muddybrooks

My experiences post total pancreatectomy.

Blog Week Day #2- The cost of living with a chronic illness.

 

I have to first state that I am BLESSED beyond all measure when it comes to the financial cost of my disease. I have EXCELLENT health insurance and have NEVER had to decide to either put food on the table or buy my meds!! There have been times before the ACA came into being that my insurance stopped covering me when I had reached a certain dollar amount determined by the guys and gals in the suits. Like when I went to refill a med on a Friday night after 6pm when the pharmacist announces to me with several strangers looking on that I no longer have coverage for the medication. It has been denied. I didn’t have the kind of money they wanted for just that one medication, so I left empty handed wondering how I was gonna make it thru the weekend without that med I had been taking  chronically and  had been covered for years. But I got through that episode. I’m lucky and privileged and I’m VERY thankful.

But there are other costs of living with a chronic illness besides financial. I have a couple of chronic illnesses that I deal with besides T1D and I have come to know frustration and disappointment intimately. I could fill an ocean with the tears I have shed trying to get through a night when symptoms flare. I have come to know loneliness on a level I never thought attainable. I’ve been in the hospital all alone trying to advocate for myself when no one will listen. But I chose not to dwell on the negative. I chose to focus on the blessings that I have received as a result of living with chronic illness.

I have tried to advocate for others whom may not have the health coverage I do. I call and write my congress people and senators and even the Governor to try to bring awareness to the unfair pricing that has taken over the insulin market. I participate in supply sharing groups to assist anyone who may need something that I have extra of. I try in my own little corner of the world to make a difference.

Like I stated yesterday, I have done things and met amazing individuals both in person and online that I never would have imagined doing but my T1D has brought these experiences into my life. So, for right now…today, I am thriving despite dealing with the inevitable anger and frustration that is all too common with any incurable chronic illness.

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8th Annual Diabetes Blog Week, Day #1

Today begins the 8th annual Diabetes Blog week. I have participated once before two years ago & I’m looking forward to participating again this year.

Here goes…

Many things have happened as a result of my surgical type one diagnosis, but not all of it has been negative. Does Diabetes SUCK????? ABSOLUTELY!!!! But I have experienced many positive outcomes as a result of my disease. I am more resilient than I ever would have believed!! I advocate for myself, not just medically, but in every facet of my life. But most especially I have become a traveler. Normally, my life is spent in the Boston area with a few excursions here and there to northern New England, but with this new diagnosis and way of life,  I have found a passion to increase awareness and try to teach anyone willing to listen the basic ins and outs of the many forms of diabetes.

As a result, I have had to increase my working knowledge of the disease in its many forms and to do this, I have traveled to a few INCREDIBLE conferences. My first after diagnosis was Friends For Life. If you haven’t been to this AMAZING conference, I would highly recommend you check it out!! It’s put on by the Children With Diabetes organization and they have tracks for both the children touched by diabetes, patients, as well as siblings and friends, and adults because children with diabetes grow up to be adults with diabetes. It was at this conference I came to know the feeling of being in a room with many people who “Get it”, that understand what it’s like to live with diabetes day in and day out. I’ve never felt so included by a group of people in my life. This NEVER would have happened without me living with D.

In 2015, a nursing friend and I traveled to New Orleans for the AADE , the American Association of Diabetes Educators conference. At first I was a little intimidated going to this conference because unlike my friend, I was not a Certified Diabetes Educator (CDE). I was just a plain ole Registered Nurse. But the conference had much to offer me in both my role as an RN and as a person with diabetes (PWD).

I guess what I’m trying to say without boring you to death with all the details of every conference I’ve attended is that I NEVER would have attended these amazing educational opportunities if I had not had my pancreas removed and became a PWD. I also have met some AMAZING  people since my diagnosis, both with and without diabetes and the people that live with this disease, both the patients as well as their loved ones, have taught me the most about how to live with the uncertainties of every day life with D. Nursing school and my career helped lay the foundation of the working knowledge of my disease. But the people I have met along the way have helped shape that foundation into a way of life that I consider to be successful for me.

