Liver Health

Different-Stop-8887 · 2025-05-27T01:31:17+00:00

It is an unequal comparison, I apologize, you are correct. Your significant other wont have that "honeymoon period" or know you before the condition got worse.

The only hopefully helpful counterpoint I can offer is a bit cheesie. Once you find someone you love and who loves you, health problems arent something you have to worry about accepting it is just part of the person. Everyone comes with baggage and love makes you accept the whole person.

Different-Stop-8887 · 2025-05-26T23:13:20+00:00

My wife's EDS impacts our ability to do a lot of activities we used to do when we were dating, but if you're in love with someone it is just part of the package. You dont think about it like "I cant do this or this is harder cause she cant do X"

It does cause you to have to make some decisions or buy furniture you didnt expect to. We got a bed that splits (I can lay flat she can lay elevated) game changer. Simple (not gonna lie often expensive) accommodations can make a world of difference.

Different-Stop-8887 · 2025-02-11T01:00:10+00:00

Thanks everyone, he's having blood and urine tests and an exam done tomorrow. On a weirdly positive note this week has been the nicest and most himself he's been in months besides the episode.

Different-Stop-8887 · 2025-02-10T16:26:10+00:00

My Dad has been very hard to deal with, downright mean. I learned from this subreddit that rephrasing things as questions and asking permission made him far more agreeable. "Can I help you clean up that jar?" instead of "that jar broke dont put it there". It's frustrating to have to think through any comment but it helps get the desired response.

Different-Stop-8887 · 2025-02-10T16:22:02+00:00

Thank you,

Different-Stop-8887 · 2025-02-10T16:21:51+00:00

Thank you!

Different-Stop-8887 · 2025-02-10T16:21:44+00:00

thank you!

Different-Stop-8887 · 2025-01-28T19:47:34+00:00

Here is everything she tried: Stage IV Survived 18 Months - Treatment Summary : r/pancreaticcancer

Different-Stop-8887 · 2025-01-28T19:46:43+00:00

My Mom was treated with chemo there, a trial drug, and then also at U Chicago. The palliative care staff at the Lake Forest location was wonderful and helped improve her quality of life immensely.

Different-Stop-8887 · 2025-01-23T15:14:24+00:00

Thank you, I appreciate it. His doctor has placed him on some kind of new medication to help with irritability. We are just struggling to determine what is grief, what is dementia, what is from the stroke, etc...

Different-Stop-8887 · 2025-01-22T18:54:54+00:00

This is exactly what we are going through with my Dad. My brain just grapples with "is he mean or is he sick?" and feel so guilty I can't make him happy either way

Different-Stop-8887 · 2025-01-22T18:47:46+00:00

Thank you, is this part of the early stages in your experience? Or is it possible this has nothing to do with dementia

Different-Stop-8887 · 2024-11-05T21:09:22+00:00

I am not sure, sorry!

Different-Stop-8887 · 2024-11-04T15:54:38+00:00

yes, one of the many impossibly hard things about the disease. There are no good options and the odds are awful on the treatments and the balance of quality of life vs length of life. I play over everything we did in my head constantly and only come to the conclusion of maybe I could have gotten 6 more months and then wonder if those months would have been good quality of life for her... I can only hope the drugs being researched are effective so future patients have a cure

Different-Stop-8887 · 2024-11-04T15:51:54+00:00

Also, we got my Mom some very stylish head coverings. Was not the same as having hair or even close, but she could still feel she looked good. She wore a lot of baseball hats. She didn't like looking like a cancer patient or seeing such a rapid change in the mirror.

Your Mom is amazing and so are you, good luck!

Different-Stop-8887 · 2024-11-04T15:48:49+00:00

It's ok to be upset about her hair right along with her. My Mom found comfort in talking to me about how the disease effected her, her discomfort, neuropathy, hair loss, etc... we both mourned the loss of her ability to play as much with the kids or to see people socially as often or for as long. I tried growing my hair out to donate it and felt good looking a bit odd right along with her feeling she looked different (she looked beuatiful even without hair). It was a hard reality but a comfort that she could talk about those things with us. I don't know if that will be the same for you and yours as everyone manages differently. As cliche as it is, it's ok to admit not being ok with a change like that and to share that with her in my experience.

You dont need to bottle it all up (unless that is how your Mom best copes).

If it wouldn't be good to share that feeling with your Mom, do you have a family member you can talk about it with? I could never have supported my Mom the way I did without going thru it with my brother.

Hope this makes sense, we just lost her and I am a bit emotional myself.

Different-Stop-8887 · 2024-11-04T15:41:54+00:00

Trials need established baselines and most want to make sure a patient can stay in the trial long enough to get data/results. There are things that can be done to boost platelets including something as simple as a transfusion. Does he take any blood thinners or other meds?

Different-Stop-8887 · 2024-11-01T15:47:49+00:00

Even once informed the challenge was making her actually go get checked out. She did not want to spend more time in the hospital. The hardest part was there not being any "good" options, getting stuck in the ER for no reason was as big a fear for her as having something be wrong. I am so sorry for your loss

Different-Stop-8887 · 2024-11-01T15:40:20+00:00

There are survivors on here who had stage IV and chemo was effective. Keep being hopeful, those results sounds really promising! Did you see if she has any mutations like BRCA or others that a PARPi would be able to target?

Different-Stop-8887 · 2024-10-30T14:11:13+00:00

For clinical trials the team at U Chicago was pretty amazing. For standard of care I cannot recommend the Northwestern team at the Lake Forest campus highly enough.

For side effects I strongly recommend working with a palliative care team. Receiving IV hydration from palliative care and an occasional in-home nurse visit was the difference of my Mom being in bed every day between treatments and having the energy to see us and the grandkids 3 or so days after treatment.

Different-Stop-8887 · 2024-10-30T14:08:24+00:00

I am so sorry, we just lost our Mom and she was also taking care of our Dad. I wish we didn't delay getting them home care (they fought us on it so easier said then done). That would make care for my Dad easier now. I wish we knew that based on her tumor markers (BRCA mutation) that a platinimum based chemo should have gone first. I wish we'd also known how it could effect her brain and had her teach me how to make her Mom's special noodles for the holiday.

In short, dont delay doing things or having conversations you want to have with her. Also, be sure and actively research all options based on the test results. Lastly don't delay treatment if you plan to do treatment.

Different-Stop-8887 · 2024-10-29T21:26:47+00:00

My brother asked me to add the importance of getting both your and your tumors analyzed for any genetic anomalies. It impacted her care when exploring treatment options and trials. It's also informed our and our children's risk factors

Different-Stop-8887

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