Category: My Journey Blog

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.

Mounds View

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.

the Arctic!

Sue and the proud Doctor! (No she did not kick him…)

Thee Cup!

Sue sharing her news of the day and enjoying a coffee after waiting all day for the port to be removed.

Back to Minnesota,

The past week has been interesting. As far as Susan’s health goes related to the TP-IAT things have improved. The gastritis has subsided and her pain levels have all but gone. The insulin/glucose readings from her glucometer are more than impressive averaging in the low 80’s. An occasional high no higher than 153 occurs once every other day and that is when the reading is taken after a meal that had high carb substance. Sue will be sending the numbers in this week to see if there is a need to adjust the Lantus (the long-acting insulin). She has also had 2 lows in the 60’s that required her to up her sugar and apple juice is doing the trick. We think is a great sign as an indicator that her cells are progressing right along on or ahead of schedule. We should know more about this soon.

On Friday Sue was walking and tripped on a sidewalk crack, which caused her to take a big tumble. She fell face first into the grass but also landed on her purse which had her diabetic materials. This caused a serious injury to her left side. On Sunday she went to have it checked out but no fractures showed up. The pain though is rather intense. There was no fluid or any indications of other issues and the doctor ruled it a seriously bruised set of ribs on her left side. This will take several weeks or so to become better (at least).

On Wednesday 12-5 we are off to Minnesota (Now Floridians going north at this time of the year when the temperature won’t go above 20, is a problem! LOL) On Thursday and Friday Sue will have her 3 month checkup, many, many tests to see the progress of her transplanted Islet cells, several blood tests and also following up on surveys for various things related to the TP-IAT. Then on Friday after tests in the morning, a minor surgery by Doctor Bielman to remove the port is planned. We are expecting a lot of good news and excitement from the medical team as her progress precedes her and expected to be confirmed. We will post what we learn as we can.

Please continue praying for Sue. God hears the prayers and has blessed her.

One of the things Sue is doing to repay everyone for the prayers and her good fortune is to talk to people who are a part of or thinking about the TP-IAT process also. She speaks with others to help them understand what it is like and how and what to expect and to support them after their procedure. While we are in Minnesota we will be visiting with a patient Sue has kept in touch with and is 4 weeks behind her. Soon to head home also, Sue has been a positive comfort to her as all your prayers and well wishes and interests have been to Sue. Thank you all again.

More in the days ahead as we go back to Minnesota.

No Pic’s

THINGS ARE GOING WELL!
It has been over a month since our last entry and while it has been a while things are progressing well, but there have been a few things that are noteworthy. Currently, a recent blood workup revealed a serious low iron level. This we are told is not unusual and because it is low and explains why Sue is really tired the plan is for two iron infusion and should be done before the trip to Minnesota. The blood work also revealed a platelet count of 770 but is not a concern. We remember being told it can take 6 to 12 months for that to get back to normal.
Before Thanksgiving, Sue was hospitalized with stomach pain. After a CT and endoscopy, it turned out to be gastritis. This is not good in the respect that she is already on high levels of protonix to prevent stomach difficulties. One concern was that the Gastritis was bacterial and a biopsy proved different. This seems to be an ordinary but extensive case of gastritis. Time and diet along with the protonix are the best treatment to cure this but it will take time. This episode to the hospital was stressful at the beginning because it was the first time since returning from Minnesota that Sue needed to go. She was deeply concerned about several things the most important was if the doctors here would comprehend her new anatomy and how they would do in helping her. Well, two really great things came out of this. First, the doctors here were excellent in regards to her care and they did something we thought was going to be a battle and that was to communicate with the doctors in Minnesota who are still caring for Sue as well. And the second was the incredible support from Doctor Beilman. He was phenomenal, talking to the doctors here and working with them. Doctor Beilman told us to make sure any time Sue need help to reach out to him. For this situation, we thought this was an appropriate time and so she called, got ahold of Doctor Beilman and handed the phone to the local doctor and boy did things go better than ever. It set things in motion for excellent care and all the right things to do to make sure things continued to go well for the transplanted Islet cells and to get Sue back on her feet in good time. Sue was admitted and communications continued as needed to keep Doctor Beilman updated and to jointly work on a diagnostic plan and treatment. Six days later Sue was relieved that she could go home, but during the time in the hospital and after the CT they found two small blood clots in her portal vein offshoots in her liver. Maybe where the Islet cells are. Not critical or terribly dangerous but definitely something that warrants attention and so a blood thinner treatment is implemented to remove the clots. A blessing in disguise. Left untreated the further developments could have been very serious but now are looking good. Today we expect things are very well, the pain has subsided at present and diminishing slowly as it will take time for the gastritis to resolve and we wait for the trip to Minnesota to see the doctors there for the three month follow up and testing. This trip will be from December 5 to the 9th. We look forward to personally thanking Doctor Beilman for his help and living up to his word of being available when needed. For us, this is something we have never experienced and something we can attest to in furthering the posture that Doctor Beilman has as the top doctor in this field. It shows two things, following the doctor’s directions and having the best doctor and working diligently to do things right pays great dividends. And so far things are going really well.

