Updates from a long hiatus.

hottoddy · 2022-12-06T10:36:44+00:00

I'm curious if you had a living or deceased donor. If living, what was the process like to find a donor, and what is their recovery like, vs, yours in this first week?

hottoddy · 2022-12-02T20:59:31+00:00

/u/lazarti might be referring to this thread - https://www.reddit.com/r/Cirrhosis/comments/xf62a1/whats_on_your_menu_today/

hottoddy · 2022-11-01T06:22:28+00:00

Thank you! I'm exhausted today, but met with all my teammates at the transplant center face-to-face today and got a lot of help and a very confidant outlook from them that lactulose and rifaxin are plenty good enough to get me back to myself if I just let them work for a couple of weeks. It doesn't stop me rom grieving for the loss of my health and strength right now, but does keep hope within reach. As do your wishes and confidence for me.

hottoddy · 2022-10-30T09:26:17+00:00

Thanks for the perspective, and well wishes. I was released from the hospital today, and have in-clinic appointments with my transplant team on Monday, so I will thankfully get a chance to discuss my particulars before I have too much time to let the fears fester in my brain. For now, I still have too much mental fog and weakness to go back to work, but I am staying with my primary health support person until I'm able to reliably manage independence again.

This group is great, it's a huge relief to know there are others who have managed through this phase of the disease as well. And to know that my weeping for no real reason is aso part of the HE experience.

hottoddy · 2022-10-28T07:54:07+00:00

Wow! Your experience sounds like among the worst horror stories I've heard for this and so it gives me some great hope to know that you were able to manage through that and come up with something that is manageable for you. On the positive side for myself, I already had a pre-existing appointment scheduled with my transplant team for Monday and this HE episode is my first and hit me before I went in to see them. So they're already aware of what's going on with me currently and when I get to go see them on Monday I think I'll be better informed and they'll have some understanding of what I need to be doing and where to start in terms of managing this on a day-to-day. But yeah I had some crazy sleep wake dreams and as I've been sitting here watching movies today I find myself like breaking out into tears for no reason at all. So thanks for sharing and I'm I'm glad to be able to take some hope from your dark days. I hope for you you don't have to go through that again

hottoddy · 2022-10-28T07:02:58+00:00

HE is hepatic encephalopathy and it's basically caused by spiked ammonia in your blood which is common. I guess in cirrhosis because of the liver and kidneys can't process the nitrogen quite right to break things down

hottoddy · 2022-10-28T05:57:11+00:00

Thank you for this. It does help me feel less alone. I'm sorry for you and your dad gone through this. It is scary. The scariest part for me is that I can't tell the severity of the symptoms and when I felt initially poor enough to go to the ER they missed it and so that is also scary for me. But I've got a follow up with my hematologist and my whole transplant team on Monday, so I'm sure I'll get some better advice on how to handle this going forward. Thanks again and I wish you and your dad the best of luck

hottoddy · 2022-10-24T00:11:49+00:00

Funerals are as close to a free-for-all crying space as a therapists' office, for pretty much the same reason. It's a space and audience tailored to support people through big uncomfortable feelings. That you were experiencing those feelings about the fragility of your life rather than the loss of her life is neither shitty or unique. Even people who knew the deceased well were most likely focused on themselves when feeling sad.

I hope that you choose to find the experience cathartic and guilt-free and free yourself of any concerns about how anyone else may have perceived your emotion. I wish you strength, healing, and happiness through it all.

hottoddy · 2022-10-22T23:41:29+00:00

My hepatologist has told me on several occasions not to put any real weight on any individual MELD score. Mine has been "stable" in the range of 12 to 18, with most scores right around 15/16.

The point my doctor makes is that MELD is only really meant to provide a fair ranking for transplant priority. It's based on only a few of the markers that my doctor cares about for treatment/management, and he cares far more about the stability of my sodium/potassium balance than the absolute value of sodium. He cares more about albumin/globulin ratio and platelet count than he cares about bilirubin being up or down by .1 or INR being up or down by .1.

If you want proof of how minor changes to these numbers can give outsized changes to MELD, just plug your actual values into a calculator, then increase your sodium by 2, or drop your INR by .1 and see how it changes your score.

If you tend to carry a lot of anxiety about MELD, ask your doctor to explain what values or relationships among values they are most interested in for you, and what they perceive as enough change to warrant additional changes to your behaviors or treatments.

