So I have been waiting a while to post this. I had so much to get caught up on with this blog journaling that a couple weeks have passed since the day our world was turned upside down. This is a long one so be prepared.
So Allie has been planning on going on a mission for our church for several years now. She was so ready to go when she graduated from high School I wish we could have sent her then. Waiting for this past year has been hard. At least the church lowered the age for girls to go serve to 19 now instead of 21. The odds of getting women out in the field are much higher now because they don't have to wait so long.
Anyways so we have been working on getting all her papers filled out online and getting all her doctors, dentist, wisdom teeth etc scheduled so we could get her papers turned in. At the beginning of the month we got her dentist taken care of. Found out we had to get hers and Austins Wisdom teeth removed so we set up an appnt for that during her Spring break which ran from March 7th-11th. we had her Doctors appnt for her missionary physical scheduled for Monday the 7th and her consult for her wisdom teeth on Tues with the surgery to follow later in the week. This was the week she had to get everything done since she didn't have school or work. We were planning on handing her papers in that Sunday. She was so super excited. We figured we would have her call by April sometime.
So Monday the 7th came We went to her Doctor appnt. We had a few concerns we wanted to discuss with the doctor and made sure they gotten taken care of before she got out on her mission. One of them being super painful periods her first day or two of her cycle. Second was a little anxiety about her mission and missing home and the fear of getting sick and being sent home, and also she was eating and drinking a ton over the past couple of months and had actually started to loose a couple of pounds which had me a little worried. She has always had a fast metabolism like Steve and very skinny like Steve. Both her and Austin has gotten that from him. Lucky ducks. So she has always been able to put alot of food away, and eat constantly. I would just look at her and think where in the crap is she putting all that in such a skinny little body. I have to admit I was jealous. I have been working my butt off to loose weight and it is such a battle and then there is Steve, Austin and Allie who can eat whatever they want whenever they want and don't have to worry at all about gaining weight. In fact they have to worry about gaining weight. So not fair.
However recently since Allie has started College and working 2 jobs it has seemed to me it was getting worse. I figured it was just do to her crazy hours at work and school that she was just eating whenever she could and drinking alot now. I was noticing she was getting up a couple times at night to go to the bathroom as well and was getting on her case that it was no wonder she wasn't sleeping well at night because she kept having to get up and pee and that if she would quit drinking so much water before bed she wouldn't have to get up and pee all night. A few weeks ago she was complaining about having headaches everyday and not knowing why and that she thought her vision might be getting worse which I thought could have something to do with the headaches so we did schedule her to go to the eye doc to get her contacts updated and ordered before her mission. But when she said she had lost a couple pounds that is when I started thinking maybe something was going on and not quite right. I Even had made a comment a couple weeks prior to Steve when I mentioned how much she was eating and drinking that maybe she had diabetes but he just blew it off and said no its just her metabolism.
So as we discussed this stuff with the doctor she decided that since we did have family members with diabetes that she would do some blood work and also a urine test to check a few different things just to make sure and rule things out before she goes on the mission. There has not been any history of diabetes on either sides of our family until Rich Steve's brother got it while on his mission at 19-20. It was crazy that he had gotten it. And now his daughter my niece was diagnosed with it as well at age 13, 3 years ago. We knew there was a good chance that his kids might get it since rich had it. But I never would have thought that any of my kids would ever get it..
As we were in the lab getting Allies blood drawn I saw the doctor come to the door and she called me out in the hall. She showed me Allie's urine results which had a bunch of plus signs next to the glucose level. My world kinda crashed in right there. I was like oh no I cant believe this but on the other hand it made sense for the symptoms she was having. I was hoping it wasn't true. The doctor said do you want to tell her or do you want me to. I told her I would tell her. She told me she didn't want her to freak out We will need to wait and see what the blood work shows and what type she is. then she sent us home which was the wrong thing to do, and the first of many big mistakes made through the day. Our day from here on out was a nightmare.