I’m blessed in ways I never would have believed before my surgery & I’ve come to know that even though living with D SUCKS big time, there are many hidden blessings that come my way every day and I would do nothing to change that.

 

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The Holy Grail, so to speak.

I’m going to start with a disclaimer that I am not acting as a medical professional for the purpose of this blog although I am an RN. I’m not an expert on any one’s diabetes care but my own and the words contained in this blog come from personal experience and my own opinion only.

There, now that that’s out of the way…

I had a very exciting day last week where I was being considered as a subject for the next leg of the Bionic Pancreas clinical trails. The Bionic Pancreas (BP) is one of the few closed loop systems usually referred to as an Artificial Pancreas (AP), for lack of a better, more accurate word. This device is the result of a collaboration between Boston University and Dr Ed Damiano & Massachusetts General Hospital’s diabetes research and Dr Stephen Russell. What makes this AP different from the others is that ultimately it will be a bi-hormonal system, meaning it will administer both insulin and glucagon. Many scientists are looking for a more stable form of glucagon than the current standard that is only stable for 24 hours. It is rumored that a company in the United States has developed a form of glucagon that is equally as stable as insulin but is not available just yet.  They’re still working on it. Hopefully soon!!

I actually had the device IN MY HANDS!!!! I couldn’t believe I was about to use the bionic pancreas as it is now. But after an hour and a half of learning the intricacies  and how to use the device, all my hopes were dashed!!! The researcher frowned when I mentioned (AGAIN!!! As I had also mentioned in my initial email.) that I am a surgical type one. She then proceeded to tell me I was  not eligible to participate due to my not being a “pure” diabetic. WHAT???!!! Because I did not have autoimmune type one diabetes (T1D) (apparently referred to as pure diabetes) they declined my offer to participate.

I was devastated and found myself explaining to the researcher that although the origin of my T1D was not autoimmune, my lack of a pancreas made my diabetes behave identical to any one with an autoimmune T1D. She left the room to ask someone with a little more authority than herself in regards to the study but came back with the same, “I’m sorry but you’re ineligible.

I had held the Bionic Pancreas in my hands!!!!! This little unassuming device has the potential to change my diabetes life and the cognitive burden of dealing with diabetes decisions 24/7 but because I’m “unpure”, I’m not a candidate. I thanked her and let myself out trying to hold back tears. I don’t cry easily but I had assumed I would come home with my own loaner BP because I had explained my surgical status to the intake research assistant who did not say I was ineligible. I really believe in this developing technology and the Bionic Pancreas in particular, so I was devastated to find out I couldn’t participate.

I’ve been following the progress of the Bionic Pancreas since my surgery in 2013 and have always felt it would be the treatment of choice for me when it finally gains FDA approval and hits the market. ( Just a reminder, I had my pancreas removed in 2013 due to 27 years of chronic pancreatitis. I also had a failed auto-islet transplant which means they transplanted back into my body my own islet cells in the hopes I would not become a person with diabetes (PWD) On my return trip home I started to think that maybe because I was a surgical T1D, when it finally comes on the market, will I also be ineligible from using it because of my unpureness???? This was a disturbing thought to me. The Bionic Pancreas, to me, is like the Holy Grail. The research they are collecting points out that this little device made by BetaBionics (the new company started to eventually market the product) significantly improves blood glucose (BG) control as compared with usual care.

Luckily, Ed Damiano, CEO of BetaBionics and co-lead researcher from Boston University, was speaking locally the same week that I was turned down. I trekked on over to the venue to listen to him speak and  to ask him personally to think about including surgical T1D’s into the clinical trials.

As he presented a brief history of the BP and then showed us the new trial data, I was even more in love with this little box that hopefully one day will improve my brain space from having to make countless diabetes decisions in my day to day life!! After he was through presenting, there was the usual Q&A where I asked him about including us surgical, unpure PWD. He remarked that my visit just a few days prior and my trying to make a case to allow me to participate resulted in a flurry of emails between many of the researchers eventually making it to Dr Damiano”s and Dr Russell’s inboxes.