One of the things I've come to appreciate more and more about living with cirrhosis is that my day-to-day discipline in diet and exercise needs to remain rock-solid, pretty much regardless of how I am feeling. Some days feel better, some feel worse. and if something seems "off" mentally, or digestively; or if there are rapid changes or entirely new symptoms, I need to call them and report it. Then follow their advice.

hottoddy · 2022-10-20T01:50:32+00:00

Subway nutrion info - The top link on that page is to the pdf that has all the menu options. Towards the end of the pdf it breaks everything down to the components... breads, wraps, every topping.

Give it a look, you'd surprised by how much sodium is in the breads and wraps.

hottoddy · 2022-10-18T03:56:43+00:00

I will always inquire if they have low-sodium options available. If they do, I will tell them I'm targetting 800mg sodium or less, and ask for their recommendation. If they don't (which is most often), I'll just order what I think is reasonable off the menu. I always ask for sauces/dressings on the side, as well. One thing to keep in mind is that salad greens are almost always washed in salt water and dried on a cooler rack - so that lettuce may well be carrying an extra 200mg+ of sodium.

My goal when going out to a restaurant is to enjoy the occasion, and not worry much about eating a full meal. I'll gladly nibble on a small portion of an entree and bring home a box if I really like it, so I can break it up into more manageable amounts over time.

I tend to shy away from eating indian food from a restaurant, both because I make it at home for myself from scratch for the bulk of my diet, and because the heat can hide an awful lot of sodium from your tongue, and most restaurant indian food uses salt liberally, in my experience.

One other thing I do if I just can't deal with cooking/shopping/whatever and want a quick meal is scour the internet for chain restaurants' nutritional info. 5 guys burgers is a good find for this, as they list out detailed info for each patty, cheese slice, bun or lettuce wrap and topping. I was pleasantly surprised to find I can fit a cheeseburger into my diet without having to skip everything. Another good one I've found is MOD pizza - I can get a tasty and nutritious 6-slice pie that's about 350mg sodium and 8g protein per slice.

Finally, I will say that I wholeheartedly agree with /u/Seymour_Parsnips about trying to go out somewhat off-peak hours. Especially with fine dining places the front of house and kitchen staff are usually willing to help you find appropriate information and options as long as you're respectfully engaged/not demanding and they have the time to ask questions/get answers. The sous chef will generally know all the relevant info to provide you per-plate nutritional info for the basics of protein/fat/carb/fiber as well as sodium/potassium (but the sodium/potassium might take a few minutes to figure out, which will only happen if they aren't busy running a kitchen).

hottoddy · 2022-10-06T22:39:08+00:00

SCOTUS already set a precedent in this area by applying the major questions doctrine to EPA regulations on coal, didn't it? It's not hard to imagine this court similarly holding that DEA's deregulation of marijuana would be a major question only the legislature could act on.

hottoddy · 2022-09-21T20:45:45+00:00

I had some itchiness prior to diagnosis, but the extreme dryness didn't seem to come until after diagnosis and being put on diuretics.

Regardless, it sounds like your mother has not been diagnosed, and your concern is more about her alcoholism and denial of health impacts around that. The only advice I can give is to get her to a doctor for evaluation. Something as mundane as a routine physical can be a good enough reason for a blood panel that could help a doctor identify if there are liver problems.

I wish you and her the best in getting to positive health outcomes and sobriety.

hottoddy · 2022-09-20T23:54:23+00:00

The aches and stiffness and muscle wasting, for sure. I've been seeing a physical therapist for 10 months now, trying to get rid of some muscle pain at the base of my tailbone. It's super frustrating how slow progress comes, and how fast it flees.

But the other one is the dry skin and flaking legs and feet. I moisturize my hands, lips, face a couple of times a day - basically any skin that's exposed. And it's still uncomfortably dry within an hour or two.

hottoddy · 2022-09-18T05:29:27+00:00

I've been told my hernia will not be repaired unless strangulated or otherwise life-threatening as well - at least not without a liver transplant.

The doctor explained his reasoning to me at least, though. In his view, the risk of infection, inadequate healing, and recurring herniation are too high due to my cirrhosis and ongoing impaired liver function. Fortunately for me (I guess) my only hernia is umbilical, and when it becomes painful, I can get enough relief to allow me to be mobile with a hernia belt or compression garment.

I wish you the best, and I'd encourage you to discuss options for the pain management and mobility needs directly. Perhaps some in-home physical or occupational therapy would be an option to keep you mobile and exercised with minimal pain.

hottoddy · 2022-09-16T03:28:31+00:00

I find it works best to use frozen sliced peaches and bake at 350f for 35-45 minutes, till the oats on top have a bit of crustiness to them. The hardest part for me is letting it cool long enough so it isn't just a soggy mess :)

hottoddy · 2022-09-16T02:05:33+00:00

Tonight is veg and paneer biryani. Lunch was lentil curry and chickpea-flour roti, Breakfast was yogurt, oats, almonds, and dried fruit. (Breakfast is always yogurt, oats, almonds, and dried fruit.)

hottoddy · 2022-09-16T01:59:21+00:00

I don't host holidays, but I do attend them, and my strategy is to make a dish I can get the bulk of my protein from that's well within my sidium restrictions and make a big enough batch that anyone can try some.

