I apologize to my DiabetesSisters for not updating last week! I went out of town for the long Martin Luther King, Jr. weekend with every expectation and thought that I would be home and have no problem writing and posting my blog entry for the week.

 

 

 

As you know, I've been struggling with the after-effects of severe blood clots, and my team has had a particularly challenging time trying to figure out what to do to keep my blood thinning medication and my lab levels that show how those medications are working in the safe and proper ranges.  I was admitted to the hospital to start treatment for the blood clots on the Monday before Thanksgiving, and I found out last Tuesday when I went into the anticoagulatin clinic that my INR level -- the main lab value that I have had checked at least weekly since Thanksgiving -- has only been within the therapeutic range twice!

 

Since I have not been therapeutic on my dose of Warfarin,  I've had to take two daily injections (just what I need, right? Another reason to add injections when I spend enough of my day constantly around needles!) of Lovenox, another blood thinner, which keeps me protected from the formation of blood clots until I become therapeutic with the Warfarin. The Lovenox is dosed by weight. I have been trying to lose some weight and have been very successful, even through all of these hospitalizations, I've managed to be down a kilo just about every time I've been weighed in the clinic or hospital, which is sometimes on an almost daily basis since Thanksgiving.

 

It has been difficult to ensure that my Lovenox levels, therefore, were within range as well as the Warfarin because Lovenox does not impact INR lab levels. To check for an accurate Lovenox dose, one must draw blood levels for heparin levels, and it has to be timed a certain number of hours after a dose. We learned that my Lovenox levels were way too high, while my Warfarin dose was too low. So many things can contribute to Warfarin dosing, and the fact that I was still on antibiotics at the beginning of this hospital stay as well as prednisone, did not help to figure out accurate dosing! Missing just one Warfarin dose will be reflected in the following week's lab values, so it is complicated to balance out the right dose for each person when one's diet and other medications will impact the dosing.

 

I had a huge hematoma on my right thigh, around my hip, and across the back of my body from a bleed, most likely caused by the placement of my central venous catheter, the big IV placed so that I could finish getting my antibiotics for my lung infection at home. As my doctor said when I came into clinic that Tuesday morning following the long weekend, "It looks like you dropped at least two pints of blood in that leg! We have to protect you from blood clots, but we have to stop the bleeding now!"

 

I was in pain, my resting heart rate was in the 123-130 range and every time I got up to move around my heart rate would spike to 170-180.  My heart literally felt like it was beating out of my chest, and we had to get both my heart rate and blood pressure down. My blood pressure is normally low - like 90/40 low. That day, my blood pressure was doing funny things when the nurses asked me to do orthostatics - taking my blood pressure while laying down, then while sitting, then while standing, then while laying down again.  The pressure was as high as 160/100 and as low as 100/60. No wonder I had a horrible headache!

 

The nurse came back in after that test to tell us the plan: go directly to the emergency department. My doctor spoke with the charge nurse so that they knew to expect me. We asked to just be directly admitted, but the doctors told us that we could not do that. I was not stable, and we had to figure out where my needs were with the bleeding, heart rate, and blood pressure. We also needed to get blood counts, and figure out where I was, and how much blood I'd lost I to that thigh. So, off we went to the emergency room.

 

My blood counts were dangerously low. I had a scan and learned that I was not bleeding actively I to my thigh, and so surgery did not feel like they needed to do anything. I required 5 units of blood and several bags of potassium to get my lab levels back within normal range over the next several days.

 

Diabetes wise, that was the least of my concerns while I was in the hospital! I had a fellow from the endocrine team stop by every day so that I could stay on "diabetes self-management" orders and keep my insulin pump on the entire time. This time in the hospital, I fortunately didn't have to argue about continuing to use my pump and that moving back to multiple daily injections was not an option for me, even when I was not eating before a procedure. My insulin pump gives me my basal insulin, the background insulin that I need whether or not I'm eating.

 

When I eat or have a high blood glucose level, I give a bolus. The last day that I was in the hospital, the fellow that I had been seeing got held up in clinic, so another fellow from the team came. I had seen this fellow as my primary fellow during a previous hospitalization within the past several months, and he told me then that I needed to allow myself to be more "lax" with my diabetes control because my a diabetes was too well controlled. This upset me - which is an understatement, and sparked conversation with both my physician and CDE. Yes, I have a low a1c. Before I started on CGM therapy, I was not sure if my a1c was truly reflective of tight control or if it was reflective of a lot of really low lows, followed by their rebound highs. Now I've been on a CGM for a little over a year. My rates have been tweaked a bit, but we have that 24/7 data to show that I'm not having any more constant lows, rebound highs, and some time spent in the middle. It is most of the time spent in the middle, with occasional lows, and occasional highs.

 

I also was shocked that someone who has seen me twice, both times in the hospital, so not under normal circumstances, was telling me again to be more relaxed with my care. When I told him what my own doctor and CDE said, he told me that they were entitled to their opinions, but if he were my physician, he would change things. I also told him that since I'm the one that has to worry about sticking my fingers for blood glucose levels, starting insulin pump sets and CGM sites, and I'm also the one who could end up with complications in 10, 20, or 30 years, I would prefer tight control to try to prevent retinopathy, nephropathy, neuropathy, amputations,heart disease, etc. He just quietly walked away after that comment. I will advocate for myself, and make sure that my team knows my thoughts on my own care. Remember, YOU are the center of your own healthcare team, and your voice is important!