Journal entry by Judith Young —
It’s been a long time since I have updated and I have had people reaching out asking how Amber is doing. I want to thank everyone for their concern! Amber is doing great!!!
A month ago she went to her GI in Maplewood to see if they could drain her pseudocyst but he determined it wasn’t quite safe yet. The wall of the cyst needs to be thicker.
Amber was having some residual symptoms that were concerning me and also my mom instincts were nagging at me that we needed to look into things a little more. So I did what any normal person would do and I turned to Doctor Google. I typed in “diabetes after pancreatic necrosis”. What came up was something a bit scary and unexpected. A new and rare category of diabetes called Type 3c. It is specific to those who have pancreatic loss due to disease, surgery or injury. What I researched after this was not google but what actual doctors and clinic trials were showing. To summarize:
1. It is vastly underdiagnosed.
2. They tend to be hard to manage clinically.
3. They have additional risks mostly due to the exocrine component (the lack of digestive enzymes.)
4. Most doctors don’t even know about it.
I texted Amber and said, “We’re going to Mayo.” She was resistant at first. She is feeling better and just wants to get her life back. But after we discussed it she agreed that it was a good idea.
Fast forward, to today. We met with an Endocrinologist. I was so eager to meet someone that knew what Type 3c was. But he told us that it wasn’t a commonly accepted term (even though Mayo has done research in it - confusing) and that Amber just has diabetes other than Type 1 or Type 2. As far as treatment goes, she falls more into the Type 1 category.
He is changing her treatment plan. He is backing off on her long acting insulin because she is having too many lows. Once they get her fasting blood glucose stable, then they will assess if she needs booster doses at meal times. She also has the option to switch to an insulin pump at anytime. He put the control in her hands. She got a bit overwhelmed after this appointment but later in the day we met with a diabetic Educator and that made her feel so much better.
Because of the uncertainty of her long term prognosis, the diabetes education, that she went through, was very limited. Now that we know that she is a diabetic, we started the education in earnest and she feels so much more prepared. One thing that really helped was that they were very focused on treating her diabetes so that she can live her life, not diabetes controlling her life.
Tomorrow we we meet with a dietician and we are going to try to get into the GI doc here. They had no appointments available until the day after Christmas. We trust her doctor in Maplewood but we want to make sure that all our basis are covered for both Endocrine (Insulin) and Exocrine (digestive enzymes) deficiency.
We we appreciate everyone’s support through all of this and can’t thank you enough!!
A month ago she went to her GI in Maplewood to see if they could drain her pseudocyst but he determined it wasn’t quite safe yet. The wall of the cyst needs to be thicker.
Amber was having some residual symptoms that were concerning me and also my mom instincts were nagging at me that we needed to look into things a little more. So I did what any normal person would do and I turned to Doctor Google. I typed in “diabetes after pancreatic necrosis”. What came up was something a bit scary and unexpected. A new and rare category of diabetes called Type 3c. It is specific to those who have pancreatic loss due to disease, surgery or injury. What I researched after this was not google but what actual doctors and clinic trials were showing. To summarize:
1. It is vastly underdiagnosed.
2. They tend to be hard to manage clinically.
3. They have additional risks mostly due to the exocrine component (the lack of digestive enzymes.)
4. Most doctors don’t even know about it.
I texted Amber and said, “We’re going to Mayo.” She was resistant at first. She is feeling better and just wants to get her life back. But after we discussed it she agreed that it was a good idea.
Fast forward, to today. We met with an Endocrinologist. I was so eager to meet someone that knew what Type 3c was. But he told us that it wasn’t a commonly accepted term (even though Mayo has done research in it - confusing) and that Amber just has diabetes other than Type 1 or Type 2. As far as treatment goes, she falls more into the Type 1 category.
He is changing her treatment plan. He is backing off on her long acting insulin because she is having too many lows. Once they get her fasting blood glucose stable, then they will assess if she needs booster doses at meal times. She also has the option to switch to an insulin pump at anytime. He put the control in her hands. She got a bit overwhelmed after this appointment but later in the day we met with a diabetic Educator and that made her feel so much better.
Because of the uncertainty of her long term prognosis, the diabetes education, that she went through, was very limited. Now that we know that she is a diabetic, we started the education in earnest and she feels so much more prepared. One thing that really helped was that they were very focused on treating her diabetes so that she can live her life, not diabetes controlling her life.
Tomorrow we we meet with a dietician and we are going to try to get into the GI doc here. They had no appointments available until the day after Christmas. We trust her doctor in Maplewood but we want to make sure that all our basis are covered for both Endocrine (Insulin) and Exocrine (digestive enzymes) deficiency.
We we appreciate everyone’s support through all of this and can’t thank you enough!!
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