Our Chelation Journey
This past week has seemed like a bad episode of Mission Impossible. We found ourselves desperately racing the clock trying to schedule what might be Gary’s last MRI of his brain. Strangely enough, this month marks the four year anniversary of his journey into chelation.
If you remember from Summertime Neurology Blues during our trip to the neurologist, we found out the hematologist only ordered
an MRI series of his back. No brain. We couldn’t fault the hematologist since ordering an MRI series for Superficial Siderosis isn’t something he would ordinarily be doing. There might have been some pressure on our end to get them done.
Usually, neurology would order the scans but since we travel between three states and two VA hospital systems for care the lines between who is responsible for what is sometimes blurred. Our hematologist in Louisiana likes to remind us he is only supposed to be keeping an eye on Gary’s blood levels. The neurologist in Arkansas felt since the deferiprone was being dispensed and monitored in Louisiana hematology should also shoulder the responsibility of tracking the efficacy.
Gary had been wearing a portable heart monitor ordered by his cardiologist. He was still experiencing episodes of hypotension, more than his usual state of dizziness and chest tightness. They finally recorded incidents of what he has been describing. His first-degree heart block was progressing into second-degree with intermittent bouts of complete heart block. Your husband will need a permanent pacemaker implanted. Great news if this makes his heart troubles go away! But wait, once the pacemaker is placed what about future MRI scans? It usually takes an average of 30 days for the VA to schedule a non-emergency MRI. We were looking at a 21-day window.
We see the hematologist tomorrow for Gary’s regular quarterly visit, and we had intended to ask about the missing MRI series then but I sent a message in early last week explaining the situation and asked if he might be able to go ahead and put in the order. I received a phone call from the doctor explaining he had to follow protocol and needed a request from Gary’s primary care provider in Texas. He confirmed once Gary had the pacemaker he wouldn’t be able to have an MRI in the machine at the OBVAMC system. I pleaded our case and hoped for the best.
You often find communication is not the VA medical systems strong suit. Care is always exemplary. We love our providers, and the attention Gary receives is terrific, but their method of communication between facilities in different states could use a serious upgrade.
We received a message late yesterday from our hematology nurse letting us know our PCP refused our request for an MRI without a specific order from Neurology. I believe she may have forgotten Gary is under the care of neurology in another VA system. His neurologist from the VA in Arkansas is not allowed to order an MRI series in a VA facility in Louisiana. She must act as the go-between. In her defense, I have to say Primary Care Physicians in the VA are under extreme pressure not to order tests or spend unnecessary money. In past conversations she has always expressed surprise at the speed Gary is booked for his many specialists or testing. I try gently, to remind her Gary is dealing with a rare disease that requires care from many areas.
Cue soundtrack from Mission Impossible
I jumped online and downloaded the notes from both the intern and the neurologist, taking care to circle in red the sections where they noted the neurologist was giving over control of all Superficial Siderosis chelation treatment to hematology. I sent these to the PCP along with a strongly worded request. I next sent a message to neurology pleading with them to have the neurologist contact the PCP. Sometimes it pays to be the squeaky wheel. Do I feel guilty for sending strongly worded ( code: slightly snippy) messages? No, because when I opened Gary’s records today, I saw his hematologist had ordered an MRI series this morning.
Gary has now been on chelation four years. While his hematologist doesn’t feel there has been any positive progress he is still willing to leave the decision to continue chelation in our hands for now. I’m not sure how much longer this will be the case. A member of the Superficial Siderosis Facebook group reported her husband just finished his four-year mark on Ferriprox with the news his iron was wholly gone. A reason for celebration and continued hope.
I look back on our earliest chelation stories and have to smile at the excitement. Hope is a beautiful feeling. If you go back and read through them, you can feel it. Nothing has changed. We know Gary will still show hemosiderin deposits, but now we’re looking for any sign of reduction. Something positive to help make a case for staying the course. If all goes well, we should be getting the MRI scan results just as Gary goes in for his pacemaker. We can use some positives anyway we can get them.
