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Posted 3/27/2009 9:30 PM (GMT 0)
Aimee, that is VERY good news.  I know you feel a sense of relief.  Please do let us know the results of your MIL's testing.


Posted 3/28/2009 12:51 PM (GMT 0)
Amee,
GOD IS GOOD!!!!!!!!!!!!
Posted 4/1/2009 2:10 PM (GMT 0)
Hey Amee,

I am thinking of you. I'm glad your MIL as well her her children understand how serious this is. It is such a relief when everyone is on the same page, MIL included. Just a suggestion, get her advanced medical directive in order too. This is different from power of attorney for finance. It will give the person assigned to it the power to make medical decisions for her when she can't make them herself. Just an idea. By the way, how young is she?

Posted 4/9/2009 11:50 PM (GMT 0)
Sorry it's been so long since my last update. We have been having a struggle. My mother in law, doesn't want to have a liver transplant. However she, does admit to being depressed. We are trying to find a therapist that she can go see. And we just hope that she will change her mind. But at the same time if it is what she really wants, then we cannot change that.

We have more doctor appointments next week. She has to see a cardiologist and then have another CT of the liver, this time with IV contrast. They want to make sure she doesn't have any tumors.

The home health nurse came today, and mentioned Hospice care. I dont even know how to bring that conversation up to my husbands brothers. They are excepting the illness a little better, but I don't know if they can take this blow. She has been in bed mostly for the past 3 days, although she did get up yesterday for the physical therapist, but she was resistant to doing the exercises.

She stays upstairs in her room, and I take her breakfast, lunch and dinner, and snacks. The past two days, she's decided that she'd rather go to the bathroom in her depends, rather than getting up to go to the bathroom. And she now has the rash, again. It comes out of no where, and leaves the same way. She has been itching so badly, so I've been giving her 25mg benadryl twice a day as needed, per doctor orders. She keeps telling me that she's bleeding, but I cannot find any evidence of blood. Her urine is dark orange. So it's possible that she has a UTI, or worse her kidneys are shutting down.

I am so tired of the roller coaster. I am starting to feel like a robot. My 3 year old son, has been so neglected, and then I feel guilty and over spend on toys, hoping that it will make him feel better and loved. But today, I did go outside with him to blow bubbles, which was so great, I got to hear him laugh. It was so wonderful.

I just wish I could explain it to him what is going on so he will understand.

Well that is all I can say for now. God bless all of you who are going thru this. I pray for you all, everyday along with our own prayers, for our family.

Love to all,

Amee

Posted 4/10/2009 9:44 PM (GMT 0)

Hi, Amee.  If your MIL's kidney function is not good, they will not give her IV contrast with the scan.  Does she have blood work scheduled prior to the scan?  I went through this last week.  My creatinine was elevated for some reason, so they wouldn't do the scan.  I had to obtain Mucomyst to protect the kidneys, to take the day before and day of the rescheduled scan (this past Wed.) as well as receive a 2-hour IV infusion of normal saline, more blood work, and then the scan.  However, they only gave me oral contrast.  I questioned it and was told that's what the order was for.  When I spoke with my hepatologist yesterday, she said that was an error and they should've given me the IV contrast also.  Someone got their wires crossed.  But at least the results were fine and my creatinine had gone back to normal.

Just as it helps you to be able to vent on here, it would probably help your MIL to be able to talk with someone who is not a family member.  So I hope you find a good therapist or counselor for her.

Keep us posted and I hope you and your family will have as nice of an Easter/Passover as possible.

Posted 4/11/2009 4:23 PM (GMT 0)
I need some help making sense of the blood test report. I will list everything that is either high or low, but I'd really appreciate it if anyone can help me understand what it means.

