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primary caregiver to my father with cirrhosis

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Posted 7/30/2006 11:27 PM (GMT 0)
Hi Everyone,



I just found the site and have had some comfort in reading all the posts. I was amazed that others are living the same life I am. My name is Samantha, I am 26, newly married.... and now the primary care giver to my father who is in the end stage of cirrhosis. My husband and I moved to Las Vegas a year ago, I came back to New Jersey in October for a show I was doing. My father was diagnosed in November and we have been here ever since.



After a lot of research, tons of doctor visits, and 6 parasentisis we got an appointment for UNDMJ transplant evaluation. One week before his appointment we brought him to the local hospital for severe encephalopathy. After being there a couple of days he was transferred to UNDMJ. In the middle of the evaluation process he got an infection and ended up in ICU on a respirator and feeding tube for 12 days.(the longest 12 days of my life) We were told that this was the end of the line... to all our amazement he pulled through. He was there for 5 weeks total and just recently sent to a sub acute facility to work on physical therapy. We spent 4 days there and then sent to another hospital for another parasentisis. That turned into another 6 day stay and now just sent back to the sub acute physicality again.



This past week I got the news that UMDNJ will not put him on the list due to cardiac[/code] issues. Of course we are all devastated, and I have not shared this with my father yet. He has a fairly good mind set right now. My brothers and I have sent his 400 page chart along with his films to numerous different hospital in NYC and Penn. We do not want to put him through this ordeal again if they won't put him on the list, but we haven't given up yet.



I remain very strong on the outside... but inside I am a mess. I feel better in knowing I am not alone. I am so very proud of my father for his 9 months sober. His sickness has taken over all our lives. To watch him in so much pain is so heart breaking. I am sorry for all the rambling. Maybe now joining this site will help my head be a bit more clear. Thank you for listening. I hope I will get to know some of you. Sending you all warm thoughts!



Samantha



P.S. Sorry for spelling issues... I just don't have the energy to correct.
Posted 8/1/2006 8:24 AM (GMT 0)

Hi Samantha and welcome to the forum! You will find alot of support from our members.

I am my husbands caregiver, he like your father has ESLD. We have been through several hospitalization since December. He has serious bouts with encephalopathy as well and he went in a coma Easter weekend. He has alot of trouble with ascites also. He is currently listed on the transplant list and hopefully that call will come soon!

I am so sorry to hear about the cardiac issues keeping him from being listed for transplant!! The one where I live won't list when there are cardiac issues either.

I can honestly feel your heartbreak, just lost my mother to cancer almost 2 years ago and now I am watching my husband deteriorate daily.

I have to hand it over to God everyday, which is not always easy. Just know you are not alone and there are others on the forum going through the same thing. May God bless you and your family and keep coming back it really does help!

Hugs and Prayers,

Teresa

Posted 8/1/2006 2:48 PM (GMT 0)

Hi Samantha,

Glad you found us. My husband also has ESLD and is not a candidate for liver transplant because he also has esophageal cancer. And every day he is a living miracle that there is still quality time to spend with our loved one. Only God knows when it is our time to go.

This is not an easy journey. But with the support of others on the forum, we live in hope, enjoy the moment and share tears when they need to flow. Keep up the fight.

Hugs,

Barb

Posted 8/1/2006 3:48 PM (GMT 0)
Hi, Samantha, and welcome to the forum. I can't tell you how much it helps to be involved in this forum. We share information and can understand what each member is going through. You really have a lot on your plate, being newly married and having to relocate. I imagine you are unable to work now, too.

I have hep C which developed into inoperable liver cancer--a huge tumor that metastasized to the inferior vena cava. That rendered me unsuitable for a transplant, plus my liver function was still pretty good. I thought I was going to die within 6 months and started to get my affairs in order. However, Mayo Clinic here came up with 2 treatments for me. The first killed at least 90% of the tumor. The second appears to have killed it all, but final results won't be known for another 2 months. I am basically healthy: No diabetes, cardiac problems, or other health problems except for a devastating bone disease. I am turning my attention to that now, though the doc wants to remove the entire right lobe of the liver. It is hard dealing with other issues, along with liver disease.

