Kidney/Pancreas
When did you give your your diabetes supplies?
January 19, 2023
in Kidney/Pancreas
I am almost 6 months post KP transplant. I have continued to wear my continuous glucose monitor the whole time, due to the earl rejection and blood clot, that I found because I was wearing the CGM. Now, I am almost 6 months post op, and my care team is saying I can give them up. Donate the insulin to someone who will use it vs leave it in my fridge to go to waste, and stop wearing the CGM after my 6 month visit as long as my A1C is still low, which it should be based on CGM data. I am struggling giving it up. It’s been a part of me for so long. It does not define me, but it has been a part of me. When did you give up your supplies, or “crutch”? I still will check my A1C every 3 months.
1 - 7 of 7 Other Answers
@Karin Do you have any advice here? This is a great question @TServold While I didn't have diabetes, so I'm under-informed on this topic, I know what it feels like to feel like you're getting rid of your "safety net". I'd suggest going slow, letting your mind and body adapt. Can you wear the CGM a little less frequently, rather than taking it off for good? It might help to teach your nervous system that you can begin to feel safe without it.
I remember being in an emergency room and terrified to leave because then I wouldn't have immediate access to care and I was really scared of the mystery illness that was happening in my body (it turned out to be parasites from taking my kids to the local pool). They gave me the meds and I got better, but I definitely understand the health anxiety!
Let us know if there's more ways we can support you during this transition.☺️
Transplant Patient
I didn’t have diabetes but I was transplanted for Glycogen Storage Disease, which affects blood sugar as well. I was 3 months (I think) post transplant when they removed my feeding tube, which I’d had since birth and was essentially what delivered the life saving medication that kept me alive and my blood sugars from crashing. I was still hesitant, but my doctor made that final decision. There hasn’t been any reason since why I would have needed it, though the mental aspect is definitely still there 2.5 years later of what if…
i still have the rest of my stuff. I have no reason to still have it, but I just haven’t gotten rid of it and don’t know when I will. I don’t wear a CGM anymore but still have supplies and a manual glucomètre “just in case” as well as all my backup supplies in case I went low. They won’t give me new stuff now, obviously, and some of what I had did expire and I had to get rid of it when it was no longer safe to use.
maybe switching from a CGM to a regular monitor could be helpful, and then weaning off it for regular use? Obviously don’t use expired supplies but I don’t see issues with having it on hand just to have it for a while, especially if it’s a comfort thing
These are both great suggestions!! thank you! I didn't wear my CGM this weekend. It went.... okay. I swear I had phantom pains near my transplanted pancreas. I would feel something and check my blood sugar, it was always perfect. I even went and had labs drawn, just to be sure the pancreatic enzymes were normal; they were. Just learning my new "normal", I guess.
Transplant Patient
Hi - I stopped using any kind of Cgm or smbg immediately following my pancreas transplant… I just stopped and have so far not gone back. My A1c is around 4.8 13 years after my transplant and I truly hope it continues this way!
Transplant Patient
phantom pains are real! I still get them every once in a while and its so weird. It does take quite a long time (I've found) to adjust to that new normal. Baby steps all the way!
@TServold way to go! It may feel scary at first, but the way I like to view it is that this is an invitation from my body to get to know her and love her on an even deeper level. Proving to your body that you are safe over and over again will help heal the traumas you’ve experienced. Check out the book The Body Keeps the Score. Also, to @AliEm14 point, pain and “phantom” sensations are real if you experience them. But just because you feel them doesn’t mean something has gone wrong (remember you checked with labs and your body was safe and pancreas functioning well). You’ve got this. And we’re here to support you!
@Karin wow!!! I hope that I can get a 4.8 a1c!! that is so inspirational. LOVE LOVE LOVE it!
@AliEm14 Thank you for sharing that phantom pains are real. I was so stressed out about any little pain, I know my care team told me that pains and minor discomforts are normal as they were before, and will still occur, but EXTREME pain is what is concerning. Just have to remind myself of all these things.
@Shelbycreates thank you for the book recommendation. I have ordered it and the workbook. Looking forward to jumping into it when it arrives.
Thanks everyone for the support! I hope I can be as supportive and knowledgeable as all of you one day, and not be the one asking ALL the questions.