Author: Joe D'Aulerio

Sue just had her follow-up visit with Dr. Beilman. The visit was terrific. Over the past week, she has been doing really well. Eating and drinking and getting out of the house, although the weather is not our kind of weather. Doctor Beilman gave her a clean bill of health and the green light to travel, so it is homeward bound to Florida! The doctor said that an ileus happens to about 1 in 15 people. It can be something quickly addressed sometimes it requires more attention, for Sue, she needed the extra attention. Looking toward the future the prognosis is good. She can get back to all her activities, Some deep physical massage therapy will help and is recommended and he suggested I go and learn what to do, this way when she starts to feel the tightening and needs some relief, I can help keep the adhesions at bay with the ongoing treatment. Our most appreciative thank you once again to Dr. Beilman. His knowledge, skill, and warm humble bedside manner has made this page in Susan’s TP-AIT journey another success. And to Emily our thanks for putting everything together to make this all happen our most grateful thank you as well. What a team!

Sue and Dr. Beilman 12-27-2022

Sue at the Sculpture Garden in Minneapolis 12-26-2022

Hello Everyone,
A lot has happened since the last entry. Susan was released from the hospital after her surgery five days later on Tuesday the 6th. She was doing excellent. Feeling good, the pain was diminishing, and eating well. The plan was to go back the next Monday and have the staples removed and head back to Florida on the 20th, three weeks after. Well, the next day after getting out of the hospital she started getting nauseous and started throwing up. We contacted Emily and Dr. Beilman. Doctor Beilman said this was an Ileus. Sleepy bowel syndrome. They helped us get Zofran to help control the nausea and with luck, it would pass in a couple of days. For Susan, this was not happening. Things were getting worse. We tried to get out so she could walk around hoping that might help, but that venture was cut short due to the increasing Nausea. Doctor Beilman stayed in touch with us every day. Sue had developed a lump under her incision which Dr. Beilman knew about and said would eventually go down. On Saturday while sitting in a lounge chair her incision started leaking. A clear reddish fluid. The lump started draining which the doctor said was ok and a good thing, just keep it bandaged and clean. I would say about a cup and a half of fluid drained out. Having a really good Doctor who knows what he is doing stayed calm and explained everything that was happening was really good for me as her primary caregiver I was able to stay calm, not worry and support her 100% and that kept her form worrying and making things more difficult. Like when Sue had the TP-IAT It takes a team to help the patient. Support, care, and all the assistance you can give, really help. Without that the recovery is harder. On Monday, day 11, after the surgery I was able to see that Susan was not getting better and that she had lost enough weight to be very noticeable. I asked Dr. Beilman if there was something IV she could have to give her nourishment. Since day 6 when this started, she was having nothing to eat or drink (NPO). He said it was time to get her back into the hospital. A CT showed A liter of fluid in her stomach and an NG tube is needed to remove that. Sue does not like an NG Tube by any means but by now she said yes let’s do it. She was admitted on Tuesday. Shortly after, the tube was inserted and immediately 400mls came out. Within the hour 300 more through the tube and by nightfall another liter. That night at least another 600mls more. A TPN (IV Nourishment) was started also. The next day, Wednesday, the nausea started to subside, and by evening she was able to walk around the hospital. Walking was important. Moving around is the best way to stimulate the bowel to start working. On Thursday there was gurgling and by midday, gas was passing and she had a bowel movement. They did a barium test starting early. They put barium down into the stomach and 8 hours later they take an X-ray to see the progress. This will show any areas of concern. On Friday the results came back, and everything was clear. No obstructions or blockages. Doctor Beilman’s diagnosis was spot on. His experience and skills tell him what to do and he does what his experience tells him but most of all he involves the patient and the family in the process. For Sue, she can handle pain but the nausea is very difficult. Also, having a close trusted advocate to help and support her is invaluable. She makes the decisions but in a difficult condition having trusted people around her helps her know the right decisions are being made. And I have said it before, she does everything the doctors tell her to do to a tee. This helps the doctors too. They know that she follows directions and anything further to be done is not because they didn’t. The doctors need to have faith and trust in the process and the patient as well. On Friday, yesterday, day 15, Susan had turned the corner. She looked better, the nausea was totally gone she was having good bowel movements, the NG tube was removed (YEA), a TPN is building up her strength, and she is able to keep clear liquids down. She is restless which is good because she moves around, and it becomes the first sign she is becoming her old self. Getting mad at me for saying dumb things is second and that is happening too, when she starts cleaning up the room and asking for a mop, then it is time to leave, and I think that might be on Sunday or Monday. She is a great woman, strong, resilient determined, and most of all my beautiful Bride!

