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.
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!
It’s been a while since I’ve given an update. All is can say is that I am so blessed with my new life!
I’ve been taken off all of my twice daily insulin. I’m now on only 6 units of Lantus every morning. I don’t think that it will be long until I’m totally insulin free! What a miracle!
I still remain totally pain free.
I’m also doing something that I’ve not been able to do since 2012. I’m working part time with the Sheriffs Department as a crossing guard. I honestly thought that I’d never work again.
Attached is an email that I sent to my surgeon and nurses at University of Minnesota:
I just wanted to express my deepest gratitude to you, Dr. Beilman and the rest of your fantastic team! You are such a caring, compassionate and intelligent group of professionals.
Dr. Beilman has indeed given me my life back, where at times before the surgery, I had NO hope. He has given me both my health and sense of self worth back. For this, I will forever be greatful.
Today I accepted a part time job, after not working since 2012! I am a much different person both physically and mentally now that I have been given this miracle!
Thank you to ALL of you from the bottom of my heart! Your team has helped so many!
Please pass this in to Dr. Beilman and Louise!
I haven’t given any updates in a while. I’m doing GREAT! I remain pain free. I have had 2 iron infusions which helped my energy level tremendously.
My blood sugars have been dropping quite low for the last few days. For most people, this is not good. For someone after the TP-IAT it is great news! It means my islet cells are working better and making more insulin.
I called my endocrinologist today because I was concerned about my low blood sugars. She reduced my morning insulin from 8 units to 6 units. She also reduced my nighttime insulin from 4 units to 2 units. I am very hopeful that one day I will be totally insulin free!
From a friend, Lucky. Brings back memories.
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.
Sue on Christmas Day, WOW a great feeling NO pain!
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.
Here we are in Minnesota at the Mounds View home where we stayed for Sue’s original surgery back in August. The hardest thing to deal with is this arctic weather coming from WARM sunny Florida. I am very happy about a couple of things and despite this cold weather, so many people are very sympathetic to our being here during the extreme and unusually cold snap here even for this time of year. That helped but when we tell them we are going back to Florida on Sunday then we get envy. I suppose that there is a price to pay for coming here in September and experiencing the good weather and that would be this weather now. The ground is white and I am told it will remain that way until April. Thank You Lord for Florida, lol.
Ok so we arrived on Wednesday and got to the house at about 7pm and it was indeed dark. The house was just like being home and I will say this if it is possible to get a home over a hotel you should consider it no matter where you travel. Being in a place that gives you those comforts has helped Sue because it is one less stress point to deal with. On Thursday we went to the clinic and Sue had a gallon of blood removed for testing. Well, it might have well been a gallon considering it was over a dozen tubes for the two days. After the first set of blood tests came the Boost test. Sue had to drink two containers of Boost in 5 minutes and then have blood drawn an hour and then two hours later. We are so anxious to see how this test turns out because that will tell us how well the transplanted Islet cells are doing. We are already fairly confident they are doing great because of the sugar levels but this will make it somewhat more official. Now we wait for all the results probably available Monday.
Today, we went to the clinic to see Doctor Beilman and to have the port removed. Sue was really excited and happy to have the port removed, a minor surgical procedure because that was her last tie to the pancreatitis events. Since the pancreas was removed there is NO pain and WOW what a great thing that has been for her. So we met with Doctor Beilman just before the procedure. Again we were beside ourselves at how down to earth he is. He came in sat down and listened to Sue as she told him how happy she was and how well she was feeling (except for her fall experience and the gastritis). He reviewed some of her medical data from her glucose readings and was amazed at how well she was doing. We talked about the progress and some of the events since she left in October and he lowered her Lantus two units at night. Doctor Beilman reassured Sue that the blood clots are not serious because they are treating them with the blood thinners and after three months an ultrasound to see if they are gone, done in Florida, should be all that needs to be done and put that to rest. The gastritis is going to be an unfortunate side effect, but right now it is gone. Regrettably, something that can reoccur without warning but hopefully not often.
I want to say something here. After the procedure was done Doctor Beilman came out to talk to me, as usual, and tell me how everything went. I gave him a gift from Sue, a coffee mug with a message on it. The mug said “Doctor Because Badass Miracle Worker is not an official job title.” He was very humbled and appreciative. The gift was not so much about all the success but more about how much we both appreciate the personable side he has. Making sure every question gets answered for the patient as well as the family, making sure there is warm and heartfelt bedside manners that convert into immense confidence and trust that makes a very difficult situation and deep concern just a little bit easier to take and spending all the time he needs to to make sure Sue is well and has everything she needs. Talking with the expert on a person to person level really does make things better as that confidence also removes stress knowing there is someone who knows what’s happening and is there to help if you need it. Now here is something we never expected. During that conversation Doctor Beilman mentioned how much he cares about his patients and of course appreciates all the thanks we give but he also said what he is able to do is something he is grateful for too. To share those gifts he was given he is happy to do and to be proud of the skills he developed has been an honor for him especially as he shares this with others in this special way. I am humbled to know him.
For Sue, there is pain from the procedure today but this is one that will go away, yay! Hopefully a restful evening and a good day tomorrow will make the trip home a breeze and this part of the adventure another great success.
There was a bonus to this trip. Sue got to meet with one of the other patients of the TP-IAT who she was supporting and who had her TP-IAT just three weeks ago. WOW to see her progress was inspiring also. The two had a great opportunity to support each other, catch up and talk about how things were going. To those of us who have not had this major operation, it is definitely something we cannot truly comprehend in all its intricacies. So two patients talking and comparing common experiences is a priceless experience in so many ways that boosts both and expands progress. Today Sue found out that her friend will be going home just before Christmas to be with her family. Remarkable without a doubt and while the prayers for Sue are so much needed and so greatly appreciated they are spilling over to others who she is helping as well. How fitting for Gods work!
Thank you all and here are some pics.
Sue and the proud Doctor! (No she did not kick him…)
Sue sharing her news of the day and enjoying a coffee after waiting all day for the port to be removed.