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Husband with Liver Failure 
Créé par Jenhaz
07 juin 2024, 17 h 15

My husband has liver failure and is being monitored by a specialist with medication, blood tests ( not often enough i don't think ) but i am not a doctor. His bilirubin is bad looking at him tummy and legs so swollen he is on dieretics but doesn't seem to be doing much. Everything is taking so long i feel helpless anyone else dealing with this. My husband is only 52 and they believe this is herediatry as his father passed from the same thing at age 67.
 
08 juin 2024, 2 h 22

Dear Jenhaz, 
It must be so difficult to watch the changes in your husband, physical and I imagine emotional as well. And it sounds as though there is concern that there is not enough oversight - in terms of blood tests at least. 

Not sure if you have time or energy to read a book, but one that I believe would be in most libraries is "Hope for the Best, plan for the rest", by Canadian physician and researcher Dr. Sammy Winemaker and Dr. Hsien Seow. They also have a podcast 'The Waiting Room Revolution' both of which are geared to people who have serious illness and their families. 

Is the specialist someone you can both talk to and raise questions? Is there someone on the care team who is available to support you as well?

Please write as you can.
Kind regards,

Katherine
 
Réponse de Jenhaz
08 juin 2024, 4 h 21

Hello Katherine
Thank you for your reply It definitely is hard to see my husband change so much! thank You for the recommendations for the book and the podcast I would definitely be interested in both. Anything is better than nothing. The specialist is someone that we can both talk to however, he is very brash which I understand he doesn't hold back, but I'm hoping that we can talk more to maybe get more happening and Have some decisions made on the route that we will be going whether it be medication or transplant which obviously is the last resort I will talk to him next time we see him about someone on the care team for support because you can only talk to your friends so much they don't understand unless they've been through it and who wants to burden your friends although they are there for us, but I certainly find that they're not around as much as they were he has an MRI supposed to be in July but we still haven't heard from the hospital as he has a tumour in his liver and they want to address that and figure out exactly what they're dealing with and then we don't see the specialist again until the end of August  he likes to see us every three months which I find odd and I've asked the question but he says well there's not much we can do right now. It's a waiting game so that's where we sit. 
 
Réponse de eKIM
08 juin 2024, 17 h 14

Hello Jenhaz.

This is eKim, a volunteer here at Canadian Virtual Hospice.

I am so sorry to hear of your husband’s liver disease.  Although I do not have liver disease, I have been diagnosed with a different disease, but I am reaching out to you to offer you comfort.

I can relate to the “brash” doctor that you speak of.  The same happened to me on my very first oncology appointment!  The doctor held nothing back. 
 
Fortunately, my 14 years of experience as a hospice volunteer prepared me for balancing my emotions.

Some people (never mind doctors) are like that.  I get it, but “bedside manners” should be a required course for them.  It is an emotional time for people and a caring soul is as important as a bottle of pills, in my opinion.

Speaking of caring souls…..  If that’s what you are looking for, Jenhaz, then you have come to the right place.
  
Canadian Virtual Hospice has a team of volunteers who reach out to compassionately listen to those who need someone to “talk” to. 
 
We all do this because we want to help people.  We all have gone through tough “life experiences” and we appreciate it when others have reached out to support us in our time of need.  We are simply “paying it forward”.

In dealing with other people, and in my personal experience, I have found that in the vast majority of cases, some friends and even family tend to (either not show up at all) or drift away while you still need them.  

There are a million reasons why this happens, but to simplify things, I believe that people simply prioritize the activities of their busy lives and everything else (including you) takes a back seat.  
It’s nothing personal, they love/like you, but “stuff” comes up that they would rather focus on.

As a counterbalance to the above, I have encountered the phenomenon of “the perfect stranger” in my lifetime.  

It is not the stranger who is perfect, it is the timely encounter.  It is like a rainbow experience.  It comes unexpectedly, lasts but a while, and lifts our spirits.

In our time of need, a “perfect stranger” is someone who steps in when it seems that others won’t or can’t.  

After the encounter, which usually lasts a finite amount of time, it ends.  We appreciate what they have been for us and in the future, we look for ways to repay that “perfect stranger” by being a “perfect stranger” to another person in need.

So, in closing, Jenhaz, please return to us here at Canadian Virtual Hospice – anytime you like, as often as you like.  Who knows, you may find “perfect strangers” here who will comfort and sustain you during your trying times. 

– eKim


 
Réponse de Mark99
08 juin 2024, 19 h 35

Jenhaz
All that you're facing and all that you carry with this diagnosis is clearly a burden that can weigh one down. Not unsimilar to swimming with a back pac of bricks. 
 
Being here among others with shared experiences and knowledge about end of life, love, and facing loss is a great step you took. One that speaks to your seeking to find strength though the help of others. Connection humanity & the honest sharing questioning with others can be emotional guardrails for us. Helps us find our center.

We got you. You matter.

E.M. Forster wrote, ‘How do I know what I think until I see what I say?’ For me when I share with others I get to see what I say. And when I see it I understand it better.
 
Réponse de Jenhaz
10 juin 2024, 22 h 51

Thank you, Kim and Mark, for reaching out i appreciate it very much.
 