Hi Everyone,

Day 4 after the Surgery and Dr. Beilman came in a little while ago. Sue has been doing great. Once they got the medication “balanced” as they say she really started making progress. The pain medication team was on top of this until they got things right. So, the pain slowly subsided (but was still quite prevalent) and the medication was working without making her really tired. Tubes have been coming out, NG, Catheter, and Oxygen. All part of the progress.

Susan’s progress has been phenomenal, and I have been able to see the changes by the hour. It takes a little bit for some things to progress and the doctor really knows his stuff. Starting and advancing the diet for example, when you start with clear liquids to soft foods then a full meal might be hard to understand but they have a reason for when it’s time to change and in the long run, it pays off. The last thing they want to do is go too fast and have you regress and not feel well.

So, as I said, Dr. Beilman came in today and saw the tremendous progress. At some point, the next step is to continue the recovery progress at home because it can be hard to get rest with hourly or bi-hourly interruptions. Dr. Beilman asked Sue if she thought about when she would like to go home. She said as she feels right now tomorrow looks like a great possibility and Doctor Beilman agreed. As he sees it there is nothing that would indicate otherwise. Getting off the pain IV and move to oral, and she can start to switch over from the hospital care of her blood sugars to her Dexcom system. This can begin tonight so that they can make sure the pain control is working and the sugars are stable. Then at home, as she feels better wean off the pain meds over time.
So, one more thing that I know means Sue is ready to go home. When she gets up and starts to clean her room and make the bed, it’s time to go. Any longer and she will grab a mop and clean the floors too, now that would be sad because some poor housekeeper who probably needs that minimum wage job to feed her many kids and heat the house will lose their job. And, we don’t want that so, home James!

More about Sue’s recovery progress in a couple of days

Hello,

I have a lot to catch up on so here goes. First, Sue is in the hospital. She had surgery by Dr. Beilman to remove the adhesions. And, she had a fairly good night. She is ok but it is painful and at times I can see that the pain works through the medication. So what has happened since my last post?

Sue has been experiencing pain when she eats. The adhesions restrict the movement of the bowl and so as food passes through the small intestine it hurts because the adhesions restrict the bowel. Sue decided to go with the surgery as I discussed in my last post. During these times it is very difficult to schedule anything because everyone is trying to get things done before the end of the insurance year. And, to get the doctor to find a free spot and OR staff to make things happen takes a lot of determination and Doctor Beilman’s medical administrator, Emily, is amazing at getting things done and set up. So the surgery was set for December 1st. We live in Florida so Sue arranged air travel, another Airbnb, and a car. When you have surgery the process begins a few days before with testing and blood work. Susan got some things taken care of in Florida and finished up here in Minneapolis the day before the surgery. One thing I suggest, if you travel and need to be at a particular place at a particular time build in extra time for your trip. The last time a hurricane delayed things and this time snow did. Coming from Florida the white stuff and the cold are a bit of a shock when you are not used to it and it has been almost 30 years since we dealt with it. Anyway, we got here, she finished her preop tests and everything was a go. Doctor Beilman is an amazing doctor. He met with us and explained everything to a tee, answered all our questions, and eased some of Sue’s tension. As many surgeries as Sue has had she still gets stressed when she has to have another surgery, even though she knows what to expect. She is very good at knowing her body and she knows when and how to make a decision to help keep her in good health if she believes surgery is the right way to go then she is right and she makes the decision with confidence. If you have a doubt about a decision like this, then you really need some time to make sure it is the right thing to do. Having a doctor like Doctor Beilman who explains EVERYTHING is a big help to build your confidence either way. Doctor Beilman will not operate if he feels it is not yet the right time. That makes him a very, very good doctor!

