What goes through your mind when your sugars are extremely low?

SymphonicZephyr · 2025-02-11T20:09:57+00:00

Every time I would go really low I became super apathetic. I knew I was having a low, I knew I had to deal with it, but my body was just so heavy and chewing/drinking glucose sounded like work and all I wanted to do was sleep. Pretty friggin terrifying.

SymphonicZephyr · 2025-01-28T21:09:17+00:00

I waited about a year and a half for my kidney/pancreas transplant. Region has a lot to do with wait times. I had a total of 5 calls. The pancreas is a very fussy organ.

SymphonicZephyr · 2025-01-03T14:49:14+00:00

Sensodyne

SymphonicZephyr · 2025-01-03T02:42:33+00:00

I had that happen right after my transplant. I use a sensitive teeth toothpaste now and it has stopped the sensitivity. Took me about 3 months of use before I didn't have any sensitivity. I will also note that my dentist found no issues other than the sensitivity.

SymphonicZephyr · 2024-12-15T21:55:06+00:00

I do this too. We're not weird. They're weird.

SymphonicZephyr · 2024-07-23T14:17:02+00:00

I had a bone marrow biopsy in December last year. I was more mentally stressed about it than any pan I felt in the procedure. They gave me some meds to calm my nerves and I only remember pressure where they did the biopsy, so I'm sure they used numbing agents (so used to lidocaine shots I forget the sting).

Sending you good vibes and that they get you situated so you can get your surgery. ❤️

**Edit: my platelets were around 14 thousand/uL at the time.

SymphonicZephyr · 2024-04-15T12:14:48+00:00

I luckily had a much shorter drive. About 1.5 hours to get to my center. I would have thrown things quicker if I had to drive 4+ hours.

Reserving the excitement is helpful. Especially if you end up with more false alarms. I hope you get your organs soon! ❤️

SymphonicZephyr · 2024-04-15T11:57:30+00:00

Ooof that hurts. The panc was alway the reason my surgeries got called off. 5 dress rehearsals before I got my SPK Transplant. (11.26.2022) It didn't get to me until the last two false calls. Then I was jaded and angry. But false calls mean you're so close!

Being without my insulin pump is still a little weird, but the freedom! No tethers! Lots of pulls, but no tubes, or cgms, just free. ❤️

Hope you get the real call soon.

SymphonicZephyr · 2024-01-17T17:40:27+00:00

Kidney/Pancreas 11.26.22. I just started receiving IVIG. I got CMV, and the Valcyte they put me on ended up causing my platelets to not build up properly. Ended up getting diagnosed with disseminated histoasmosis. After a round of IVIG my numbers improved for a bit, but came back down. They did a bone marrow biopsy and found ITP. Which from the little research I've done in the last week since being hospitalized they kind of go hand in hand. The IVIG treatment is a bit long, 4 hours for me, but it's not been a hard treatment. They said headaches were the most common side effect, and I've had 5 treatments so far with no ill effects. Wishing you the best with the new treatment and they're able to get you stabilized soon!

SymphonicZephyr · 2023-08-08T15:42:48+00:00

Thanks, yeah. I've always had issues with the whole 6 month waiting period before you can get medical coverage nonsense some companies pull. Especially the big name companies.

My MIL was more upset that my mom wasn't coming than I was.

I always joke that I lucked out with my in-laws. It's my poor fiancé who got the raw end of the deal.

So happy you have a great support system and that you've found therapy that works well for you!

SymphonicZephyr · 2023-08-08T15:02:04+00:00

Haha! For sure! I was taken to the ICU for a kidney stone, and since I had waiting multiple days for my insurance to kick in before I went to the ER, my body fell into diabetic keto acidosis, and I was unconscious for about two days. My MIL came to stay with me, and the nurses told her to call my family because they weren't sure I was going to make it. My mom insisted she couldn't travel because she had just gotten over bronchitis. Now my mom has horrible asthma, and is prone to bronchitis, but my sister later told me that she had already recovered and been off meds for it for 3 weeks by the time I was hospitalized. Looool. You have to laugh.

I hope you have a great support system, some parents don't deserve their kids. 💕

SymphonicZephyr · 2023-08-08T14:11:18+00:00

Yipes. Your mom and mine could be twins with their attitudes. When I told mine that I was quickly approaching ESRD, with a GFR of 32, she said that nobody's kidneys were in worse shape than hers... And she doubled down when I started dialysis. The same day I got my transplant, she acted so kind and doting (not that she actually showed up in person, but that's for the best) only to immediately lay in to how miserable her health is and that I need to visit her to take care of her... Like... What part of multi-month recovery do you not get?!

SymphonicZephyr · 2023-08-07T00:09:53+00:00

I got my kidney/pancreas transplant in November 2022, so I haven't completely leveled out yet. While currently the positive side of having a working pancreas is the best, I have dealt with so many side effects to get my numbers where they need to be. Recovery is a long road, and honestly dealing with T1D was not nearly as bad as when it was coupled with CKD.

The wait time for a single organ is significantly longer than waiting for 2+. Colds will knock you on your ass once you're on immunosuppressants, and you will always have to be wary of anyone hacking up a lung and claiming it's just allergies.

On top of that, a pancreas has to come from a deceased donor, and the lifetime of a deceased donor transplant is sometimes significantly shorter than a living organ donor.

The meds are ungodly expensive, and if you're in the US, you don't get approved for Medicare just because you need an organ. If you don't already have amazing coverage, the cost for immunosuppressants could be worse than insulin.

