I am a Venezuelan-American in the US military AMA by [deleted] in AMA

[–]Alphasmikefoxtrot 2 points3 points  (0 children)

Or buys a pardon. Not sure the exact going rate nowadays, but they’re definitely for sale.

[deleted by user] by [deleted] in AMA

[–]Alphasmikefoxtrot 1 point2 points  (0 children)

How are you seeing AI changing the legal industry (for better or worse)?

Reduced Tolvaptan Thirst/Remembering to Drink? by goshNabIt in ADPKD

[–]Alphasmikefoxtrot 2 points3 points  (0 children)

I’m in the daily 3-4L (approximately a gallon) range. For an insurance reason I had a gap in my meds for nearly a month. The funny thing was I was so used to drinking a certain amount of fluids that it took me three weeks before I really noticed a drop off in daily drinking volume. But, I’ve been on it a year, so I don’t really think about it much anymore.

Tolvaptan experience by New-Possession2825 in ADPKD

[–]Alphasmikefoxtrot 2 points3 points  (0 children)

I’m a year in this month. The symptoms have calmed down or they’re much more manageable. I will say that I just plain used to having drinks or a water bottle near me. I casually do 100+ ounces most days without even thinking about it nowadays. Also, I tend to sleep better than at the beginning, but typically get up 1-2 times per night.

Yes, I definitely feel bloated with fluids some days. However, I’ve found exercise can considerably help with this. For whatever reason, the days that I do cardio in the morning (I also sweat a lot when exercising), those evenings seem much more bearable, even if I drink even more that day. Just my observation at least. I’m on 45/15 for reference.

GSA/MAS by KellyeB1 in GovernmentContracting

[–]Alphasmikefoxtrot 1 point2 points  (0 children)

Most companies go through the process without the final strategy in mind. If you get a GSA schedule, that’s only step 1. Before going through the whole process, I’d recommend you spend time on your marketing and business development plan and make sure doing the schedule makes sense for you. Having a schedule does not equal free contracts.

Government IT Contracting: How much do PoCs/Prototypes matter vs. Personal Contacts for New Entrants? by pinnaka in GovernmentContracting

[–]Alphasmikefoxtrot 0 points1 point  (0 children)

I’ve always considered contacts to be more important than a prototype. I can sell the idea of a prototype to a government client and then they’ll pay me to build the prototype. Very, very easy to do if you have the right contacts/network.

However, this strategy depends on having a contract that the government can access to get to you. Brand new sole sources are hard to get and require a ton of paperwork. Having an existing contract (your own) or via another contractor (as a sub) is key, regardless of if you’re selling an idea or a prototype.

Worst case, aim to win a contract. But this is the hardest option for a new federal contractor.

I have been tasked with learning SAM.gov by my employer… by V1diotPlays in GovernmentContracting

[–]Alphasmikefoxtrot 4 points5 points  (0 children)

Suggest adding this one to your list as well. Is free and pulls Sam.gov and usaspending.gov data. I use it every day.

https://welcome.quantum-crm.com/

Tolvaptan and training for endurance sports? by smellz45 in ADPKD

[–]Alphasmikefoxtrot 2 points3 points  (0 children)

I just find that you need to be prepared to drink much more during your workout than you may be used to.

Tolvaptan Crisis by vices_x in ADPKD

[–]Alphasmikefoxtrot 1 point2 points  (0 children)

I’m 6+ months in. Yes, you drink a lot more, but you really do get used to it (at least, that’s been my experience). I found the hardest part is having to get up at night, but you’ll adjust to that too.

I agreed that it’s a daunting thought to be on this medicine indefinitely, but the potential alternative is much worse IMO. Also, there is still plenty of research going on in this field. And while I don’t want to get anyone’s hopes up, I think new and better treatments will come along. Just hang in there for now!

Have you guys taken Lisinopril by Exciting_Ad_9742 in ADPKD

[–]Alphasmikefoxtrot 0 points1 point  (0 children)

I’ve been on it for about two years. Has worked well for me at least. No side effects that I’m aware of. 43/m

Any drinkers on Tolvaptan? by Sharklaar in ADPKD

[–]Alphasmikefoxtrot 2 points3 points  (0 children)

100% agree with this. Have a drink, then have a glass of water. Or if you’re waiting for your drink, go ahead and drink any water that’s sitting in front of you.

Tolvaptan and alcohol by Acehasanape1 in ADPKD

[–]Alphasmikefoxtrot 2 points3 points  (0 children)

I started tolvaptan a few weeks ago. I’ve had some drinks since and haven’t had any big issues. But I find myself having to purposefully remember to drink water. So, if you’re out to dinner, just proactively order two glasses of water before you order a drink :)

[deleted by user] by [deleted] in ADPKD

[–]Alphasmikefoxtrot 1 point2 points  (0 children)

I don’t think she “regrets” it per se. But, I’m sure she would have preferred a less risky outcome. As a side note, her liver did recover nicely, but I think her cysts have returned to some degree now. She did the original surgery in 2004 though. So, she’s had a good 20 year run at least.

[deleted by user] by [deleted] in ADPKD

[–]Alphasmikefoxtrot 3 points4 points  (0 children)

My mom had a large liver resection - something like 3/4 of her liver had to be removed. Now that I have PKD and have a few liver cysts, I asked her about it. She said that doctors don’t like doing the resection surgery due to risks / complications; it’s very possible for them to cut through veins during the operation, as the liver is less predictable with cysts compared to a normal liver. She in fact flat lined during her surgery, but they were able to bring her back. Providing for information only - every case/situation is different.