Surgery day and it was scheduled for 1:40 in the afternoon. Planned for 2 to 3 hours but it could take longer. Like everything else this trip, the surgery was delayed till 3 for hospital reasons but it did start. The surgery lasted almost 4 hours and then 2 hours in recovery. Definitely less than the TP-IAT but still a long operation. When Doctor Beilman came out he told me everything went well and that she was on her way to recovery. I recorded our conversation so I could play it for Sue when I saw her. I figured it would be better cause it would lose something in the translation if I told her how things went. When I did see her she was in a lot of pain. They had to give her more medication and that made her sleepy too. Sue is basically on a minimal amount of insulin but they gave her an insulin drip. This bothered me because she may use 2 to 4 units in a day and they were going to give her 1 unit an hour. They said they would monitor her sugars every hour. I know they know what they are doing but the insulin would cause her to go low and if that happened quickly on the pain medication where she did not feel it, well what would happen an hour later when they come in and find the insulin 40 or below? So they gave her dextrose to prevent the lows. Sue was a bit upset that I was worried about this but I know Sue and her sugar levels, they do not. They thought she was a type one diabetic and with the islet cells working that is not totally true. Sue was under a lot of medication and sleepy and I don’t think she was cognizant enough to think about what was happening. It is important for someone to be there as an advocate for the patient and to help if they can with the care.

So the Doctor told me that she did very well in the surgery. It took every bit of 3 hours to remove a lot of adhesions and they were all around her small bowl and left side. He did accidentally cut a portion of the small bowl and had to do a connection but it was in the part of the small bowel where the bile comes from the liver. So the impact was very minimal in the grand picture. It happened because that part of the bowel had grown to the adhesion. But it’s ok. For everything else, it was just as Doctor Beilman expected and he felt very confident that for a while Sue will feel much better. There is no way of knowing how things will be in the long term, only time will tell.

So I am sitting beside her the day after the surgery and it’s about noon. Since I have been here she has improved. They did cut back the medication because it was affecting her breathing but it is for the better. She is still groggy and sleepy but that is the medication still.

Well, that is the up-to-the-minute happenings of Susan’s TP-IAT venture. More in the next day or two.

Hello Everyone,

Today marks the 10th anniversary of Susans whipple surgery. Performed at Florida Hospital in Orlando by Doctor Arnoletti, Dr. Arnoletti did the procedure in a remarkable way. The surgery was standard but the way he changed the anatomy made it very easy for Doctor Beilman to perform the TP-IAT. That sounds odd, but it made Susan’s recovery much easier. A TP-IAT will change the top of the digestive tract but when a whipple is done first the changes are already made. When that happens then for the TP-IAT the changes become adjustments. In Susan’s case the way Dr. Arnoletti did the changes, Dr. Beilman did not have to do any adjustments. The normal recovery which may require a feeding tube was not needed and the recovery was a little easier. Hats off to Doctor Arnoletti.

Several things are moving forward, the adhesion surgery has been scheduled for December 1st and our travel arrangements are set. Another Airbnb is on tap as it is the most economical. More as we approach the surgery date.

Something that Susan has come across that has been very promising is related to enzymes. One thing that Sue has battled with for some time now is the enzyme supplement. Without a pancreas, an enzyme supplement is absolutely mandatory because it replaces the missing enzymes the pancreas secreted to digest fatty foods. There are a few different kinds and the dosage all become a balancing act to get things just right. In Susan’s case this was very difficult, it hit her hard because when she ate for some reason, no matter what she, and the GI doctors, tried it was not right and often resulted in diarrhea. Recently, as Sue was looking for an economical alternative, she came across a natural enzyme called ViTAL Nutrients Pancreatic Enzyme 100mg (full strength) dietary supplement. The cost is considerably less and so far the diarrhea problem has gone away. Something we need to be clear about is that we are not recommending this. You should ALWAYS consult your doctor. Together you and your doctor would determine your enzyme therapy and if this is right for you. For Susan, it seems to be a good fit right now and over time we can share her experiences as she works through this issue.

