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Posted 9/15/2015 1:04 AM (GMT 0)
We have a new issue. After Mike "forgot" to take his pills for a day, was SO exhausted that he could barely get up to use the bathroom. What was he thinking? He's on Prednisone (NOT a taper phase). Ugh. Get him back on track? And within 24 hours starts holding fluid in...Wait for it...A scrotum. Seriously? Worried with elevated WBC that it may be the reason. What else can happen? I shouldn't ask, should I? It doesn't hurt, it hasn't gotten larger the past 24 hours. He's "weeping" from his drain site (no blood, no pain).

Going part time next week CANNOT come fast enough.

I have not read other posts, just don't have the energy right now. A short week next week will refresh us both. Thank you ALL for kind words and advice! It is VERY much appreciated, Folks...

Post Edited (Martijean1) : 9/14/2015 7:29:54 PM (GMT-6)

Posted 9/15/2015 1:55 AM (GMT 0)
It must be really difficult to take care of Mike and still work full time. I hope starting part time will help some.

Humm...Can you set up some type of pill reminder app for Mike? The edema can become pretty scary looking. Themister just had his diuretics upped last week. He also carries most of the fluid in the lower extremities. When kidneys are involved, it can be tricky... and sometimes the hospital is the best option.

Try to take care of yourself as you take care of Mike. I know that is easier said, than done. Big Hugs
Posted 9/15/2015 7:02 AM (GMT 0)
Yes, The enlarged testicles is something that occurs. Never been clear on why this happens although David I and a few others have mentioned it here. Personally I believe it's a reaction to something he's taking. No doctor I've spoken to can explain what causes this. Again, just my opinion. Mine occurred when they kept switching my diuretics around to reduce ascites. Trying to keep this to a PG-13 rated level conversation is difficult but, just walking became unbearable. Very close to tennis balls.

Again the human body responds differently to certain things. Doctors have to be careful juggling prescriptions but it's a necessity until the proper balance is found. No two people in general will be able to take dosage of medications and react the same. We all are unique. Considering a compromised liver is a disaster waiting to happen. I never thought about what a liver did until mine became a problem. It's a toxin filter simply stated. We have only one and when it gets outta whack it's like a traffic signal that shuts off at rush hour. Chaos, The kidneys take a beating trying to keep up the pace of what they aren't use to doing, controlling where everything goes.

Diuretics are tough on the kidneys. He/you must watch over his meds. A written sheet of what to take and when to take it. A pill planner box. Pick one up at walmart or wherever and put his dosage per day in there. It's your obligation to see that this is done. If not, be nice enough to get him started. I'm sure to a reasonable extent that even those of us with encephalitic problems know we are having a problem. We often have a problem dealing with memory or repetitive task. Ohhhhh so much to learn Marti. But you will.


Ziff
Posted 9/15/2015 9:41 PM (GMT 0)
Ziff, Mike was MORTIFIED that I brought that up, but read your response to him. THANK YOU!!!!!!! You calmed both of our fears.

We DO have a 7 day (morning/noon/eve/bedtime) pillbox. I had been checking it daily until last week, then just once every few days. He got off track after his hospital stay. Until then, he had been doing SO good. Waiting for labs while he's at the ER for earlier mentioned "lower fluid issues).

Thanks for the hugs and prayers...There are so many others worse off than we are...
Posted 9/16/2015 12:16 AM (GMT 0)
You can only do what you can. My wife had to work everyday unless something went horribly awry with me. I was in the hospital for a over a month during the most critical (beginning) of my liver and renal failure. I have very little memory of the first few months afterwards once I came home. She caught Hell in every direction as she had just started at her job, has two kids from previous marriage and keeping me from dying. It's alot to stay on top of.

As side note, Weeping from the paracentesis wound is fairly common. I tried several methods over the course of a year to stop it from getting too bad. Band-aids were useless, Sometimes mine wept for days and gauze pads didn't help. You could change a thick pad every hour till mine stopped. Finally resorted to wash rag a few times with a stretch band like a girdle around my waist to hold it in place. about the time one puncture wound healed it was time to get tapped again. Felt like a pin cushion for a year. Someone on the forum years ago found a ideal solution to the weeping issue. Sanitary pads, Napkins or pantyliner's. Whatever you choose to call them. They'll work.