Prior to the trip to the hospital, Sue was having some difficulty with her Blood Sugar (BS) levels. On a couple of occasions, they dropped below 50. She is ok, apple juice does the trick to bring it back up in 10 to 15 minutes. She was reaching out to her endocrinologists here in Florida and the response back (If any) was that she had to adjust her insulin, pretty much on her own. Unfortunately no professional evaluation or recommended plan. That was becoming discouraging to Sue because she felt on her own and unsure if her choices were wise especially with the long-term goal and safety of her Islet cells. She finally reached out to the doctor in Minnesota who got back to her and told her “this is good”! Huh? Was the new question. After further explanation, we see that it is. The Endocrinologist in Minnesota, a member of the team out there and better versed in the TP-IAT procedure explained. Susan’s Islet cells are working. When she eats they are doing their job producing insulin just as they did before the TP-IAT and as expected after the transplant to the liver. This might be a bit earlier that was expected but excellent none the less. What was happening was that after she ate she would give herself insulin, what is called a correction to compensate for what would be missing as we waited for her cells to function. But because her cells are starting to work and apparently well, the correction ended up being too much and the result was the low BS. There is no need to worry because this is precisely what needs to happen and is. So, because of this, one of the insulins (NovoLog) was stopped, for the time being as we watch the progress of her Islet cells. The corrective insulin taken before and after meals. The daily long-acting insulin (Lantus) will continue and be adjusted as needed until eventually that is no longer needed. This is truly excellent news and again so good because of all the people who continue to pray for Sue and her due diligence to keep good information and do well to follow the directions of the doctors. This is a huge step towards that final goal for complete recovery which is being insulin free. Since she stopped, after breakfast, the BS levels have been perfect, between 100 and 110. This, by the way, is the normal for ordinary health people. The next couple of days will hopefully continue in this direction and prove the process further. Sue will continue to monitor her BS levels as before and track what she eats and provide that info back to the doctor. But the expectation is, excellent! Way to go Sue and thank you all for your prayers, please keep them coming.

No Pic’s today

Hi everyone. It has been a week or so and time for another update.

Well good days and some not so good. But the good thing is that the not so good days are not BAD! Sunday and Monday was worrisome. Slight pain at the area where the Pancreas and Spleen used to be and a slight temperature of 100.2 created concern. Unfortunately most of it was over the weekend and Sue took a gamble to ride it out. Tylenol was the most medication needed and like before plenty of fluids seemed to work. By Tuesday everything was gone. Pain and temperature.

On Tuesday we took a trip to the local GI. The first time in three months and well let’s just say happiness and hugs. Our hats are off to the team in Minnesota. They had all the documentation sent down to Dr. Covelli the GI so she knew what was going on and that everything went well. She actually could not wait to see Sue. A review of the time in Minnesota and a plan going forward made the visit the best in many years. Usually it is a visit that deals with a trip to the hospital for pancreatitis or the need for some kind of attention. Going forward the plan is simple. Keep the meds (enzymes mainly) current and available and keep a monitor on the digestive activity. For the first time not talking about diarrhea, chronic pain or difficulties in the hospital were gone. There is still the matter of the port but for now it is just to care for its maintenance and keeping it open and at minimal risk of infection or clotting. And this is no problem for the Doctor. December 7th in Minnesota that will be removed and Dr. Covelli was in agreement and on board with the plan. We did talk about the pain and temperature and she is fairly confident that what might have happened is at torn adhesion which is perfectly expected now in that area and probably in the future. After all it’s only been 45 days since the surgery. Really fantastic. No restrictions for diet other than what the endocrinologist will place and make sure to use the enzymes. Sue is becoming really good at dosing that based on the meal, and the doctor was amazed at her adjustments given the situation three months ago with pain, digestive issues and some difficulties sleeping, but that is not her area. All in all a spectacular visit.

