Author: Joe D'Aulerio

Well, 3 years ago today we (the whole family) were all at the hospital in the waiting room, worried. The surgery was in progress and it was the longest day of our lives. I always tell Susan when she has a surgery, the surgery is the easiest part for her and the hardest part for us because we watch the clock seconds tick on, wondering how it is going while she just sleeps peacefully and like a baby. Afterward, it switches. We are relieved and she has to deal with the pain and healing.

Today, three years later Sue is doing well, a true TP-IAT Champion. Tomorrow we head to Minnesota to see Dr. Bielman and all the others. The day is booked full with appointments. Last year Covid kept us home but this year we get to once again thank those great folks for giving Sue a new lease on life, and for the care and love they shared three years ago. We hope to have good news as they check everything and say she is continuing to do great.

About two and a half months ago Sue developed a hernia on her abdominal wall. Keeping in touch with others, she found out that this happened to many of those who had the TP-IAT as well. The surgery to repair the hernia was fairly routine and done locally. She has healed well from that but she is limited in how much weight she can lift now and that is tough because it is less than our 8-month-old granddaughter weighs. But as we have said in many other posts, listen to the doctors and do as directed. They know what they are doing and what they tell you will be the best advice to make your TP-IAT or any other medical care a success too.

For now.

As Sue continues this trek toward better health, hopefully, this venture can be an inspiration to others. We continue to update how Sue is doing from time to time so others can see a view of what the TP-IAT can be like. She is a remarkable person and continues to do well. Lately, her sugar levels have been fluctuating. The doctors told her ideal is between 90 and 165. Keeping it below 200 and above 70 is very important. The high end is not life-threatening but below 60 can be if not corrected quickly. Sue has found out that stress can greatly influence the sugar levels for her, and diet is also important. Skipping meals or getting too lenient as things are going well can also influence the sugar levels. The major effort is to keep the sugars between 90 and 165 because this is the ideal environment for the transplanted Islet cell to function. It makes it just right so that they are not over or under-taxed to produce insulin and risk failure. Sue has a FreeStyle Libre system to monitor her sugar. There is a button type of attachment that she places on the back of her arm and it stays there for 14 days. It constantly sends information to a small pocket device that monitors her sugar levels. If it goes too high or too low, it alerts her. She can take the necessary steps to get the sugars back in range. The device can also test her blood from a finger prick to verify a reading if necessary. This has caused her not to have to make so many finger pricks every day and she can enjoy her life better not having to worry about what her sugar levels are, and she can check it any time. As time goes by technology improves and the procedure is refined to give the person all the best chances, but the key is to follow the doctor’s instructions and recommendations and Sue does that to a T’.

It has been a long while since we made an entry. This has been good because, for the most part, Sue has been doing very well regarding her TP-IAT. Lately, she has cut back on her enzymes. Sometimes if she forgets it is not the end of the world, but in honesty, she has been doing an amazing job of eating healthy things. Not only has it helped her digestion system but her blood sugar. She runs between 80 and 110 daily with between 8 and 10 units of glucose a day in the evening. No pain except what she is told by her GI is an adhesion acting up, but that tends to be short-lived. For the most part, Sue continues to be remarkably well and continues to amaze her doctors all the time.

To also update you on a couple of other things, Sue had a reverse shoulder replacement in July (yes amid this Covid thing. She did very well, was out of the hospital after a week, and has completed her physical therapy. The pain in her arm is gone and the mobility and motion range is phenomenal. She blew her orthopedic surgeon’s mind also with her remarkable progress and recovery for that as well.

