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Lost Son's Updates on Dad with Hep C, Part II

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Posted 3/10/2014 8:43 PM (GMT 0)
You can read LostSon's prior posts here:

www.healingwell.com/community/default.aspx?f=25&m=2861040

He will add new comments on this thread.
Posted 3/11/2014 8:16 PM (GMT 0)
Hi LS

Please give us an update on your long day of appts with dad :)

Mae
Posted 3/11/2014 10:34 PM (GMT 0)
Carol thanks for getting this going for me!

Mae, It really was a long day yesterday. We were in the hospital from 8AM and finally made our way out close to 6PM. One thing I have come to realize is that this process will involve a ton of tests and hospital visits.

His tests seemed to move quickly but there was just so many of them. We also met with the psychologist that wanted to make sure my father was positive and that his caregivers are up to the task. I am NO DOUBT willing to do what it takes if he is blessed enough to go through a transplant. Overall the one thing that came out is my dad saying he feels like less of a man because he isn't the same person and also that he let his family down. I think those are typical feelings for anyone. But I have a feeling if he stays positive he can overcome it all.

I will say one thing, it is pretty sad how apart from his immediate family no one has come to see him in months...only initially when he fell ill last year did some of his siblings and others call or come see him. Even now knowing the severity, they don't call and see how he is doing. For that reason he doesn't really want to call them or go anywhere. Him being the oldest, always helped everyone out. In fact he made every single one of them the people they are financially through loans, getting them jobs, down payments on homes, paying for their schooling. Some of them now have multiple homes, one has a very expensive home in the suburbs and is doing well. All of this while my father is now living in a modest 2 bedroom brick bungalow with his wife still working thru arthritis to stay covered thru insurance.... Yet another life lesson that I have learned. This journey is truly showing me the realities of life.

Back to the visit...Everyone was really nice and I truly do feel good about the transplant team. They have a good mix of positive, realistic and humorous personalities that have been key for our optimism.

He is due back tomorrow for a few final exams and to speak with the hepatologist. After that it will be a waiting game to see if he is to make it on the list. I will be unable to join him tomorrow due to work (they already gave me a hard time about yesterday) It is our busy time and apparently if I am not around it's the end of the world (more like people need to be micromanaged!)

I hope my brother or sister can make it, if not I might just take a trip there for at least the talk with the hepatologist.
Posted 3/12/2014 2:50 AM (GMT 0)
Hey LS, Sounds like you guys are on a good path now. Don't worry about the others and their lack of concern. All my "friends" abandoned me (every single one of them) when I got sick. People I worked with daily and partied with nightly just vanished. My boss who seen me twice in 3 months did come by and asked "How long are you gonna be out" and "Think you could do some paperwork to finish up last months billing". I just came out of a coma and can't tell you what year it is, but sure give me the paperwork.....Jeez!!!!

Those long days at the hospital will hopefully not be so frequent once he gets into the program. Mine went down to once a year for the "Flip you inside out sessions" and every six months for Imaging. I have blood work done every couple months. It's great you guys like the doctors/team and hope you keep a good re pore. Give your dad my best and do keep in touch, We do love hearing from you.

Ziff
Posted 3/13/2014 7:47 AM (GMT 0)
Lost Son.. I was away a lil bit but wanted you to know that the post you made recently to Ziff was a touching one and one of the most memorable ones I have ever read here.

I understand what you are saying about your family. My Mike hid what was happening from his family. He did not tell them how serious it was and even kept making plans he couldn't keep. I finally had to tell his family because they were expecting him to do things he wasn't up for. A person learns who their true friends and family are in a time like this. Unfortunately, it's not a fair world and those who have been helped so much in their lives don't always respond with appreciation. Your dad sounds like a stellar person. My thoughts and prayers are with you, your dad, and your family!!

Sandia
Posted 3/16/2014 5:20 AM (GMT 0)
LS: We aren't hearing from you...what's up with dad? ML
Posted 3/16/2014 2:45 PM (GMT 0)
Everyone didn't let your dad down, you're there for him. That's what counts.
Posted 3/19/2014 3:12 AM (GMT 0)

arneeb said...
Lost Son.. I was away a lil bit but wanted you to know that the post you made recently to Ziff was a touching one and one of the most memorable ones I have ever read here.

I understand what you are saying about your family. My Mike hid what was happening from his family. He did not tell them how serious it was and even kept making plans he couldn't keep. I finally had to tell his family because they were expecting him to do things he wasn't up for. A person learns who their true friends and family are in a time like this. Unfortunately, it's not a fair world and those who have been helped so much in their lives don't always respond with appreciation. Your dad sounds like a stellar person. My thoughts and prayers are with you, your dad, and your family!!

Sandia

0

Thanks Sandia, He really is a great man. it's a shame to see him feel any less than great. But he is now doing much more for the family that has been there.
Posted 3/19/2014 3:19 AM (GMT 0)

MamaLama said...
LS: We aren't hearing from you...what's up with dad? ML

Carol,

I have been wanting to figure things out but am unsure of what is going on until his results show up. Luckily my dad is feeling ok, but today he called me to let me know that he was contacted by the hospital stating they need him to have an MRI and another exam for his heart.