RBC low at 2.88

Hemoglobin low at 10.1

Hematocrit low at 30.2

MCV High at 10.5

MCH High at 35.1

RDW High at 23.9

Platelets alert at 60

Eos High at 18

Eos (Absolute high at 1.2

CEA high at 6.6

Phosphorus, Serum Low at 2.3

Cholesterol, total Low at 98

Immunoglobulin G High at 3753

Immunoglobulin A high at 445

Ammonia 52

Protine present in Urine

WBC Esterase Abnormal in Urine

WBC present in Urine

Crystals present in Urine

Gluclose high at 104

BUN 16
Creatinine High at 1.16

Glom Filt Rate Low at 48

Potassium low at 3.4

Albumin Low at 3.3

Bilirubin Total High at 3.3

Bilirubin Direct High at 1.40

AST High at 51

ALT 34

EBV AB VCA IgG high at 3499

EBV Nucular Antigen Ab, IgG high at 1153

Hep C virus AB 0.2

Iron Bind.Cap low at 198

UIBC low at 96

CMV Ab, IgG high at 29.4

HSV 1 IgG, Type spec high at 5.98

Protime INR high at 1.5

Prothrobin Time high at 15.6

Antinucular Antibodies Direct high at 259

Actin(Smooth Muscle) Antibody high at 33

AFP, Serum, Tumor Marker 6

I know this is a lot to look at, but I'd really appreciate some input. Since her creatinine leve is high, I can assume that they will not give her the IV contrast for the CT?? Would an MRI be as benefitial to look for tumors? As she wouldn't need contrast for that test, correct?

Thanks again for all of the input, and encouragements.

Amee
Posted 4/11/2009 7:05 PM (GMT 0)

Amee, my creatinine was higher than that last week...I believe it was 1.47.  In addition, they use a formula derived from something else (can't remember exactly what) to come to a total figure that they will not do contrast with if it's higher than a certain number.  I was so upset last week that I didn't really take this all in too well as it was being explained to me.  As far as an MRI, if they are looking for tumors, then yes--they do give contrast.  However, it is a different kind.  I always got/get Gadolinium...was told that any tumors would "light up like a Christmas tree" with that contrast.  Incidentally, my AFP (tumor marker) was never higher than 11, even with a huge tumor.  So that particular test is not always indicative of a tumor or if one is growing larger.

I see that your MIL also has indicators of kidney dysfunction, such as protein in her urine.  That is not normal.  In addition, the white blood cells indicate an infection.  Because of the liver disease, the kidneys and spleen are working overtime, which accounts for many of the "high" values.  Chronic liver disease and cirrhosis also will account for low values.

I see that her potassium is low.  I believe you said that she is on Lasix.  Are they also giving her potassium tabs or Aldactone (spironolactone?)  If potassium gets too low, it can cause cardiac arrhythmias.

Clotting problems are often found with chronic and severe liver disease.  These are my impressions in general.  Chemistries are not my strong point, so perhaps Shelly or Penny can jump in and give you more specifics.


Posted 4/11/2009 7:40 PM (GMT 0)
Thank you very much for the info. Yes she is taking 200mg of Aldactone a day. Plus I'm really pushing all kinds of high potassium foods.

My heart is breaking for her. She has become a shell of a woman. Today has been extreemly difficult. She hasn't eaten much, she is not drinking much, and has not urinated very much.

I'm worried that she has completely given up. It tear's me up inside and out, to see her in this state.
Posted 4/11/2009 9:20 PM (GMT 0)
Try to get her to at least take fluids, if nothing else.  Since her kidney function is not too good, she needs to prevent dehydration and kidney failure.  When I had no appetite, I could usually eat soup.  I developed a craving for cream of tomato soup.  V8 juice is also good, as is apple juice.  If nothing else, encourage her to drink water.  You can make it more palatable by adding lots of ice and some lemon.

Posted 4/13/2009 1:26 PM (GMT 0)
As always, Thank you.

We unfortunately had to spend Easter at the hospital. She is dehydrated, and has a kidney infection. She perked up after the first liter of IV Fluids. Her ammonia levels are elevated again as well. The deal that she made with me, was that she will eat more if she could only have Lactulose one time a day. I agreeded, but if she doesn't eat then she will have to take it two times.

Another issue with her, is she is not walking, and stays in bed most of the time. I understand that she is tired form the liver disease, but she still has to get up and walk. I'm not asking for her to walk for 20 minutes, but to at least come down stairs two or three times a day. ( For meals) I am not going to take food upstairs to her anymore, as this will force her to walk more. I just hope that it doesn't back fire on me, as she can be difficult at times.

