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Posted 3/6/2012 8:43 PM (GMT 0)
Hi Everyone

So many things are happening way too fast, but i think its a good thing. Oscar had to go back to the hospital on Saturday due to his cough. I was sure the fluid was back in the lung cavity and he had to be drained and they needed to observe him overnight. The next morning dr's from the transplant team went to see him and talked to him about being evaluated to get on the waiting list for a liver. One of the dr's did tell him his MELD level was high but that he would still need to go thru the process and jump many hurdles. I do not know what level he is at but this morning they told him he would be given a CT to see if there was any cancer in the liver. They did an ultrasound on Sunday and did find some blood clots. They will also be performing a Endoscopy today. Everything is so fast and I feel bad cause I cannot be there with him I go straight from work and talk to him all day but I feel i need to save whatever PTO time I have at work for later. I know many of you have experience with this. Can you give me some input on what else is going to happen.

Posted 3/6/2012 9:21 PM (GMT 0)
Hi, Moniesol. I have a thread on here about my transplant evaluation. I will try to bump it up near the top for you. I had my evaluation and transplant at Mayo, which is extremely thorough. It took me 6 wks. to get through it all. Most centers don't do as much as Mayo and the eval. is completed within a week. I had to have a caregiver with me for 2 of the appts. and my primary and secondary caregivers had to attend classes on what to expect and what is expected of them after transplant. If your hubby has a high MELD, he would go to the top of the list, once he goes through the evaluation and is listed.

Hugs,
Connie
Posted 3/6/2012 9:59 PM (GMT 0)
Ok yesterday the counselor told him she needed to meet with his caregivers and I really did not understand why. This is happening way faster than what i thought I had no clue the caregivers would have to go thru classes. I just started a new job 6 months ago and I do not qualify for FMLA so I am a little worried. I do not know if there is any exceptions or who to ask about that
Posted 3/6/2012 10:35 PM (GMT 0)
Moniesol, I just bumped my thread on my transplant evaluation, so you can get an idea of what to expect. Mayo's evaluation process took me 6 wks. to go through. Other centers are not as thorough. However, they all require a caregiver. At Mayo, the CG had to be with me for the social worker visit and a visit with the pre-transplant coordinator, as well as take a caregiver's class which included medications, nutrition. what to expect afterwards, etc. At Mayo they were very hard-nosed about requiring a caregiver 24/7 after transplant. As it turned out, I only had one for about 10 days (my sister, who then had to return home to her business) and was then told I could be on my own.

There is a ton of stuff to deal with post-transplant. This includes appointments, lab work, getting medications set up by using a pill box that has all the days of the week, plus compartments for morning, noon, evening, and nighttime. You will also need to help with dressing changes, emptying the bile drain, showering, keeping paperwork straight, etc. I had to take vital signs every morning, including BP twice a day and weight every morning. I still do this. It also has to be documented on forms they provide. After awhile it becomes routine and you will be teaching him what to do so he can soon be independent.

Hugs,
Connie
Posted 3/9/2012 4:29 AM (GMT 0)
Hello

Oscar is still in the hospital undergoing test. Whenever I feel he is getting better it seems he is getting weaker. He had a colonoscopy done today because he had very bad rectal bleeding yesterday and needed blood and plasma transfusions. He has all of a sudden had chest pain and SOB which they do not know what it is, they think it could be an air pocket. It went away with oxygen but he had another episode tonight. I'm afraid it could be some form of blood clot. He is in a very depressed mood since he is still dripping blood from the rectum. During the scope test they found a ruptured vein and some hemorroids. They do not seem too concerned about this. His coughing is still pretty bad and they took chest xray but they have said nothing about fluid being back in lungs. He was suppose to be out of the hospital today but with the bleeding they kept him and are observing him. Lets see what tomorrow brings.
Posted 3/9/2012 2:03 PM (GMT 0)
So sorry Oscar is having so many complications.  Hope they get all cleared up soon.

Angie1953

 

Posted 3/9/2012 7:49 PM (GMT 0)
Hi M-sol,

Liver disease is not for sissies! It is really difficult.

Many of our members are, like you, the loved ones of those with liver disease. Both Connie, our Moderator, and **David**, who posts frequently, went through the ESLD time alone and managed after the transplant surgery pretty much on their own.