Hello Everyone,

So we spoke to Dr. Beilman and his review was that the only thing that can be done is surgery, or pain management for the longer term. Dr. Beilman reviewed the numbers again and he did confirm the 40% success/relief. While there might not be an effective success/relief he did correct me and say if the adhesions did come back they would not necessarily be more intense. As it looks now pain management would not be a desirable choice so surgery looks like the best option.

There are 2 dates open in Dr. Beilman’s schedule Oct 21 or Nov 4th. This surgery is a major surgery but far less than the TP-IAT. We are looking at Nov 4th so that we can have time to make all the arrangements.

Dr. Beilman did give us the go ahead to return home to Florida. Thank goodness because it is getting cold here. We fly home tomorrow 🙂 More to come.

Joe

Hello Everyone,

We are still in Minnesota and waiting on a chance to talk to Dr. Beilman. So far Sue had the mixed meal test and the GED. Both tests were normal. This is good in the respect that the upper portion of the digestive system is ok and there is no indication of gastropareses. The bad news is that we think this points to adhesions. Doctor Beilman said that would mean a major surgery to correct with only a 40% chance of long-term success/relief and a greater chance of more adhesions in the future that could be more intense. Something Sue really needs to think about.

More once we talk to Dr. Beilman.

Joe

Hello Everyone,

Well, we are back in Minnesota, the weather is ok, but a bit chilly for Floridians like us.

So, we are here for Sue’s regular yearly post-surgical checkup. This year, however, there is an issue. Sue has been having abdominal pain that developed in mid-September which seems to be related to eating. The local GI ordered a CT of the abdomen and the report back was “no acute intra-abdominal abnormality” (they saw nothing). Sue knows her body and that was hard for her to believe. The hurricane (Ian) that hit Florida delayed our trip to Minnesota by a week. We made out ok considering the eye of the storm went right over us (again, the first time was Charly in 2004). When we arrived in Minnesota, Sue had her blood work done, her Boost test (mixed meal test, officially) and the CT was delivered to Dr. Beilman. Amazingly ALL the blood work was PERFECT! This was a bit of relief but did not give insight to the pain. When we met with Doctor Beilman the first thing that I have to say is that this doctor is amazing. He had tremendous compassion and concern for Sue. He listened as Sue explained what was happening and clearly understood her situation and frustration. Dr. Beilman examined Sue, which is something the Florida doctors have not done. It is very difficult to find good doctors and a lot of times the doctors she sees are familiar with the TP-IAT but don’t really know how to handle any matters that develops related to it. Thank goodness Dr. Beilman remains your doctor for as long as you need him. When the physical exam was complete Dr. Beilman began going over the blood work. Best I can say is that he expressed to her that the blood work as perfect as text book results. Last year there was some slight concern about the Islet cells because the peptide numbers were down a bit, but they are back up to normal this year. He said they are working perfectly. Dr. Beilman was very impressed with all the blood work results. Then we moved to the CT. The doctor brought it up on the screen and began to review it with Sue. He explained what we were looking at and commenting on what we were seeing. The most significant thing that he saw was that Susan’s stomach was full of food, liquid and some air. To Doctor Beilman this was a sign that something may not be right. Sue did not think she ate before the CT because she did not want to have a bathroom call during the test. To Doctor Beilman this was unusual and for him to know better what the problem was he needed a couple more tests. The first test was to check how well the stomach was emptying. Sue needs to eat radio active eggs and they do scans to see how quickly the eggs pass through the stomach. The next test is an EGD, where a scope is inserted, and they look at the inside of the stomach and down past the stomach at where the intestines were modified during the operation (now four years ago). This will tell if there are any abnormalities (ulcers) or restrictions. Both can be addressed to a degree with the endoscope if there are any. Doctor Beilman did not want to speculate what the problem was but he shared some thoughts what it could be. Since there was food in the stomach there were a couple of possibilities. Gastroparesis where the stomach muscles do not work properly or a partial blockage reducing the flow. One other option that is a possibility with Sue is adhesions. During Sue’s surgery Doctor Beilman spent 2 to 2½ hours working his way through adhesions from previous surgeries including 2 c sections years ago.