This really bummed me out....obviously there is something there that is a potential problem. It also blew the wind out of my dads sail. Now he is stressed he won't even be healthy enough for a transplant.


I dread that and don't want to think if he is deemed un eligible upon results that we will be lost as a famiy\
Posted 3/19/2014 4:09 AM (GMT 0)
LS: I wouldn't get too excited. They like to take lots of pictures.

Mike has several thing wrong with his heart. He has advanced Aortic Stenosis and will need a valve replacement and they did Echocardiogram, Carotid Artery US, and a Cardiac Catherization and determined that his heart issues could be managed through the surgery. And they signed off, no problem.

And they love those MRIs. It gives them the best look at the liver and the billiary system. All those ducts have to be reconnected. They will want to look at the major blood vessels going through the liver, etc.

Keep up the positive support. Remember they WANT him to get the transplant. They WANT him to be well again.

Even after transplant, they miss "their" liver. He has an MRI every 4 months. And an echocardiogram every 6 months, but maybe every 4 months coming up....it is getting closer to needing that valve.

Best to your Dad...do you tell him we are all cheering for him over here on the forum???

Hugs,
Mama Lama
Posted 3/19/2014 2:58 PM (GMT 0)
What MamaLama said!

Hugs, Mae
Posted 3/20/2014 3:26 AM (GMT 0)
Carol,

He sure does know! It's funny you asked that because it wasnt until a few days ago that he asked "how do you know so much about what I am going through?" So I mentioned this board and all the people that are going thru the same either first hand or as caregivers and that I learned so much so quick from everyone here. As his primary caregiver being able to ask the right questions has been incredibly valuable. He seemed surprised of such a thing. He got choked up at the notion that I came looking for support...yet moreso that I am actually getting support. He said he feels bad that I am having to look for help but I told him we are in this together.

To be honest, I didn't tell him where I am going, but I did ask him to look online for success stories and places he can share what he is going through. His response? "If I am alive to see my daughter get married, I'll tell my story" Not sure what exactly that meant but I feel after that comment he has a goal. It's funny...he still has a son that needs to get married. Lol smilewinkgrin

On a side note, This past week has been hectic for me at work, and I actually passed up a job that pays more money in Arizona (Which is close to my dream location of Southern California) but never in my life has a decision been so easy. I said no on the spot. No way I will leave my dad and family now.
Currently I am on a very positive mindset! tongue

MamaLama said...
LS: I wouldn't get too excited. They like to take lots of pictures.

Mike has several thing wrong with his heart. He has advanced Aortic Stenosis and will need a valve replacement and they did Echocardiogram, Carotid Artery US, and a Cardiac Catherization and determined that his heart issues could be managed through the surgery. And they signed off, no problem.

And they love those MRIs. It gives them the best look at the liver and the billiary system. All those ducts have to be reconnected. They will want to look at the major blood vessels going through the liver, etc.

Keep up the positive support. Remember they WANT him to get the transplant. They WANT him to be well again.

Even after transplant, they miss "their" liver. He has an MRI every 4 months. And an echocardiogram every 6 months, but maybe every 4 months coming up....it is getting closer to needing that valve.

Best to your Dad...do you tell him we are all cheering for him over here on the forum???

Hugs,
Mama Lama

Posted 3/23/2014 12:25 AM (GMT 0)
So I am not overly worried since I know that this is all part of the process, but my dad received a letter in the mail from the transplant team saying he will not be put on the list at this time. To be considered he must have:

- An abdomen MRI
- Visit and Clearance from his cardiologist
- Join and complete alcohol assistance program.

He has the first 2 scheduled for the upcoming weeks. For the program he hasn't even been told how many hours. So he will ask as well as get a list of locations.

Also got back his latest labs and things got worse...His ALT - 79 (73 Last time) AST - 160 (120 Last time) and Bili-7.2 (5.5 last time)

I am worried that things will start to go downhill fast now. I am at the point where I am asking for advice on what I should be doing at this point?

What should I do to get him on the list?

Thanks
Posted 3/23/2014 1:31 AM (GMT 0)
LS: Mike had all those tests and he had to have all those tests and had to "do" an alcohol cessation program. He also had to have a psychiatrist meet with him several times and write a letter that he was of sound mind and was unlikely to return to the drinking way of life post transplant.

He had the choice of going to a rehab center or AA. He was so ill, I could not bear to have him away from me, thinking he might die any moment at a center, both of us alone.

He agreed to go to AA. He went 3-5 times a week for 6 months. He had the leader sign a calendar each day he attended with the the type of meeting. Some days they study one of the 12 steps, some days a volunteer tells all about him/herself and their battle with their addiction, etc.

The guys were great...made sure he got in and out okay as he barely could walk by then. It was bad. They helped him to the bathroom and always talked to me before and after the meetings. I drove him each time and waited during the most important part of the "meeting." the chat afterwards where the folks really chatted him up. He was their poster boy for the young bucks who were on court ordered meetings...this is where you are going young man, if you don't straighten yourself out.

