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!!!