So, as I write is update we sit in the hotel waiting to the first test tomorrow. Eggs, LOL an appetizing meal full of wonderful radiation. And Tuesday the EGD. That will be more important as those results will give a good picture towards answers to the questions.

I will add an update when we know what the next steps are. Till then be safe and stay well.

Joe

Sue by the steps at the Clinic on Fulton Street 10-5-22 (we take a picture here every year)

Well, it has been a while since my last post and that is because things have been good. Sue is doing very well with regard to her TP-AIT. Something to mention that Sue deals with almost on a regular bases is her sugar levels. Sue is using the Dexcom system to monitor her sugar levels and it works GREAT! In fact, I can monitor her sugars also. Sue still injects about 7 or 8 units of long-acting insulin daily. She just can’t get off that. Sue’s sugar is doing pretty well but it does go low more often than I guess it should. Sue is hypoglycemic so at times her sugar levels can drop. having the Dexcom monitor no matter where I am at I get an alarm. When I do I can check on her. Usually, she has already been alerted and is addressing it and she tells me. But, if I cannot reach her then I can call 911 if I am not where she is and send help ASAP. Having someone alerted when the sugar goes low is a great safety feature and gives us both a little ease to make sure Sue is looked out for.

Something else that Sue deals with is other things related to her body. She had a hernia at her surgical area from the TP-AIT. It required attention and surgery. Sue also needed shoulder surgery, a replacement, and just this past week neck surgery. When she goes through her life and the various things she deals with that causes her to need medical attention it becomes clear that Sue does experience her difficulties and the doctors recognize when she says she has a problem it is genuine, something that was not the case years ago before her TP-AIT. While some doctors do not fully understand the TP-AIT procedure they do recognize that Susan is truly experiencing a problem and they address it. Something else that we have to say that has been really amazing is that even after 3 years and 8 months Doctor Bielman and his team are still a phone call away to help, and the doctors who take care of Sue with her other problems have called the team especially to better understand what steroids can do to the Islet cells. And, this has been great to protect her cells but it does make other matters that steroids help harder to deal with. The Doctors are great they find ways around the problem of no steroids and things work pretty darn good.

I am so proud of Sue. She has taken every health challenge and dealt with it head-on. If it were me I would be a chicken and will avoid things if at all possible. Sue is a great person and role model to those who have doubts about investigating what needs to be done to stay healthy and deal with the curve balls they are given. And, Sue is great at staying positive which is very important to think straight make decisions and get well.

For now, this is the latest regarding the ongoing story of Sue’s TP-AIT journey.

We are in Minnesota getting ready to leave for Florida! The visit here was spectacular! Three years ago we came here with fear and uncertainty and today we have joy and excitement.

The visit started out with blood work. Lots of lab specimens. The clinic at the hospital is very efficient and this year very careful because of the covid. Masks are required and social distancing the rule.  After the blood draw, up to the third floor to drink boost (2 bottles of it), this test was to determine how good the islet cells are performing. Over the next two hours, it was back to the lab so the vampires and take more blood. The first hour should show a rise in blood sugar and the second hour it dropping back to normal. While waiting Sue was able to see the results from her first labs. Everything was on the button. PERFECT! It made for a slow day as we waited for the second blood draw. as time passed more blood work results became available. A1C was 5.7 – Excellent. Then it happened… The C-peptides which tell the function of islet cells first showed .07. Utoh! She thought the islet cells were dead! Sue was totally distraught.

