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
Sunday, February 3, 2013
Wednesday, January 16, 2013
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!!!
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!!!
Sunday, December 23, 2012
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
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
Thanks for bearing with me as I figure this out!! Have as good as possible a Sunday as u can!!!! Thanks again!!!!!
Sandy
Early Merry Christmas to all & Belated Happy Hanukkah to my Jewish friends. I hope everyone has been & will be able to visit with family & friends In a relaxed & enjoyable manner , so everyone can enjoy each others company!
I have some minor news on the TP-IAT front...I'm being scheduled for an endocrinology appt pre op just to get a baseline satus report. I haven't heard back yet when that will be. It usually takes a few weeks for a new patient appt. so, I'm guessing, at the very earliest, I won't get to see him until the 3rd week og January at the very least. The I have to do my pre op labs & get those done. I want to get this stuff taken care ASAP, because once the oversight committee comes back with an decision to proceed, I don't want to be starting all of this then. I want to be free to pick a surgical date ASAP after word comes thru that we can proced!! My pancreas needs to be evicted, and soon!!!
As I've mentioned before, this waiting is KILLING ME!!! The 3 month mark has come & gone. That was the time frame I was told to expect an answer. And now I have to wait intil after New Years for the committee to get back to work.
With each new acute flair of my symptoms, I think, maybe they'll hurry up their decision because I'm in the hospital acutely ill, awaiting the surgery that they are deciding on. Maybe they do have hearts & can push up they're decision to help me out clinically. Of all the people on the groups on FB having the surgery, no one that I know of has had to wait this long. As I've mentioned in the past, I'm seriously loosing my mind waiting. Thanks goodness it's Christmas so I can keep myself somewhat distracted with all the preparations
Sorry for the delay between postings! I spent a week inpatient treating a sudden flare of the pain & severe nausea & vomiting. I tried to access this blog via my phone, but I didn't have any success. I need to investigate how to do that to avaoid long pauses in postings. PLeas bear with me as I learn this whole blogging process. Feel free to comment if you have something to say or ask! I'm looking forward to interacting with all of you as much as possible.
and reading your comments and questions.
Happy Hanukkah, Merry Christmas & Happy New Year!!!!
Until next time.......Sandy
I have some minor news on the TP-IAT front...I'm being scheduled for an endocrinology appt pre op just to get a baseline satus report. I haven't heard back yet when that will be. It usually takes a few weeks for a new patient appt. so, I'm guessing, at the very earliest, I won't get to see him until the 3rd week og January at the very least. The I have to do my pre op labs & get those done. I want to get this stuff taken care ASAP, because once the oversight committee comes back with an decision to proceed, I don't want to be starting all of this then. I want to be free to pick a surgical date ASAP after word comes thru that we can proced!! My pancreas needs to be evicted, and soon!!!
As I've mentioned before, this waiting is KILLING ME!!! The 3 month mark has come & gone. That was the time frame I was told to expect an answer. And now I have to wait intil after New Years for the committee to get back to work.
With each new acute flair of my symptoms, I think, maybe they'll hurry up their decision because I'm in the hospital acutely ill, awaiting the surgery that they are deciding on. Maybe they do have hearts & can push up they're decision to help me out clinically. Of all the people on the groups on FB having the surgery, no one that I know of has had to wait this long. As I've mentioned in the past, I'm seriously loosing my mind waiting. Thanks goodness it's Christmas so I can keep myself somewhat distracted with all the preparations
Sorry for the delay between postings! I spent a week inpatient treating a sudden flare of the pain & severe nausea & vomiting. I tried to access this blog via my phone, but I didn't have any success. I need to investigate how to do that to avaoid long pauses in postings. PLeas bear with me as I learn this whole blogging process. Feel free to comment if you have something to say or ask! I'm looking forward to interacting with all of you as much as possible.
and reading your comments and questions.
Happy Hanukkah, Merry Christmas & Happy New Year!!!!
Until next time.......Sandy
Saturday, December 8, 2012
Good almost afternoon (it's 11:54AM here just south of Boston)!! And Happy Saturday!!! I hope everyone has as pain free a weekend as possible & can enjoy some of the holiday preps!!
Happy first day of Hanukkah to my Jewish friends!! May you enjoy good food and time with family & friends as you celebrate!!
