Posted by juliebernal | Filed under Recovery & Coping, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
Aug. 4, 2011
A little over two months post TP/AIT and my scar is healing. The surgery and transplant was by far one of the scariest things I ever decide to do and going through with it was just as hard. Luckily I had great doctors and was able to go into it with a good attitude with great support from family and friends.
May 19, 2011, I (Julie Bernal) underwent a total pancreatectomy with an auto-islet transplant at the University of Minnesota Medical Center of Fairview. The surgery and transplant involved evicting my entire pancreas, spleen, appendix, duodenum with pancreatic bile ducts and part of my intestines. Then a new opening for the liver bile duct had to be created, the islet cells had to be harvested and transplanted into the liver and finally a GJ-tube inserted into my stomach and intestines. Dr. Pruett, whom is head of the transplant center at the University of Minnesota, performed my surgery. I have to say that I was VERY impressed with him and the whole staff.
I spent a total of 12 days at the University of Minnesota Medical Center of Fairview hospital.
Day of Surgery and Transplant
I started with getting a temporary pacemaker put in to help keep my heart rate above 60. Now most that have this surgery don’t need the pacemaker but since my resting heart rate runs low – around 40 due to a heart ablation – my doctors thought it would be best to have one. I had a wire with a box coming out of my neck. Getting the pacemaker put in was pretty painless. I was then taken into surgery. I spent about 14 hours on the table. I remember waking up to about five people holding me down as I was trying to throw up. I was sitting straight up at least six inches off of the bed. Thankfully they were able to keep me from vomiting and then held me down. The pain was like no other pain I’ve ever felt. From 1-10, it felt like a 15. Now I’m allergic to many pain medications so my options were limited. I was a bit worried that I might have a bad reaction. Well, I did. The pain medication was making me feel like I was crawling out of my skin and when I was given more of it; it just increased the pain and nausea. I remember it was hard to talk. I could only say a few words at a time. Many that have the surgery don’t remember much from the first few days. I remember everything, even down to the nurses’ names. But I guess it is because narcotics work differently with some. I never felt drugged up or sleepy from the medications. The first few hours I thought, “What did I do?” But then later I thought, “The pain will get better and if I can make it through the night, I can make it through anything. And if I do, I will do it with a smile on my face.” And so I did. Though when I first woke up it was very hard for me, I did notice that the brick feeling, the tightness and sharp pain where my pancreas once was, was gone. I knew that the surgery had already made a difference.
Recovery Day One
I woke up in the ICU early in the morning with a pain level of 3-5. What a relief, the new pain medication was working. Though my belly was swollen and swore, my pain was controlled and I had an amazing nurse by my side. I was adjusted in my bed throughout the day from my back, to my side, to my other side. I needed two people to help move me. Lying on my side was painful and took around eight pillows to hold me up. Plus it didn’t help that I had an IV on one side of my neck and a pacemaker on the other side. The first time they moved me I remember coughing what felt like a bit of liquid in my lungs. They said, “Good job, good girl!” They wanted me to sit in a chair. It took a while to gather all my tubes and cords – I had a pacemaker, an IV in my neck, wrist, arm and hand, a GJ feeding tube, drainage tube, catheter, insulin drip, IV fluids, pain pump, heart and oxygen monitor on my finger, blood pressure monitor on my arm and leg pumps. I was helped up by two people and sat in a chair for about five minutes as they changed my sheets. Sure seemed like a lot of work just to have to gather everything up again. But it did feel good to get off of my back for a bit. I then had to do breathing exercises and arm and leg physical therapy. Every hour I would get my finger pricked to check my blood sugar levels. I also got my first sponge bath. I did pretty well for the first 24 hours. It sure did feel like a busy day.
Recovery Day Two
I woke up early in the morning and did some of my leg and arm exercises in bed. Fell back to sleep with my neck a bit slanted. I woke up with a tightness in my chest. It felt like I had plastic wrap in my chest and my heart was beating weird. I was worried that the pacemaker came out and had poked a hole or something. I was dizzy and hot. I had a fever. I had a chest x-ray and an echo done to look at my heart. They did see an arrhythmia but they said it was not anything to be worried about. Three hours later my fever went down and my heart felt better. I sat in a chair for about 10 minutes and later in the day, went for a pretty long walk around the hall. That night I was doing well enough that they moved to another floor – a step down from the ICU.
