My husband is Diabetic, has Hep C, Cirossis, end stage liver disease and kidney failure.

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HubbySick
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/8/2010 10:12 AM (GMT -7)   
I sure could use some words from some of you.  My husband was diagnosed with end stage liver disease 3 years ago.  He knew he had Hep C and Cirossis for years but it just BAM hit him one day and he started with flu-like symptoms and his belly started swelling.  Finally I took him to the ER where they performed a paracentesis and removed 11 liters of fluid. ELEVEN!!
 
In April 2009 he developed a dry but constant cough.  He walked in to paracenteses without a cough and walked out with one.  We thought perhaps his lung was knicked during the procedure which now was taking place about every 5 weeks.  That November I rushed him to ER with a collapsed lung.  He was in the hospital FIVE WEEKS since 2 surgeries to reinflate his lung were not successful.  Four weeks into his stay, his kidneys failed and since then he now goes to Dialysis 3 times a week.
 
Now, in Sept 2010, he has to have the paracentesis every week.  After 5 days he is so bloated and miserable he can barely move, can eat very little at one sitting and is nauseaus all the time.  He is on a double transplant list but I want honest opinions here.  His blood pressure tanks so hard during dialysis sometimes, they have to stop the machines.  His blood sugar fluctuates between 300 and 47.  Sometimes that reading of 47 is BEFORE his insulin shot.
 
He has very little if any muscle mass left which he has been told will never come back and gets hideous splits in his feet that take weeks to heal.  I know his eyesight is not was it was either.
 
I'm thinking he is too weak for such an invasive surgery as a transplant.  What are your opinions.....and please tell me the truth.  He has 2 kids who lost their mother to cancer 10 years ago and if I need to prepare mentally for what is to me inevidible.....oh and he eats nothing but kids breakfast cereal 5 or more times a day and took smoking back up...... I'm thinking he has given up and figures what the H3LL....
 
I'm numbed by all of this.  I don't know what I can do for him, say to him or support him.  I try to get him to eat healthy foods and he eats 3 bites and has a bowl of cereal a half hour later.  He has constand diaherria and throws up more than he woll tell me.
 
Please be honest with me.  My heart is already broken.
 
Thanks

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/8/2010 11:07 AM (GMT -7)   
Hi my name is Sandi...and I just went through this with my partner who passed away April 22nd... he died from liver cancer/cirhosis/hep c.... etc... you have a lot going on there... I would let the transplant team help you decide about his readiness for a transplant... cuz a transplant can turn a person right around...and it is qutie a blessing to even be listed for transplant.. many don't get that far for other reasons... he may not be well enough for a transplant... only a doctor can say... anything else is speculation... people can tell you their experiences.. you will have to draw your own conclusions... plz warn him about the smoking... my partner died directly from pnuemonia brought on by picking smoking back up again...he chained smoked for about a week unti I cut him off... it was too late that much smoking with his little damaged lungs caused pneumonia... and his blood pressure crashed cuz he stayed on blood pressure pills... and it happened very quickly... but I believe he probably cut a couple three months off his life by that... however we were under a six month sentence at that point anyways.. so Mike ate Ensure... for supplemental nutrition... also alot of malts... in fact he was asking for a malt when he died because of the dry mouth he had...if he were to balance that diet better... his blood sugar might not fluctuate so badly ....I would talk to an expert on what to say to the kids...cuz he could get a transplant and do better.. hopefully you have settled issues of custody of the kids... like putting a guardianship in place for them ... if not.. you need to get that settled quickly...the last thing they need is a problem like that.. anyways.. Im sure others will give you more feedback...I think honesty is the best way for you but take time for yourself... you have a lot on your plate... and being all things to all people is hard... I know.. I did it...and even now...like you my heart is broken....our story is under the thread "On the other side of no treatment" take care ... my thoughts are with you and prayers also.... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