I do not have cirrhosis, though 90% of patients with hepatocellular carcinoma do. I doubt if I could have had the treatments I did if I'd had cirrhosis. That is a whole different ball game. From everything I've read, there is no cure for cirrhosis, but I am sure that your dad's abstinence from alcohol has bought him time and a better quality of life, despite his illness. It just so happens that I am 20 years sober today! I'm sure I would have been dead long ago, or perhaps gotten cirrhosis, had I continued to drink. Actually, I had been sober for 6 years at the time I got the diagnosis of hep C.   Nine months of sobriety for your dad is a great accomplishment, and you have every reason to be proud of him.

You mentioned your dad being in pain. It seems the docs should be able to control that. You might want to contact Mayo (Rochester, Minn.; Phoenix, AZ; Jacksonville, FL) to find out if they can offer any treatment at all that might help your dad, given his cardiac problems.

I hope you will post often and keep us informed, and just "vent" if that's what you need to do.

Hugs,
Connie

Post Edited (hep93) : 8/1/2006 9:55:45 AM (GMT-6)

Posted 8/2/2006 7:26 AM (GMT 0)
welcome samantha,
my heart goes out to you,,,,it is the most difficult thing to watch someone we love go through pain,and possible end of life ,,,,,,,,and feel so helpless,,,,,,im such a strong person ,and yet watchin my hubby go through interferon treatments for hep b,triple bypass,,,,,and now back in hospital for the beginning of congestive heart failure,,,,,,,he just turned 48 the 19th of july,,,,,,,im so sorry he is not a candidate for transplant,,,hope ya keep returning here,,,,its a great place to let it all out,,,,,,and the people here are amazing,,,,,,stay in touch
Posted 8/2/2006 1:44 PM (GMT 0)

Wow,  thank you for all the replies!  My dad was released for the sub acute facility yesterday.  He is absolutely thrilled to be home after 6 weeks in the hospital.  I on the other hand was very nervous.  Mentally it is good for him to be home, but it scares me that he is not under 24 hour nursing care.  He needs another parasentisis.  His belly is huge just after 2 weeks... the fluid is accumulating so much faster now.  Of course it its painful for him.  On the up side, Mount Sinai in NYC called yesterday and want to see him tomorrow.  We will once again start the evaluation process.  We are praying for a miracle.  I also got a call from Westchester hospital and have an appointment for evaluation on Aug. 9th.  We are trying to see as many hospitals as possible.  W e just want him to get on a list.  We broke the news to him yesterday about the rejection of UMDNJ.  He was crushed but after a while he picked himself back up and said he is ready to start again.  We are going to keep pushing until we have used up every option.

TDT,

Thank you for the support.  Congrats on being on a list.  That is fantastic!  I hope you get the call soon.  How often does your hubby get tapped?  How do they control the pain in is stomach?  I am so sorry about the loss of your mother.  I am sure she is looking down on you... sending you strength everyday!

Barb,

I am sorry to hear your hubby is not eligible for the list.  How do they treat your husband?  I admire your wonderful outlook... When I am down I will certainly think of your words.  I know they will give me strength.  We just take it one day at a time, right.

Hep93,

Thank you for all your information.  I have stopped working... I am so thankful I have a wonderful husband who is so understanding.  We have moved, I haven't worked, and most of all he gets none of my time or energy.  Even still he remains supportive in whatever I need to do.  He goes out of his way to try and make things easier for me.  This worries me as well... it is not fair to him.  I am supposed to start the Radio City Christmas Spectacular in October again.  I am not sure how I will do it.  My schedule is gruelling... I guess we will see when the time comes.  As for you, congrats on your treatment.  It sounds like things are looking up a bit.  Does the treatments make you ill?  Are you feeling better and able to have quality of life again.  I hope that your results will be clear.  Your story definitely gives me hope!  Thank you for your wisdom.  This has made me feel better already.

