I chose diabetes...well sort of!!

On Sunday I'll be nine months post total pancreatectomy and autologus islet cell transplant. Hard to believe it's been that long but it has. It's been a long road physically & emotionally but one I'm glad I chose! I've had my share of bumps along the road which I'll detail in another post, but I'm most effected by the new onset of my diabetes. It has taken me a long time to call it my diabetes because I was in denial I even had it for a long time. It never occurred to me to even consider the chance that my autologus (meaning my own cells from my body) islet cell transplant would fail!! Why would I consider such a thing?? I was relatively young, 51 yrs old, had never had a problem with my blood sugars despite having had three quarters of my pancreas removed in 1994 & was in fairly good health if you didn't count the chronic pancreatitis and all that it had done to my body over almost 26 yrs. I'm usually not one to overlook obvious possible outcomes, especially when it comes to my medical life, but I seriously missed the boat on this one!!

Long story short, immediately after the surgery it seemed my little islet cells were loving their new home in my right kidney & began to function as they has in my pancreas, but then I got a high fever. Over the next 24 hours, my once happy islet cells stopped producing insulin & my insulin requirements sharply increased well above what I had initially been requiring. By the time I went home, I was requiring more insulin than had been predicted. I still held out hope though. "Maybe the islets just needed to wake up & then they would start to work." was what I told myself on a daily basis as I injected my insulin. I was told it could take a few months for them to fully function. This surely was my case I told myself.

I finally had to face the truth that my transplant had not taken when my c-peptide (a direct measure of how much insulin your body is producing) was basically zero & had not moved since the fever. I was still in denial. "They're still asleep!" is what I continued to tell myself even though my
endo(crinologist) told me there was little chance of the islets staring to function at that point but I refused to believe him! After all, he was only the expert in this department! What did he know??!!

I finally had to accept the fact that I had type 1 diabetes when I started to tolerate eating regular food and stopped my tube feedings. A typical post meal blood sugar was in the range of 400 & I was requiring more & more insulin. I had a tough time accepting it but eventually had to. I've come to believe there must be a reason for my having this disease. I'm still looking for that reason but I have to believe that some good has to come from my struggles with this. So, I chose diabetes over chronic pancreatitis & unlike many other living with this disease, I can say I chose diabetes. It didn't choose me!!

4 months & 11 days post op!!!

Good morning!! It's FINALLY not raining here in Boston, so it is a GREAT morning.

It's been a long time since I've posted but I've been busy recuperating & unfortunately, dealing with a few complications and 1 more unexpected surgery. It's been a crazy 4 months in a lot of ways!!! The biggest of which has been the learning curve asssociated with the diabetes that has developed. My islet cell transplant didn't take, so as a result, I now have type 1 diabetes (T1D). That's ok!! I'm still very happy I had the surgery, but I very much would have lilked not to have developed the diabetes. In the beginning, right after the surgery, I was taking multiple daily injections of both fast & long acting insulin, but I didn't feel as if my blood sugars were very well controlled. On April 1, 2013, I started on a Medtronics Revel Minimed Paradigm insulin pump!!!! And I haven't looked back since!!! Not having to inject myself 4-6 times a day is GREAT!!!! I still have to jab my finger 10-12 times a day & more if it's a weird blood sugar day, but I don't mind doing this. It gives me great info on where my blood sugar is & how I need to treat it or have something to eat. But I HATED the frequent insulin injections!!

I LOVE my pump!! I only have to change the infusion site, where the insulin gets administered into my body, every 3 days!!! Not too shabby!!!! 1 needle every 3 days verses 4-6 a day?? I'll take it!! Plus, I was able to get a purple pump!! How cool is that!! They are available in several different colors and purple actually spoke to me!! I also was able to add a "skin" or sticker to the pump to decorate it more to my personality. I chose a skin of my favorite fabric designer, Kaffe Fassett!! Once I figure out how to add a pic, I will show u my purple pump & my AWESOME skin. I've recently started with a continuos glucose monitor but more on that later.

So, overall the diabetes thing is tolerable, but I'm learning that my pancreas was responsible for much more than the medical community is aware of...or at least that's my humble opinion. Obviously, my digestion of fats, carbs, & proteins is now controlled by oral enzymes that I take, but I'm experiencing a few other gastrointestinal changes that I didn't expect. Let's just say the time it takes my nutrition to enter and exit my body is radically different than it ever was. I've experienced both a speeding up and a slowing down & it just depends on the day & what I have had to eat that determines which end of the spectrum I'm on.