LanieG
Forum Moderator


Date Joined Nov 2006
Total Posts : 5393
   Posted 9/8/2010 11:30 AM (GMT -7)   
HubbySick, I'm so very sorry about your husband's health problems.  He seems to be hit with a lot all at once.  I cannot give any advice about his illnesses except some diet suggestions for his diabetes.  Since he is on insulin, you know it's very important to always test before meals as well as about 1 or 2 hours afterwards, when he gets up in the morning and goes to bed.  One of the best ways to help stabilize the blood sugar is for him to stop eating food with white flour and sugar, potatoes or rice.  If he can gradually cut those out and eat more eggs (if he tolerates them cooked any way), chicken and fish,  and vegetables as well as all combos of salad food, green leafy food like lettuce and spinach.  If he will have a meal with a piece of chicken breast or fish along with most any vegetable (cooked or not), his blood sugar would most likely become more stable.  However, there's a possibility that some of his medications might be causing his blood sugar to rise or spike but his doctor should re-evaluate his prescriptions for that reason.  Cereal may elevate his blood sugar along with the milk.  I would suggest asking his primary doctor what he thinks about changing his diet to something like this.  There may be certain food restrictions, so it's always best to talk with the doctor first.  Examples of vegetables I'm suggesting: squash, mushrooms, bell peppers, broccoli, cauliflower, lettuce, spinach, cucumbers, avocados.  Berries are better choices for fruit.  If he wants bread, choose whole grain, with lots of fiber.  Best of luck and a reminder you need to take care of yourself, too.  As his caregiver, you have a lot going on.
Lanie

diabetes moderator
diabetes type 2 controlled so far by diet and exercise
very low carb way of eating

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/8/2010 11:37 AM (GMT -7)   

HubbySick, welcome to the forum, though I'm sorry for your reason for being here.  Sandi/Arneeb has given you some very good information.  She has been through it.  I'm just wondering if your hubby ever had hep C treatment...my own curiosity, not that he could have it now.

Sandi is also right about transplant issues/questions.  The doctors are the ones you need to discuss that with.  However, he does sound very ill and may be too sick to undergo transplant.  Do the transplant centers know that he is now on dialysis? 

Regarding the diet issues, Lanie gave good suggestions for a basically healthy diabetic.  I understand that he would not be able to keep down most of what she suggested.  When I had liver cancer and swelled up like a balloon, I found I could only eat soups, Jello (Sugar Free, though I'm not diabetic), and Slim Fast shakes.  The Slim Fast has the same nutrients as Ensure, but less calories and it tastes a lot better.  Because of his diabetes, you would need to get the green light on this from his doctor.  But it would be better than kid cereal 5 x a day.

I suggest you look in the folder at the top of the page entitled Hepatitis Resources.  There is some good information in there and you will know more what to expect in a general sense, though each case is different.

Please do take time for yourself before you get completely burned out.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 9/8/2010 12:43:26 PM (GMT-6)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/8/2010 8:57 PM (GMT -7)   
Hello HubbySick and welcome to HealingWell.   Sorry that your husband is so sick. 
 
It seems that lot's of people with liver disease develop diabetes.   To balance all the meds,vitamins,minerals and foods and keep the body healthy is so hard.  Damaged livers effect so many different areas of a persons body it's not funny. 
 
Hopefully your husband's doctors consult with each other before they change any of his meds. 
 
Take care.........thoughts and prayers......
 
 
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

HubbySick
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/8/2010 9:11 PM (GMT -7)   
Thank you all so much for your reply. I am very worried about him and watch him with helplessness. I appreciate your comments and sharing your experiences. Good or bad it is theraputic for me to know there are shoulders out there for me through this forum.

His kids are both in college and over 18 so guardians/custody is not an issue. It would be the sheer devastation of losing both parents at such a young age.

There are light bulbs that have gone off with me reading some of this....like my finally giving up trying to get him to stop smoking. I would catch him, smell it on him and find and crush every pack of cigarettes I found and still have him lie and say he wasn't. He has developed this rattly cough which makes me think that maybe it is the beginning of pneumonia. Such a stupid thing for him to do after 5 weeks in the hospital with a collapsed lung.