While we are on the more graphic end (so to speak) of ESLD and issues. Do him a favor and pick up some Tucks or similar medicated hemorrhoid wipes. My guess is that he'll need them real soon. Lactulose is only effectively working if he has at least 3 loose bowel movements a day. Lactulose is another joy of liver disease. Needless to say before he makes a few messes trying to get to the bathroom before he learns the routine, Try to encourage him to be close to a toilet when taking it.

Ziff
Posted 9/18/2015 12:58 AM (GMT 0)
Ziff, docs both laughed, but thought it was genius that SisterCarolyn thought of a Sham Wow.

Mike is being put on low dose lasix tomorrow, but won't know what dose they will be until I get home at 6.

I CANNOT believe the past 36 hours. Can't even begin to explain? Meld is 29. Hospitalized and released in 2 hours. New primary "washed his hands" of the situation. Our doc that handled Mike for 6 days when he was inpatient has taken charge. She saw him at a MELD of 40. 29/30 is GOOD right now (4 weeks later). She has 1 week on, 1 week off. She has scheduled blood draws with liver specialists. She has taken the time to take ONE primary patient. Mike is hers. Thoughts? I truly think she has his best interest in mind...I was wrong when I disagreed with him being released from the hospital 4 weeks ago (and told her)
Posted 9/18/2015 3:39 AM (GMT 0)
Sham Wow, Sister has a great idea!!! Wonder if that Weaselly looking guy would advertise it for that purpose..... Yeah he looks like he'd do anything for a buck. Like to see him wring that thing out full of ascites. Probably wouldn't be good for marketing.

Thoughts: Just curious why you wouldn't be interested in taking him to another hospital? I'm not sure how the VA works. Maybe someone else could answer that one. I was fortunate enough to live near two University hospitals. U.N.C Chapel Hill and Duke. Both are slightly over 3 hours one way for us but well worth the drive. I had my surgery and treatment at U.N.C. I saw a local internal medicine doctor and a G.I doc that stayed in direct communication with my Hepatologist at U.N.C. I was covered by Blue Cross and truth be none almost bankrupted those guys.

Jacksonville FL. mayo clinic works with U.N.C in the event no suitable organ (liver) can be found locally. Of course transplant may be long way down the road with your husband. I hope so. My hope is that he works at staying sober, No/low Salt diet, Takes his medications properly and makes it through his pre-transplant evaluation. Protein and nutritional supplement drinks like Ensure and such will help him get the essential nutrients needed if his appetite fails. I had no appetite due to the volume of ascites and constant nausea. Salt was a major problem for me. Nothing tasted good without it and the adjustment took time to phase it out.

He has to stay as healthy as possible. It still sounds strange even to me now saying that. I was horribly ill, My doctors seemed hell bent on shrugging me off for dead. Seemed like they would brow beat me and were getting a kick out of watching me waste away. I'd often leave the University thinking "Why am I bothering with this?" I didn't have the nerve to kill myself, Feared drinking would only make the pain worse and prolong a already slow death. I couldn't tell them to "_____ off". It was either "sink or swim" as my dad used to say. Eventually that feeling of anger, defeat and shame turned into determination. I will prove them wrong and die trying just for spite. They aint easy on people who messed themselves up and rarely to my knowledge give us the benefit of doubt.

We are our worst enemy and the doctors know it. This man is nothing more than a drunk who is whining about a self inflicted problem. You are a doctor and you have the choice of caring for a sick person who developed liver disease from a accident or A.I.H. Who gets your first consideration of transplant and sympathy? Statistics dictate that the drunk/druggie will go back to drinking and waste your time. Just sit back and wait. They'll implode particularly with a little bit of goading. Make no mistake they want you to get a liver, but you will work for it and that my friend is what the 6 months of verified sobriety is about. Peeing in a cup and when they draw your blood they'll be looking for it. One slip and your either out or start all over again.

I've told my Hepatologist thank you for doing what you did tons of times in the past few years. He said "I did nothing, Thank yourself".

Ziff
Posted 9/18/2015 2:48 PM (GMT 0)
Having visions of Mike on a Sham Wow commercial. In stitches!!!

The only medical Mike has is through the VA right now. From my understanding, MN has 3 transplant centers. Mayo (in Rochester), UofM and Hennepin County Medical Center. HCMC is where the MN VA sends it's transplant patients. The WI VA DOES liver transplants, and we live 5 hours from that location. We see his liver doc next Friday, and will get more answers then.