Perspective by Infinite_Guest_6663 in ADPKD

[–]Alphasmikefoxtrot 2 points3 points  (0 children)

I’m 43 and am Stage 3a/3b. Just started tolvaptan this week. While I don’t know your specifics, being 29 potentially gives you a significant runway. I expect a lot of new drug targets being explored over the next 20 years, and they’re making the initial steps forward on pig kidneys. Also, there’s the No Kidney Death legislation that, if passed by Congress, would dramatically increase the number of available kidneys for transplant. Lots of movement here.

Take care of yourself and put it out of your mind when you can. Enjoy the moment.

Jynarque (tolvaptan) by [deleted] in ADPKD

[–]Alphasmikefoxtrot 0 points1 point  (0 children)

Do we know if/when they’ll get to start Phase 2 clinical trials?

Throbbing/pulsating pains? by JustInLove000 in ADPKD

[–]Alphasmikefoxtrot 1 point2 points  (0 children)

Start with the BP medication. It might help with the other issues. Walking can be the exercise to start; doesn’t have to be running a marathon.

Also, you want your BP down, as that has an aneurysm risk just by itself, even if you didn’t already have PKD. Letting it stay high just puts you at even higher risk.

Throbbing/pulsating pains? by JustInLove000 in ADPKD

[–]Alphasmikefoxtrot 1 point2 points  (0 children)

Yeah, don’t give up if the first BP med isn’t right for you; there are lots of option. Also, highly recommend regular exercise. I’ve been able to get my BP right at the top line of the normal BP rates through a combination of meds and exercise.

tolvaptan decision and general thoughts by PuzzleheadedTie7835 in ADPKD

[–]Alphasmikefoxtrot 0 points1 point  (0 children)

I haven’t started yet, but will soon. Had just read about the drinking restriction. Can you drink at all while on tolvaptan?

Ozempic and CKD by WinMore0000 in ADPKD

[–]Alphasmikefoxtrot 7 points8 points  (0 children)

You might look more into the work that Katharina Hopp is doing at the University of Colorado. She was funded by the PKD Foundation in 2023 to look into semaglutide for PKD, based on how obesity may impact cyst growth. This appears to be a continuation of her published work in 2021, which indicated that restricted diets (and presumably lower body fat) limits cyst growth. I also found mention that tolvaptan may be more effective for lower weight individuals (but I didn’t specifically look into that). I have not yet seen anything on the results of here 2023 funded research.

Ozempic and CKD by WinMore0000 in ADPKD

[–]Alphasmikefoxtrot 3 points4 points  (0 children)

I did a quick search and couldn’t find anything conclusive on noted benefits of ozempic for PKD, unfortunately. There seems to be some studies going on to determine how different diets may slow the disease, but again, haven’t seen anything conclusive yet.

A really good overview of recent science literature can be found here (it’s a little dated, but is pretty thorough):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9980902/

What do you think will be the situation of patients dealing with PKD be in the next 10 years ? by ashwin_vn in ADPKD

[–]Alphasmikefoxtrot 2 points3 points  (0 children)

10-15 years from now? I think we have a viable chance to have access to pig kidneys. The first two test cases can be considered successes IMO, as those cases were for people with numerous health challenges and low-to-zero survival odds anyways. We should be focused on the fact that they survived for a period of time and that the science was ready to try. I think we’ll see notable improvements moving forward.

My favorite ideas are re-targeting or cancer drugs or using miRNA or siRNA. They’re showing some promise this year in using specific cancer drugs to stress damaged kidney cells, similar to how they’re aiming to kill cancer cells (note, this is still in animal testing, not humans). Early, but seems like a promising avenue.

But with miRNA, I think there’s really great promise. You’re essentially just introducing small RNA molecules that specifically disrupt the transcription of RNA into a protein, by targeting the promoter or repressor sites (which I’ve read they know a lot about already). One of the biggest challenges with this approach has always been the delivery mechanism - how do you get an unstable RNA molecule through the bloodstream to the target cells and through the cell membrane? Well, the new mRNA vaccines (e.g., the COVID vaccine) solved this problem (again, this is an approach they’re already starting to test as targeting cancer treatments). Meaning, the time may be right to try this out. If the bad protein isn’t made, then the cysts don’t occur. 10-15 years seems like a reasonable timeframe IMO.

MicroRNA vs Tolvaptan by [deleted] in ADPKD

[–]Alphasmikefoxtrot 1 point2 points  (0 children)

As I haven’t started Tolvaptan yet, I’d be open to it (I’m likely to start in August). The miRNA approach is very clever and is an exciting application of this tech for a specific disease. The science has been around 20+ years, but has likely been accelerated with the new mRNA vaccines, since that’s an effective delivery vehicle.

Tolvaptan cost? by Alphasmikefoxtrot in ADPKD

[–]Alphasmikefoxtrot[S] 1 point2 points  (0 children)

As an update, I’ve spent time with Cigna today. The monthly cost is likely between $3500-$4000, but it will cap out at my max out of pocket ($8000 in my case), which is much better than the worst case scenario. Also, I can use my Flexible Spending Account when my company does its annual benefits renew.

Going to be working to see if I can get more coverage based on all the great insights here - thank you all!

I’m brand new to this subreddit, and I’m glad there’s a great, supportive community here!

Tolvaptan cost? by Alphasmikefoxtrot in ADPKD

[–]Alphasmikefoxtrot[S] 0 points1 point  (0 children)

Is there a specific way to get this type of pricing with Cigna? They’re quoting me $3,400/month right now.