The last thing that we should mention is something we are sure is on the mind of any TP-IAT patient or potential candidate, is Covid. Sue did contract Covid (we have no idea how because she never goes anywhere) in mid-November. She was on the phone with Dr. Beilman to quickly engaged her to advise her on what best to do and what could happen, and also when to look for additional help, and of course, he was available if any doctor needed his input. Sue had some symptoms. A temperature but it stayed under 101.4, coughing with some minor congestion and a sinus irritation that has turned into a serious sinus infection that is only now beginning to dissipate, and a headache. By the Sunday before Thanksgiving, Sue was on the upswing and cleared to be around other people. The rapid blood test showed she had antibodies in her system to fend off the Covid virus. This was an amazing thing because without a spleen which makes the majority part of antibodies in the body for fighting off infections and viruses she was deathly afraid of the consequences this virus poses. Now don’t think we are taking this virus lightly because we are not, but the body is a remarkable thing and thank God she came through pretty good. Sue is still susceptible of contracting it again so she still takes all the safety precautions she and everyone should be taking.

The one point that I will say that is the most important thing regardless of the surgery or other things you deal with medically, always listen to the doctor and do what they say. Sue is a stickler for that and as you can see, she does well. Not all may be as fortunate as she is, but in order to help the doctor take proper courses of action, they need to know the patient is not throwing them a curve by not doing what they say.

Have a happy holiday.

With the trip to Minnesota behind us and the stress of the travel over I wanted to let all know that the sugar level numbers were all normal today, between 108 and 123. While we are not doctors one thing we know is that the environment can change the numbers. It can definitely be what she eats which she watches out for all the time, but we also know now too, stress can be just as much a factor. The flight delay coupled with anxiety to want to get home and relax may have been the cause for the high number yesterday. Sue will check this out when she next sees her endocrinologist. The good news, Sue is doing great her doctor visit was fantastic and today things are back to normal! Onward to tomorrow…

It is time to head home. We know it was going to be a long day. After church, we left for the airport. Things were going well. We boarded the plane on time and ready to leave WHEN!  Suddenly there was a problem with the aircraft. Off the plane we went. No time was given as to when we would leave and this started the stress levels going up. With this Sue started feeling off. Her vision was off and bothering her. After a 2 hour delay, they told us we are going to start boarding again in 45 minutes. Sue wasn’t feeling well so she checked her sugar level and it was 209. That was a very high number and it explained the vision issues. She gave herself a couple of units of Novalog to bring the levels down. Once we boarded the plane she checked her sugar again, it dropped to 171, still a little high. So, 2 more units were administered and about an hour later the numbers were 166. The trend was dropping. Our great trip has hit a bump, but Sue knew what to do and that is a great thing. She will need to follow up on Monday with the endocrinologist and monitor herself closely and hopefully back on the good side of the numbers again. We finally arrived home at 12:30 am and another check and her level was 99. The day was finally over…

 

Up at the crack of dawn, literally, we had to be at the hospital by 8 am to start the first round of tests. It was a much better trip to the hospital this time. One year ago we did not know what to expect except a very difficult time. Today we thought back to that day with just a little apprehension, but this time with much greater expectations. Wow-what a difference a year makes. We got to the hospital and Sue began with fasting blood tests. She had some difficulties because they needed 8 viles of blood and, lol, Sue’s body did not want to give that much. They got what they needed and the next stop was a lab for what they call a boost test. She drinks 2 containers of boost and then more blood work. This will take a couple of hours so we sit around and enjoy watching the clock tick off minutes, slowly… Just like the surgery a year ago but without the trepidation. By noon, all the blood work is done. During this time, Sue also had a representative from a study she is involved with help her with some questionnaires. Finally off to lunch. At 2pm we were headed back to the hospital to finally see the surgeon Dr. Beilman. Sue was very nervous because she did not know what to expect. She was excited because she was very happy to have him see how well she was doing or so she hoped, but she knew he would have would confirm her progress. The moment arrived Dr. Beilman entered the room and boy was it great!