6 weeks and 2 days sober, only 2.5 weeks documented.
Posted 9/18/2015 3:52 PM (GMT 0)
Don't know if it will be a issue with you guys but they require 6 consecutive months at the centers here. I missed 2 appointments with my therapist due to my need to have paracentesis done, My therapist couldn't or wouldn't reschedule to fit. I had to start completely over again with 3 months of verified sobriety already on the books. In total before I was eligible for transplant I had 9 months of sobriety.


Ziff
Posted 9/21/2015 12:53 AM (GMT 0)
Ziff, did your transplant center take a combo of AA and therapy? How many days per week? Getting my question list together for Friday. I'd rather have this all "ready to go" at the 6 month mark. Also, pre-screening/tests. I know this is months and months out. I am a planner and want to know 3 steps ahead to prepare us (and family, I drive them crazy, but haven't been wrong yet). What questions should I be asking at this point looking at maintaining towards transplant?

Now that I'm part time, should be able to take a day and read other posts/comments. What a sigh of RELIEF! I can help SisterCarolyn with Mikes mom more (Parkinsons), answer (not just return) calls from my parents (Dad is stage 4 colon cancer), and hopefully see my daughter in college? BIG, BIG sigh...

Post Edited (Martijean1) : 9/20/2015 7:18:17 PM (GMT-6)

Posted 9/21/2015 1:37 AM (GMT 0)
Mike did 6 months documented at AA, Many times a week. AND THEY REQUIRED A WEEKLY ETHANOL blood draw that whole time. No transplant if you are not sober. Also he had to go several times to a psychiatrist who had to attest to his good mental health and his likely continued sobriety. In addition those who drink alcohilically and are esld have unique AST/ALT scores. High and the ratio is like 2/1. With Hep C they are both high but one isn't way higher than the other...so the docs will know.

Good luck at the docs.

Hugs

MamaLama
Posted 9/21/2015 2:06 AM (GMT 0)
The forms I was given during my consultation visit had a check boxes for "AA" group or "Other". "Other" box had a explanation area below it. My doctor had filled that out and wanted my signature at the bottom. He recommended one on one addiction counseling, I didn't argue with him. I do believe you can do either one in most cases. They look at each person individually but the guidelines are strict. I was honest about my history with alcohol and occasional drug use.

My opinion: If Mike would be more comfortable in a room full of people talking about his issues then AA is fine. There is a down side to AA. Our court systems often require AA as a method of potential rehabilitation. Not everyone wants or HAS to be addiction free in the meetings. Fact is, A small handful is there just watching the clock till they can get out. Been through this myself 25 years ago. A few times. AA works but you have to find the right group. They have closed meetings that wont allow that element a few times a week in alot of areas. I don't attend AA but would have no qualms attending it now. A bunch of folks here owe their lives to AA.

Therapy allows you to discuss not only your addiction but what motivates it openly without fear of chastisement or concern of everyone you know knowing your "dirty laundry". I live in a small town in rural NC and we only have 2 AA meeting halls. The chances of me running into someone knowing that much personal info about me is way too great in my situation. It's hard enough to keep your neighbor outta your business without adding AA to it. Alcoholics Anonymous aint too anonymous around here. Downside is that it cost money for therapy. My co-pay was 65.00 each time I walked in there.

Ziff
Posted 9/21/2015 4:17 AM (GMT 0)
Ziff, you really are a huge asset, and I mean a really huge asset, to all of us here - even those of us with no addiction issues.

I always appreciate your posts, and I admire you for fighting and enduring all you did.

Thanks
Susan
Posted 9/25/2015 10:34 PM (GMT 0)
Your answers here have been invaluable. You have NO idea how much it's helped us all!

Not a full blood draw today, but after a week on 40 MG Furosemide and 100 MG Spironolactone again once a day, creatinine is at 2.4 (up from 2.0 last week). Stopping Furosemide, keeping the other.

Got some info on VA transplants. They no longer use other hospitals, and will NOT take living donors. A coordinator has us on a call list for next week so we can do prep work prior to the 6 month mark. We need to get kidney function under control. At this point, he wouldn't make a list even if he WAS at the 6 month mark.

The GREAT news? They are documenting 8 weeks and 1 day sober (he IS)! At this point, kidneys are more of a concern.

Post Edited (Martijean1) : 9/25/2015 5:41:17 PM (GMT-6)

Posted 9/25/2015 11:10 PM (GMT 0)
I am glad to know things are moving toward being listed for Mike. Good news on having documentation for sobriety. I hope you are having easier days with the part-time status, Martijean. I know how long caregiver days can be. I hope Mike's kidney numbers get more in line, soon. Big Hugs
Posted 9/25/2015 11:11 PM (GMT 0)
Just so you know this is doable...