I've also have also had the joy of experiencing a small bowel obstruction over the Memorial Day weekend. It started suddenly & unexpectedly the Thursday before the holiday & by the time Sunday rolled around, it was quite obvious to the doctors that it wasn't going to resolve on it's own, so I needed a little surgical fix to correct things. Once I woke up after the surgery, I was already feeling better than I had in days!!! I'm told these obstructions are not uncommon following abdominal surgery & frequently they can resolve on their own with IV fluids & the dreaded, nasogastric tube (NG), but that didn't come to pass for me & the surgery was necessary. SO was the NG tube but it wasn't as bad of an experience as it could have been because the tube did actually help my symptoms.

Overall, I'm recovering nicely from both surgeries! And, the best part is that the severe, constant, debilitating pain is gone & I'm learning to deal with a "new normal" since the surgery. I had to let go of the dream that I would get my old self back once I had recovered. That was hard! I definitely had to rethink my expectations following my pancreatectomy. I'm definitely better but somedays this new normal is a lot to deal with & I'm not quite sure how to get through some of the difficult days. I have to admit there has been a day or 2 where I have reconsidered whether having my pancreas removed was a good idea at all. But when I'm having a good day, that thought doesn't even register.

I'm still fairly early in my recovery as I'm told it can take up to 18 months to fully recover but the good days far outweigh the bad!! So, it's a GREAT morning in Boston!!!

Sixteen hours, ten minutes and counting!!

Can't believe it's finally the day before my surgery!! It's been an anxiety filled week waiting for Friday to come!! I've filled the week with errands to get completed before the surgery, a little sewing, and lots of time with family and friends!!

My Husband and son surprised me Tuesday night with a cake and presents to help me get theu the recuperation phase of this journey. I was all teary when they came in with the cake all lit up with candles!! I was very touched that they remembered and did it before my surgery!!

The countdown is on!!

Well, it's true!! I got hospital approval to transplant my islet cells into my renal capsule. My surgery has been scheduled for Friday, February 8, 2013 starting at 6:30AM. To steal a phrase from a friend who's had the surgery, I'm nervously excitied!!

I've only known since the 24th of January and I've gone through every emotion you can imagine!! Most especially, I have been second guessing my decision to have the surgery at all!! Is this too radical of a treatment strategy? Will I be able to withstand the immediate post op pain? What if I become diabetic? Is that a fair trade off? You name it and I've thought of the excuse not to have the surgery!! I'm trying to think of it not as a treatment but as a cure of my pancreatitis due to the removal of my pancreas! It can't get inflammed if it doesn't exist!!!

I was seriously considering cancelling the surgery until I spoke with anesthesia during my pre op evaluation. The doctor was extremely meticulous about the details of my history and very thorough in hids documentation. He recommended I see the acute pain management team the morning of my surgery to best treat my pain post op,my biggest fear!!! He sent an email to the director of the team outling my pain issues requesting an evaluation in the holding area of the surgical suite. As you can imagine, this allayed my biggest fears. He, also, very calmly answered my myriad of questions without becoming annoyed. We even joked about raising our boys in today's world. I felt very reassured by this doctor's demeanor and attention to detail, as well as his being proactive concerning my post op pain. I was blessed to get to meet with this particular doctor!!

Having had chronic pain, I have what's called hyperlagesia, which means any pain I do experience is heightened due to my central nervous system having been exposed to my chronic pain. Our central nervous systems are very adaptable. With hyperalgesia, if you and I both stub our toes, your body tells you you stubbed your toe but you can adapt and go about your day. My body tells me I broke my foot and my pain is overwhelming even from a small incident like stubbing my toe. I'm extremely worried about the pain post op being out of contol despite having learned to have a high pain tolerance. The anesthesiologist I saw understood this concept and reassured me the acute pain team would take actions to adequately treat my pain.

As I write this, I have 5 days until the surgery!! YIKES!!! But since speaking with anesthesia Friday, I am eerily calm concerning the upcoming surgery. I think I've come to accept it as the only viable option for treating my chronic pancreastitis. I cannot contiue to live the way I have the last 12 months, repeatedly being admitted for at least 5 or more days for acute abdominal pain. And depending on the medical team, I frequently have to fight to have my symptoms believed and treated adequately. I'm so tired of fighting for relief of my symptoms, most of all the pain! So, I have to take some action & this surgery feel right!

I feel I have little control over the surgical process that I am about to endure and I like to have some measure of control over things in my life. I like to be in the driver's seat making the decidions about which way to go. It seems since I made the decision to have the surgery and signed on the dotted line, this freight train has been moving along without much imput from me. I've been wracking my brain to think of some way to gain a little control over what is about to transpire. During the last few admissions, I have been very uncomfortable in the hospital garments that they have us patients wear and this got me to thinking. I'm an avid sewer with confidently average skills, so I decided to make my own PJ's to wear in the hospital as I'm recuperating. I'm of smaller stature, 5' 1" and 118 lbs, so the hospital garb is HUGE on me as well as being unflattering,and it shows much more skin in inappropriate areas than I like. I knew I could improve on these issues.

