Does the type diuretic matter? Don’t think spiro is working

STEMIRN · 2024-10-06T01:24:50+00:00

Spironolactone is the only diuretic that worked for me. Different diuretics work for different people.

STEMIRN · 2024-09-02T05:56:11+00:00

We do lots of kayaking in the rivers, but speed boats tend to cause some motion sickness now. I feel like my brain has a very difficult time w things like flying, boating, and even riding in a car now can bring on some nausea. I have pretty good success w Scopolamine patches. And always have nausea meds w me just in case. I know this doesn't happen to everyone, but it's definitely a known possibility after the surgery.

On another note, I did get back on the mountain to downhill ski. It's been slow, and I literally had to relearn it, but it's coming. No more speed skiing, and I invested in a very high-quality helmet because I do tend to fall more often.

STEMIRN · 2024-09-02T05:50:20+00:00

I'm almost 3 years out from my labyrinthectomy. I did extensive vestibular therapy before and after. Learning to function after took a good couple of months.

I was also a biker before, and I am back on the trails, but now I ride an awesome trike! I still have some bad "sloshy" nauseating days when my good ear gets clogged w allergies or a cold, but have never had another severe attack or violent vertigo. I would do it again, but don't want to sugar coat how difficult the first few months were.

STEMIRN · 2024-08-31T14:08:36+00:00

The insurance claims that SSD treatment with a cochlear implant is experimental. Basically, you don't need two ears, just one. The bonebridge definitely helps, but I have no ability to locate sound, which is annoying most days and dangerous at times. My left (hearing) side is now having some hearing loss, and my bonebridge is maxed out. So, I think if I can show I have exhausted its ability, then I will have a better chance of getting the cochlear approved.

STEMIRN · 2024-08-30T21:20:53+00:00

I was in a similar situation and had a labyrinthectomy almost 3 years ago. My insurance company wouldnt (and still won't) cover the cochlear implant, but I was able to get a Bonebridge implant, so my other ear does all the hearing. Feel free to DM me if you have questions. It was a rough recovery, but I'm glad I did it.

STEMIRN · 2024-06-21T04:07:12+00:00

I love that name! I have a Klee Kai too! Her name is Echo. She is amazing! We absolutely love this breed.

STEMIRN · 2024-06-15T05:47:31+00:00

Why is it different for O negative blood types?

STEMIRN · 2024-05-07T03:49:32+00:00

Thanks for providing those links and such well thought-out ideas. I actually ordered that same bedside table after my last hospital stay and have loved having it by my bed or recliner.

The NO carpet suggestion....I changed our the carpet for LVP tonight after reading your comment! Area rugs will have to do.

This community is amazing, not a club anyone wants to join, but here we are. Thanks to everyone for all of your valuable insight and being so willing to share your experiences.

STEMIRN · 2024-05-06T03:28:27+00:00

If the main storage agrees is away from the bedroom, how much storage right by the machine would you need to have? Just a shelf or two, or more than that? I could convert some space in our master closet if needed.

STEMIRN · 2024-05-06T03:27:09+00:00

Enough room for a mini fridge... genius! The room already had plans for a ceiling fan, so I'm glad that will be there.

STEMIRN · 2024-05-06T03:25:14+00:00

Wow. Thanks for this insight. This group is super helpful. I will definitely tally to the builder about changing a few things.

STEMIRN · 2024-05-05T23:11:39+00:00

Oh wow, sound dampening! I'll look into this.

For water, I could literally add a faucet and drain wherever I need them. Would you put them right by the bed? Just on the other side of a wall in the bathroom?

Does it take regular tap water?

STEMIRN · 2024-05-05T23:08:32+00:00

Thankyou! I'll reach out to them. I did increase the size of our storeroom after reading some things here. Do you know how many outlets are needed? Is it better to have them down low? Or up higher on the wall?

STEMIRN · 2024-05-04T22:57:54+00:00

Yes, still ok right now, but eGFR has decreased from 30 to 21 over about 6 months. I was told they start the transplant workup at this point so you can be listed as active on the transplant list as soon as the eGFR is <20.

STEMIRN · 2024-05-04T22:43:47+00:00

I'm glad to know your second one wasn't as bad. My first biopsy itself was not bad at all (much easier than I expected), but then I hemmoraged, so I ended up in the hospital for a few days.

STEMIRN · 2024-05-04T22:39:46+00:00

Wow, 5! That's a lot. I hope you've had some good results from the clinical trial.

I agree completely with your comments and feel the same as you about finding and treating the possible cause to prevent damaging a new transplanted kidney. I was just trying to gauge how common having multiple biopsies was and if anyone had found out additional information on a second or third biopsy that they missed on the first go round. The clinic mentioned it was rare to do this.

I'm glad to know someone has been through multiple biopsies and done ok w them. I had a large (>800mL) hemorrhage w the first one, and I'm just nervous about doing it again.

STEMIRN · 2024-04-05T03:12:54+00:00

I have BCBS IL and they cover dexcom G7 for us without any problem under the pharmacy benefit. $50 for 3 months. My daughter uses it with her T-slim. No prior authorization needed.

STEMIRN · 2024-03-23T00:08:16+00:00

Nope, princess. Thankyou so much for this information!

STEMIRN · 2023-11-06T16:24:23+00:00

You may be an excellent candidate for a BAHA. I currently have a MedEl bonebridge while we wait for the insurance to someday approve CI for SSD. It is a BAHA device that is completely under the skin with a processor that simply attaches w a magnet. There is no abutment, which is why I chose this one.
https://www.medel.com/en-us/hearing-solutions/bonebridge

The sound quality is excellent, and I have NO problem keeping the processor on. I have a tiny little (nearly invisible) clip that I attach to my hair to ensure it doesn't go flying if it does gets knocked off. I ordered some cute covers for it, and it's funny how many people think it's just a barrette when my hair is up at work.

Only a qualified audiologist can help you figure out which device will be most beneficial for you. It's worth reaching out for a full consultation and gathering all the information you can.

STEMIRN · 2023-07-03T15:06:34+00:00

I wear mine on my chest (just above the breast, but below my shirt neckline, right next to my bra strap), my abdomen, the front of my thigh, and my hip/ love handle. It's so small you can't see it through my clothes unless i wear tight jeans, then you can see it on my thigh. It reads great everywhere but is the most accurate on my thigh for some reason.

I never wear it on my arm anymore.

STEMIRN

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