Mike was MELD 26 in October 2010.
He quit cold 9/27...his MELD improved some.
He didn't join AA til 11/1
He was hospitalized for acute kidney failure 3 times!!! Stayed a week in hosp each time...and they started his TP prep.
He had some other issues as well...sepsis one time and pancreatitis another.
Lots of lasix and spironolactone too. And all the rest of the meds.
On the first day of the 7th month he got his liver!!!
He can do this.

Hugs

MamaLama
Posted 9/25/2015 11:46 PM (GMT 0)
Between this, and news about Dad tonight, I needed a (or 2) cheerleaders. THANK YOU! I KNOW he can do this!

New HE issues have started this week. Mike has NOT been taking Latulose. That has been corrected. How long typically before he'll have better mental function? 3-4 doses?
Posted 9/26/2015 12:31 AM (GMT 0)
That's great news. Just as a warning to keep a stiff upper lip. This disease has more turnarounds than all the worlds streets combined. Use these good points along the way as benchmarks, A tangible point for another start. Stick to those meds!!!!! Watch how he reacts. You'll be helping his doctors fine tune them.







Ziff
Posted 9/29/2015 9:07 PM (GMT 0)
Mike got his 2 month AA coin! He didn't start off going as often as he should have, but is made it at least once a week for 2 months. -happy dance- He's been consistantly 3+ days a week the past month. No other news. Thanks for all of the cheers and info, Folks. You have been a wealth of info and support.
Posted 9/29/2015 10:17 PM (GMT 0)
Martijean,


I told you my Mike went 3+ times a week, got his paperwork signed (a calendar with big squares for a leader signature), but NEVER shared one time for the whole 6 months. So I think Ziff got more out of the program he did that Mike, BUT, he talked to the guys before and after, on the phone in between....he got into it. He started at the beginning with the deal about not deserving to live, he was a bad person, someone else should get the gift of life. But in a while, his sobriety stronger and stronger he really wanted to live, wanted a second chance, and got it!

I have to remind you that Lactulose helps but doesn't cure HE....it helps. When they added the pills Xifaxan, then there was a really noticeable improvement. It is an antibiotic that does something in the gut to get the bad stuff out. He was both a bit confused and down right mean. The means didn't go away until he started on the pills. they are expensive and we had a battle with the insurance folks, but it worked out int he end. I told them he was just dying of liver disease and did they deny the soldier dying in battled morphine because THEY were just gonnna die anyway...I must have gotten a sympathetic person on the phone that day...'cause he got a 6 month supply which was all he needed!

He can DO this.

Hugs,

Mama Lama
Posted 9/30/2015 1:07 AM (GMT 0)
Marti, Your right he likely wouldn't pass the pre-transplant surgery checklist. I'm somewhat hesitant saying this as to not put you or him off the notion transplantation is doable. You will be told if you haven't already that "He will be healthy enough to survive the surgery". Transplant surgery is a big deal even though modern advances make it less risky, It's still pretty sketchy as to how one will do during and after transplant. Hospitals like to trump big success rates. No better way of doing that than having a healthy patient to lessen any risk they may encounter during a operation. Stress test on the heart and lungs along with a small battery of other test determine spots to work on prior to surgery.

Once this was explained to me initially. My first thought was "You gotta be schiting me, Right????" I haven't seen a doctors office since I was 16, I'm a alcoholic, I have a 1-1/2 pack a day cig habit, Up to 9 liters of fluid drawn out of me bi-weekly, Can't remember what day, much less the year I'm in and have little control over even my bowel movements. You say I will be healthy enough to survive a transplant that I will be nearly dead from needing. Oxymoron? Well........... guess what? Rod Serling aint gonna walk through the door and this crap just got real. Pee in a cup, We'll be taking 15 vials of blood, Jump on this tread mill, Blowww in this machine till the balls stay up, X-ray this, May I insert that, Hold your hands out, I'm just gonna poke this and tell me if it hurts. And last but not least "Take a number and please have a seat".

Glad to see he is remaining addiction free. These next few months will likely see him go through some changes if he is working the program. Sometimes we feel things for the first time in years at this point. Our addiction shielded us from what most people naturally learned to deal with. Responsibility for current and past behaviors rush in to fill the void once awash with carelessness and addiction. Self pity or even piety can also be seen during these early days. Our compass is messed up but time will heal these issues. Tell him to keep up the good work and stay true to himself. And you, Well you just need to keep the faith and be diligent in the obligations that you can. Take no more gruff than you care to. Find your boundaries and lay them once.