The result of all those emails is that from this point forward, surgical T1D’s WILL BE INCLUDED in further legs of the trials!!!!! WOO HOO!!!! Music to my ears!!!! However, I was still not going to be able to participate in the current study that started this last week. That’s OK though!!! A good friend of mine, Sarah MacLeod from the blog, “What Sarah Says” is participating and it would have been so cool if we could have done it together. But, I’m going to have to live vicariously through her as she goes on with the study. Also, at the most recent meet up of our Boston South Diabetes Sisters PODS group, I discovered that one of our attendees is also participating. This is so cool!! Although I’m not an active participant, I will be able to experience it through these women’s eyes & get their perspectives on the device.

If you know anyone with surgical diabetes, let her or him know that they CAN participate in these particular T1D BP trials, as can “pure”, autoimmune T1D people. Have you considered participating in any kind of medical research trials? What type? & what was your experience? I’m very interested in science and medicine in particular, so the thought of being included as a clinical research trial subject is very exciting. Stay tuned because this artificial pancreas (again not the most accurate word) area of study is booming especially with Medtronics soon releasing their 670G closed loop system. Anyone using it yet?? I’m interested in how that works too!!

 

Thank you for taking the time to read my post and HAPPY SPRING!!!!!

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Is it me??

I recently developed a relatively new pet peeve and I’m wondering what other PWD think about this…

 

Last week I was casually chatting with a friend about how I’d had a very low blood sugar that morning (31mg/dl) that was unexpected and I was still kind of in a light fog because of it. He asked me what it felt like. He seemed concerned about this hypoglycemic event and he is a healthcare worker, so I thought I would do a little “inservice” (the medical community uses the “inservice” to educate our peers on new equipment, meds, etc). I gave him a short list of what it could feel like to anyone and as I was explaining that each PWD has her/his own set of symptoms, he suddenly cut my “inservice” short, exclaiming, “that’s what happened to me this morning!”

OK. I didn’t know he had difficulty with his blood sugars regulating on their own, by way of his normal, completely functioning islet cells but maybe I didn’t know something about his current health situation. When I asked him what his symptoms were, he told me, “I got a bad headache when I skipped breakfast.” I inquired further and, no, nothing was wrong with his normal functioning islet cells. Maybe you were just hungry? He quickly replied, “No, I wasn’t hungry! I had a low blood sugar just like you described!” I asked him what he did to correct it and he calmly stated, “Oh, I just popped a couple of Advil and went about my day. But, boy, was I starving at lunch.” WHAT??!!

I calmed my racing, shocked pulse down and just decided to move the conversation along because I got the feeling this friend had no clue what a true hypoglycemic incident is about. I changed the subject and we got to the business of catching up. I decided the “inservice” would have been lost on this person anyway.

This is a first for me on this Type 1 journey. My inner circle of family and friends has been very supportive and frequently asks questions so they can better understand what’s going on with me, like I do with them when something’s going on with them that I don’t understand. It’s a normal give and take amongst friends & family. But this person is just outside of my inner circle, so I shouldn’t have been surprised when he really wasn’t concerned about me at all, just his headache’s cause (even though it was pretty obvious the missed meal was most likely the cause. But, in his defense, maybe his blood sugar was at the lower end of his normal glucose range.)

I’m still wondering why I was so amped up by his response. It seems to me that many PWD fear the low!!! And just “popping a few Advil”  wouldn’t correct a true low blood sugar. Maybe I’ve been in a little bubble where it’s been all about me as I navigate this new world?(I’m definitely learning it’s NOT all about me) I don’t know but I’m thinking that my fear of a low and this person’s delight in figuring out what caused his headache, shocked me.

When we were preparing to part ways, I mentioned to him that he should start carrying immediate glucose foods with him to combat the lows he might experience in the future.