On Wednesday the next Doctor was the Endocrinologist. This visit was good but cautious. This doctor is a holistic medicine enthusiast but also a traditionalist as well. He is recommending a continuous glucose monitor and a relaxed effort on the 80-120 range. He also encouraged Sue to be less concerned on her insulin and become more involved in other things and to be sure to adjust her insulin as she does this in concert with her increased activities. Some of this makes good sense but it does warrant a review with the doctors in Minnesota. This may be the course of the future but is it time we have to see. If the two doctors are in sync then that will be great if not then a change may be needed and that does have some concern. A battery of blood work is requested by this doctor to help update the picture which is never a bad idea and another appointment is 4 weeks to continue the care and observation, assuming the doctors are in sync. This doctor is in favor of Sue adjusting the Lantus (long term acting insulin) based on the numbers daily, but for us only with the concurrence of the Minnesota endocrinologist. We are expecting that today. This doctor will make sure that the meds (insulin) are correct and available moving forward.
What’s ahead?

Continue the top notch work monitoring the diet and blood sugars, increase activities as she can and more doctors in the next weeks. This may seem to be overkill, but when you think about what has been done and the fact that this is new to the main stream medical care for pancreas issues, everything that is done here will be for Susan’s best care and the success of her Islet cells and to help those who have this done in the future. Her success, while exactly what is in Sues best interest, will be an example to those ahead for their best interest. And on a personal note I can tell you Sue’s due diligence is phenomenal and I encourage anyone and everyone to follow in her footsteps even if you have issues not related to the pancreas. The only thing you have to lose by not doing what the doctors say is failure.

Till next time.

No Pics this time.

THE TP-IAT CHAMPION IS HOME!

At 4:20 EDT Sue walked into her home in Florida to “WELCOME HOME SUE” signs, balloons and of course, her dog Louie. 6 weeks after leaving the first part of this journey is finally done. It just does not seem like 6 weeks have drawn by but when you ad in the pre-op days and the travel. We are just about there. And its good to have her home.

The days started out early at 6:30. Rise and shine (in the dark) and get ready for the 1,400-mile trek. I could see Sue was feeling good but a little sad. We were busy making sure we had everything and the AIRBnB home was in good shape and locked up tight. That was good because it kept her mind off the disappointment of leaving. Sue did not really want to go and leave the top-notch team that made her pain free behind. At the airport by 8:20  car checked in and through security, Sue sat in a wheelchair waiting to board the plane. Sitting there for a half hour enjoying a good cup of Caribou coffee, a good treat and one that provides the nutritional information she needs to help control her insulin, It hit her that she was leaving the area that she had become so comfortable to stay because she was only a few minutes away from the best care she ever had. What a feeling to be able to have 100% faith and trust in a medical team and know that they really care about you and the talk to each other and know what they are doing. For at this time she really realized the time to do this was done. She began to cry. Some of it was sad leaving her new friends and support team, some of it was joy because she not only did what she set out to do, but it was so successful and done so well. And, also the most important thing she was so happy she was going hope PAIN-FREE! Looking around the airport and seeing so many people each on their mission going to or coming from somewhere each in their own world oblivious to the miracle that was sitting in their mists. I was really touched at that moment because in a blink of an eye six weeks went by and she’s coming home, healthy (well, excluding the diabetes) and happy.

