My Journey From Chronic Pancreatitis through TP-IAT, Recovery and New Life
We have been up for an hour and getting ready. we are about to head to the hospital. Both of our daughters are here and everyone is nervous but very positive. Su is doing great! She is feeling good and actually holding everyone together. She is amazing But I know she is just as nervous as the rest of us. Time to go.
We had another busy day today and the reality of this difficult and serious surgery is becoming more prevalent. We were off to the Hospital clinic for all the preop things and a few studies and the day ended with meeting the surgeon. Sue is doing good and holding up really well. She is a true Whipple no, strike that TP-IAT Warrier!
We started out in one of the off-site building where Sue spent two hours answering questions and undergoing tests for various studies that are being done for the TP-IAT procedure that involves before and after pain and other things including hospitalizations. They did a test to determine how well her nervous system is considering the amount of pain she has dealt with over the years and see if it might have been damaged in any way. It involved putting her had in hot and cold water and probes touching her skin. Interesting she felt no pain in the cold water. I could have saved them time and told them that as much as she complains about the hot and loves the cold. These studies will go on after the surgery for a year or two. Following the studies, Sue met with the anesthesia doctor and reviewed all the things important for the surgery and after. Also going over all critical information like allergies and other reactive items as well as history. Then she met with the nurse and she talked about the before care and preparations at home what to expect at the hospital in the morning and then it will be nighty night. We talked about what we can expect during the surgery and after and what to expect in ICU, which we pretty much had a good idea about. Then there was lab work. Blood type and crossmatch, sound familiar (TV). Finally, at the end of the afternoon, we met with Dr. Bielman the surgeon. Dr, Bielman did not rush us and answered all our questions and was very energetic about Susan and how she was very positive but nervous about the surgery which is exactly what he expects. Sue was nervous about me because I have a tendency to ask a lot of questions. But I really need to understand and know what’s going on. I have not had the time to meet with the doctor before or do the in-depth research Sue has and I admit, and I told the doctor, some of what I read was not encouraging. But after listening to him and the voice recording Sue made of him explaining things to her when they first met and doing the research I could and getting to know him in his work and success, I really feel now that this is a good thing for Sue and I am excited for her. I did ask a few questions and he answered them including a very important one regarding cancer. He warned us about a very remote possibility which she spoke about before, but what I needed to hear was that in all the cases which include several cases just like Sue only one developed cancer. He then showed us the test results and explained them to us and showed us why in Sue’s case he was very comfortable that she will be successful and health and not a concern in the future. If he thought so he would not do the Islet transplant. With that, we all felt good positive and ready for the big day tomorrow which will start with us being at the hospital at 5, the surgery beginning at 7.
With the day and all the prep stuff done and one daughter here we decided to enjoy the evening a bit and went to visit the largest mall in the country, Mall of America. It was a nice evening and Sue got a Cinnabon bun to enjoy one last time before her sugar-free diet for the next 4 to 8 months.
I wish I could say words that describe how brave and strong Sue has been. All I can say is how much I am so proud of her and what a beautiful person she is for doing this to ensure her life in the future is the best it can be despite this huge hardship now. How much I love her is just not enough.
Remember to pray for her tomorrow.
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Giving Blood
Sue and Dr. Bielman
Sue and I and Mall of America.
Today we began the official journey. At 3:30 this morning we got up to catch a flight to Minneapolis/St Paul. The travel time with a layover in Atlanta was about five and a half hours. We picked up the rental car and we were off to the house then the Hospital.
At 1:30C/2:30E we had a 2-hour appointment/class with Lesley Marrow for Diabetic Education. She went over everything from A to Z about diabetes. This was a really phenomenal and eye-opening session where we got to learn so much about every step of the care that Sue will need related to her surgical induced diabetes beginning next week. We also had the opportunity to have a hands on training on how to use the pen syringes and an in-depth understanding of what she will face as she heals and her Islet/beta cells wake up from the transplant. We also had the opportunity to ask questions about Susan’s hypoglycemia and how to better treat it when it happens and some signs of an onset attack. Sue and I also had a very thorough training on how to use her new meter that they gave her. We also practiced the injections. Sue will be on a long-acting insulin every morning and a short-acting as needed for correction of blood sugar. One thing I will say, as we left the appointment, that class left us both with a feeling of the enormity of this whole thing that up until now was still something off in the future. The reality of this surgery and new life is quite surreal!
The hustle and bustle of the travel, running around checking out the area and getting settled made the day go by so fast. The only problem with something like this is that by the time you sit down to rest and relax it’s time to go to bed… We are both exhausted!
One added note, while we were on the layover in Atlanta, our oldest daughter surprised Sue and told her she would be here for the surgery along with our other daughter. Having the whole family here has made her so happy and deeply comforted knowing that along with all the support and prayers from all her family and friends, the people closest to her will be by her side to see her through her toughest moments.