It's like I suddenly have two young children in the house, the sad part is that my 3 year old son, listens to direction better than she does, and I'm willing to bet at this rate, he will be potty trained faster than she will. I mean that with a light heat too. :-)

This hospital stay, is going to include an MRI, of the liver, as well as a phych consult. Which I am thrilled about. I feel like if we can get her hormone levels normalized, then we have a better chance of her feeling better, and wanting to join the fight to keep her healthy. So, I just hope that she understands how much she is loved. This poor woman, had a very difficult life, and I have never known her to be happy. I just want for her to laugh, and enjoy life, and all that it has to offer her. She is so young and beautiful, I'm not going to give up on her.

Thanks again, and Happy Be-lated Easter, Passover to you all as well.
Amee
Posted 4/13/2009 7:22 PM (GMT 0)

Amee, it's probably a good thing that MIL is in the hospital so she can get some of these issues dealt with.  I don't know if that was the best deal to make as far as taking the Lactulose.  If she does okay on once a day, fine, but if she becomes loopy she may need it more.  I do think that not taking her food upstairs is a good idea.  Unless she is excessively weak, she should be able to do the stairs at least once a day.

Please keep us posted and don't forget to take care of yourself.

Posted 4/13/2009 9:35 PM (GMT 0)
I just found this website. Amee, it sounds like your MIL is going through the same thing as my sister. I tried to get her to accept the idea of liver transplantation - and she did attend the initial evaluation. Unfortunately, she was deemed not to be a good candidate and is now progressing in her illness past the point where doctors can really help her. I saw an earlier post where hospice was suggested, but you were unsure of how the rest of your MIL's family would take this. In our case, we asked the hospice if they would come explain hospice to my sister and the rest of the family involved in caring for her. They did and my sister decided to accept hospice care. The bottom line for hospice is "comfort" and not "cure." It is appropriate in situations where going to the doctors doesn't really do much but put out the crisis fires from ESLD, Cirrhosis, and Chronic Hep C. My sister is taking quite a bit of morphine now, but at least she isn't suffering from pain anymore. She has had pain from edema, ascites, enlarged spleen, and takes lactulose/enulose for the ammonia issue. And they give her other services (massage, companionship, chaplain, a singing group specifically for women, a social worker, her own nurse), as well as providing emotional/counseling support to the rest of our family (sometimes, I feel like my head will pop off my neck from the stress!).

I will pray for your MIL's body to find comfort and her spirit to find peace. May you and your family also find peace and continued strength at this time.
Posted 4/13/2009 9:55 PM (GMT 0)
Maya63, welcome to the forum!  Thank you for that very nice post.  We'd like to have you posting here, so it would be great if you could start a new topic and introduce yourself and your situation to the other members.  Just click on New Topic.  That way, you won't get overlooked.

Posted 4/14/2009 6:58 PM (GMT 0)
Update.

My MIL, is still in the hospital, the rash seems to be getting better. She looks much better and is communicating very well now. She has been eating like a horse too. :-) Which I love to see. I just pray that she will continue to do this when she gets home. She had PT today, and she is still quite unsteady on her feet, even with a walker, so she will need someone to assist her at all times. I thing this is one reason that she has been choosing to stay in bed, so she doesnt' feel like a burden.

I am happy that she did speak with a therapist yesterday, however I'm not sure how it went, as it appears that she is not on any medication for depression. I just wish she could understand that no one is here to judge her, and that her mental, emotional, psycholigical, and physical health are all important, and all have a role in her healing and feeling better.

She was supose to have a doctor visit, at UMDNJ for further evaluation to be placed on the transplant list, however with her being in the hospital still, I may see if they can transfer her to that other hospital so she can continue with her evaluation.


I'll update again soon.
Amee
Posted 4/15/2009 1:58 AM (GMT 0)

That's good news, Amee.  You may be right about her staying in bed to avoid being dependent or a burden on you and your family.  Hopefully, the PT will get her more steady on her feet.

As always, keep us posted.

Posted 4/18/2009 2:32 AM (GMT 0)
Dear Amee,

Just hang in there, girl! I'm glad everyone understands what is going on now. Keep posting and we'll keep reading and writing back!