I've been working hard on creating my colorful, slightly tailored and fitted PJ's for the past couple of weeks. I have made 5 pairs of pants, complete with pockets and hemmed so I'm not tripping over the cuffs as I was with the hospital pants. I'm now working on 5 matching tops, complete with snaps and access to areas the nurses may need to get to while at the same time modestly covering what needs to be covered. (I'll include pictures before I get admitted.) I'm still working on the practice top and I know I only have 5 days to complete 5 tops, but once I make the first practice top, the rest will become easier to make as I go along. Practice makes perfect!!

The PJ's are very colorful and I think, really cute especially when compared to what the hospital has to offer us to wear. So, this has allowed me to think I have some control in an area of my upcoming experience. It also has kept me distracted from any pain I had been experiencing from the repeated flares as well as thinking about the upcoming surgery. So, making these PJ's has served a couple of important purposes.

 I have one issue that I'm struggling with about Fridays surgery. I have a clotting disorder which means my body likes to make blood clots. To treat this I'm anticoagulated or in everyday terms, I'm on blood thinners, an injection I take every night before I go to bed. Part of the post op pain management is an epidural catheter, just like when a woman is in labor. But there is an issue I have to weigh before I can actually get one. I need to stop my antocoagulant Monday and be off of it all week to be able to get the epidural Friday. This means I am risking develoing a clot as the days I'm not taking it progress. I have been off of it in the past for shorter time periods and have developed clots, so 4 days without this clot preventing medicine scares me. What should I do!!!

My current options are 1)stopping the medicine Monday & risk developing a clot all week but be able to get the epidural Friday. or 2) don't stop the medicine until Thursday as needed just for the surgery and then I can't get the epidural Friday but I won't risk developing a clot. I'm torn as to what to do. If I develop a clot, the surgery will be cancelled until after the clot is stable. But when I develop clots, they generally go to my lungs which is very dangerous, so I'll be taking a huge risk should I decide to hold it all week. The key to making this decision is the ability of the acute pain management team in controlling my post op pain if I don't have an epidural. Right now, I'm leaning towards forgoing the epidural and not stopping my medicine. I don't feel comfortable risking a clot, especially one in my lungs as I get very sick when I do develop clots. But if I take that route, will I be able to withstand the pain after surgery?? What's a girl to do??

Well, this is where things stand today. I'll keep you updated as the week progresses and I weigh the anticoagulant dilemna in my mind. I have to go sew, so have a good wekk & we'll chat soon!!

Sandy

Rumore has it, I've been approved for the transplantation of my islet cells inot my renal capsule!!!!!

I was inpatient last week at Mass. General Hospital with yet another acute flare of my pancreatitis when my gastroenterologist told me she had spoken to Dr Lillemoe. He told her he had gotten word that I had been approved & he was thinking my surgery would be scheduled at the end of the month. To be sure of the news, I called Dr. Markmann's office to confirm it but his assistant had not heard anything. She told me she would check with the doctor and get back to me. Now, I was uncertain of what to believe!! I didn't want to get my hopes up & ultimately be disappointed, so I decided I'd wait until I heard from Dr Markmann.

I was discharged before I heard back from the transplant surgeon, Dr Markmann. His assistant called me & told me that the doctor wanted to schedule an appt to check in and update my flare history. I asked her if he had heard from the transplant oversight committee. She told me she wasn't sure because he didn't say on way or the other. AARRGGG!!!

Now, it's been almost 4 months since the original paperwork was submitted and I'm going crazy waiting!! Plus, I've been flaring once or twice a month regularly for the past couple of months, so I'm really hoping to have the surgery sooner than later to relieve my symptoms and improve my quality of life.!! I have an appointment for next Thursday, 1/24/2013 to see both Dr's Markmann & Lillemoe. I'm really hoping it's because I have been approved for the surgery & we need to make plans to schedule the surgery & get my preop paperwork and testing done. I'll keep you posted after this appointment!!

I'm still having an issue with my J tube draining badly both when I'm infusing & when I'm not using the tube. It's very difficult to infuse due to the copious amount of drainage leaking around the tube. I cannot leave the house when I'm infusing because I need to keep up with the dressing changes so I don't leak thru the dressing & my clothing. Last week, I worked with the ostomy nurse, trying to improve the condition of my skin surrounding the J tube. It's very red and irritated from the gastic fluids leaking out. I've learned a few tricks to keep the skin healthy that I'll share with you in a bit.