Having been through the pre, surgery, and post period with my partner, Mike, I don't know how Connie and David did it alone.

Symptoms are many and complicated, hospitalizations prior and post transpant can be frequent and serious, and the regime of many medications taken at very specific times of the day:

4 times
3 times
2 times
Once a day
Once a week
Monday, Wed and Friday only
Before, after or with meals
Or some combination of the above.

We bought a plastic craft box at Michaels to hold all hte pills (or was it a tackle box, I can't remember)

This can be daunting to the healty and brilliant.

To the normal everyday post op patient, alone with the regime, it can be more than confusing, it can be dangerous to get it wrong.

Before Mike's surgery, things were so crazy at my house, with him needing help to the bathroom and help just bathing, much less unable to make a meal for himself. I don't know how I could have worked. I stopped doing any thing of MINE...volunteer work, visitng with friends, family, and forget about pedicures...the polish grew out and I got a big clipper!

Some of our members have become very very ill. They have needed specialty care pre and post op.

We talked about getting a visiting nurse or an aide to come in some hours of the day so I could rest and maybe take a shower without leaving the door open, water spouting all over the floor, so I could listen for him.

One of our members has her hubby at a nursing home because she has so many responsiblities in and out of her home. It got too much for them.

Our transplant center is 125 miles from home, so I spent over 90 nights in a hotel nearby during this period!

It is a difficult road you walk. You may need help. All those family and friends who say, what can I do to help...let them...make meals, take him for labs, visit during the day so you can work...there is more to this than praying.

I'm sorry your family is on this difficult path.

At our house, we are thankful to all who helped us, to our donor family who signed the paperwork at a tragic time in their lives, to the surgical team who successfully transplanted a FANTASTICALLY healthy liver in Mike, and we are thankful Mike has had the will power and motivation to get himself well.

Best to your family,
Carol
Posted 3/9/2012 8:58 PM (GMT 0)
Thanks Carol

All your words are so familiar! I have read Connie's blog and I do not know how she made it back in forth to all her appointments on a medic van. Oscar should be released tomorrow but he will start going to the liver clinic they told him 3 times a week so I need to see who is available what day.

The medication is crazy it changes every week and most of the time he is coherant to understand the dosage but sometimes I know he has a hard time understanding, but thank God most of the time his mind is good. In regards to the pedicure, your right, it has been months, months and yes i have stopped doing MY things. I have 5 grown kids, youngest is 19, i also have 6 grandkids and its VERY hard trying to make time for them. I know they understand and they help the most they can and i greatly appreciate it.

And i will take your advice and whenever someone volunteers to help I will give them a task, its overwhelming.

Thank you so much for your responses, everyone!

Posted 3/9/2012 11:16 PM (GMT 0)
Well, I did have my sister with me for 10 days. But I surely missed her when she left, as she had been doing the cooking, dishes, laundry, and toting me back and forth to Mayo. There were LOTS of post-op visits. In fact, I had to go to Mayo for labs early in the AM the day after I was discharged.

Regarding the meds, post-transplant they change as well--some dropped, others added, and dosages change.

I hope that he gets the very best of care, but it does sound like they are on the ball.

As for making time for the grown kids and the grandkids, they need to make time for you and your hubby. You will need the help, even if it's just giving you a break for a couple of hours.

My thoughts are with you both.

Hugs,
Connie
Posted 3/11/2012 5:33 AM (GMT 0)
Hello Everyone

Well Oscar was released from hospital today. I wish he was doing better but he still gets nauseated and when he got home he threw up, which he had not been doing in the hospital. The dr said he needs to continue to be seen at the liver clinic and with his primary. Dr told him his MELD is 30 which is high and he would qualify to be listed but needs to begin to attend AA meetings. He has been sober for six months but because of his condition has not attended meetings. So this is his main focus I just hope he can stay healthy enough to be able to be listed. My brother n law brought me a juicer today and suggested I make him some juices everyday he says beets are suppose to be good for the liver. any suggestions? They have limited his water intake to 1 liter a day and a low sodium diet. They did tell me that if i make him juices from fruits and vegetables it does not count as fluid intake but as fruit and vegetables.
Posted 3/11/2012 6:09 PM (GMT 0)
The big question is whether he can live for the 6 mos. of required AA meetings without a transplant. A MELD of 30 IS high. If he can make it to meetings, he needs to have it documented. Make up a form listing date attended, name of AA club or meeting, and have the chairperson for the meeting sign it.