I've gotten a number of questions from friends regarding the pancreatectomy & splenectomy (pancreas & spleen removal), so I'll address those now.
You can live without your spleen, however; you will be more at risk for infection from the usual bugs that inhabit our world. But with good hand washing & strategic avoidance of those you know who are sick, you should be OK. But, if it were not safe & left the person without any immunity, we would be instructed with severe community restrictions, like no going out in large crowds, where a mask and gloves when out & recommendations like that. But other than good hand washing, keeping your immunizations & boosters up to date and getting the all important flu & pneumonia vaccines, those without a spleen are allowed to continue a normal life. We have other immunity safe guards in place naturally & they take over to protect us. Sure we're more susceptible to colds & viruses but that's a small price to pay in my book for a chance at a life with a significant decrease in abdominal pain, nausea & vomiting! Sure, I'd like to have a spleen but that's not possible for me at the current time.
Another question I've received is, "How can you live without your pancreas?" Well, it's not easy but then again, neither is living with constant pain & acute flares resulting in hospitalizations. So, I've chosen a pancreatectomy knowing I'll have to make adjustments. During the surgery, the transplant surgeon is going to re implant my islet (insulin producing) cells back into my body to hopefully decrease the risk of my becoming diabetic. However, there's a rule of thumb with the islet transplantation that 1/3 of recipients become insulin free, 1/3 need some insulin, diet & exercise, and 1/3 become what's known as a brittle diabetic. This type of diabetes is very difficult to control with the usual measures. But I'm taking the risk versus benefit approach: I have a 2/3 chance of having a good outcome & if I do become a brittle diabetic, world renown Joslin Diabetes Clinic is right in my area! (And, I've already checked & they're taking new patients!! I've already spoken to them & was instructed to call after the surgery!!)! Plus, with an insulin pump, blood sugars are known to be much more easily controlled. I've already checked with my health insurance company and they cover the pump & the supplies necessary to operate it. So, I feel I'm ready to take on the risk. And again, the decrease in my current daily, incapacitating pain to me is worth the risk. Personally, I'd rather live with diabetes than continue to live the way I'm living! But that's my decision. It may not be right for you.
Another job of your pancreas is to digest your foods. Luckily, these enzymes can be replaced with oral enzymes. Which by the way, I already take because my diseased pancreas does a poor job of digesting my food, so this will not be a big deal for me. I'm aware that it takes a bit for your intestines to adjust to the decrease in secretions from your pancreas, and I'm guessing here, from the increase in space they now have to spread out. You'd think they'd be happy the can stretch they're legs, so to speak!! But, again, it's risk versus benefit. I've asked multiple support group friends who have had the surgery and despite any bad effects she or he is dealing with now, each one said they would do it again even knowing what they would deal with post op!!! That's all I needed to hear!!
I hope that helps!!! Keep any questions you, my friends, may have coming. I want you all to know what I'm going to be going through & it's for selfish reasons...I'll need as much support from all of you as I can get. So, the more you all know, the better.
Enjoy your weekend And try not to get too stressed with the holidays!! They're here for us to enjoy!!
Best,
Sandy
Happy first day of Hanukkah to my Jewish friends!! May you enjoy good food and time with family & friends as you celebrate!!
I've gotten a number of questions from friends regarding the pancreatectomy & splenectomy (pancreas & spleen removal), so I'll address those now.
You can live without your spleen, however; you will be more at risk for infection from the usual bugs that inhabit our world. But with good hand washing & strategic avoidance of those you know who are sick, you should be OK. But, if it were not safe & left the person without any immunity, we would be instructed with severe community restrictions, like no going out in large crowds, where a mask and gloves when out & recommendations like that. But other than good hand washing, keeping your immunizations & boosters up to date and getting the all important flu & pneumonia vaccines, those without a spleen are allowed to continue a normal life. We have other immunity safe guards in place naturally & they take over to protect us. Sure we're more susceptible to colds & viruses but that's a small price to pay in my book for a chance at a life with a significant decrease in abdominal pain, nausea & vomiting! Sure, I'd like to have a spleen but that's not possible for me at the current time.