The osotomy nurse tried to rig up a colostomy bag to collect the drainage in one place. Unfortunately, it didn't work. The longest appliance lasted 12 hours before it sprung a leak & quickly got everywhere!! By the end of the week working together, the nurse & I decided that the best way to manage the drainage was with a heavily padded dressing which I could change as needed. This method gives me the most contol over the leakage which is important to me. I couldn't wear the colostomy appliance, all the while wondering when it was going to leak. This would have limited how much I would be able to go out, especially if I was afraid of when I'd spring a leak. I'm much more confident with the dressing changes as needed.

I was trying to advance my diet a bit and not infuse while the J tube continiues to leak. This didn't last long after I got out of the hospital. I had 2 pain free days in which I tried to eat a little of a low fat diet. But I developed severe abdominal pain, nausea & vomiting on day 3 of my dietary experiment. So much for that idea!! Currently, I can only tolerate 1/2 of a single popsicle, so I've had to start infusing. Despite the pain & other symptoms, I can become excruciatingly hungry if I don't eat or infuse. So, I've decided to infuse during the day and evening, stopping when it's time to go to bed due to the leaking of the infusion around the tube. I have awoken in the midst of formula soaked sheets and blankets in the past, so infusing while I'm awake will help me avoid doing lots of laundry every morning.

I'm working hard at keeping the skin surrounding my J tube healthy using a mixture of Desitin, A&D ointment, Stomahesive, Nystatin and 1% coritsone cream. There are not exact amounts mixed in. I just add a decent amount to the container, mix it together and then monitor how my skin responds tailoring the formula to the response of the skin.

 I knew of this "paste" because we used it on my sons butt when he was in diapers to keep the skin on his bottom healthy. I figured that the fluids leaking around my J tube are very similar to what was "leaking" out of my son, so maybe it would help!! So far it has, although, sometimes after a dressing change, I use just the skin barrier, Cavilon ( a 3M skin barrier product thta is sold over the counter but os not covered by medical insurance) and the stomahesive to protect the skin. It is a bit red today but it's much better than it had been.

I spoke with the GI nurse practitioner this morning to update her concerning my struggling with another flare. I'm really trying to avoid being readmitted due to the large amount of people in the hospital with the flu. I really don't want to get sick with the flu & have to postpone the surgery until I get healthy again. Plus, being at home managing my symptoms, I can be much more comfortable, as well as, still be able to sleep without the continued awakenings to check my vital signs. I'm keeping myself busy & distracted from the symptoms by knitting and crocheting. This also helps relax me.

If the pain intensifies or I cannot remain hydrated, I will have to go to the hospital. But for the time being, I'm ok with the status quo. At least the GI team is aware of what is going on with me, which means, if I need to go to the hospital, it won't be a problem...just a HUGE wait time in the ER as more flu patients flood the ER. Wish me luck!!!

Quite the day today was!!! My chronic pancreatitis (CP) was acting up all day!! LOTS  of pain & nausea but luckily no vomiting!! I'm getting thru it but I've had a headcold for about a week & in the last 3 days my ears have been bothering me. Yesterday I tried to go to a local urgent care clinic but they were overbooked with patients so I couldn't be seen. So, I went first thing this morning at 9:20AM. They didn't open until 10:00 AM yet I was already 4th in line!!! Thank God I went early because by the time I left she had closed the line. There was a 3 hour wait & it was going to take her past closing time!!

Turns out I have an established ear infection in one ear & the beginnings of an infection in the other!! I don't remember when the last time I had an ear infection was but HOLY COW!!! My ears are killing me!! I'm on an antibiotic and I have a local anesthetis for my ears but the pressure is what is getting to me!! And, dealing with the abdominal issues at the same time, I'm having a hard time getting comfortable. I'll get thru it but, man, I'm uncomfortable!!

I'm trying to deal with the fact that I most likely will not hear from the oversight committee until after the new year. I'm so anxious to get a date for my TP-IAT & the waiting, althought I know it's the hardest part, is getting very annoying. In my opinion, it's ridiculous that this extended period of time has to pass before they can make a decision. I know I'm not the only one they are deliberating on, but they are dealing with people's lives. I'm always afraid when I get abdominal pain that I will end up in a flare that can't be managed at home & I'll have to be admitted to the hospital. I guess I'll just have to keep praying that they come to a decision sooner rather than later. Thanks for letting me vent!!

I am excited and optimistic about the surgery due to the fact the transplant surgeon wants me to get my preop labs done & also, see the endocrine or diabetes docotor. If he didn't think the decision was going to come back positive then he probably wouldn't have me do these things. So, I guess I'll just have to take it step by step!!

Merry Christmas Eve's Eve!!!!

Sandy

I'm mobile with the blog now!!

I just spent some time researching taking the blog mobile & ...I'm PSYCHED!! I did it! I'm now on mobile web!! So no more long delays during hospital stays!!

Thanks for bearing with me as I figure this out!! Have as good as possible a Sunday as u can!!!! Thanks again!!!!!

Sandy