My thoughts are with you both.

Hugs,
Connie
Posted 3/11/2012 6:31 PM (GMT 0)
That is exactly what Oscar said that he hopes he can make it the six months. They did give him a form that he can have filled out he has attended them before in the past but did not do it in a continually. I know he gets depressed on top of everything else but all we can do is take it one day at a time. Before this hospitalization I always thought he could have the TIPS procedure done but the doctors said his liver is too damaged to have that procedure done. I looked at the discharge papers he is suppose to take to his primary and it said his MELD level was 28 which still is high. I don't know what else to do but follow the doctors orders and pray. We both get frustrated with each other because I am always nagging him to eat and he keeps saying that if he takes a boost its good enough. Today is my youngest son's birthday and we are taking him to lunch I hate leaving Oscar alone but I need to do what i need to do its not fair, I feel I do not have time to do everything I need to do
Posted 3/11/2012 7:00 PM (GMT 0)
Moniesol, you have to make time for yourself. Have a good time at the birthday lunch or dinner! You CAN'T do everything. You have to let some things go or spend less time on them.

I hope that Oscar will be up to going to meetings and fulfill that requirement.

Hugs,
Connie
Posted 3/12/2012 8:30 PM (GMT 0)
I know that Connie and I will take your advice to heart. Oscar is suppose to go to a meeting tonight and will try to make 3 meetings a week. I'm at work right now and I'm suppose to drive him to the meeting and pick him up its only down the street from our house so It should not be so bad. He gets bad stomach cramps and hopefully he can handle it. I told him to try and take a nap around 3pm so he will be rested by the time the meeting comes.
Posted 3/12/2012 9:06 PM (GMT 0)
Hi Monisol,

Mike was so sick, someone would have to walk him in the meetings some day. But go he went!  It was a race to see if he could stay alive for 6 months of wait time.  He was a MESS. But I took him and waited for him, and picked him up at the door. He sat in a special seat nearest the men's room, as he too had plenty of GI distress during that time.

Good luck. I am so glad he is sticking with his meetings.

Carol

Posted 3/12/2012 10:27 PM (GMT 0)
Thank you Carol

I'm sure you know that your words give me so much hope. I just do not want him to give up and yes I will be driving and waiting or going back to pick him up. This is definitely a race but I wont give up. Yesterday my 10 yr old grandaughter asked why he was not getting better and why he got sick in the first place. Honestly I was at a loss for words, I basically said that sometimes we just get sick and that the dr's were trying to make him better but it was a slow process....any other suggestions?

Thanks to all your responses...by the way...my name is Monica

Posted 3/12/2012 11:21 PM (GMT 0)
Monica,

We too have grade school grandchildren, 6 of them up north, as we live in Florida.

We told them the Pop might not get better. Sometimes the doctors can't fix you up, but they were going to try really really hard.

Each of the grandchildren came to see him that year, our thought that they might understand better if they saw him so sick. And it gave him great pleasure to have them here.

When he got his transplant, one of them was here, a 5 year old and we kept up a brave face for her. She came to the hospital every day. She even asked about his incision and he showed it her...from breast bone to belly button and across to his side. It was clamped shut and he called it his zipper...they went in and fixed him up. she was satisfied with that!

And ours has had a happy ending, so far. Not everyone makes it. Our kiddies were prepared for it one way or the other.

Hugs, Carol

Post Edited (MamaLama) : 3/12/2012 6:48:01 PM (GMT-6)

Posted 3/14/2012 7:49 PM (GMT 0)
Hello Everyone

I am not sure whether to start a new subject or continue here.  But anyway thank you all for your responses like I said everything has happened so fast. I never thought Oscar could be as sick as he is. Honestly I thought he could gradually get better and to hear that he is not a candidate not even for tips is really surprising. He did not think his liver was as damaged as it is. On his discharge papers from the hospital they named it ESLD, end stage liver disease.