We went out for lunch. Three blocks away was University Ave with lots of food shops. We went to a bagel shop got some bagels which sufficed for lunch. We walked around a little. It was Thursday and that evening was the season-opening football game for the University of Minnesota Gophers. It was kinda neat to be there among the excitement of the first football game of the year and the expectation by the students of their team’s anticipated win.

It was back to the clinic for a scheduled bone density test. This became another disappointment. The test could not be done. The Dexcom device that Sue has that monitors her sugar levels would most likely be damaged during the test, and she just put it on the day before, with no others to put on if this one was damaged meant the test could not be done. Now, this was getting to Sue. She spoke to her mother to tell her how things were going and together they pronounced the islet cells dead and buried. What was she going to do now, how will her life change yet again? So, to confirm her beliefs that the islet cells were indeed dead, Sue has been having serious lows with her blood sugars, like 40’s and a 38 for the past two weeks, and lows in the 50’s and 60’s for the past 2 months. So, they are dead, done deal… The afternoon stretched on more test results were coming in and the C-peptides second reading was 2.5. I did some research and found out that the range was from .05 to 2.7. Now we really need a doctor to explain this. Time ticked by, Sue was depressed and the next event which was the last for the day was late in the afternoon to see Doctor Beilman.

We were in the examining room. This organization is amazing. The family is welcome to accompany the patient(within reason I am sure). It supports the patient and eases the mind of the family knowing what’s going on and how things are. Doctor Beilman came in. It was so exhilarating and uplifting because he was just as excited to see Sue as we were to see him. Hugs all around (I know social distancing but at the moment…) and “so glad to see you’s” and the next thing Dr. Beilman said was Sue you look GREAT! Tears of joy filled Sue’s eyes. Then he said tell me how your life is going. Ok, this would turn into a book if I detailed this so for that I will leave it to Sue to write about in her own time. Sue filled Dr. Beilman in on everything. Low blood sugars, difficulties with her digestive tract, some pains here and there, and the hernia surgery. “Is that all? That doesn’t seem like a long list to me,” was Dr. Beilman’s exclamation with a smile behind the mask I am sure. Dr. Bielman examined Sue (see the picture) and then looked over her test results. The pains are normal as long as they are not in conjunction with constipation, the hernia is doing well and the fluid will go away. She can only lift a maximum of 25-30 from now on, but that’s ok, and then the C-peptides! The dead islet cells! Sue was tearing up, but to her surprise, Dr. Beilman told her they were excellent! Just what he expected. “You had a good load of islet cells and it looks like they are doing very well.” Tears of joy from Sue as relief overcame her got her another hug from Dr. Bielman. He knew she was so worried and that made the day. To help, Louise, one of Dr. Beilman’s coordinators was trying to set up an appointment with Dr. Bellin the endocrinologist to see about the sugar lows, but Dr. Beilman expected that lowering the Lantis (the long-acting insulin) would probably do the trick but he would let Dr. Bellin make the call. The data from the Dexcom was sent to her. That turned the day from sadness to complete happiness. The visit lasted 30 to 40 minutes but those were the best minutes of the day. We missed Emily, Dr. Beilman’s surgical coordinator, she was away for family reasons but we understand. Together Dr. Beilman, his medical staff of associate doctors, Louise and Emily are the greatest team. Team Beilman!

It was time to part. Again hugs all around and Dr. Beilman said he would like to see Sue again next year. Monitoring her progress I am sure is a good feeling for Dr. Beilman as well. To see how well Sue is doing is a great reward for him, as well.

The reason I write this much detail is because it is hard to find such a good doctor and Dr. Beilman is the best by all means. He knows what he is doing he takes so much interest in the patient and their lives as well as their illnesses and it is clear it helps him determining how he can best help the patient.

Doctor Bellin reached out to Louise and she, in turn, reached out to Sue to lower the Lantis by two units to 6 units per day. A remarkably low amount and a great indication of how well this TP-IAT is going.

So tomorrow we go home and Sue will be enjoying many good things each day worrying a little less because her islet cells are doing, great!

One sad note, the Gophers lost that night…

Dr. Beilman checking the surgical area.

 

The UofM Health Clinic.