This was a very big step for Sue. Traveling posts a big difficulty for her. This was truly hard because with this trip she was going out on her own sort to speak. It was also a challenge because up until now her days were very manageable as far as eating and taking care of herself. But with this trip, everything was going to be out wack and her schedule will be all over the place. Breakfast and lunch were nearly impossible and having to take blood sugar readings and do all this out in the open and in public was a big feat for her. First was the long-acting insulin and w reading to see how things went through the night. The BS reading was perfect and no extra insulin was needed. We boarded the plane and were off towards Atlanta. One thing about a plane you can’t look back…

We had a short layover in Atlanta, less than an hour. The airport was packed. In her wheelchair, it was not easy to wander off to get something to eat. There were long lines everywhere for food, so lunch ended up being peanut butter crackers. More readings and still in great shape. I have to hand it to Sue. For some reason she was not comfortable taking BS readings and giving shots in public were somewhat embarrassing for her, but she proved she was a champ and did what needed to be done whit hundreds of people around and overcame the self-awareness. This part of the trip was an hour long and it too went smoothly. She was good to remember not to cross her legs and stand up once or twice to make she there was no chance for a blood clot or any other issue due to the platelets. With the last known reading that was not much of a concern but she intended to make sure it would not become one.

The plane touched down in Orlando and this airport was packed and busy as well. Getting help with the wheelchair didn’t happen so I pushed her from the plane to baggage claim as we also had a carry-on and satchel for the computers. All in all not easy but we made it. Our daughter son-in-law and granddaughter picked us up and the whole day was made priceless when the car pulled up and Sue looked into the car where Addy our granddaughter was. The look on her face of the excitement of seeing her grandmom after so many weeks again brought tears of joy to sue and excitement for her as well.

The rest of the afternoon and evening were unbelievable. It was hard not to pick anything up including Addy, it was tough making sure her sugars were just right. But I can see, life has returned to normal but this time just a little better because thanks to so many people, hours and hours of prayers to God and His blessings and a special team of dedicated people a new lease on life has begun.

It is late evening as I sit here writing this blog to let everyone know what the homecoming day was like. Sue mentioned how strange it was not being in Minnesota, but how good it was to be home (Well, except for the HOT weather, lol). She is exhausted, and a good night’s sleep in her own bed for a change is greatly anticipated.

What’s next,

In the week ahead there are several doctors visits a trip to the lab for more blood work and we begin the other hard part, reviewing and handling the financial part of the journey. She still has that long part now of keeping her BS between 80 and 120 to give those transplanted Islet cells the best chance to survive. But, so far she is knocking in home runs each day towards that goal. Keep the prayers coming. Thank you all.

Entries to the blog from now on will be sporadic and probably on a weekly basis unless there is an issue. We will continue and report on the progress and the hurdles ahead.

Pics for the day

Sue and Addy (her granddaughter) Home!

Sue and Joe, Home!

From Mounds View Minnesota, Susan’s white squirrel, Lucky. Lucky brought Sue good luck and good cheer every time she saw it.

I’m back! This is Joe, Susan’s husband. I returned to Minneapolis after two and a half looong weeks to bring Sue back home to Florida. I have talked with her every day and just like you all, I am amazed at how well she is doing. Sue, with the guidance of her doctors, made the decision to remain here in the twin cities area for the full 5 weeks. She probably could have pushed going home sooner because she is doing so well, but that would have meant traveling sooner after her surgery than what might have been good, and I see that this was wise. During this time Sue has done better at getting her blood sugars in that range of 80 to 120 and that did require close monitoring by the doctors. Perhaps doable from Florida but not with the confidence she needed to make sure she was truly ready for that long journey home. Just so you know it talks almost a full day of travel with about 4 and a half hours in the air to make to and from Minneapolis. In addition, Sue’s platelets have dropped to 600. Normal is 400 and below. What this means in the trip home will be much safer and easier on Sue because she/we won’t have to be concerned about the risk of blood clots while sitting for a long time cooped up in a plane. Sue has only one restriction now and that is no lifting more than 10 pounds. And, that will continue for another month to make sure her abdomen heals well. Lifting heavy things poses the risk of an internal hernia or muscle tares at the operating sites. So again, as hard as it was for her because of how much she loves out granddaughter, the full time helps to reduce that risk as well, each day. It will be hard when she gets home not to pick up our granddaughter and the nervousness of her hurting Sue when she climbs up to sit with her was reduced too by listening to the doctors and staying in the area the 5 weeks she needed. All in all, we are sure a great thing in the long run.

Well, Sue is all set to come home. She/we had a great time in Minneapolis if you want to consider having a TP-IAT fun, but what we can see right now the days ahead look so promising. Thank you all for your prayers and please keep them coming as she watches those Islet cells come back to life and produce insulin again.

