Category: My Journey Blog

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 4^th 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.