Category: My Journey Blog

Sorry for the delay in this update. Dr. Beilman came out and talked to us. He was very happy and brought us some very good news. First Sue is doing very well. He explained about the scar tissue and as we expected it was from the previous surgeries.  He removed quite a bit and this should give her some relief from some of the abdominal pain that it caused until it reforms if it does. What was really good was that he did NOT have to do anything to her digestive system. He was thinking he would but because of a good job by the previous Whipple Surgeon, he was able to do the job he needed with minimal impact to her digestive system. I cannot go into the details (HIPAA rules) but he explained it to us and drew a picture which was very clear. (he said he wasn’t an artist but he did really well to get the message across) Let me say, if anyone is considering this surgery, Dr. Beilman is unbelievable. He knows his stuff and won’t do more than what needs to be done. Sue will tell you more when she is better. Ok, back to whats happening with Sue. Because of this good news what he expects is that instead of being on a feeding tube for weeks, he expects Sue to be eating in a few days (WOW that is AWESOME!). Now, this is me saying, this will change the dynamics of her recovery. She will still have a long road but he did say it won’t be as difficult as if she had had the Whipple which she already has.  There was more good news regarding other things that I cannot discuss because of the medical nature that was all just grand. In a few weeks, if Sue wants to add them to this blog for those who are following this as they prepare for or are considering this surgery, please know, the TP-IAT is more involved than just the removal of the pancreas and spleen. Always talk to the doctor as everyone has a different situation.  But for acute Chronic Pancreatitis like what Sue has, this is a life-changing option indeed.

The day has been long and dragging on. To see Dr. Beilman come out in the grand spirits he was in was a tremendous up lit to us. Sue is not out of the woods yet she still has several hours to go as they work to separate the Islet cells which will take 3 to 4 hours and then transplant them into the liver which will take another hour and a half. Then another hour to close. Then recovery and off to Intensive care. Sue won’t know about this news for about a day. But thanks to so many people and all the prayers God is listening. Don’t stop praying yet she still has a lot of serious hurdles to leap. After surgery, the next 24 hours are very critical in the recovery process. Keep praying.

Dr. Beilman telling us the good news about the surgery.


Dr. Beilman explaining the details of what he did via a drawing (sorry
the drawing has medical information so we cant display it).


A view of the board showing the time Sue is in
Surgery (D ,S UUOR 6:26) so far.

 

We just had an update from the OR, The pancreas is out! Sue is continuing to do well. The pancreas is on its way to the lab to have the Islet cells separated from the rest of the pancreas so that they can be transplanted into the liver. This will take 3 to 4 hours. Sue will remain in the operating room under anesthesia. She will be closed temporarily. We are now expecting Dr. Beilman to come out shortly and talk to us and tell us how everything has been going and how things will go as far as the rest of the procedure goes. Sue when you read this later you’re doing great I am really proud of you, hang in there the hard part is over!

We had another update from the OR. Susan is doing well. It is taking a little longer than expected to get to the pancreas because of scar tissue. This was something we expected and Dr. Beilman was aware of. Dr. Beilman is an excellent Doctor and has dealt with this before and knows exactly how to handle this. If anyone is wondering why there is scar tissue, this is from her many previous surgeries and in this case from her Whipple procedure done in 2012. I want to add, Sue spoke to the doctor who did the Whipple about removing the pancreas to get rid of her chronic pain. That doctor would not do a pancreatectomy, this (the scar tissue) is probably one reason why he was not comfortable doing it. With the skills and experience, Dr. Beilman has, I can’t think of a better person and I know Susan would be saying the same thing, we can’t think of anyone else we would want to do this surgery.

I just received word from the OR. The operation has started. Susan is doing well and everything is going well.

We just left Sue as they wheeled her to the operating room. We got to the hospital at 5 and they took her back to get her ready. We were a bit surprised because they had done the paravertebral block which is a spinal pain control system. We were originally told that it would be done once she was in the OR, but they did it early. We all met the doctor as he came to see Sue and he again gave us a run down about what he is expecting throughout the day. He will be coming out to see us once the pancreas is out in about 4 hours. For now she is in the OR going to sleep and then they get her ready for the operation.

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.

I had a great birthday yesterday.  Thank you everyone for making it so special.

I want to thank my husband, Joe, for creating this blog and updating everyone until I am well enough to take it over.

I trust God and I know that everything will be ok..

Jeremiah 29:11  “For I know the plans I have for you, declares the Lord, plans for wholeness and not for evil, to give you a future full of hope.”

I’d like to thank everyone for their support and prayers.  I’d also like to thank all of the kind people that are helping me out with coming to Minnesota, for dog sitting, for visits and prayers!

 

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.