As I went back into the room with Allie while they finished drawing her blood I tried to stay as calm as possible and not let on anything was wrong. She looked at me and I think I was doing a fairly good job at it despite my insides screaming. Steve was also out of town for work at a big teaching thing where he was being evaluated and having meetings with his boss so I knew he was not going to be able to be reached for a while. We got out to the car and I proceeded to tell her the bad news that she had diabetes. That they had found alot of glucose in her urine. Of course we both fell apart and was crying. She was pretty devastated of course. She was now freaking out that she wouldn't be able to go on her mission it was super hard and I didn't know how to comfort her. I felt helpless. I tried calling Steve and of course no answer. I immediately thought to go to Kim and Rich's house because if anyone could comfort her and help her it would be them with Rich and Sara having the disease as well. It just happened that Rich Stayed home from work this day for unknown reasons and now we knew why.
I pulled in and they happened to be outside in the front. I got out of the car and I sure they sensed something was wrong. I asked if they could talk to Allie that she had just been diagnosed with diabetes and she wasn't doing so well. They both gave her hugs and brought us inside to talk. rich was quite upset that the doctor upon finding out she had glucose in the urine why they didn't do the finger poke right then and see what her blood glucose level was. So he went and poked her with his meter and she didn't even register on his meter which meant her levels were somewhere above 500. Normal blood glucose levels are between 70-120 He then had her do a urine keytone test which showed she had a small amount of keytones in her urine. If you get high levels of keytones in your urine you can get Ketoacidosis which is serious and can be life threatening and your organs can start to shut down.
Rich felt that the doctors should have sent her immediately to the hospital to have her tested and start getting her BG's under control. He advised we take her to the hospital. By now we were both freaking out a little more and getting nervous. I was trying to make calls to our insurance to see what hospitals were covered and where some good Endocrinologist were. I decided I would go back down to the doctors office and see who they would recommend going and seeing and what hospital to take her to. Before we left Rich had called his dad and Gave Allie a beautiful blessing. It's amazing what the power of the priesthood and a blessing can do. My whole body was shaking inside and I was crying and through the blessing I felt this feeling of peace is the only way I can describe it start at the top of my head and wash down my body and out through my feet. I immediately stopped crying, my body stopped shaking and I just felt a peace come unto my soul. I have never felt anything like that before. Even though the blessing wasn't for me it sure helped me. I remember the words coming to my mind as I started to feel this peace that everything was going to be ok. It truly helped me keep it together.
We ran home where my mom was waiting. I had called her to come stay at the house because I had the home builder there doing work and a guy there fixing my piano. We grabbed something to eat real quick and packed Allie a bag not knowing how long she would be staying in the hospital. I called Steve again getting voicemail and left a message then texted him to call me ASAP that it was a 911. Shortly later he called. I told him Allie had been diagnosed with diabetes and what all had transpired up until then. He was shocked. He immediately told me he was going to come home and catch the next flight out of there which took a huge weight off my shoulders as he said the words. He agreed with Rich that she should have been admitted to the hospital and told me he was going to make some calls and find out who the best Endo in the area was and get an appnt with him.
You know its ironic that here is my husband who works in the diabetes business with Novo Nordisk who is the #1 company for insulin's and pens etc. I hear him talk all the time through conference calls, to reps, to fellow employees all the time about this disease and about insulins ect and yet I knew absolutely nothing about the disease. When it doesn't pertain to you, you just tune it out. We of course have seen some not so good experiences with Rich battling it and what happens when you get low and what signs to look for and have seen and heard him having seizures and vomiting and doing crazy things due to being low and that seriously freaked us out now knowing we were going to be having to deal with this now. We were totally scared.
I was relieved knowing that my husband was going to be coming home and that he would take care of her and monitor her closely and knew exactly what to do to help her. Had it been just me this week I think I would have been a basket case. So we went back to the doctors and they did another finger poke to check her BG and it registered at 490 or close around there. The doctors MA's said I didn't need to take her to the hospital that they could take care of everything through their office that they had insulins and all the stuff she would need and they wanted me to take her home and wait for the blood work to come back. I was not happy about this. I said does the doctor specialize in diabetes. They said no but she had all the stuff to take care of everything, but if I felt I needed to take her to the hospital then I could go ahead. Damn right I was going to go ahead.
