and give thanks everyday.

And it is good to hear success stories.......They make our day.

You both are such inspirations to us.........thoughts and prayers........

Just a piece of advice that I had heard from a wife whose husband was transplanted in 1998. I used it often and I am convinced that it helped.

ALWAYS hammer the doctors with your spouse's symptoms. I even went so far as to exaggerate sometimes. NEVER let the doctor think that your spouse is 'doing OK' or 'hanging in there'. Report every symptom LOUD and OFTEN. Be a pest. Be a huge pest.
Physical symptoms and mental symptoms.

After hubby's transplant I heard someone say (I was in a daze at the time) that hubby was placed high on The List not so much because of his MELD score, but because of his advanced Encephalpathy and Acites.

Keep this advice in mind, folks.

Lots of love,

Thanks for the really good advise LaBunna!!



Judith

LaBunna

I'm not surprised you had a break down.  You went through the entire nightmare BY YOURSELF!  Those dogs aren't too good at helping except with love which does help some.

 I have had lots of mini melt downs.  Those Docs haven't seen anything yet!  Not until I have had a TOTAL MELTDOWN.  As far as the sleeping.  Jerry falls a sleep in between bites of food. He has been doing that for a year! Especially when his blood is low.  Also the itching is back with a vengeance so I'm sleep deprived again.  We had two weeks of NO itching.  That was heaven for me because it drives me just as crazy as it does him (probably not quit as bad).  Its so awful I start itching!!!  I'm also noticing a big change in his mental status.  Something I've noticed that is strange is counting.  He has an engineer brain and he is having problems counting things.  I'm also seeing a lot of signs of comfusion! 

I miss my BFF's they are all in Seattle.  I have one here.  Her husband had a brain anursym two years ago so she is really a mess.  My daughter tries to help but has an 8 yr old and 3 yr old twins!  My oldest daughter moved back to Seattle.  She was my rock and I miss her terribly!  Fortunately I have awsome neighbors.  They offer contantly to go to the drug store etc.  That is a big help. 

I know your husband is dead set on letting anyone know where you are but if you can figure out a way to call me without your number showing up.  Please do!!!!  Thanks again for all your support.

JoAnn

LaBunna-

First of all, I am so glad to hear you are on "the other side" of this transplant issue. It is very encouraging to read as we are pre-transplant at the moment. My hubby has HepC and cirrhosis, and his MELD is only an 8 (I sometimes despise having to live by MELD scores!!)

Second, THANK YOU< THANK YOU for the advise about hammering. My hubby is not doing so well....but every time they check blood, etc they say well his blood work looks fine.....he has had alot of trouble breathing lately, and we have had a few trips to the ER as a result of it. They have done abdominal CT scans, chest CT, etc and NOTHING is showing up....not even any ascites!! They are now trying to say he has "some anxiety" and probably is having panic attacks. It is making me feel like we are crazy or something. I call our coordinator about everything, and now he has lost his voice....for two weeks now. His pain is excrutiating, ammonia level elevated, and the shortness of breath thing.....how much longerr does someone have to live like this??? Sorry, guess I needed to vent there! I have my mini meltdowns, too......All of that said, you have reminded me that I need to just keep telling them EVRYTHING no matter how "minor" it may be!!!

Thank you!

Mary (Mer)

Mer,
I agree with JoAnn. Sounds like fluid in the lining of his lungs.
My hubby had that same problem 2 or 3 times. The removal of the lung fluid is horrible. This was all a part of the acites.

There is also a different problem it could be, tho.

The esaphagus (sp?) can get 'varicous veins' on it... due to the liver disease. Hubby never had this problem, but I remember him being checked for it over and over and over.

If the problem is not fluid , it might very well be this. I think they call it 'varices'. Once again (sp?)

Whatever it is... make it a HUGE problem and hammer those doctors with it. Back to my original point. "This disease is killing him"!!!!!!!!

Hi Mer

I thought of something else.  My husband can barely talk at times.  Some of it is weakness and some he is so dry from the meds its almost impossible to hear him.  His voice sounds really scratchy.  They have done a lot of the blood gas checks on my husband also.  As far as the fluid around his lungs we always knew what it was.  He couldn't take deep breaths.  So he was really short winded and usually he had a lot of fluid in his belly at the time.  So we knew that it pushed up around his lung.  Jerry has never had verices but one time he vomited so much he tore this esophogus (sp).  Nice uh! I'm sure he last year so much he hit every room in our house and all our vehicles and our driveway and I'm sure I have forgot some.  I think verices  is the only thing he hasn't had.  Even though he has to have blood tranfusions.  I asked my husband if it hurt when he had the fluid around his lungs and he said NO.  Also it didn't hurt to have it drained.  I was in the room when they did it.  After a while all these procedures make us tougher!  I think!  So try not to worry they will figure it out.  I know easier said then done!  Just hang in there.  If it gets too tough just have a mini melt down, that always seemed to help me get through another curve ball.  Also I have found talking to people helps and of course this forum has been my savior. 

JoAnn

LaBunna

Wow I just realized that its been almost 2 weeks since I read posts. Congrats about your hubby. What a blessing to have him back and more of a blessing to have you and your sanity back. You can take that big breath that you have been waiting to take

Good advice about talking to the Dr. I went in to see Hep Dr the other day. Had my notebook of all blood test results, all test results from past 6months. Had a few questions as to if they were going to start TX yet to which he replied "we'll discuss after I lose 35-40 pounds. Then asked about being put on TP list since I had done the 1 year alcohol free and the 3 months (actually 4) no smoking and I had paperwork for raising money to compensate any and all things insurance (medicaid) won't pay. He replied with the same answer. Said my bloodwork was good, lowered my spirolactoneto 200mg a day and said see you in 6 months. I tried to explain to him abou the muscle aches, the brain fog days, shortness of breath but he wasn't concerned about anything except me losing weight. I told him I was gaining 5 lbs every 1 1/2 to 2 weeks. Told me to watch my diet. My sodium levels were good and poof he's gone. My husband just drives me to the visits and disapeers til I am done so he is absolutely no help
Anyways so glad to hear your GREAT news

Karen

Gman's mom, you posted in a thread that has not been active for 5 yrs. Always look at the dates if you add on to another person's thread or post.

Hugs,
Connie