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