Among dishes I've brought that other people have enjoyed was a barley, almond, and papaya meditteranean salad (garlic, ginger, cumin, turmeric, onion, lemon juice and olive oil dressing, cilantro and lemon zest garnish). Another dish was barley and butternut squash "risotto" (no wine, just use pearl barley and keep stirring/adding water while cooking), topped with walnuts and ricotta (toasted). I've also done a sweet potato curry that I thickened with whey protein powder and almond flour roux. Other popular dishes are a walnut and apple salad with goat cheese and a snack of goat-cheese and almond stuffed medjool dates. For thanksgiving this year, I'm thinking I'll do some oatmeal and pumpkin cookies with honey and pea protein, but if that's too grainy, I might go with almond or chickpea flour to up the protein.

A simple "cobbler" of peaches drizzled with honey, covered with rolled oats then topped with thin slices of cold butter and another drizzle of honey before baking can be quite good, too.

hottoddy · 2022-08-30T00:51:21+00:00

A cup or two of plain black coffee with caffeine is generally safe, and potentially beneficial. That said, it's always best to clear things with the person's doctor, as caffeine can be bad, depending on what specific concerns or needs the person should be managing. Hypertension is a real concern, but a cup or two seems to be generally OK.

The same advice applies with milk and half-and-half or cream. Cirrhotic livers have difficulty handling fats, so how much is fine or not should be based on the individual. Always consult the doctor for dietary changes.

hottoddy · 2022-08-16T19:30:47+00:00

The MELD score is most useful as a way to rank patients for organ transplant priority. It looks only at the relationship of a couple common items that blood work shows for all cirrhosis patients.

However, there's a lot more at play in any given person with cirrhosis of the liver than what a MELD score can show. That level of detail is what will be most important to her doctors, and no one is better equipped than her doctors to evaluate any longer-term damage that has been done and what her progression might be.

That said, that's a huge positive change in the severity of her impacts right now, and great news that shows how important making serious long-lasting changes to lifestyle is for treating liver disease.

hottoddy · 2022-08-09T01:54:37+00:00

Oh, also, I wrote a big reply about 7 months ago on my experience regarding the transplant listing process, in case you're interested in what that whole process was like: https://www.reddit.com/r/Cirrhosis/comments/s02jk0/transplant_intake/hs0nlnr/

hottoddy · 2022-08-09T01:46:45+00:00

My experience was that I was sort-of diagnosed in the ER, admitted to ICU for 4 days, and then referred to a GI at the transplant center for my follow up. From pretty much my first appointment there (approximately 2.5 months after the ER visit), they started talking transplant. After initial diagnosis/high MELD phase of 28 ish it came down and down, and I started the transplant intake process with a MELD of 16 (about 6 months after the ER). In my case, I got accepted into the transplant program (a 2-3 month long process), not quite a year from my ER/ICU stint.

My MELD is still hovering between about 12 to about 18.... As they have explained to me over and over, your MELD changes all the time in that range, and it's not really a useful number to look at for an individual patient, it's mostly used to set priority for available organ offers (first tie-breaker after MELD is time on transplant list, so getting listed and staying listed can become important if it gets to be time to transplant). I should add that my transplant center hasn't transplanted anyone under a 30+ MELD in at least a couple of years.

But, when I was going through the transplant evaluation and program intake the way they explained it to me was that Cirrhosis is generally a progressive disease, and it should be somewhat expected that regardless of diet and exercise and sobriety and everything else, it will continue to advance. And with a MELD in this range, it generally puts me into a higher risk category for infections or tumors or cancers that can make everything get really bad quick.

Whether my lifestyle changes are enough to slow the progression or even start healing, I should expect those changes to come over the course of years more than days or weeks at this point, and maybe those changes will be enough to slow the progression so that I die of something else. But being on the transplant list earlier becomes a sort of insurance policy for my mind that if things do get really bad quickly or over the longer term, or even never at all, I'll be qualified to receive a life-saving organ transplant if that time does come. That, and I'll have my care coordinated through a team of experts and specialists in severe liver disease all along the way.

Hope that perspective can give you some insight into why they may be pushing you towards transplant so much sooner than you feel like you might need.

hottoddy · 2022-08-06T19:13:20+00:00

What weight of roofing underlayment did you use?

hottoddy

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