Yesterday, I had two appointments – a follow up with the PA with whom I’ve been working in the anticoagulation clinic since I was discharged after the blood clots in both of my legs in November, and an appointment with my CDE, just as a regular follow-up visit. Before we left for the appointments, I received a phone call from the home health care nursing agency as they wanted to come out to do their visit as well. I am back on IV antibiotics, but since my team of physicians and I made the decision to keep the central venous catheter (CVC), basically a really big, strong IV line that goes into one of the central veins and leads directly to the heart, I am able to do the IVs at home without having to first go into the hospital for at least a few days.  I can just totally skip that step, and not have the risk of exposure to everything else that one finds in the hospital, plus the stress and exhaustion that comes along with a hospitalization.  So, I am back on two IV antibiotics at home, and one of them requires levels to ensure that the dose is correct. Since I had already given my dose for the morning, the home care nurse wanted to come out to the house just to complete some paperwork before we were off to appointments. Once we finished, we were off to the first appointment – the CDE!  

My appointment with the CDE was my regularly scheduled appointment, except I’ve had to reschedule it three times over the past two months because of hospitalizations!  I typically alternate appointments with the CDE and endocrinologist every three months so that I am seeing one of my diabetes providers every quarter. As I’ve had so many hospitalizations since October, when my educator and I sat down and looked at my appointment profile, she realized that the last time that I saw my endocrinologist in the office was in July!! My doctor was the endocrine attending the last time that I was in the hospital, and we spoke for quite some time when she came on rounds, but it was not an official appointment per say. Needless to say, I scheduled the appointment with my physician for her next available when I checked in for my appointment with my CDE. 

During the CDE appointment, I got mostly positive feedback on my diabetes control. There are times where I’m hanging out a little bit too low, and while I’m not having many true lows anymore, there are just more times than we’d like that my blood glucose levels are chilling out in the 70s. I have some rebounds, though, but not terribly, and not every day. I am also off of prednisone now, which makes blood glucose levels erratic because of added cravings, hunger, and insulin resistance. I am also able to eat more reliably now, and while that may seem like a trivial statement, when one has relied on TPN (which stands for Total Parenteral Nutrition and is complete nutrition through an IV line at home, or in the hospital) or EN, more commonly known as tube feeding, the statement is not trivial at all!  For several years, I did not have to worry about added boluses because I was on either continuous TPN, EN, or a combination of both. Now, my motility from gastroparesis has settled down, and while I still do not have normal motility and have flares that cause me to have days that are worse than others, I am actually eating, with reminders, and nibbling on my small portions all day long. So, we knocked about a unit of insulin total off of my daily total for my basal rate, and that is generally now used more like it should be – as bolus insulin when and if I need it to cover carbohydrates for my meals or as correction insulin so that I hopefully spend less time in the 70s, without any rebound swings. I also had to change the type of rapid insulin that I use in my pump. I have been a Humalog user since diagnosis over ten years ago. This year, I found out that of all my medications, Humalog is not on the preferred medication list. The preferred rapid insulin is Novolog, and I had an allergic reaction to that at some point years ago. So, I will be trying Apidra. Hopefully that will work for me with no allergic reaction around my sites, continued good control, and continued understanding from the insurance company. I am thankful to have insurance coverage at all as a person with diabetes and multiple other health problems, and know that many of my sisters struggle with supplies. I think that this is one of the most difficult parts of living with a chronic health problem, behind emotionally accepting the chronic nature of a disease like diabetes.  

My second appointment was with the anti-coagulation clinic to check in with my Warfarin dose. The lab level that is checked, an INR, is checked with a finger stick, just like a blood glucose test, in a machine that is very much like a glucose meter. The numbers for the PT/INR pop up on the screen in about 30 seconds, and we have instant results! Once we have the PT/INR result, I meet with the PA with whom I have been working to figure out what to do about my Warfarin dose. My INR level needs to be over 2.0 to be “therapeutic” and I’ve been 1.2, 1.3, 1.4, and this week, I was 1.6! So, still not therapeutic, but moving in the right direction. The PA and I decided to go up on my Warfarin dose yet again, so I’m on a really hefty dose of that medication right now, and still on the Lovenox shots twice a day until I become therapeutic with the oral medication (the Warfarin). It is a careful balance, as we saw when I had the massive hematoma into my thigh, because my blood needs to be thinned to reduce my clot risk, but we also have to make sure that I don’t have too much of a bleeding risk as well. Hopefully, my next test will show my blood levels over 2.0 and I will be able to stop the Lovenox injections. Between twice daily Lovenox injections, my CGMs, and my infusion set for my pump, I am running out of places to inject and place new sites, as the Lovenox often leaves bruises and hard lumps for a couple of days after each injection, even with site rotation. Perhaps it is time to start exploring places other than my abdomen for pump infusion sets and CGMs.