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We've relocated to Durham, NC for listing at Duke.  He has Cryptogenic Liver Cirrhosis and Idiopathic Pulmonary Fibrosis.  I left my kids, my friends, my family.  I'm the bread winner and am trying to work and support everyone while taking care of my husband, who requires constant care.

 

Yesterday morning he fell and hit his head and we spent all day in the ER.  I think I'm spent.

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Hello Khaki:

 

Welcome to the boards. I can only imagine how spent you are... You are carrying such a heavy load! 

 

Your situation sounds very difficult. How long do you expect to be in Durham or is that up in the air?

 

In tough times, it is important to find time to care for yourself. Does Duke provide any access to programs designed to assist family caregivers during the transplant process? There are programs designed to help and one that is national is Faith in Action. They are available in Durham and could possibly provide some moments of respite for you. Here is the link: http://www.fianationalnetwork....rograms.cfv?state=NC

 

Meanwhile, take a deep breath and try to let your body relax. You are not alone!

 

Hugs, Glenda

 

Hello Khaki

 

Welcome to Empowering Caregivers... I have been out of touch with the Internet but I see that Glenda has given you some good info. You have found a safe place to share and receive feedback... many people do not always respond but so many do read the posts...

 

 

I am sorry to hear of your situation with your hubby.. it isn't easy.. to wait for just a liver transplant can be so stressful but to hear that he has lung issues as well is a double whammy...

 

My thoughts and prayers are with you and your husband... please keep us posted... richest blessings in all you are doing.

Hello Khaki:

 

I hope that things are going a bit better and that the transplant process is coming together... Have you heard anything more since the dry run? I cannot imagine what you are going through being away from home and family.  You are blessed with your daughter (and twins) and I hope all is going well at home!

 

Churches usually do have support groups and that is a good idea. Also, perhaps Faith in Action will have a recommendation if they cannot help. Have you checked with Duke to find out about any support programs they may know about? 

 

Meanwhile, just know that we are here for you and your family is in my thoughts and prayers. 

 

Hugs, Glenda

Faith in Action called me and sent me some forms.  They charge, I was kinda hoping it was volunteer.  I'm thinking maybe I'll need them more afterwards.  Hubby is hanging in there.  I've reached out to his son, who lives in Sweden and asked him to come so I can take a week to go to Atlanta to see my friends and my kids.

 

Meanwhile, we're just in limbo purgatory.  There is no way to know when and if we'll get The Call.

Hi Khaki

 

I am very surprised to hear that FIA is going to charge you... it is supposed to be free unless they couldn't get continued funding... what is the fee that they are going to charge...

 

That would be nice if your husband's son could come over to respite you...

 

it has to be so difficult being in limbo as you are... you are waiting for two transplants?

 

please keep us posted...

 

keeping you all in my thoughts and prayers

 

gail

They will do the both transplants at the same time.  That being said, our wait is typically longer because of the UNOS (United National Organ Sharing) configuration.  We might get lungs, but no liver.  So then they would go to the next person in line.  It's very complicated and I don't think anyone REALLY understands how it all works.

{{{Khaki!}}}

 

Major surgery is so very scary.  Prayers and positive energy headed your way. 

 

I'm glad you are on CaringBridge.  My cousin found out over New Years she has stage IV lung cancer that has spread all over and just recently finished chemo treatments and is doing much better.  She and her husband both post.  It's been a blessing to us to get updates and leave little cheery notes for them as a shared but far-flung community of relatives and friends.

 

Extreme cyber hugs to you today.

-Barb

Hello Khaki:

 

I went to Caring Bridge to see how everything was going with you and your DH. I was saddened to hear that you are now looking at hospice care. I see that there are many others thinking of you and your family during this time - you are not alone. And, as your journal requested, I am praying for Doug to "have peace, no pain, and to be able to breathe".  God Bless!

 

Hugs, Glenda

 

 

Thanks all of y'all for being the angel caregivers that you are.  If you haven't lived it, you just can NOT understand how hard it is.  About 2 weeks after my husband died I was like, "What do I do now?"  I've been so focused on caregiving. 

 

So now I'm trying to learn how to grieve.  It's very hard work.  Thank you all for your support and I applaud, commend, and bow down to your selflessness.

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