Recovery Day Three-Five
Day three I started to get some pain in my left shoulder, back and rib. My left shoulder hurt more than my incision. The doctor told me that they had to stretch my ribs during surgery since my body was so small and thin. So it was normal to be having that kind of pain. That night I went for two walks and then my chest pain returned. Around 1 a.m. I had my pacemaker removed. By day four I started to drink water. I was up to three walks a day. I was told that I was a superstar patient.
By day five I was moved to the transplant floor. I started drinking juice. I was taken off the pain pump and had my bowels woken up.
Recovery Day 4-12
Day six I tried to eat solids. Bad idea. Tried french toast. Two bites and I vomited. I was getting 24 hour feedings through my GJ tube so I was getting all the nutrition I needed from that. The doctors encouraged me to give my insides more time to heal. It was nice having my husband, mom and dad there to visit me and help out. And my mom did a great job of keeping everyone updated on my progress.
Day 7-12 it was up and down. Cramps, bloating, digestive issues and nausea. The doctors and nurses took good care of me and helped me get through it. I was taken off the insulin drip and was given long acting insulin in the morning and fast acting insulin throughout the day. By day 10 I was eating some crackers and a few bites of rice. By day 12 I was up to five walks a day. I was discharged from the hospital. My parents and husband were there to pick me up. My dad and husband both had pretty bad colds. So they wore masks and I did too just to be safe.
Recovery week 3-4
My husband and I stayed at an apartment close to the hospital. I spent a lot of time resting. There were many medications that I had to take throughout the day.
Two days after discharge we mixed up my long acting with fast acting insulin. I took 25 units of Novalog instead of Lantus. We were waiting at the clinic for a follow-up and my blood sugar dropped to 31. That was very scary but after we figured out that I took the wrong insulin, the nurse was able to act fast. It took six hours to get me stable and get my sugars back up. I ate around 10 packs of crackers and cookies, 10 little juice boxes, many glucose tablets and was on a drip. One second my sugar would jump up to 300 and in five minutes back down to 41. I was covered in sweat, everything was blurry and I was very weak. Well, we will never make that mistake again. By week three my blood sugar levels were dropping low and I felt pretty tired. I was able to lower my long acting insulin from 25 to 7 units and I was told that my islets were working great. That was great news. I started eating small meals. It was very hard to eat. It felt strange and it gave me nausea. Every bite felt like a challenge. I had to take pain medication, check my blood sugar levels and add food to my feeding tube bag every four hours. It made for restless nights and I really relied heavily on my husband to take care of me. I don’t think he got much sleep. I had to also make sure to clean my GJ tube everyday. It would leak some. The GJ tube was a bit swore but I was glad to have it. It helped me from feeling like I was starving and kept me from losing weight.
I started to have problems with nausea. I started vomiting after drinking water, eating and even after taking my medications. I was able to go into the clinic and get some IV pain medication and fluids. I finally figured out that the pain medication I was taking through my tube was just hitting me too hard. For me, it just built up and made me feel more toxic as the days went on. By week four I was switched to a pain pill that I was taking before the surgery. Within a day I felt so much better and finally stopped vomiting. I was able to eat and I felt well enough to go out and walk around town some. We had four days that we were able to leave the apartment to see the city or just go for short walks. Just a little over a month we were finally able to go home. And as a parting gift, I got my GJ tube removed.
Recovery 2 months
Eating has become better. I’m able to eat three small meals plus snacks and no longer have any nausea. My swelling went down. My blood sugar levels have been really good. Just taking 5 units of long acting insulin a day. I still check my blood sugar levels throughout the day. I have days I need to rest and I still get worn out if I do too much. But, I’m now off all pain medications. I feel pretty good. Still have days with some digestive issues. Still taking my pancreas enzymes when I eat (and will be for the rest of my life). But I feel like a new person. I feel hopeful and lucky. My pancreas pain so far is no more. Sure I’m still healing. My incision is still tender. But wow, what a long road it’s been…and very much worth it!
Thanks to the great doctors, nurses and team at University of Minnesota Medical Center of Fairview. They saved my life! Thanks to my family and friends who have been there for me through it all! And thanks to everyone who prayed for me. I feel blessed that I’ve been given a second chance at life – a chance to enjoy what my future may hold for me. I look at my incision and it reminds me that I’m a survivor. It reminds me of strength and where I’ve been. It reminds me that this life is very much worth living.