Joan
Posted 4/19/2009 10:34 PM (GMT 0)
Well, we've had an interesting turn of events lately. As you know my MIL was admitted in the hospital again the day before Easter. After long conversations with her, she has stated that she does not want to have a liver transplant. I have been so stressed out not by her decision, but by the other family members who do not want to accept this as an answer. They didn't want to believe that she was depressed for so long, and now that she has made this decesion known, they say that it is the depression.

I ended up in the hospital myself this past Wednesday. Apparently I passed out at the top of the stairs in our house. My husband and 3 year old son found me. I found out that I am anemic, and my blood pressure was going up and down, causing me to faint. I'm going to be okay, but the stress has really been getting to me. Even though I thought I was handeling things well.

My MIL has another appointment with the transplant team this Wednesday. She has to give her answer then. If she decides to not go forward with being evaluated for the list, then they will not continue to treat her. So, we will then have to rely on a PCP and hospice.

Very difficult, knowing that this is real and that we are having to deal with it. Mine and my husbands anniversary is coming up, and I have made reservations south of where we live. We need to relax together for a few days and refresh. Although it's over a month away, I worry that things will progressively get worse with my MIL and we will have to cancel or reservations. I know this may sound selfish to some, and I'm sure in a way it is. But if I cannot step away to refresh, I honestly don't know how much longer I can help her without getting sick myself.

I love her, and God know's that I would do anything to help her, but it doesn't make it easy to do. I know that he doesn't give us more than we can handle, but I'm wondering how much more I can take. cry

Love and blessings to all,

Amee

Posted 4/20/2009 1:02 AM (GMT 0)

{{{{{{{Amee}}}}  I'm so sorry for all of the stress and that you had a fainting episode.  You really do need to take care of yourself.  Don't feel guilty about going away.  You and your husband need it.  If you absolutely have to cancel, make a date again soon.  However, I would just make sure that your MIL has the care that she needs and go ahead with your plans, if you possibly can.

I'm sorry she has decided against a transplant, but that is her right and the family needs to respect that.  Hospice will be a great help to her and to the family, so be sure to get that going ASAP.

Hugs,

Posted 4/23/2009 4:06 PM (GMT 0)

Yesterday we went back to UMDNJ, for further testing. They did a CT with IV contrast, as well as an untrasound of the liver and kidneys. They also did a Chest X Ray. I was present for the ultrasound as well as the CXray.

I didn't like what I saw on the ultrasound. I'm no expert on them but the liver was so small, and the blood flow was not fully there. It was only in sections. I'm not sure what that means, or if this is something that they will be albe to tell us how much of the liver is damaged. The Left kidney also has me puzzled. There seemed to be something that i can only describe as fiber like inside the kidney. The RT kidney looked clear, and small.

She was a real trooper yesterday though. And it really helped that we bought her a wheelchair for transporting. We just have to make sure that the hospitals, dont try to take it while we aren't around. Which almost happened twice yesterday. I think I'll put her name on the back of it.

I jsut wanted to update you all. We also have a new PCP, which she likes, and who is giving us the referals that we needed for her insurasnce. So all in all... it's going well.

Posted 4/23/2009 10:08 PM (GMT 0)
Hi sounds like your MIL is such a wonderful and is very lucky to have you. Hope things continue to go well. Hugs to you and your MIL. Toolost
Posted 4/26/2009 4:27 PM (GMT 0)
Update...

I am very happy with the way things have been going lately. My MIL has been coming down stairs 3 times a day to eat her meals and to take her medications. She looks so good, her complection is clear, her eyes are alert, and she is not as fatigued as previous weeks. She still hates taking all of the pills, but she takes them nonetheless.

Next week, we should hear about the results of all of the test she had last week. I am nervous, as to how she will react to the news, but am also trying to be upbeat, and positive around her. My concern is that she is now going into renal failure. She is not peeing enough, and althoug she is on fluid restrictions, the color of her urine is between a burnt orange, and brown color. Plus with the proteine in her urine, and the swelling in the face and extrimities... I just worry.

We have to find out what is going on with her insurance as the case manager hasn't called me back in a few days, and we still need the home healt care and the physical therapy for a few more weeks at least, So I will call them tomorrow to find out what the hold up is.