Yesterday was Susan’s Birthday. With just 5 days left things are getting a bit hectic as the time get closer. Most everything is done, but a lot of little things are constantly on her mind. She is already packed (I am not, I’ll do that tomorrow). Checking and double checking to make sure we have everything. The biggest thing occurred on Saturday, a change that we had to make regarding her care after her surgery during the weeks she is adjusting to her new life and healing and getting stronger. One of the people who was going to stay with her became injured. It was a complete accident and very unfortunate and disappointing for both Sue and the person who was supposed to come. She will be ok but it means she won’t be able to help Susan as planned. So on Saturday we worked with the others and thanks to everyone’s ability to adjust and my ability to adjust we are able to fill the gap and relieve Susan’s deep hearted concern and that of the person who had sorrowfully withdrawal. We will miss that person a wish her the best in her health and recovery as well. So the time ticks down, we leave for Minnesota Wednesday morning at 6:30 in the morning so we can make an appointment in the afternoon at the University Hospital at 1:30pm. The Journey starts soon.
Susan was released from the hospital today and is feeling better. She still has the pain from the pancreatitis, that does not go away but it is manageable. If you ask Sue what her pain level is on a scale from 1 to 10 during a flare the pain level goes to an 8 or 9 and maybe close to a 10. When the fare subsidies and things are normal on a daily bases the pain level is 4 sometimes on a good day a 3. For this reason, it is hot hard for her to be looking forward to the day the level is 0.
Susan is still in the hospital. She is having a difficult time with some of the Doctors. Florida Hospital, a Christian based faith hospital who prides themselves on a motto “The Healing Ministry of Christ” is doing just the opposite. Yesterday they brought her to tears. They did not comfort her, they did not help her, they accused her of using drugs that she was not and they made attempts to send her home while still having her pancreatitis attack. She did admit to me she was having some reservations about the surgery, but this attack made it clear in her mind that the TP-IAT in a few days was definitely her best choice. Her GI Doctors, who understand her situation FINALLY came in and helped her, got her the correct pain medicine dosage and comforted her. When the Hospitalists came in to see her she asked him if he read her file before coming to see her and he admitted that he did not. If he had looked at the notes from the GI doctor from the day before Susan’s mental anguish would have been averted. If you go to Florida Hospital be prepared. The hospital is a beautiful place and some Doctors are very good, but they DO NOT communicate among themselves. Your care will be left to one doctor, and hopefully, it won’t be in regards to the pancreas unless you have the GI doctor, because the general hospitalists have different agendas.
Susan’s pain seems to have leveled off, which is good. The CT has shown no difference from a previous CT which is good. She has gastritis and perhaps some bleeding at one of the anastomoses (intestinal connections from the whipple surgeries). If that does not slow down or stop they will go in with a scope and cauterize it to stop the bleeding. We think that is healing with an increased dose of Protonix (Ulcer prevention medication).
Sue still needs lots of prayers and support. She has lots of friends but she is alone in this fight as strange as that sounds. Pancreatitis is not uncommon but not as widely known like heart issues or other major problems, so confiding in someone or getting support from someone who can relate to her exact experience is not abundant and forthcoming. It’s hard enough for Susan to deal with her illness but to have to deal with some doctors who are supposed to care for her and don’t just adds insult to injury. God Bless Susan and help her.
Yesterday Susan was admitted to Winter Park Memorial Hospital for acute Pancreatitis. This flare up has been building and she was hoping she could ride it out but as with all her flares the pain became too much for the medication she has at home and she had to seek more help. She was very frustrated because this time as always she has to go through the ER and the Doctors just don’t get it that she has to get help. At first they wanted to do a CT and if it looked ok give her some pain medication and send her home. I have to say she was really good because she stood up to those Doctors and told them “if my pancreas was ok, then why would they be taking it out in two and a half weeks?” once they thought about that they started to realize she is having a serious pancreatitis attack and began treating her better and admitted her. This attack is at about the 4 to 5 moth time she should normally get one and this time probably a little bit more so as the time gets closer to the surgery. One thing we learned is that stress can bring on attacks and the stress of a surgery is definitely something to and minimize if you can. Keep sue in your prayers that this passes quick so she can get better soon and out so she can enjoy some tome out of the hospital before going into the hospital again.
Hello,
There are 16 days until the surgery. Preparations have been underway. But thing have been going on for months. Things really began in June when Sue visited all the doctors and was tested to see if she was a candidate. Just before the 4th of July she found out she was accepted and that is when things began. A lot of work started and it is more than I can describe here. Sue took on all this and I know why, primarily to stay focused and to take her mind off the fear of the massive complex surgery ahead. Sue took on a go fund me to help with the $20,000+ expense we expect by the time things are all said and done with airfare, car and housing, medical, prescriptions, dietary and so many thing we just don’t expect or completely know about yet. Sue has been into every corner of this doing it with diligence beyond my wildest imagination. She is determined to show her intent to make this entire thing succeed.
Yesterday we invited our parish priest over for dinner. Father David came and we had a great visit. We talked about many things and of course Susan’s Surgery and our trip to Minnesota. It was a great evening. Sue made a great dinner and all this despite an attack of the dreaded pancreatitis. Sue struggles but keeps going and is an amazing person. I am glad to see this opportunity come that she so richly deserves. And of course a tremendous thank you to all those to have and are praying for her and helping an any way even if it support by wishing her good luck. The evening ended with Father David anointing Sue and blessing her with special oils in a beautiful and special Blessing for the sick.
Today we start the Blog. Welcome to Susan’s new website. I’m Joe her husband. I will be entering things for her when she can’t. I created this for her so she can tell her story. Please read it and know the difficulties she has been through and the great gift God is giving her with this opportunity. Pray for her support her each day as I do.