3 things I wish I knew before _X_
Hindsight from patients and their loved ones

3b4x Archive

Infant not gaining weight

I wished I would have felt more confident trusting my intuition within the medical setting.
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Bi-lateral profalactic mastectomy and hysterectomy - BRCA1 +

Going through menopause prematurely is not a small side effect from the surgery. Having your body change so dramatically should be a serious consideration as to if prophylactic hysterectomy is a good fit for you at that point in your life. The body change, hot flashes, calcium issues etc are quality of life issues that need to be taken into account.

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Liver Disease

In November 2018 I wish I had had a looking glass into the future of what 2019 was going to hold for me/our family...but I didn’t. But had I, I would have sat for hours with Jolene during that last family gathering to reminisce and dream with her, hear how she felt about life, what was important to her and share what was important to me. But I didn’t have that opportunity...or didn’t take it because I didn’t know those would be the last days of celebrating family all together. There were signs...I just didn’t see them, or chose not to because life always goes on, right?

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Lung Cancer

Maybe this should be obvious but predisposition to certain cancers is hereditary. Knowing that my father's dad smoked and died young of lung cancer I could have supported him more in his efforts to stop smoking. I could have called him daily on any of the dozens of times he was trying to quit. I didn't and it still haunts me.

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Lung Infection

The patient will usually lose weight, as the food isn’t world class and nurses don’t help them with eating. Try to visit when food is being served, so you can help/encourage them to eat. Or bring in tastier meals if you’re allowed. Smuggle them in if not.

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Dementia End of Life

If the patient is discharged to a rehab facility, someone in hospital will be able to provide you with a list of choices with ratings. If a bed isn’t available at the facility that you prefer, the hospital may be able to keep the patient for a couple more days, in hopes that a bed opens up where you prefer. If the bed still isn’t free and they want to move the patient, you can contest it, and that may buy enough time for the bed to become available.

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Gallbladder Disease

Hygiene tips: Take nail clippers and an emery board for fingers and toes. Don’t expect the nurses will use them – keep the patient’s nails trimmed and smooth yourself. Ditto hand cream. I massaged it into my father-in-law’s hands every day. A nice neutral face moisturiser is great to pat gently onto the patient’s forehead and round the eyes. You can see facial skin drying out very fast in hospital. Avoid facial freshening sprays. They can feel overwhelming when you’re in a delicate state. Dry shampoo is fantastic for making a bed-bound patient feel a bit cleaner. But only use about half the normal amount and pick one that isn’t strongly scented. Ditto deodorants. Native makes excellent ones and you can just use a tiny bit to make the patient feel fresher – obviously check with the nursing staff first. (note from Janesi Comfort - this story caused us to partner with Meow Meow Tweet)

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Bladder Cancer

If someone asks you to promise you will keep them in their home think long and hard about the implications. Particularly with something slow like bladder cancer. I promised this and in hindsight wish we had discussed the logistics while she was in better health. After going through the end stages I wish we had access to better pain control. Also, we should have thought more about the effects on everyone involved including the care giving team.

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Pancreatic Cancer

When my mom received a late stage pancreatic cancer diagnosis, I knew next to nothing about caretaking for a loved one with a terminal disease, the specific needs of a cancer patient, or how to mentally prepare myself for the next few horrible years. Because I didn’t know to plan properly (is it ever possible to plan properly?), I took excellent care of my mother but had a pretty big nervous breakdown the year after she died because I hadn’t cared for myself during the year I was trying hard to keep her alive. Here are a few things I wish I knew at the time. 1) You’ll never make the right decisions. I tortured myself staying up all night too many nights researching how to cure pancreatic cancer, or at the very least stave it off. But it’s a relentless, aggressive cancer with a crushingly high fatality rate and all the chemo, radiation, and alternative health treatments in the world could’t stop it. In retrospect, would I have advocated that my mom treat it as aggressively? She wanted to, but the toll it took on her body and mind robbed her of a good quality of life for more than six months before she died. I would gently suggest to others in my position that you consider admitting that you’re not all powerful, cannot cure diseases with sheer will, and that no decision is the perfect one. Make a decision and don’t feel guilty about it — there is no winning this game. Kindness and love to yourself and your loved one is truly all that matters.

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Compartment Syndrome

Horrific ongoing pain in your shins might not be shin splints. I was advised by a friend who is a doc that my pain could be compartment syndrome but the ER doc who admitted me 1200 miles from home insisted it was just shin splints. I did not demand a pressure test until the next morning and by then nerve damage was done. My muscles were breaking down and the road forward became infinitely more rocky.

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Cirrhotic Liver Failure

Janesi Comfort was conceived during a hospitalization. I was longing for a way to provide comfort for my loved one. The thing about illness is that there are universal truths that bridge all patients but there are also an infinite amount of situational peculiarities that make each case unique. We started this forum to give both patients and their loved ones a place to share their earned knowledge. Some are large truths that apply universally and others will be very specific to certain ailments. We hope you can find a few nuggets of truth and also see that you are not alone regardless of how scary or manageable the road ahead may prove.
I will go first.
I wish I knew it could be a long long haul without reprieve. Jolene got sick one morning with a distended stomach and we went to the hospital. That morning I had no clue that both her ALT and AST liver numbers would come back exceedingly high and that we were going to be in a hospital for two straight months. As a spouse my first reaction to this was “What can I do to make her life here better” followed by "what do we do to get her out" and there was not an answer to either. I always thought she would be getting out soon and thus didn't prioritize the little things. In hind sight those little things could have really added up. I created Janesi Comfort after this experience to solve one of those little problems for others.

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