My goal is today is to get my MIL outside as it is beautiful outside today, almost 90 degrees, so she can't complain that it's too cold. :-) The sunshine will be great for the jaundice too, and the fresh air, will do wonders for her.

I know this is a roller coaster ride, and I'm glad that we've reached a peak, and am ready to face the next twist or turn. I know that together we can to this. I am not going to give up on her, I've invested too much and she is worth it.

Amee
Posted 4/28/2009 9:24 PM (GMT 0)
Two steps forward and three steps back. shakehead

Well, MIL has been doing so great lately. It's really been great to see her make such an effort in her own health, for the first time in years. She's been coming down for breakfast, and lunch and even for dinner from time to time. She has been involved in cleaning up and making her bed.

I have been getting her in and out of the shower since the  first episode on March 4th, as the swelling in her legs and feet make it difficult for her to lift her leg over the bath tub. So we have been putting her in our shower as it's a walk in and she has a shower chair to sit in and bathe herself. This made her feel better, and more confident. Well after a long conversation with my Brother in law, he decided that she needed to take showers in her own bathroom, and although the thought was nice, it's not exactly what she is ready for. He bought the handicap rails for the shower and yesterday while I had ran to the grocery store, she decided to take a shower on her own. When I got home, the door bell/call bell that we had bought her was ringing. I went upstairs, to find her AGAIN in the bathroom, but this time on the floor, naked. She had triped while trying to step out of the tub. I helped her up, and she said that she it had just happened and she had not been there too long. I grabbed some clothes and got her ready in what seemed like seconds. I took her to the ER as I was so worried that she had a broken hip or worse internal bleeding. She had fallen on her right side, and on tile.

I haven't even called my brother in law, to tell him as I'm not sure that I can get the message across, without loosing my temper nono   I know that he was trying to help, but I'm not an idiot, and I've been taking care of her, I know what her limits are,and some times I think I know them better than she does.

Good news is, there is no breaks, of fractures, and no internal bleeding.

So anyone who can give me some cool headed advice as to how I can address this with her other sons, so we can avoid situations such as this again????

Thanks.

AmeeP

 

Posted 5/4/2009 5:54 PM (GMT 0)
We had a very nice weekend. My mother in law's siblings came to visit her. We had great weather and it she really loved seeing them. Some of them live really close to us, but it's difficult for them to come often as they work, crazy schedules. Others flew in form out of state. It was so great to see everyone together.

Today we went back to the liver transplant team, for blood work. She only has one more test to do, before the evaluation is complete. Her MELD score is 22, and they are pushing to get the next appointment sooner. It's scheduled for the 27, but since her score is rather high, I along with the Transplant coordinator, are going to call daily to see if they've had anyone cancel, so she can hopefully get in sooner.

So that is where we stand for now.

I hope all is well with everyone else> I include you all in my prayers everyday.
Posted 5/7/2009 2:14 AM (GMT 0)
Just wondering if anyone here, with cirrhosis has been taking milk thissle, or any liver suplements that you can find at GNC, or the Vitamin Shoppe? I cannot get a straight answer from my MIL's doctor, if they help, or if she shouldn't take them in combination with her medications. She is now on a new medication for the edema called Triametrene. Has anyone taken or heard of this?

Thanks.
Amee
Posted 5/7/2009 2:41 AM (GMT 0)
Hi Amee, This is what a couple of doctors told my husband and myself.

The first one was a GI doctor who I realized later didn't know a whole lot about liver disease. After my sister read up on it she sent my husband 3 big bottles of it and said it was real good for the liver.........we asked his GI doctor (this is before he had a hepatologist). He said no don't take it. 2 Years later after the bottles expired we finally remember it and asked his Hepatologist.........He said and I quote. " It can't hurt him.......go ahead and try it." But by that time it was too late for anything to help my husband. I've always wondered .........if it would have helped him had he start taking it 2 years before.

I know that there have been other members who have taken it ..........Hopefully they are still around. There's probably some old threads that if you hit the search button on the second blue bar above you can type in milk thistle and hopefully any posts with that in the title will come up.

Thoughts and prayers............
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