Happy New Year!
We hope your year has started off well and that you are looking forward to a fresh start! I thought I’d take a few minutes to share with you how the year has been going for us so far and give you a ‘Michael Update’.
Michael’s year didn’t start off too well. He spent Christmas Day in bed and has felt pretty horrible for several weeks. The main complaint is this terrible and seemingly chronic sinusitis which he’s been dealing with to one degree or another for a year and a half or so. His appetite has decreased, so he’s lost weight, he has an awful, wracking cough which keeps him up at night and has become bothersome enough that it has truly disrupted his life.
Both his doctors at Vanderbilt and our local, wonderful doctor have tried many rounds of antibiotics and nothing has helped much. Our local doctor finally referred him to an ENT specialist. Oh, how we have prayed and prayed for healing. Finally, I began to pray for answers, and here’s how God has answered our prayers:
I was going through Michael’s history a couple of weeks ago to put together a synopsis for the new ENT doc for his appointment a week ago. In so doing, I remembered how he had this problem in 2015 and his IgG levels were too low and he needed IVIG infusions. IgG is one of the things that works with his immune system so that it has the antibodies it needs to resist infection. Hmmm, I thought. After those infusions it was more than 6 months before the sinusitis issues began to creep back in. I took the results of my research to him and asked him if he thought that his IgG levels might have dropped enough that he needed more infusions. He heartily agreed that might be the case, so, I sent a message to Vanderbilt and also to our local doc, Phil Thwing. Phil messaged me back immediately and said that could easily explain what was happening and encouraged me to get in touch with our local Hemotologist ASAP. All I wanted was someone to order a blood test for the IgG levels.
Well, Vanderbilt didn’t get back to me, so, I called the Hemotologist’s office and they wouldn’t do the test without seeing Michael first and that wouldn’t be for a few weeks. He was scheduled for a checkup at Vanderbilt already on 1/5, but I knew that if I could just get a blood test and it showed the levels were low that they could arrange for him to get an IVIG infusion on 1/5.
So, back to Phil who agreed right away to order the blood test. Yay!
The ENT doc was very nice. He put Michael on another round of antibiotics, this time in concert with some steroids and nasal lavage. He, too, thought it was possible Michael’s IgG levels might be the culprit.
The blood test results came back the following Wednesday and yes, Michael’s levels were extremely low; less than 109. Normal range for most people starts around 640. Wow! We got the results FAXed to Vanderbilt and they reserved time for an infusion on 1/5. Yay again!
So, yesterday Michael saw Dr. Savani at Vanderbilt and we finally got the answers we had prayed for. Yay, God! It turns out that what Michael is experiencing is quite common for patients who had the type of ablative transplant Michael had using the drug, Thymoglobulin, that was used to wipe out his immune system prior to the transplant. The unfortunate results of this drug and method is the dire effects on the B cells and B lymphocytes that help the immune system resist infection. And, of course, I’m sure you don’t have to guess that these cells work directly with his IgG levels. Dr. Savani told us that in many of these patients it can take even 10 years for the B cells to recover and begin to function properly.
He also explained to us (and I actually had done some research prior to the appointment and read about this) that chronic, bacterial sinusitis is one of the primary problems that these patients deal with. The meds prescribed by the ENT doc are exactly what he should have been prescribed, so that was good to hear. Furthermore, this bacterial sinusitis is always worse in the winter months. Thinking back to how Michael began last year, also sick, that made so much sense. He had a touch of it during the Spring and Summer, but, it defintely began to be worse once Fall had begun and during the winter. Hallelujah, we had an explanation! Praise the Lord!
We now have an established treatment protocol in place. Michael will get IVIG infusions every year as winter is approaching until such time as Dr. Savani is satisfied there is no recurring infection which indicates his B cells are beginning to function on their own. Michael is 3 1/2 years out from the transplant, but, there’s no way of knowing exactly how long this will take. He will also get IVIG infusions now every two weeks for a time yet to be determined by his Ig G levels and body’s response. He will also get an annual flu shot and pneumonia shot every other year. Dr. Savani also encouraged him to take more precautions about being around sick people, even our Grandkiddlkins. The rule is: “no direct contact”. That’s going to be the hardest part of this because it means I have to be careful as well not to pick up any bugs and expose him.
Michael is so encouraged to know that he will soon start feeling better and getting stronger. This has been a very rough stretch for him. I don’t think I’ve seen him so weak or so sick for a couple of years. He so looks forward to feeling like himself again.
We prayed and God answered our prayers. Michael is finally, finally on the path to healing and for that we are so grateful. We are also so thankful for the many friends and family who have prayed alongside us. Thank you, thank you, thank you! I’ll keep updating about his progress over the next month or so. Please keep the prayers for healing coming.
Love to all,
Michael and Jan