I make food that is healthy, he eaats a few bites then an hour later he reaches for a bowl of sugar smacks or fruit loops. I don't buy this, he does. He isn't supposed to have sugar or salt and those are the main ingredients.

He can't have Ensure because of the high Potassium, high Phosphoras levels. Kidney patients are stongly urged to use NEPRO for this reason.

He is on so many medications to combat his very low calcium levels and very high phosphoras levels which I have read is the combination for a heart attack.....the only organ he has left that is working.

He has blood work done on a regular basis to monitor his MELD score. I was shocked it wasn't higher with the ascites he has. He now requires a paracentesis every week. Last year is was about every 5-6 weeks. They take between 8 and 11 liters a week this way and more via his dialysis 3 times a week.

I'm worried about what the ascites is doing to the membranes surrounding his other organs. They soak in it constantly. I fear cancer. It has to be high in ammonnia and other acidic properties...no?

Thanks for "listening"....I could go on and on. He is 56 by the way. We have been married just 5 years. I didn't know about any of this back then. Sometimes the concern and sadness is replaced with anger for him abusing himself in his youth and how I only get the leftovers of overindulgences that were meant only to pi$$ off his over-bearing father.

I appreciate your kind words about taking care of myself. I do work full time and am also a caregiver to my 86 year old mother who lives 10 miles away. My escape was my sweet daughter who has left for her first year of college. So now I feel very alone and I thank you for your time.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/8/2010 9:33 PM (GMT -7)   

Hi again, HubbySick.  You are no longer alone now that you have found this forum.  There are wonderfully supportive people here.  Regarding the ascites, the danger is that the fluid can become infected.  Also, there is a risk of infection with the paracentesis.  In addition, it can build up so much that it is pressing against the lungs, causing shortness of breath.  Do watch for that!  People with chronic hep C are at much higher risk of developing liver cancer.  The ascites won't cause that, nor damage other organs.

Yes, it is foolish of him to keep smoking.  But as an ex-smoker, I know how difficult it is to stop.  Perhaps he sees no reason to stop, if he feels he's going to die soon anyway.

You will receive a lot of support here, so keep posting!  You have a lot on your plate, so do remember to get enough rest and to eat healthfully.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

HubbySick
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/9/2010 3:50 PM (GMT -7)   
Thank you Connie. I don't think he will quit smoking but I'm sure the doctors will discover it in the battery of tests they do. I almost want to slip them a note asking them to check for nicotine to have them threaten to take him off the transplant list. He needs to be scared strsight so to speak.

But I haven't because he is travelling next week (800 miles) to go see his brother and lifelong friends. He has arranged to have dialysis and paracentesis in that area. I kind of think it is to say goodbye. He is tired of being in pain and having only 2 maybe 3 good days a week. He has told me on more than one occasion that he might someday just stop taking his Phos-Lo (sp?). He said it would be a quick death with a heart attack rather than suffering any longer. I don't know if he is in that way again or not. I have gotten him out of that several times by simply handing him a picture of his kids and asking him not to be so selfish, it would break their hearts (and mine) and have a huge emotional impact on so many, that we can get through this together....and he snaps out of it. This trips makes me think he wants closure.

I'm not sure what to think about it all, but it is something he needs to do and has planned for months. I have called his brother and asked him to warn everyone of his dramatically changed physical appearance. Imagine a football player to an a concentration camp victim. It's THAT extreme.

Thanks for listening....again.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/9/2010 4:24 PM (GMT -7)   
HS, I've made a couple of those trips myself because I thought I might not have the chance to see certain people again or go certain places/do certain things...but I'm still here.  He's probably doing a "just in case" visit.  There's nothing wrong with that.  It's good that you gave his brother some warning of how he looks, so he won't be too shocked. 
 
That's a long trip for him to make.  I couldn't do it--too exhausting for me and I get stiff if I'm in a car for too long.  I went to NY in May, but by plane.  My sister is getting married this weekend in SC (I'm in FL) and was arranging for me to go up there with a friend of hers who lives near me, but I told her I simply could not make that trip.  It's also a 3-day event in the country and I definitely couldn't do that.  So I have to miss some things, but I know myself and what I'm able to do.
 