Another question I've received is, "How can you live without your pancreas?" Well, it's not easy but then again, neither is living with constant pain & acute flares resulting in hospitalizations. So, I've chosen a pancreatectomy knowing I'll have to make adjustments. During the surgery, the transplant surgeon is going to re implant my islet (insulin producing) cells back into my body to hopefully decrease the risk of my becoming diabetic. However, there's a rule of thumb with the islet transplantation that 1/3 of recipients become insulin free, 1/3 need some insulin, diet & exercise, and 1/3 become what's known as a brittle diabetic. This type of diabetes is very difficult to control with the usual measures. But I'm taking the risk versus benefit approach: I have a 2/3 chance of having a good outcome & if I do become a brittle diabetic, world renown Joslin Diabetes Clinic is right in my area! (And, I've already checked & they're taking new patients!! I've already spoken to them & was instructed to call after the surgery!!)! Plus, with an insulin pump, blood sugars are known to be much more easily controlled. I've already checked with my health insurance company and they cover the pump & the supplies necessary to operate it. So, I feel I'm ready to take on the risk. And again, the decrease in my current daily, incapacitating pain to me is worth the risk. Personally, I'd rather live with diabetes than continue to live the way I'm living! But that's my decision. It may not be right for you.
Another job of your pancreas is to digest your foods. Luckily, these enzymes can be replaced with oral enzymes. Which by the way, I already take because my diseased pancreas does a poor job of digesting my food, so this will not be a big deal for me. I'm aware that it takes a bit for your intestines to adjust to the decrease in secretions from your pancreas, and I'm guessing here, from the increase in space they now have to spread out. You'd think they'd be happy the can stretch they're legs, so to speak!! But, again, it's risk versus benefit. I've asked multiple support group friends who have had the surgery and despite any bad effects she or he is dealing with now, each one said they would do it again even knowing what they would deal with post op!!! That's all I needed to hear!!
I hope that helps!!! Keep any questions you, my friends, may have coming. I want you all to know what I'm going to be going through & it's for selfish reasons...I'll need as much support from all of you as I can get. So, the more you all know, the better.
Enjoy your weekend And try not to get too stressed with the holidays!! They're here for us to enjoy!!
Best,
Sandy
Friday, December 7, 2012
The waiting is killing me!!!!!!
Before I begin, I apologize to those with a commanding knowledge of the English language, grammar & punctuation. I'm an RN, BSN by trade so, I'm afraid, I'm going to make many mistakes. Please bear with me!! I'm learning as I go along & it is my pre-New Year's resolution to gain a better understanding of my spoken and written language. Until then, please forgive me!! Oh, & I can't spell (even with spell check some wrong wrords get thru!!). That's a subtopic resolution to get better at as well!
Next Friday, December 15, 2012, it will be 3 months since my transplant surgeon, Jim Markmann, MD, Mass General Hospital, sent in the paper work to the Transplant Oversight Committee for approval of the reimplantation of my islet cells into my renal (kidney) capsule, but who's counting!!
I'm going CRAZY!!!!! Dr. Markmann is confident that the outcome will be favorable because we don't have a choice & it's not morally wrong nor will it hurt me other than the usual risk. But there's always a chance it could come back with a no which would devastate me, although I've been repeatedly assured that that won't happen. I'm still apprehensive waiting for the definitive answer!!
I've decided if the committee comes back with a no & there's no where else viable to put my islets, I'm going to go ahead with the total pancreatectomy. Diabetes dependant on insulin doesn't scare me as much as this unrelenting, severe pain with frequent acute flares of said pain does! Diabetes can be managed & I can take steps to better management with an insulin pump which I've already checked, is covered by my insurance!! And, the world renowned, Joslin, is in Boston and they're taking new patients! So, that's why it's not as scary! Will it be a pain & frustrating at times? Absolutely!! But I'm up for the challenge.
To deal with some of the anxiety of waiting, I've decided to control the only variable that I can...my attire during admission, with exception of the ICU!! As an avid sewer, I'm making PJ's that are similar to hospital garb, yet are colorful to help brighten my mood & improve my comfort during my hospital stay. I've finished the bottoms, a simple PJ bottom with an elastic waist & pockets. Now I'm working on the tops that include snaps at the shoulder seams to accommodate any IVs and they snap in the front to allow the nurses & doctors easy access to my incision and tubes while allowing to put them on by myself, as well as full coverage in the back. I feel a little in control of an event in my life which will be totally out of my control. Of course my attitude & willingness to cooperate post op with all of the instructions I receive is within my control but I mean the general medical events: pain, any complications, restrictions, any side effects. etc.