Ziff
Posted 9/30/2015 11:41 PM (GMT 0)
Hiya. I don't post often, although I did a LOT 2 yrs ago. I felt like you do, overwhelmed and overworked, underfed and underslept.
I was working full time, so I quit that job, took a 3rd shift in place of, at full time. I worked the occasional weekend gig (I am a chef) to help keep all our 'stuff.'

I could do this since my wife was in the hospital so much she got to come home as a 'reward'....code word for she is going to die when she comes back, so let her go home for a few days.

And she didn't. She lived. She made it through and got a liver transplant. At about 5 months into this rollercoaster so many here have lived, or was at the side of. Screaming in your head. I felt like if I started screaming I would never stop. I probably wouldn't have.
I watched her basically exsanguinate three times. And they put it back. And stopped the whole' dead' thing. I watched while they came up with amazing drug treatments that are not really heard of, but worked...well, enough. I felt so dammed HELPLESS. But, being there, her knowing I was there, every day. That helped more than I can say.

Keep a GOOD record as this goes on, so many docs, SO many teams. Things get lost in the cracks. I am disturbingly good with facts and times and all (chef thing) and not all are, so keep a good file on everything so that 'things' don't happen....Like when they sent her back upstairs covered in Heparin and removed her temp dialysis port. And she tried to bleed out AGAIN. I could not have stopped that, but I did stop/suggest many things that did work.
This forum...is priceless. She got transplanted and has been good (but for just not having the same life, she was a Pro Dancer, the ballet kind, not stripper, lol and just being easily tired.) But life will never be the same.

YOU need a support network, this is part of how we got her where we did. We have a Facebook page where I could keep everyone from our lives and beyond updated on what was going on, day by day. This was considered mightily when they made the decision to put her actually on the list, instead of just letting her go. She is now 42, that would have been terrible, yet happens everyday.

It sounds like you are about to experience what I did. Strong person, lot of damage, lot of possible outcomes. When she got to the last bit, they made her MELD a 50+ They called her 'the perfect storm' since she was basically dead but still going. And knew it (Trust me on this, remember 'lactulose enema'....just make sure that there is a LOT of protection around, lol, oh, just one of the well received suggestions I made.)

This was the most difficult thing I ever did. Many asked me HOW I could. I said, simply, HOW COULD I NOT.

Either way it goes, be not afraid to USE the internet. Use this forum. USE that search function. I did and learned SO much so fast. Even pulling 50-60 hr weeks, hanging at the hospital and taking care of 'things and stuff.' This is not a long haul, like I said, looks like you get to experience what I did. From Wha? To Holy F *** in 2.2 seconds. Be there, be here, go ahead and give yourself time now and then but do go overboard. It can mean the difference between life and death for him, if you are in for being a caregiver. LEAN on this forum, it's a great place to let it go when you need. Look at my past posts, lol. I was a BASKET case.

I do stop in here now and then to check up on people I feel very close to now. Feel free to ask me anything.

The people here, they are more than family now. They kept me sane as I could during that time.
Posted 10/1/2015 2:38 AM (GMT 0)
rk...how special to hear from you...glad you posted in. I often wonder how you are doing. special hi to both of you...glad she made it through

Hugs ml
Posted 10/2/2015 4:33 AM (GMT 0)
I am here all the time, now and then something tells me to speak up. Marti's pain is too close to home for me. And yes, she is doing great. I have a brand new kitchen I have total control of now. Things are 'okay' as they can be, being in Seattle and having the tech jerks take over and make everything cost too much to live here. Either way, she has her health back and the kidneys are still holding well as they can :) You will see me pop up now and then, but trust I am a constant reader...
Posted 10/5/2015 2:02 AM (GMT 0)
I've been looking back at old posts the past few days prepping for what's to come. I've come to the conclusion there is NO prepping. Day by day is the ONLY way.

We have a day off tomorrow. NO work (for me), NO appointments (for Mike). Can it be? He wants new tires for his truck, and I'm taking Murphy's Oil Soap to the kitchen cabinets. I am waiting for the "ball to drop" again like August. Ya'll know it can happen at anytime...The numbers and energy level just DON'T make any sense! Feeling thankful for another good day, and everyone's helpful info...
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