Wheredidigo,

So sorry to hear your hubby is back in the hospital!  I hope all turns out ok, I am sure you are totally worn out.  Try to do something for you... so many people have told me that.  I still haven't really been able to do it yet, but I know it is important to take care of ourselves a s well.  I am sending you positive thoughts.  If I can help in anyway let me know. 

Rat,

Well it seems like you found the place for support.  Stay strong... you can do it.  Stay sober... just when you don't believe in yourself, remember that we believe in you.  Maybe that will give you strength.  Come and vent anytime.  We will all listen!  Wishing you well!

 

Posted 8/2/2006 3:33 PM (GMT 0)
Hi Dancer,

Gene is on rotating antibiotics to control the toxins his liver cannot process out of his blood stream. Without them he would be gone in a week or so and the doctors say he can bottom out at any time. But Gene is a survivor and like the energizer bunny keeps on ticking.

We use the usual diuretics, Lactulose etc. as needed but dehydration seems to be more an issue of concern. Gene's ascites and edema are slowly increasing. And of course dietary restrictions and our prescription for herbal tea from Gene's Oriental Medicine doctor.

It's all about symptom management and comfort care.

He's the love of my life and worth all we've been through to keep him here.

Hugs,

Barb

Posted 8/2/2006 4:33 PM (GMT 0)

Hi Samantha, I know it was hard telling your Dad about UMDNJ. But the good news is that Mount Sinai and Westchester are interested in evaluations. I will be praying for your miracle to happen also. It sounds like your dad has a good attitude! I know the nervousness of having your dad at home. My hubby is very unstable also, I just have a very hard time going to work on the weekends. He can change so quickly to the point of being critical. He was in the hospital last month for a week just to have fluid drained off daily, hoping to get it under control, he took off more than 25 lbs. of fluid weight in that one week. The fluid is back now! I am not sure what the plan is going to be now. His kidney's are not responding to diet or diuretics and the kidney function is not great. The stomach pain is not very well controlled, tylenol is the only thing they allow him to take for pain and then he can't take it that often. I am sure antibiotics and lactulose contribute to the pain also. It is a catch 22 there, we don't need the encepalopathy kicking in.

Just take one day at time and be good to yourself. We as care givers often forget that we need our space and end up getting burned out. So make sure you are kind to yourself and take some short breaks here and there!! Sounds like you have a wonderful husband. My prayers and thoughts are with you and your family.

Trish, so sorry to hear Rick is back in the hospital. I know how hard this must be on the both of you! It does seem like the treatments would be very hard on one trying to recover from Bypass surgery. Take care of yourself!! I am still praying for you guys! I know things are bound to get better! BIG (((HUGS))) to you!

Rat, welcome to the forum, the most important thing with your treatment is to stay sober!!! Okay you slipped, don't beat yourself up over it! Try getting yourself a sponsor and going to N.A. or A.A meetings everyday and more if the desire hits again. You need someone close by to help you with recovering from drugs and alcohol. Which is why a sponsor is very important here, you need this support! We do have members that are doing the HepC treatment that can support you with your treatments. My best to you, I know it is hard.

Hugs and Prayers to All,

Teresa


Post Edited (TDT) : 8/2/2006 12:35:52 PM (GMT-6)

Posted 8/2/2006 6:05 PM (GMT 0)
Hi, Samantha! So happy to hear that Mt. Sinai and Westchester are open to evaluating your dad! That husband of yours sounds like a keeper! You are indeed fortunate in that regard.

When I say I had 2 treatments for the cancer, I mean just that...not 2 different rounds. The first, chemoembolization, was done through the femoral artery and chemo injected directly into the tumor through the hepatic artery, then coils placed to shut off different areas of blood flow. That treatment was difficult in terms of pain, lack of appetite, and total fatigue. I was in the hospital overnight, mainly for the IV pain meds. The second treatment--TheraSphere--was also done through the hepatic artery. Microscopic glass beads filled with radiation. This was much easier.
I went home the same day.  Far fewer side effects, especially pain. I still am fatigued, from the treatments and from hep C, which I still have. Plus I have a failing hip. So my quality of life is not the best, but I'm working on it, and hoping I can have the hip revision by Sept.