After leaving the office I got a call from their office the MA telling me that the doctor had wanted to talk to me and that she would be calling me as soon as she got out with the patient she was with. She did and apologized for what the MA had told me and that she did not know what Allies BG level was at that time and now knowing how high it was that yes I should take her to the hospital so they can start getting her levels down. I was pretty irritated. So we ended up taking her down to Salt Lake to LDS Hospital. And this was another joke. We checked her in at the ER and they took us back and the nurse was really sweet saying how sorry she was for the diagnosis and was just really kind and tried to make Allie comfortable. The doctor comes in and says so what can we do for you and then when seeing our faces of are you serious he looks at the nurse and says so what are they here for. So after the nurse told him he decided to order some blood work to check her levels and A1C to see whats going on. He then tells us he has no idea what they do or how they treat now a days for type 1 diabetes. ARE YOU SERIOUS?? Your a doctor.... I was besides myself. So he left the room and we spent the rest of the night there dealing with a pharmacist who came in and showed us how to test Allies blood, how to use the meter, and how to give herself insulin. They had hooked her up to a I.V to get some fluids going in her to help flush the glucose out of her and bring her numbers down.
Steve flew in late that night around midnight. He got home just after we got home and was getting ready for bed. I was so relieved to see him and now felt like I could finally relax. I told him about the whole day and our hospital experience. He couldn't believe the doctor not knowing how to treat type 1 diabetes. He felt pretty bad that he did not pick up on the signs and symptoms especially where he works in the field. He just isn't home enough with all his traveling he does every week and then the days he is home he is so busy still working and doing conference calls all day and then Saturdays he's usually busy trying to get things done around the house that he wants to do so he isn't around us much. However he has helped her so much this past couple weeks with constantly checking her numbers and telling her what changes to make to her insulin doses to get her numbers down. He got us into the best Endo in our area who doesn't take new patients, but because he is who he is got us an appnt with him the very next day. We were able to talk with the doctor and figure out a plan and get prescriptions going. Because of Steve knowing the best insulin out there he had the doctor write her a rx for a new Basal insulin that is fairly new and most doctors don't know much about it yet so they wont prescribe it yet, but with Steve knowing what he does and the studies that have come back on it got the doc to write it for Allie and it seriously has been the best thing. In the meantime Kim gave us a book that primary children's hospital had given Sara when she was diagnosed that helps explain everything about diabetes which has been very helpful.
Steve's team in California and his boss has been so awesome. They sent Allie some flowers and a teddy bear and balloon. It helped brighten her day. Of course the word spread quickly throughout his work and we have received alot of prayers and beautiful comments and messages from them. I want to include an email that Steve had wrote to his team at work. It was very touching.
Friends I would like to say thank you for all of the warm heartfelt sentiments you have shared with me and my family over the last 24 hours. It has been overwhelming. I have shared your emails and texts with my wife and daughter. Those kind words put a smile on their faces. THANK YOU!
I thought I would take a few minutes and share the story with you. I hope you forgive me for getting a little personal.
It’s Monday, just after 3:00 PM Eastern time in Miami; I had missed a call from my wife and then see two text messages from her “Call me ASAP it’s a 911”….. I stepped into the hallway to call home. No answer… I dial again, this time I get my wife Raigon; I can hear the emotion in her voice as she struggles to get the words out through the tears… it’s Allie, she’s been taken to the hospital, they think she has diabetes. My heart sank, the world around me for a moment just stopped. It is ironic that we talk about diabetes all day and the impact on patients and their families. Heck, I have seen it first hand with my brother, my niece, and my grandparents. But I wasn’t prepared for the emotion that overtook me. The fears, anxieties, and flood of thoughts that ran through my head. It became so much more personal. This was my little girl. She was scarred, confused, and trying to make sense of something that made no sense.
I am grateful for my friends and coworkers who shuffled me out of Miami, got me in a cab and headed to the airport back home. Thank you Vince, thank you Barbara….
Here’s the part of the story that really made me realize how much work there is yet to do to improve patients experience with diabetes. When Raigon and Allie got to the ER, the ER doctor says “I’m not sure what they do for type 1 diabetes”. Her AIC, won’t register(over 16%), her blood Glucose 546, ketones in her urine and the list goes on. To make a long story short, the ER staff struggled to know the right things to do to stabilize Allie’s blood sugar. There is such a need for us and others with like minds to CHANGE DIABETES; to help improve education, training, and most importantly patients experience with diabetes. I am grateful to work for this company and I think I understand a little bit more about what was behind the motivation of Marie and August Krogh. I know that what we do matters, now more than ever. Novo Nordisk saved my daughter’s life. One patient at a time, we all make a difference! Remember that as you go out tomorrow.