After a few minutes and lots of excitement to see each other Sue finally got to tell Dr. Beilman everything that she has been doing for the past year. All the progress about her health and the great news, only 4 units a day of insulin! She also told Dr. Beilman that she could never really thank him, except to let him know that she is putting her life to good use by helping others and Dr. Beilman said that is the best thanks he could ever get. We had an opportunity to ask questions and get answers but mostly about things like what exercises are good for her and how to know any bad signs. When she hurt her knee her orthopedic doctor wanted to give her steroids and she knew that just would not be good. She did the right thing by keeping away from those steroids. Dr. Beilman did say if it had to be done she should reach out to him because it would mean a lot of special intense care. Dr. Beilman did an exam and for a moment there was some concern as he checked her abdomen, he paused. Then he smiled. “I see you have been exercising, I can actually feel your aortic vein and it is just right.” Had it been enlarged it would be a concern but for Sue it was good! One of the most important test results was the C-peptide that Dr. Beilman said tells us just how well the Islet cells were doing. A blood value of 1 meant they were working a 4 meant they were working perfectly. Dr. Beilman really was happy when he told us they were 4.3 to 4.4 WOW! An excellent number, better than he could ever expect. One final picture of the three of us, then a very sad and tearful moment but only for a little while, like another year, the visit was over. This year went by so quick but now we can go home happy and excited.

The nurse, Louise, came in to follow up and finish some paperwork. Everything went really well. With these results, she was done. Nothing more needed to be done and we were free to go.

The next two days were days to relax and for us to spend some time together. A chance for us to really reconnect and look forward to getting on with our lives.

The exam

Time to talk and ask questions. Dr. Beilman was so happy as he listened to Sue tell him what she is now able to do as she helps others thanks to him and how he helped her.

9-11 Travel day to Minnesota. What a day to travel, right. The safest day in the world now, but we remember 2001 one and the lives lost, may God welcome to Him all who left us that day.

The day started out normal and was long. We left at about 1pm and after a stop in Chicago we made it to Minneapolis St Pau; airport and the hotel. Sue was a bit stressed and very tired. The trip was a little tougher than normal because of her right leg. Still bothering her but improving it made for a difficult but successful trip. We arrived at the hotel in Roseville by 8:30 and finally got some rest

One year ago today as I write this, Sue was beginning her surgery. I remember that day as if it were just yesterday. Last year if you told me she would be just about insulin free and doing great I would have said “I am praying for that” but deep down all I worried about was Sue getting through the surgery with no issues. The future, today, was way far away and a dream. Today Sue is doing great and she has a new lease on life. The past year was tough at times but as I watched Sue and her progress I am truly amazed. She met every challenge did what the doctors said to do and overcame every obstacle. And, that is the key, do what the doctors say and she continues to progress and look at a great future. Sue has kept in touch with a few of the others who had the TP-AIT around the time she did and some more recent. The one clear thing is that every case is different. While some have not had the fortune Sue has, for each the success is measured not by the amount of insulin they need but rather on the outlook of their life ahead and that is what this is all about, LIFE. This surgery becomes a miracle for all those who have it because without it the future does not look good. Repeated hospitalizations, constant pain and even in some cases the length of life can become a question. Remember for Sue trips to the hospital every 4 or 5 months and a constant pain level and a bleak future as her pancreas was slowly developing issues that could have one day been life threatening. All this painted a picture that also affected her spirits as well. Today all of the pain and the hospital visits are gone, Sue is a new woman. She uses only 3 to 4 units of the long lasting insulin a day with the hope of that going away eventually. Sue’s new life has energized her into passing her good fortune, graces and blessing on by taking on a job, and the work she does is amazing because twice a day she serves as a crossing guard for school kids. It is impossible to repay everyone who prayed for her and supported her other than to put all of that to good work. What a better way, to ensure the safety of children as they go to school every day. It has become a second mission, the first was to get through the TP-IAT. She also volunteers as a victims advocate helping those who are facing the sudden loss of a beloved one or facing trauma from sexual abuse. But that is not all, she is a volunteer for the Sheriff’s office as a Citizen on Patrol where she is out in the community assisting deputies and patrolling to discourage criminal activity. The operation a year ago was the scariest time for Sue in all of her life and for us, her family too. The future was a big question and the insecurity of the decision to have the surgery was very stressful, but today I can say it was all worth it especially for Sue. It is easy to say that now because of the success she has had but hopefully, as she is an example of the good that can come, it can also be an inspiration to those who are facing the same choices and decision she had a year ago.

