Update on my mom- T&P please

[luv2rn4fun]

I posted a while ago about my mom's condition and how they believe she was having bloating/swelling due to congestive heart failure.  She has end stage liver disease as well (has known about it for 6 years now).  Well, she went to the specialist last week as things are noticeably getting worse.  She has a ton of fluid build up in her abdomen, trouble breathing when walking and sleeping, the swelling is still there, she's in pain when she tries to eat, etc.

The doctor wants her to have a procedure ASAP to remove all the fluid that has accumulated and to have it tested to see where it's coming from and to make sure there isn't an infection.  Based on her reaction and emotions following the appointment I knew that things were getting worse.  Unfortunately, I went to Dr. Google yesterday and got a little information that pieces this all together and makes a little more sense.  Depending on how her body responds to the diuretics they have her on and this procedure, we are looking at 6 months to 2 years of life expectancy without a liver transplant, most likely 1 year. 

Words cannot describe all the emotions I have going on in my head and my heart right now.  She is so excited to be a grandma (her mom passed away well before my brother and I were born) and the thought of her possibly not making it to C's first birthday devastates me.  I'm thankful for the time we've had with her these past few years but I'm also sad and angry and really questioning "why now"?  I cannot stop crying.

My hope is that we get as much time as possible and that she doesn't suffer.  I hate seeing her go through all of this.  It would be awesome if we could get a liver transplant but that has seemed impossible based on conversations with her doctors in previous years (I'm still going to keep on pushing though because it cannot hurt to try).

I told DH yesterday that we just have to enjoy every moment we can with her and get lots of pictures of her with C (she hates taking pictures so this will be tricky...we'll just have to sneak them in when we can!).

Sorry this feels like it's all over the place...my head is going in so many directions right now.  Thank you all for all your thoughts and prayers!

[MrsMB]

Oh, sweetheart...I wish I could give you a hug right now. I'm giving you so many mental hugs. I'm so sorry....this is so scary. I'm praying God give you what you and your Mom need right now as well as peace and lots of strength.

[estrellita]

I'm so sorry you are going through this We are going through something similar with H's grandma (stage 4 cancer, has already outlived their expectations but her health has been up and down, not sure how much longer she can fight it) and I agree that it's best to do everything you can to enjoy the time you have. I hope it ends up being longer than they think, but yes, lots of pictures, videos and everything you can do to make wonderful memories of her and her grandchild. Not only will it be nice for you to look back at, I know C will appreciate it too (my grandpa died when I was almost 3, I love looking at pictures and videos of me with him because I only have very vague memories of him). So many *hugs*!

[wanderingenough]

So many hugs, lady! That all must leave you feeling so stressed and helpless. Prayers absolutely coming your way. For you, your mom, and your family.

[tacocat]

I'm so sorry y'all are going through this! Huge *hugs* for you! Prayers for your whole family!

[travelbug]

Lots of hugs to you and your family. I agree take as many pictures as you can and share the special moments. What a hard situation. I will definitely be keeping you and your family in my prayers <3

[Deleted]

I'm so sorry that this is happening. You and your family will be in my thoughts and prayers.

[Deleted]

You and your family are in my prayers. Hugs

[bk1]

So many hugs. Keeping you and your family in my prayers.

[ewall]

I'm sorry. Your sad and angry feelings are to be expected so don't feel bad about those. Thinking and praying for you and your family. I hope the doctors are able to provide some relief and answers for your mom.

[Deleted]

Oh no. I'm so sorry. You and your family will be in my thoughts and prayera

[melsamoony]

I am so sorry. You and your family will be in my thoughts and prayers.

[luv2rn4fun]

Thanks you ladies- I really appreciate all the hugs, thoughts, and prayers!

I'm trying to stay positive...I think it's finally hitting me (and the hormones are not helping!). For the last 5 years there hasn't been any physical signs/symptoms that I've seen so we could all just pretend like this isn't really happening. Now that things are progressing I am aware of the decline in health and issues, etc and it's now something that I have to face and deal with. Being pregnant and having C on the way makes it harder in some ways too (although I'm thankful that she will be here to meet C), especially since the only grandparent I knew died when I was 4 (all others passed before I was born)...I really want this for my mom and for C. But, we'll just make the most of it and be thankful for every day that we have with her!

Thanks again- you ladies are the best!

[awick14]

So many hugs lady. I am so sorry.

Liver disease is horrible, once the fluid starts backing up it can be so hard on the body. I am so glad that the doctor want to get the fluid removed right away and hopefully the diuretics can help. I hope that she gets a new liver before its gets too much worse. ((Hugs))

[ginkgoleaf]

I'm so sorry. You're right, enjoy every moment and try to get pics, they will mean a lot to you later.

[luv2rn4fun]

Oct 13, 2014 14:46:28 GMT -5 awick14 said:

So many hugs lady. I am so sorry.

Liver disease is horrible, once the fluid starts backing up it can be so hard on the body. I am so glad that the doctor want to get the fluid removed right away and hopefully the diuretics can help. I hope that she gets a new liver before its gets too much worse. ((Hugs))

Thanks awick14!  It seems like this doctor is on it; however, I know she has not been on top of things until just recently   She made a comment the other day that she has gained about 20 lbs in 6 months.  That seems like a ton of fluid (she mentioned to her doctor that she wasn't even this big when she was 9 months pregnant).  I'm hoping the fluid removal helps a lot...I talked to her this morning and she said she doesn't think the diuretics are really helping (she's not noticing any decrease in swelling or increase in bowel movements). 

In some good news, she got the insurance approval and is just waiting for the hospital to call to schedule the appointment.  Also, she told me that they are doing all these tests to assess whether or not she would be a candidate for a transplant (which has been completely shot down by previous doctors in the past)...I'm really hoping this is the case because although it won't buy her a ton of time (maybe 3-5 more years), any amount of time at this point is something to be grateful for!

[grover]

Huge hugs. I will keep your mom and your family in my prayers.

[HoneySpider]

I am so sorry I cannot imagine how difficult that must be but hopefully she will have lots of great moments with C. Sending so many hugs and healing thoughts your way.

[Blue Moon]

I'm so sorry your family is dealing with this. I'll keep you all in my thoughts and prayers.

[katiek]

I'm so sorry Huge huge hugs. You and your mom and your whole family are in my prayers.

[awick14]

I know it's hard but she needs to try and keep on top of it now. If the new diuretics are not helping after the procedure, like give them 3-4 days, make sure she goes back to the doctor and gets on a stronger dose or something else.

I know it's hard, parents can be stubborn when it comes to their medical stuff, because a lot of them feel like they are losing their independence.

((Hugs))

(Sorry I'm being blunt but a little tough love might help her stay on top of things.)

Edit: grammar

[luv2rn4fun]

Thanks awick14! I hear ya...she has been pretty stubborn but she's now taking things very seriously. I think wanting to be around for us and for C is definitely motivating her.

I just talked to her and she was able to get her appointment scheduled for Thurs at noon. I'm taking her so it will be good to be able to be there for her. Also, she brought up needing to call her doctor and request upping the diuretic dosage. She knows it's not working (she started it on Friday) and also did her research yesterday...her doctor started her on 20 mg (I believe that's the current units) whereas typical starting points are normally around 100 mg.

I'm glad to see that she's motivated to do all that she can do and am hoping/praying that the results come back in our favor.

[mac08]

I am so sorry you are dealing with this, especially while pregnant. I hope her treatment progresses as smoothly as possible, so that she can enjoy being a grandparent for as long as possible. Hang in there, and I have to say that your positive attitude in such a heartbreaking situation is really inspiring.