I'm excited yet terrified at the same time anticipating this life changing medical event in my life!!!! I tend to be on the anxious side in general, especially when I don't know what to expect. Plus, I've been treated poorly by many health care professionals in the course of my disease, so I'm still a little nervous about the treatment I'll receive. Of course, I've been assured I'll be treated well but I've heard that before!! My doctors, Dr Lillemoe & Dr Markmann have been nothing but gentleman and extremely supportive & respectful. It's mostly the nurses & residents/medical students that I'm fearful of but my care will be overseen by Lillemoe & Markmann, and I'm not above reporting anyone who treats me with disrespect to them. So, I'm hoping I don't have any problems. I'll keep you updated on that front!
I'm already putting in place the chain of people who will communicate the events of my surgery & ICU stay while I am unable to access the phone or Internet. Again, to gain some element of control of an uncontrollable situation. So, there will be someone posting for me during that time to keep you all informed.
Thanks you for reading my blog &, hopefully following me!! I appreciate your time with me!!I hope you all have a pain free a day as possible!!
Until next time!!
Sandy
Next Friday, December 15, 2012, it will be 3 months since my transplant surgeon, Jim Markmann, MD, Mass General Hospital, sent in the paper work to the Transplant Oversight Committee for approval of the reimplantation of my islet cells into my renal (kidney) capsule, but who's counting!!
I'm going CRAZY!!!!! Dr. Markmann is confident that the outcome will be favorable because we don't have a choice & it's not morally wrong nor will it hurt me other than the usual risk. But there's always a chance it could come back with a no which would devastate me, although I've been repeatedly assured that that won't happen. I'm still apprehensive waiting for the definitive answer!!
I've decided if the committee comes back with a no & there's no where else viable to put my islets, I'm going to go ahead with the total pancreatectomy. Diabetes dependant on insulin doesn't scare me as much as this unrelenting, severe pain with frequent acute flares of said pain does! Diabetes can be managed & I can take steps to better management with an insulin pump which I've already checked, is covered by my insurance!! And, the world renowned, Joslin, is in Boston and they're taking new patients! So, that's why it's not as scary! Will it be a pain & frustrating at times? Absolutely!! But I'm up for the challenge.
To deal with some of the anxiety of waiting, I've decided to control the only variable that I can...my attire during admission, with exception of the ICU!! As an avid sewer, I'm making PJ's that are similar to hospital garb, yet are colorful to help brighten my mood & improve my comfort during my hospital stay. I've finished the bottoms, a simple PJ bottom with an elastic waist & pockets. Now I'm working on the tops that include snaps at the shoulder seams to accommodate any IVs and they snap in the front to allow the nurses & doctors easy access to my incision and tubes while allowing to put them on by myself, as well as full coverage in the back. I feel a little in control of an event in my life which will be totally out of my control. Of course my attitude & willingness to cooperate post op with all of the instructions I receive is within my control but I mean the general medical events: pain, any complications, restrictions, any side effects. etc.
I'm excited yet terrified at the same time anticipating this life changing medical event in my life!!!! I tend to be on the anxious side in general, especially when I don't know what to expect. Plus, I've been treated poorly by many health care professionals in the course of my disease, so I'm still a little nervous about the treatment I'll receive. Of course, I've been assured I'll be treated well but I've heard that before!! My doctors, Dr Lillemoe & Dr Markmann have been nothing but gentleman and extremely supportive & respectful. It's mostly the nurses & residents/medical students that I'm fearful of but my care will be overseen by Lillemoe & Markmann, and I'm not above reporting anyone who treats me with disrespect to them. So, I'm hoping I don't have any problems. I'll keep you updated on that front!
I'm already putting in place the chain of people who will communicate the events of my surgery & ICU stay while I am unable to access the phone or Internet. Again, to gain some element of control of an uncontrollable situation. So, there will be someone posting for me during that time to keep you all informed.
Thanks you for reading my blog &, hopefully following me!! I appreciate your time with me!!I hope you all have a pain free a day as possible!!
Until next time!!
Sandy
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