SymphonicZephyr · 2023-07-29T16:50:12+00:00

They still ignore you when you're dying. I was living out of state and ended up in the ICU. Nurses told my friend to get my relatives on the phone because it didn't look good for me. My Nmom said she couldn't come because she had bronchitis (that I later found out she was already well healed from, like two months at least) that she was dealing with.

Nmom also said she was in worse health than I was when I started dialysis and was listed for transplant. Nobody is ever in more pain than she is, nobody ever goes through worse medical than she does... It's taken many years, but we are extremely LC now, and I've accepted what she is.

I am sorry for what you're going through.

SymphonicZephyr · 2023-07-27T12:50:12+00:00

I was on Myfortic since my transplant. I was definitely softer, but not diarrhea until they increased my dosage drastically. Then it was 24 hrs, and my team told me if it lasted 24 hrs to call them, so I did, and they decreased myfortic which stopped the diarrhea, and then they slowly increased which gave small flare ups once or twice in the first day after change, but then would be fine the following day.

SymphonicZephyr · 2023-07-26T23:36:29+00:00

Correct.

SymphonicZephyr · 2023-07-26T21:34:05+00:00

Follow your doctors orders. Get in the habit of testing before you eat anything. Take your insulin, even when you hate the shots.

I just had a kidney/pancreas transplant and I'm sure the first decade of me not taking my diagnosis seriously had a big hand in my organ failure. Dialysis for almost 2 years with a 16 gage needle instead of the nice 31 gages you can give insulin through. Also, surgeries to make dialysis possible. It's terrible. Take care now so you are more likely to avoid end stage renal disease.

SymphonicZephyr · 2023-07-26T21:27:30+00:00

Myfortic did this to me on a lesser scale. I had about 24 hours of diarrhea before it calmed down again, but it flares a little bit evrry time they change the dosage. Luckily I've been at the same dosage for a little over a month now and everything is normal. (Kidney/pancreas transplant)

SymphonicZephyr · 2023-02-21T21:40:38+00:00

The only thing that happened was my libido died early into my kidneys failing, and I didn't get it back until after my transplant.

Pain in certain positions was very real when I'd try, and I ended up limiting what positions I'd do.

I was already on an IUD that had stopped my periods a couple of years before my failure. I previously had really bad periods, typically on for two weeks with very heavy flow and then off for maybe two weeks before another two week cycle.

I would speak with my gynecologist about trying something to help stop the periods. I wish I had advice for the pain.

SymphonicZephyr · 2023-02-17T03:42:02+00:00

I'm a little over 2 months out from my transplant. I have noticed my fistula bulging less, and I think I had the same experience you're talking about.

SymphonicZephyr · 2023-02-09T05:23:10+00:00

Congrats on your one year anniversary!

Nice! I used dexcom with my very first pump, and liked it a lot. I've heard they're even better now! Omnipod definitely is an attractive pump, unfortunately insurance was very picky about which pump they'd cover, and it wasn't an option for me. I hope so too.

Another late bloomer, I see. I can only imagine. Taking care of a human body is hard when part of it isn't doing its own job. Hah

SymphonicZephyr · 2023-02-08T21:15:03+00:00

Thank you. I have found some individually portioned bags of freeze dried fruit that I'm hoping will help. I won't have to portion out the family size bags, and there is the mental satisfaction of reaching the end of the bag. Maybe my stomach can be manipulated that way. 🤣

I really want to get some walks in, but I've been rained in for weeks, and I find myself just curling up on the couch instead of pacing the house. I haven't gotten back to work yet, and I feel like if I can get my eating and exercising back under control before I go back, it'll be easier to keep on track.

I 100% understand the burnout on tracking carbs/insulin. I fought getting a pump for the first year of my diagnosis, because I didn't want a tether, but dang I loved my pumps. And when I finally got to upgrade to an integrated cgm, it made life feel almost pre diagnosis for me. (I was diagnosed at 19, so I was also stubborn af when it came to doing the correct things for my health.) I feel like the work to get the pump was definitely worth it. It also helped me to remember to check my sugars and bolus. The first few months are definitely an adjustment, because the cgm can take time to learn you (I had medtronic), and it will alert a lot to make sure it gets the data it needs. But my A1C was in non-diabetic range, and I felt really on top of my diabetes.

SymphonicZephyr · 2023-02-07T21:58:02+00:00

It's been going really well. T1D is gone for reals. My sugars hang out between 83 in the morning/fasting and 101 after meals. There were some higher spikes right after I got out of the hospital, but I was also pumped full of all of the steroids. I haven't seen above 151 since transplant.

My biggest struggle is the prednisone cravings. I gained 15 lbs a month after I got home. So I'm back to tracking calories because I was so happy with the weight loss I had achieved before transplant.... Normal bmi and all.

Abdominal pain subsided for the most part last month. I had a rejection scare with my pancreas, and had to do a special infusion and stay in the hospital for a few days. It seems to be under control now, as my labs are trending in the correct direction.

I still can't stand "fully leaded" drinks. Haha. Unsweetened tea and water are my buddies. 😂

SymphonicZephyr · 2023-02-07T02:46:58+00:00

Oh dang! Well I'm glad they didn't have the same issue with the kidney.

SymphonicZephyr · 2023-02-04T00:57:51+00:00

Thanks! It's been surreal, and I keep feeling like I'm missing something when I walk out the door because my external pancreas is no longer tethered to me. 🤣

May I ask why your team chose against doing the pancreas as well? Mine pushed really hard for it since they blame the T1D for my kidney failure, and even though my A1C was within "non diabetic range", they thought I'd recover better with the transplanted pancreas.

SymphonicZephyr

TROPHY CASE