As this one year anniversary comes and goes we say again a most gracious thank you to everyone who prayed for her and supported her and all those at the University of Minnesota hospital who cared for Sue, all the Doctors who looked after her before and after the surgery and especially Dr. Beilman, may his care and skill be rewarded and Gods graces come upon him as he continues his work helping others to new lives as he did for Sue.

Look at this Champion today! Yea!

Holiday Health Update

Well Merry Christmas and Happy New Year. The holidays are upon us and a couple of things to report. First Sue is doing well, but down a bit because of a cold, or what seems to be a cold. The symptoms are that of a common cold but because she has no Spleen what would be something brief has stretched out. This event started just before Christmas. A sore throat and stuffy nose developed. She did a lot to make sure no fever developed, if that did, a doctor would have needed to be called in. Just after Christmas, the sore throat moved down into her chest. It has been very hard to break up and treat this. Only after taking Mucinex DM did things start to improve and let me say it is important that she gets the best medication available regardless of the cost. Less expensive medications are also weaker and require more to achieve what is needed to help combat even something as simple as a common cold. As the days continue and she does not seem to get worse we believe this to be a sign that any infection is dissipating. Today she is still feeling off but slightly better. She expects this to last at least another day probably two, but the good things are no fever and even though she has no Spleen her body is fighting off this cold.

We also wanted to give a short update on the continuous glucose monitor or CGM that she has been using. This has proven to be a real asset. The low alarms are great in alerting her in advance that she needs to do something. A quick check either verifies the CGM or alerts her to pay attention should it drop further. Two occasions occurred that showed her below 65 and she was able to drink some apple juice and bring things back into range quickly. I am also alerted when things drop or something needs attention. This is good if in case the reading is really low, I can come to her aid, but so far she has been good and on top of things.

Sue is proving to be a TP-IAT champion. She still has no pain and that relief made Christmas a greater joy.

For now.

Sue on Christmas Day, WOW a great feeling NO pain!

Doing Great

We are home in sunny, warm Florida (LOL), but in all fairness, the people in Minnesota were great, and for that reason, we hated to leave. We made it home after a tiring, long trip. We lost an hour coming east.

Today we went to the Endocrinologist. This is the last step in the three month follow up period. Lots of blood work was done and we got terrific news all around. Where do I start? First a reminder that in Minnesota, doctor Beilman lowered the long-acting insulin 2 units at night to 6 units. He was really happy with Sue’s progress. Well, the Endocrinologist here is also excited and happy at Sue’s progress as well. Everything is based on glucose readings over the past 3 or 4 weeks. Remember, the target numbers are between 80 and 120 and not to go below 70 or over 180. Most of the readings have been between 70 and 120. There have been a few lows in the 60’s and a couple in the 50’s. These low readings, while a bit dangerous if not addressed, are the strongest indicators that the transplanted Islet cells are working and getting stronger. They are producing insulin as they are supposed to. Doing this means Sue needs less Lantus. The doctors in Minnesota told Sue in the beginning that she had great numbers in the tests done in June and we see that they are right. For those who read this and are considering the TP-IAT, listen to the doctors. From the start and all the way through, Sue did this and with all the prayers, everything has been very successful. See the living proof (below)!  If the numbers are not right don’t despair. Success is measured not only in being insulin dependent free, but rather the improvement and quality of the life and having the ability to be pain-free from what that evil organ can do. Today the doctor lowered Sue’s night time dose of Lantus 2 more units to 4. Also, the reports from all the blood work are in and everything except the hemoglobin is just short of perfect. The hemoglobin is slowly improving. Oh, and the platelets, they are in the upper 600’s. 400 is where it needs to be. In about two and a half months she will have an ultrasound done to check the status of the blood clots but with the blood thinners, they are expected to resolve.

Things are going overwhelmingly well. I am so proud of Sue because of her determination and willpower to make this work and we are both eternally grateful to the doctors and for all the prayers. It takes a lot of things to make this work and for good things to happen. Look, the smile says it all!

“WOW! I did it!”

 

The next update will be in a couple of months after the ultrasound unless there is something out of the ordinary to share.