NO one thought Mike would make it to transplant...not even him. It will be 3 years for his transplant May 1st. He has been sober since September 27, 2010. That is a day to celebrate.

Best to HIM and to your whole family. ML
Posted 3/23/2014 1:56 AM (GMT 0)
Hi Lostson.

In regards to your dad's AST and ALT, the present levels seems to be in the same range as what your comparing them to from the past. However, his bilirubin level seems to be very elevated. In regards to an Mri of the abdomen, this is one of the tests that are required for the transplant team to get a better picture of your dad's liver as well as rule out HCC (hepatocelluar carcinoma) as well as check the spleen, portal vein and other abdominal organs. Did your dad have a recent CT scan? If so, they may be requesting the Mri for a better view or to rule out anything that may be suspicious or of concern. In regards to clearance from a Cardiologist, that's also very important. The transplant team needs to make sure that the heart is strong/well enough to handle the surgery. And, it needs to be able to handle the anesthesia. I am sorry but I don't know anything about the AA meetings/ clearance. Getting listed for transplant, is not an easy process, lots of tests, doctor appointments, etc. It's a lengthy process as you know. Please tell your dad to not get discouraged.

What is your dad's meld score?


I would also look into having your dad dual listed, if possible.

Post Edited (Worried daughter2) : 3/22/2014 9:33:46 PM (GMT-6)

Posted 3/23/2014 4:31 AM (GMT 0)
Complete what they want done. Get dad to AA or an approved class ASAP.

You've come a long ways and the journey ahead is long also. Keep your eyes on one step at a time. Deep breaths. Dad can do this. Just focus on the three things and don't project anything else into the future. Focus on what you can do. This can happen!

Sandia
Posted 3/23/2014 6:13 AM (GMT 0)
ML: That is one unbelievable and tough road for Mike. But it is that will to continue on and do what it takes is what I want to instill in my dad. He is on board for going to his class, but after the results he is getting discouraged some days. But overall he is staying active and not feeling bad about himself. We requested the information on what they require so we can get him in ASAP.

WD: He did have a CT scan recently. After that is when they requested the MRI. His current MELD score is now 20.

Sandia: I am trying to take things a day at a time, but I am having a hard time balancing everything. This is constantly on my mind and find myself losing focus at work. I have begun to enjoy things more and not try to worry as much.

I will say that in the process of taking things a day at a time and just going about my life as normal, I feel I am not "taking advantage" of spending time with my dad.
Posted 3/25/2014 11:21 PM (GMT 0)
Visited my dad today. He was laying down sleeping feeling tired. One look at his eyes and it ruined my day, his eyes are noticeably much more yellow than the past few months.... cry

His Bilirubin levels seem to be rising rapidly. His AST/ALT have doubled in the past few months. Is this part of the ups and downs? Or is this the beginning of the downward spiral?

Also, I have decided to take my parent on a vacation this summer. But I am not so sure that I should given his condition. Id hate for him to be very ill and unable after I set things up.
Posted 3/26/2014 12:26 AM (GMT 0)
Hi Lostson.

You are truly an amazing son! You are very caring and very thoughtful. That is such a nice idea to take your parents on vacation. Maybe someplace local versus somewhere farther from home? Please don't think the worse, try your best to to think positively. I know its difficult, thus my name "worrieddaughter".
The elevated bilirubin, is the reason why your dad's eyes are yellow. Have you addressed this with your dad's doctors? In addition to a transplant team, is your dad monitored by any other doctors (primary care, GI, etc)? Can you call your dad's doctor and talk to him/her about your concerns?

BTW...do you know at what Meld score range your dads transplant center transplants at?
Posted 3/26/2014 2:41 PM (GMT 0)
WD:

Currently my dad is only seeing the transplant team He has been going frequently enough that they are guiding him. They did notice his levels were high and he is going back on Monday.

I'd like to take him somewhere warm and out of Chicago. But if by then he can't then I will have to make adjustments.

Unfortunately his Meld score range would have to be in the mid to high 30s. Which incredibly scary to imagine someones condition at that point.
Posted 3/26/2014 4:43 PM (GMT 0)
Have you thought about having your dad dual listed? That might help having him transplanted sooner.
Posted 3/26/2014 8:59 PM (GMT 0)
LS,

What transplant center are you with now?
Posted 3/27/2014 1:54 AM (GMT 0)
Here is a little hint. University of Iowa.

It is close to Chicago to keep you about 4 hours away and guess what, wait time is only 2 months and they transplant at like 19 or 20.

If I had to list a year ago before they found my bile duct blockage I planned on listing at U of M and University of Iowa.
Posted 3/27/2014 2:33 AM (GMT 0)
Good suggestion Sean...I hope this helps their family.

LS: Do you know how to use the UNOS data base to study the average wait times and MELD scores at transplant for each center and region?

I can help if you like. E me...my mail is in my profile. Put Healing Well in the Subject line so I know it isn't spam.

ML
Posted 3/27/2014 2:44 AM (GMT 0)
University of Iowa has a very good transplant team from what I researched.

Google them, they have very good success rates to.
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