You might tell your husband that if he stops taking the PhosLo he may have a heart attack, but it might not kill him--he would just be worse off than he is now.  I doubt he'd want that.
 
Try not to worry while he's away and enjoy doing something for yourself.  Get your nails done, read a book, visit a friend.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/9/2010 7:34 PM (GMT -7)   
Hubbysick, Welcome to the forum. I am so sorry for all that you and your husband are going through. It really sounds like you have a lot on your plate. My heart goes out to you as you and your husband battle this terrible disease.

My prayers are with you and your family.
Butterflythree
 
There is always hope!

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/9/2010 9:37 PM (GMT -7)   
yep... I ditto the thought of stopping the thoughts of not taking the meds or other means of ending it soon... a person could not be successful and have more problems than they started with... serious... Mike went down this path with different thoughts... and I did very firmly tell him... that the risks  far outweighed his goal... it kept him truckin on... and centered... but these are the day to day things that we deal with as caretakers... that sometimes don't even get talked about.. the questions... the answers.. the strategies for living... one day at  a time on this walk... thanks for bringing that issue up... Sandi

HubbySick
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/10/2010 2:58 PM (GMT -7)   
Thank you Connie, I never thought of the consquences of the planned heart attack not being fatal. I really appreciate that and will keep that thought in my back pocket. His trip is a 5 hour drive to a ferry across Lake Michigan where he can stretch out for 4-5 hours and sleep or bundle up on deck and watch the shooting stars. On the other side is a 1 hour drive to his destination. He goes straight to a local dialysis center before heading to his brother's. It's sweet of all of you to urge me to do something for myself. I just never bothered, but today I booked a 1 hour massage. I'm very excited about that !!

Sandi, I am happy you are in on this link as someone who was once in my position. He is the love of my life and my best friend. We vowed to take care of each other but while I can do nothing to make him better physically, I am working very hard on the emotioal healing. It is difficult when I try to think of new things to say for encouragement. I appreciate you sharing your experiences and thoughts.

Butterflythree, thank you for joining in. While reading each post brings tears to my eyes, it is also very theraputic.

I wish you all a wonderful weekend.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/10/2010 11:25 PM (GMT -7)   
You are too kind Hubbysick... sometimes feel out of place cuz Mike is gone.. but I find that in sharing as it's appropriate it helps others and myself... as I continue to go through the grieving process... the past 3.5 years went by so fast... seems like we were forever going from one crisis to the other... that I never took the time to think things through for myself...I was always trying to get one step ahead of the next lab, next doctor, next procedure... and then all of a sudden there is this huge void in my life... where all of that was... and putting my feet forward everyday... and planning my life now is harder than all that Mike and I did together....and he was and is the love of my life...and there is not a day goes by that there is not the most awful ache in my heart and soul...but I also feel his presence... and I have my faith and that is what keeps me going.... that and as we help others we help ourselves... so you are too too kind Hubbysick... thank you... Sandi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/10/2010 11:54 PM (GMT -7)   
Sandi, don't ever feel that you don't belong here.  We need caregivers like you and PG and Worried Girl who have gone through it to the end and beyond, to help others.  If it also helps you, so much the better.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/11/2010 10:54 AM (GMT -7)   
well u both r too kind... I never suffered a loss like this before... and the word loss hardly seems to cover the subject...or describe the experience...you think it would get better but sometimes dealing with the details is what hurts worse...just some things... but one has to go forward.. thanks for the positive thoughts though... Sandi

kenneth kiu
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/7/2010 11:15 PM (GMT -7)   
No matter of what situation,you must try ,some people with end stage liver diseases,eventually getting well.
 
kenneth kiu,  do you or your loved one have liver disease?  Please tell us a little about your liver disease experience. 

Post Edited By Moderator (Pink Grandma) : 11/8/2010 5:21:41 AM (GMT-7)

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