Réponse de eKIM
11 juin 2024, 0 h 02

You are welcome, Jenhaz.  

Come back to us whenever you want to, as often as you wish and for as long as you want.

We will be "here for you".

- eKim
 
Réponse de Seeker
11 juin 2024, 1 h 48

Hello Jenhaz, I am so sorry that you are going through this very painful time. Watching someone we love struggle can make us feel hopeless, angry and very alone.
When my husband was very ill, several things helped us both. One was writing down all our questions and worries before we had important medical appointments. We prioritised those things that were most important for us to talk about, as we knew the specialists only had short periods of time to spend with us. We never relied on information from the internet but only from our family doctor and other trusted professionals who knew us and my husband's medical situation. This protected us from a lot of "noise".

We also spent a lot of time talking. We made sure that his affairs were in order- hoping for the best but planning for the worst. We made  sure that if the worst happened and I was alone that it would be as easy for me as possible - in other words, no legal or financial headaches. We both knew the grief would be bad enough. We also talked a lot about how we felt about one another. I wanted to be sure I had no regrets about how we spent this precious time together....what could we do to make him more comfortable? To make him forget for a while? What was important to him re. How he spent time? How would we put his precious energy to good use? Mostly we just made sure we spent as much time together as possible. I used to say that I would rather be there, holding his hand during his chemo than in the most elegant place on earth. There was no where else I wanted to be and this has helped me to feel some peace about how we spent his last year of life.


I share some of these thoughts with you in the hopes that you can also be gentle with yourself and realize that there are some things you do have control over. Grab them while you continue to secure the best possible care for your husband.
I wish you some peace and some rest. Going through these sad and scary times can be utterly exhausting. Try to rest when you can. This is a marathon, not a sprint.
 
Réponse de Jenhaz
11 juin 2024, 15 h 44

Thank you this was a nice read and kind of puts things in perspective again. I lose sight of what i need to do and sometimes feel crazy and all over the place. 

We own a home with a realitivly small mortgage, great big yard and was selling, it was alot to go through the process but reconsidering again as we have an opportunity to go to a beatiful 55+ Community and be mortgage free with a nice little yard that is easier to handle ( I'm the 55+ he is only 52 so he is aloud with me). We will have to have another conversation surrounding this as we have been in our current home for a long time! Hard to leave but necessary i feel. Spending time and talking and getting things in order, i hope for a good outcome but with this disease it could go either way, and he isn't doing what he should be doing to stay on this earth. I struggle with this but i have kind of resigned to its your body and your life. He still smokes and has his drinks not a lot but he should not be drinking at all. But he feels he can't so that is heavy weight.
I would feel more companssion if he would try and help himself more; it is very frustrating. But if that is the route and i can't change it i will go with it rather than fight with him over it. He gets angry if i bring it up so i just don't anymore. He knows what he has to do! You can lead a horse to water but you can't make him drink............ So sad he does not value his life and our life together. Frown

Thank you all for being here i will need counselling during and after this i'm sure. 
Jenny
 
Réponse de eKIM
11 juin 2024, 23 h 58

Hi Jenny

During these trying times, so much of what you say seems abnormal to you, and it is, compared to your old normal.

But I must say, I’ve seen so many people have comparable reactions, so in that way, your reactions are “normal”, or similar to many people’s reactions in similar situations.

For instance, you say, “ sometimes feel crazy and all over the place.” This is typical when people are undergoing stressful events/circumstances.

I know that when I have been in stressful situations, my brain just seems to “shut down”. I go blank.

Making major decisions is so very difficult under these circumstances.

It says a lot about your fine character when you say about your home, “Hard to leave but necessary i feel.” As hard as it is, you are facing these major decisions rather than avoiding them. Good for you, Jenny.

You said, “i have kind of resigned to its your body and your life.”

It is possible to feel compassion for those who are not able to make decisions that are best for them. We may not understand them, but we can still feel compassion.

I’m sure that you love your husband and feel compassion for him. But yes, like you say, ‘it is very frustrating”.

Recognizing that your husband’s disease could go either way is a healthy response, I feel.

In my case, with my disease, I have taken the attitude of “Hope for the best, but prepare for the worst.” I feel that, in doing so, whatever happens, it won’t be as shocking as if I buried my head in the sand and would only expect the most positive result.

It’s interesting to read how you have come to grips with your husband’s lifestyle choices.

When you have no expectations of swaying his position, you can honestly say, “I did what I could, but there was no more that I could have done.”

Later on, many people experience feelings of guilt and cannot make progress in their mental well-being.

It is important to recognize the difference between guilt and regret.

Guilt feelings are appropriate if you knowingly did something to someone to cause them harm. This in no way describes you, Jenny.

Regret, on the other hand, is clever in disguising itself as guilt. You might regret that he did not make better lifestyle choices, but don’t confuse that with guilt.

I hope I’m not coming across as “preachy” – tell me if I am. It’s just that I have seen so many people deal with these emotions.

Their circumstances are different, but the feelings that they cause have a commonality.
And how people respond to these feelings determines – in a large part – how they heal from these traumatic events.

Please come back to us here at this forum, to get things off your chest, Jenny. We’ll be here for you.

– Michael (aka eKim)



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