BTW, I am a transplanted New Yorker (Manhattanite), now in FL, and am also a former dancer. (So  you can imagine how hard it is to not be able to walk more than a couple of steps now, or to stand for more than 5 min.)  Yes, I am familiar with the schedule at Radio City during the Christmas show, and don't know how the cast holds up. Just see how things go during the next few weeks with your dad. When do rehearsals start?

Hugs,
Connie

Post Edited (hep93) : 8/2/2006 12:08:17 PM (GMT-6)

Posted 8/4/2006 10:32 PM (GMT 0)

Hi All,

So I have a bit of positive news. We went to Mt. Sinai yesterday and things went well.  My dads blood work was the best it's been in months.  He had a parasentesis.... 9 liters.... so he feels much better.  The doctor was wonderful, very optimistic about getting him on the list.  We will see the cardiologist on the 16th for further information.  All in all it was a good day.  I don't like to get to excited, but any little bit of good news gives me a boost to get up and do it again tomorrow.  we also had home care and PT come in and evaluate today.  It will take a couple of days to hear back but he does qualify so that will be a help.

Barb... You have a wonderful spirit and outlook.  I am learning to take it one day at a time and try to enjoy the moment.  My dad is on the same meds.  How ofter does Gene get tapped?  After he gets tapped does he seem to get weak?  Wishing you well!!!!

TDT.... Thanks for the prayers.  It does seem everything with this disease is a catch 22.  My dad also takes tylenol but it usually doesn't work for him.  He was in Renal failure a couple of weeks ago.  He was a 2.6.  It was very scary, but they made a come back and yesterday it was a 1.2.  Keep positive thoughts... you never know.  Please tell him I wish him well!  Thanks!!!!

Hep93...  It sounds like you have been through so much!  Although I don't know much about the treatments but it sounds like you are on the right track.  I can't imagine you frustration.  Is your hip due to an injury?  Is hep c make the replacement more difficult?  Hang in there, Sept. is around the corner.  Thanks for the advice... rehearsals usually start first week of October, but their is a new director this year so that might change.  One day at a time, right.

Thanks for the support and for letting me share the good and the bad.  You are all in my thoughts everyday and are helping me more than you know!!!!!

Samantha

Posted 8/4/2006 11:49 PM (GMT 0)

Ohh, I also got a call from Colombia.  My brother and I sent all of his records and a cover letter to the doctor.  He called to say the letter touched him and he would like to see my dad on the 11th.  Just another opportunity. Wanted to share that with you.

Samantha

Posted 8/5/2006 3:51 AM (GMT 0)

Hi Samantha,

It is such good news to hear about the other transplant clinics wanting to take a look! It does give you all some hope here! Just keep the positive attitude, it really helps! Good Luck with the evaluation!

Mark had a paracentesis today also, 14 liters, they always give him albumin replacement, that keeps him from getting real weak or should I say weaker. His creatine is running between 2.6 and 1.9. He is rather resistant to his diuretics, they are just plain not working. He did respond with lasix and aldactone, but the aldactone would raise his Potassium dangerously high. He takes Lasix and Amiloride, which isn't doing the trick. Does your dad have trouble with his blood sugars? Mark has become diabetic and is now insulin depend, he has been on insulin since April.

Hugs,

Teresa

Posted 8/5/2006 7:01 AM (GMT 0)

TDT,

Mark was tapped 14 liters... at most my dad was tapped 15.  How does he do after such a large volume?  We have been at 4 different hospital for taps... all do it a bit different, but they all have used albumin.  after the 15 liters my dad was terrible.  He was not able to walk, fell when I was helping him out of the car(he is 6'2 and I am 5'6) and blood pressure was 70's over 40's.  I have a lot of concern for high volumes given our past experience.  How does mark tolerate it?  How much albumin do they give him?  It is very strange, but it so crazy that I know nothing about you yet feel like we can sympathize with each other.  Getting ready to say my prayers and you and Mark are in them.  Thinking of you!