A short note about the ladies she met with a couple of weeks ago and talked to about this procedure. One lady had the procedure and is doing fairly well. Each person’s experience will be different, but the hope is that everyone will be pain-free and with good luck not a diabetic after some time. The other lady who was concerned she might not qualify was told she did and will have her procedure in a couple of weeks. She is so happy she could have been a part of their experience and as it turned out was a positive one for them as they struggled with deep concerns anyone would have when undergoing a MAJOR surgery.

What’s next?

Sue will be home Sunday. She will continue doing everything she can to follow doctor’s orders so that might mean lots of rest if she does not return a call or message right away.

No Pics.

Sorry, it’s been so long since my last post. I’ve been out running the streets of Minnesota. Yesterday I had a visit with my surgeon. I also had bloodwork done. I had great news from Dr. Beilman! I am progressing way ahead of what is expected! I did tell him about the abdominal muscle pain and he said that it is perfectly normal considering my activity level. He was really happy! My platelets have come down from about 1470 to 700. Still a little bit elevated but much better! They will test me again in about 3 weeks to see if I need to continue the aspirin therapy. My blood sugars are doing great as well! I will see my endocrinologist on Wednesday…

I was a bit worried yesterday as well because my temperature rose to 100.2. Normally this is not a serious matter, but without a spleen, this cannot go above 101 and if left untreated can become very serious and possibly life-threatening. As things turned out this morning my temperature was normal. This was a good lesson for me. I need to be very cautious when I am out and extra diligent to wipe surfaces like the handles on grocery carts.

I also had the privilege of meeting 2 wonderful people yesterday. One who is having a TP-IAT on Monday and one who was in Minnesota for her evaluation. We had some great conversations and even a few laughs! They thanked me for making them feel much better about the surgery! This was an especially rewarding time for me because I was able to give to someone in the form of comfort and compassion a sense of not being alone and less fear as they go through this journey of their own and this is so fulfilling to return what was given to me by so many in so many ways.  One of the ladies that I met was so motivated by our meeting, she suggests that I be a spokesperson for U of M and the TP-IAT procedure. I told her that this was one of my hopes and here I am today with them doing it. How rewarding that was to be able to help someone even a little to face what I did and feel some of their fear resolve to hope.

It looks like I’ll be returning to Florida next Sunday the 7th! I look so forward to being back with my family and friends!

Hi everyone. Its been a few days since my last entry but I don’t want to just put dull routine stuff up here and bore everyone.
Over the past few days, I have been doing very well. I have been getting around, driving, and getting used to being a “temporary” diabetic. I’m good with this. I have been working with the doctors and adjusting the insulin as they suggest. I met with the endocrinologist on Thursday (I know I should have written about that) She is great and that was long overdue. We are still targeting a blood sugar of between80 to 120 and it is slowly getting there. Yesterday the numbers were between 80 and 100 generally. Yay! She will work with me the next two weeks and for the next four in Florida and then as I transition to my new doctor there. This really makes me feel good and comfortable, something I need to help me feel good about leaving the excellent care I am getting here. And speaking about care, my friend Kathy, she has been looking after me and making sure I am doing things just like Joe did and she has been doing great. I really do need someone here but I am clear to be on my own and I need that too for when I return to Florida. I have excellent care here and I am very close to the hospital in case I need anything. I have been having a little pain but I think it is muscular. I will mention it to Emily Dr. Beilmans Assistant on Monday so he is aware. I see him on Friday and I expect him to say go home. I know Joe will be sad he is not here they have become fast buddies!
One of the things I plan to do is help people who will be having the TP-IAT surgery as I have. This week I will be meeting with a person and having coffee with her before her TPIAT surgery. I will be talking to her about my experiences and hopefully, she can see how I have done and with that help her face some of her fears and worries. I had that through a blog from another patient and doing this will be my way of paying it forward to others. My way of passing on all the gratitude all of you have given me in your prayers and well wishes. I want to put my good fortune to work in some way and I hope this is one way. I will let you know how things go.
Thank you all again. I still have a long way to go, it will take 4 to 6 months for these Islet cells to take hold and a year for them to really become permanent and I know Joe has said many times. I still need prayers. And I am praying for all of you as well. I know many are facing issues of your own. I can’t be there but my heart and prayers are with you.