How do you respond when someone seems uneducated on what you’re experiencing due to diabetes and compares it to something in her/his nondiabetic life?

 

Remember…CHECK. DON’T GUESS!!!

 

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I’m Angry!!!

I’m really angry with the fact that I have to deal with surgical T1D!!! But I feel I don’t have the right to be. After all, I chose this…well, sort of. I’m the one that decided to have the rest of my pancreas removed February 8,2013, after having had half of it removed January 31,1994 due to chronic pancreatitis. I knew diabetes, type one, was a real possibility, but I really didn’t think it would happen to me!! Seriously, I was having MY islet cells removed, before they threw away the rest of my pancreas, purified and then transplanted back into my right kidney where there is a large blood supply. There was no risk of rejection. So, surely, my islets would be happy there and continue to provide me with the insulin I would need for the rest of my life. Right? WRONG!!!

My transplant surgeon explained to me the usual scenario with the rates of T1D after pancreatectomy. One third of patients require no insulin and their islet cells take after transplantation and all is well with the world. Another third, some of the islets take and they only require a little bit of insulin. And, the last third, the islet transplantation fails and these people have to deal with what I was told is “brittle diabetes”, meaning wildly fluctuating blood sugars that are difficult to control. I truly never thought I would become part of the last third. I wholeheartedly believed my transplant would take. These are, after all, my own islet cells. What would make them fail??(I have to say though, that I don’t feel my diabetes is unmanageable! Is it difficult? Yes, but so is everyone else’s diabetes. I feel very fortunate to be managing my BG’s fairly well. I was so scared I’d be dealing with this unmanageable beast and I’d be riddled with complications in short order. This, thankfully is not the case!!)

Right after my surgery, in the surgical ICU, my islets seemed to be functioning beautifully but I was requiring a minimal amount of short acting insulin. OK. So, I would be one of those that had some success but would need a little bit of insulin. I could deal with that. A few days later, I developed a high fever that was sustained for a number of hours despite Tylenol. Immediately following the fever, I started to require large amounts of insulin with fluctuating BG’s. This can’t be happening, I thought!! Seriously, I was given a brief foray into partial success with the need for only small amounts of insulin, but now, a fever wiped out my islets!!! I couldn’t believe it. I had tasted success only to have it ripped away.

Boy was I angry!!! But, right away, I felt bad for being angry. I knew this was a possibility, yet I chose to have the surgery anyway. Who did I think I was being angry?? I was thinking about all those who had innocently acquired T1D through no fault of their own, especially the children, yet, I directly had a hand in my T1D and I had the gall to be angry? This is how I continue to feel. I don’t know if it’s right or wrong but I feel directly responsible for my diabetes, so I have no right to be angry.

I’m also angry with myself for not even considering the possibility that my islets would fail resulting in T1D. Maybe then I could have researched the whole thing and been prepared for what was to come. NOPE!!! I did NO research until after I was discharged home from the hospital, and then I couldn’t read enough about it!! I always feel guilty when I have these times of feeling angry about the whole diabetes thing.

Part of the reason I started this blog is because I feel I don’t “fit in” in the diabetes community because I didn’t get my diabetes from an autoimmune disease or through genetics. There are some things that are different about my T1D than the usual PWD. So far, I haven’t met, face-to-face, any other surgical T1D’s. Luckily, though, I have a group of us that communicate through Facebook. I don’t know what I would have done in the beginning if I didn’t have this community of people. We all have had the same surgery and find ourselves dealing with this “Daily Guessing Game” together. I would, however, like to connect with some other surgical diabetics that live in my area or here on Muddybrooks. People that have either had a pancreatectomy through a trauma or electively, like myself. We can learn a lot from each other. How do you feel about your diabetes??

Hope you’re having a great Wednesday and I apologize that this isn’t a “Wordless Wednesday” pictorial post. But I just had to get this off of my chest. Thanks for reading along!!

 

Remember, Check!! Don’t Guess!!

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