Samantha

Posted 8/5/2006 1:17 PM (GMT 0)
Samantha, what wonderful news!! I hope that one of these medical centers will be willing to help your dad. I feel certain that one will.

The hep C does not make the hip revision more difficult, but the orthopod wouldn't attempt it while I had cancer and such a large tumor. He said there was too much risk. However, now that I've had such wonderful results from the treatments, he is ready to go ahead. The problem now is his schedule...looks like it will be Sept. before he can operate. The bone disintegration is caused by a disease known as AVN (avascular necrosis) or ON (osteonecrosis), in which the blood supply to the femoral heads was cut off at some point and the bone dies and collapses. Hips are the most common spot for this, though it can occur in any large joint, such as knees, ankles, shoulders. The main cause of this is Prednisone usage, but also trauma or heavy alcohol intake. In some cases, the etiology is unknown. I was told it was from drinking in my case--but at the time of diagnosis, I had not had a drop of alcohol in 16 years (now 20.) So I find that reason hard to believe. Since my hip socket is entirely gone, the doc will try to build a new one for me of metal and bone. The success rate of this is only 50/50, but I'm trying to stay positive.

Again, cheers for the good news!

Hugs,
Connie

Post Edited (hep93) : 8/5/2006 7:20:30 AM (GMT-6)

Posted 8/6/2006 6:44 PM (GMT 0)

Connie,

It really sounds like you have been though it all.  I admire your strength and positive attitude.  I am sure you help people more than you know.  I am so glad your treatments have gone well... and you are ready for hip surgery.  I will say prayer for a great success.  Keep believing and thank you for helping me to believe!

Samantha

Posted 8/6/2006 9:22 PM (GMT 0)
Thanks so much, Samantha! Here's a virtual hug for you. {{{{{{{{{Sam}}}}}}}}}

Connie
Posted 8/7/2006 2:45 PM (GMT 0)
Samantha, It seems that the ascites just keepings getting worse each time. Mark did do okay with the 14 liters....He has not had problems with a fluid shift yet. He usually gets a dose of albumin for every 3 liters they take off of him and as they take it off. The ascites is really just getting out of control! I bought a digital weight scale and he gained 8 lbs. from Saturday to Sunday. He does fall on occasions, but has not in the last month. He did have more pain than usual after the paracentesis Friday, the 14 liters is the most they have taken off of him. It seems like it is just accumulating so much faster. I have just never seen anything like it!!!

Does your Dad have trouble with the encephalopathy? Mark, has had alot of trouble with it, he always has at least a small touch of it... which is why it is so hard for me to go to work...I never know how he is going to be when I get home. He went into a coma Easter weekend which I did catch it before I went to work.

I find it comforting that we have this forum, where we can meet others who are going through the same or similar experiences. It seems as though when I am down, there are other members here that pick me back up!!! I just hope I do the same for them!

Hugs & Prayers

Teresa

Posted 8/7/2006 4:43 PM (GMT 0)

Teresa,

I am glad that Mark hasn't had any problems with the high volumes of fluid taken out.  This time my dad did well with his tap.  Every liter they took out they put a bottle of albumin back in.  It is much more than they have ever given him, but it seemed to help.  My dads first tap was in February. (2 weeks before my wedding)  He was getting tapped about every month, but the last one was only two weeks.  Just like Mark, my dads fluid is accumulating faster.  After the parasentisis he used to feel much better... no pain in is stomach.  Now he always has pain.  He does have problems with encepolopathy as well.  The past 2 1/2 weeks have been wonderful.  He has been the clearest since he was diagnosed.  Although the past two days I was starting to notice some different behavior so I gave him another dose of lactulose yesterday.  Hopefully that will help.

This site certainly does help.  Sharing stories and fear are oddly comforting.  I thank you and everyone else for the pick me ups!  My thoughts are with you!

Samantha

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