Pre-transplant I had controlled my type II diabetes for a little over 15 years without meds. The anti-rejection meds have changed all of that. I’ve been taking 12 units long lasting insulin at bedtime and 1 unit of short acting for every 10 carbs with meals. But I’ve been experiencing lots of very low glucose levels.
So he has decreased both by half. I’m also to decrease long lasting more every 5 days until I wake up with glucose between 100-150 (rather than 54-78). He said he thinks I’m either going to be on very low doses of both or be able to be pulled off one or both completely sometime this next year. Now there’s a goal I’d love to achieve!!! Wouldn’t it be great if I could manage my type II even with the transplant meds without insulin or any other ned? Who knows, but this is certainly moving in a direction I’d like to see it go!
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Jayhawker
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Does he feel that Bgs in the am at 78 are bad.... jeepers, I have that a lot. My A1c is 5.3 and has been for over two years. Maybe I can talk my doc into taking me down on my Lantus more..... I thought my am BGs were not good. I am never over 100.....
He definitely doesn’t want to see morning glucose lower than mid 80s. But he told me today he wants my morning glucose between 100-150. But I’ve been having a lot of low glucose meter warnings over night. Frankly, I’ve had to eat carbs before bed to try to minimize these. Not helping weight management! For ne, I feel poorly when my glucose falls much below 88. This makes it difficult to exercise…
As the CMV has calmed down and the T-LGL leukemia has calmed down it’s become easier to know what this low glucose issue causes as far as how I’m feeling. I think it may be the final piece of the puzzle to fall into place. I just think once we’ve got this consistently in a good range (no extreme lows), I’ll be fully recovered and in good shape. Then it will just be regular monitoring to keep an eye on everything.
Indeed. It's really cool how the sun, moon, and stars all falling into the place for you just as you're about to retire from the work world. Your new kidney match is an awesome match - I think you're going to go the distance. We all face issues as we age, we just have to work with and around them. As a wise 99 year old man told a group of us seniors..."Tell me who doesn't have health concerns! We just have to keep them in their place!"
I was diagnosed with Type 2 diabetes in February of 2015. I was transplanted in October of 2019. Prior to trx, I managed the diabetes with different oral meds. At trx, they put me on short acting and long acting insulin, and said I'd never go off it. I was livid about that as insulin had never been mentioned in all the evaluation process. I said I'm getting off the insulin, just watch me. Eventually, I had lots of low BG readings so they lowered my doses over the next year, eventually switching to Rybelsus. Unfortunately it made me nauseous after over a year on it, during which I lost about 60 pounds. My endocrinologist said if it weren't for the transplant meds, I wouldn't be diabetic anymore. I was switched to Tradjenta and Lantus until I was in the hospital in Feb of 2024. There they take you off all oral meds and use short acting insulin to control you BG. I never received ANY insulin the entire time I was admitted because my BG was always in the normal range, and I was just laying in bed! I tried walking to maintain no meds once I got home, and it worked as long as I was SUPER STRICT on my diet. But if I had any higher carb foods, it went up and didn't reset overnight, so I restarted the Tradjenta about a week later.
It's now three months later and I'm still insulin free. I currently have a hip injury that makes walking painful so I've gotten lax on that, but my fasting BG are generally in the 80's, right where they want them. Before meals vary between 110 and 130, depending on what I ate at my last meal and how much activity I've had. My last A1C (in March) was 6.8. My doc is fine with anything under 7.
So it IS possible to get off insulin after a transplant, but it takes a plan and lots of effort. Talk to your endocrinologist and see what you can work out. In my process, we played with the timing of the Lantus, moving it to earlier in the day before discontinuing it altogether. Best wishes!
Thanks for sharing my A1C is consistently 5.6 or lower these days. I’m hoping to get off the insulin but only time will tell. The ups and downs its been creating in my glucose levels do cause me not yo feel as well.
Thank you for bringing this issue to our attention. No one during my evaluation process has said I would have to be on insulin after trasplant. It is a question I will be asking the team and have a discussion around it. I have avoided insulin for 20 years of Type II. They did put me on it when I was in the hospital, and my BG was uncontrollably high the whole time. Next time I had to be in the hospital I refused to take insulin and insisted on my oral meds for diabetes. They finally agreed and I was much better controlled. So, this is something I do not want to go through "just because its what they do" after transplant.
This insulin situation is a work in progress with me right now. I expect it will be through the summer. But I will get this insulin management in check with as low doses of short acting and long lasting insulins as possible.
I’m not thrilled with this need to rely on insulin; however, if it is needed to protect my new kidney, I will embrace it. They tell us over and over again that a transplant isn’t a cure, it’s a treatment. Most treatments have side effects or complications that must be addressed. For those of us who were Type II diabetics pre transplant, it’s likely we’ll have glucose management issues related to the anti rejection meds post transplant. Unfortunately my days of Type II management without meds are behind me, at least while I’m taking these anti rejection meds.
But I have a working kidney!!!!! What a precious gift🙂
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