ALL IN!
He got a wonderful response back from a friend and co worker who is the Global Chief Medical Officer for Novo who wrote....
Steven,
Just to let you know, I gave a talk Wednesday afternoon to 150+ administrative assistants from the R&D organization on a physician’s perspective on the patient (and family) living with diabetes. I opened the meeting by reading your email (without identifying you).
Everyone was spellbound by your story. It gave them a very clear idea of the emotions that go through both a patient and the family with a diagnosis of T1DM. So, you already have added back to others from the “pain” of having to go through this experience.
I hope that Allie is doing well and accommodating to all that she needs to learn. Rome was not built in a day, but attitude is critical to the process.
Best regards,
Alan
It's so important what they do and trying to get the info and education out there to the stupid doctors of the ER's who don't know anything about the disease and how its treated.
So over the past 2-3 weeks now we have been making changes to her ratios and finding out what levels she needs to be on to get her numbers where she needs to be. We have met with the diabetes educator to learn more stuff. It has been tough for Allie. It is a life changing event. She has been sad and mad. She has had thoughts of no one is going to want to marry her now she has diabetes. She could possibly give it to her kids. She cant look at food now without having to find the number of carbs in everything so she cant just eat anything and be happy. She worries about not eating certain foods because it will spike her levels so it all is very overwhelming and she has kind of shut down lately. She doesn't want to talk about it, she doesn't want to talk about pumps she just want to do the bare minimum of what she has to to survive. I cant say that I blame her. It's alot to get used to. The doctors told us that her mission would have to be on hold for a while till we get her levels under control and she feels comfortable and confident with taking care of herself, and have her A1C level down in the normal range before they will sign the papers so she can submit them. That can take anywhere from 6 months to a year so we are told. She also cant get her wisdom teeth out until her sugar levels are under control due to the high risk of infections that can happen if your BG's are not in control.
This has caused her alot of anger and sadness. But she is getting back into normal range much faster then any of us thought she would which is a great thing. And I am sure it will just take time for her to come to terms with all this and feel like she can be normal again.
The basal insulin she is on has been so awesome and is doing what it is supposed to do and keeping her night levels steady and where they need to be. I feel sorry for those with diabetes out there who cannot get this basal insulin yet and their numbers are all over the place and they constantly have lows during the nights and I read on the facebook support page of parents of type 1 diabetes how they have to stay up all night and constantly monitor their childrens BG's through the night so they don't go low and slip into coma's or have seizures. It's so sad. I hope they can hurry and get the doctors educated on this new insulin and they can see how it is so much better and reliant then whats out there currently. With other Basal insulins most people have to take it twice a day this one its only once a day and lasts 24 hours so you could even skip a dose and still be ok. It's awesome. Another good thing about Steve working with Novo is we are able to get our novo insulins and supplies for free and other stuff at a good cost which is a huge bonus because as I have learned this disease is so freaking expensive to have. Insulins, testing needles, meters, strips, glucagen pens, cgm's and pumps are so freaking expensive and alot of insurances out there don't cover alot of this stuff. It's such a huge hassle for alot of diabetics, which is sad because they need this stuff to survive.
We are keeping close watch on the other kids now where they may have a chance of getting it too. We have tested Austin a couple of times because he already has issues with hypoglycemia as did Allie and he has tested a little high twice now so we need to keep an eye on him and praying that nobody else gets it. I have read that diabetes just isn't hereditary that people can get it from a virus, and autoimmune problems, they can get it from stress. Who knows now a days. There is a test that we can do to see if the rest of us have a certain gene or something that tells whether we are likely of getting it or not. We will be doing it soon. So far we got her numbers for the most part down in the 100's so that is good. So many things can factor in to your BG numbers. Stress, exercise, hormones and menstruation for women, sickness, all these things can make the numbers go up and down. It's always a battle.
Here's to fighting the fight!
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