I have a question is ESLD and liver failure the same? I also wanted to let you guys know he did go to his AA meeting on Monday even though he felt like crap but if he wait till he feels better he probably would never make it to the meetings. He is attending one more today at noon and he actually said he felt really comfortable at the meeting Monday but he was not able to make last nights because he was at clinic for 5 hours!! (long story). He left the house at 9am and did not get back until 4pm and he was exhausted and since we are new at this he did not take his medication before he left because he was going to labs and needed to be fasting and he figured he would take them when he came back. Bad idea i told him next time take your meds with you!

Posted 3/14/2012 8:08 PM (GMT 0)
Monica, I'm glad you posted today. Here is fine, Oscar's story continued.

Though he has been very sick, there may be some improvement. When Mike quit drinking, he was much improved for quite a while...with taking the meds as directed...especially the HE meds. His MELD score went from 24 to 16 or 17 for a while and that was a miracle.

His urine went from Coca Cola brown to yellow again, which was also good. And he was less jaundiced as time went on.

But sick...yes, he was very sick. Some stabilize for a long time even wihtout transplant. Other have to make their arrangements. I dragged Mike to the lawyer's office to finalize his will and other stuff like that. He was half out of it, but it was important.

Sad, but important.

And, yes, he should take his meds with him all the time.

Best,
Carol

Post Edited (MamaLama) : 3/14/2012 2:57:17 PM (GMT-6)

Posted 3/14/2012 8:54 PM (GMT 0)
Monica,
When my husband was first dx, we would always carry water and ensure with us. He would get all shaky if he got too hungry. If we were to be out a long while, we would take a frozen ensure drink, so it would be defrosted but still cold when he would want to drink it.
Saying prayers for you.
Emma
Posted 3/14/2012 11:19 PM (GMT 0)
Thanks Carol and Emma for responding. I agree there is days where he just seems tired, but not really any pain and those are good days. I told him we are learning as we go and he needs to take his meds. Back in Feb or late Jan he applied for permanent disability and they called him yesterday and told him he qualified. That is good news in one way but right now he is under County Medical Services and he was applying for Medicaid which I think he will not qualify since they are going to be giving him a bigger check. Does anyone know how long it is before you can get Medicare? I read that you have to be disabled for 2 years if your not of age. He is only 48 and not a kidney dialysis patient. So does anyone know?
Posted 3/14/2012 11:57 PM (GMT 0)
Monica, to get Medicaid before 65, you have to be disabled (according to THEM) for 2 years. So getting SS Disability.

Mike never qualified, but he will be 65 pretty soon and so he has applied to Medicaid and since he has not county benefit or disabililty from an employer.

Good luck with all this.

I know I felt way better when I found this site...it is not like there is one of us on every block, but there are a lot of folks who participate in this forum who have been around the block a few times.

Carol

Posted 3/15/2012 6:54 PM (GMT 0)
Well yesterday was a good day although Oscar did keep coughing and i noticed it was getting worse last night. This morning he text me saying he threw up some blood with phlegm and he felt he was wheezing he called the liver clinic and they told him to go to ER. His daughter is taking him as I am at work and have requested so much PTO that I do not know what to do anymore. I am hoping that its an irritated esophagus from so much coughing, I'm thinking if it were some sort of ruptured vein the bleeding would be continually right? Has anyone had this experience?

Of course I cannot concentrate at work and I told him to keep me posted if need be I can see if I can leave early.

Posted 3/15/2012 7:25 PM (GMT 0)
Moniesol,
I hope that you hear soon from Oscar's daughter that the blood is nothing serious. Good that he is getting medical attention just to be sure. When my husband was first dx, it was so horrible to be at work. I couldn't concentrate, just as you are experiencing. I constantly felt like I was going to vomit or faint. So hard to keep it all together. Keep hanging in there, do the best you can...I found that eventually being at work was good for me...it helped me to keep feeling "normal".

And like Carol mentioned, I too am so happy I found this site. I don't think I could have dealt with everything without Healing Well.

Don't forget to be gentle with yourself.

Emma
Posted 3/15/2012 9:01 PM (GMT 0)
Hi Emma

Yes sometimes coming to work is less stressful! Right now Oscar is still in ER they are going to do a chest Xray and go on from there. He says he is still coughing up some blood but not alot. We will see what happens. I guess it's back to the hospital after work!

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