Reset Osmostat and The Envy of the Clinic

 That time I was in the hospital, the time after my first chemo, the time I refer to as "That Time I Was So Sick", 2 out of the 9 diagnoses I had, were Hyponatremia and S.I.A.D.S. 

Hyponatremia is the medical word meaning that I had an electrolyte disturbance which made my blood sodium level too low. Normal blood sodium level is between 135 and 145 mEg/L. Mine was down to 115. That is very bad (and dangerous). It caused me to have severe headaches and confusion. If sodium goes low enough it can cause permanent brain damage, coma, and even death. If mine had dropped any lower, I was going to be taken to ICU.

Dr. V called in a Nephrologist (Kidney Doctor) who diagnosed and treated me for S.I.A.D.S. which is Syndrome of Inappropriate Antiduretic Hormone. I don't understand it, despite doctors explaining it and also reading about it. What I know is it makes the body fluids too dilute, thus making the sodium too low.

These conditions were caused by both my Lymphoma and the chemo they used to treat it.

After I finished chemo and all my blood levels were slowly coming back up to the normal range, my sodium stubbornly remained at 128. Because I was asymptomatic, Dr. V didn't think there was any clinical significance to it. But because my husband had seen how gravely ill I had been from low sodium, he remained concerned. So, Dr. V referred us back to the kidney doctor who treated me in the hospital.

Kidney Doc want me to do a 24-hour urine test. I was given an orange jug and a "urine hat" in a red biohazard bag. I was told to pee into the hat, which conveniently had a spout, and pour it into the jug, which was to be stored in the refrigerator, for 24 hours.

After I started the test, I quickly realized I was going to pee more than that jug would hold. I called the clinic and asked if I could use a jar for the excess--I was thinking about one of my canning jars. The nurse said yes, "as long as its clean".  Really. Did she think I was going to finish the jar of peanut butter and start peeing into it without washing it? As it turned out, I used a clean plastic milk jug.

The next day, when I delivered my 2 jugs of pee to the clinic, I thought I would be able to drop it off and go. But no, I had to have a seat in the waiting room, with my 2 jugs of pee proudly displayed. About 15 minutes later, I was called to the back and still lugging my 2 jugs of pee, which are quite heavy by the way, seated in the lab to have blood drawn.

There was already another woman there having blood drawn, but her nurse was not having any luck. I commented about my jugs of pee and the woman exclaimed, "2 jugs! I only had about this much", indicating a couple of inches with her fingers.

My nurse got into one of my big fat juicy veins right away and the blood flowed. Both the patient in the next chair and her nurse looked longingly at my body fluids--my 2 jugs of pee and my easily collected 2 vials of blood. As I walked away, the nurse was still gouging around in the poor lady's arm, trying to get into a vein.

When I returned to Kidney Doc, he laughed at the amount I peed--5 liters. All the testing they did came back normal. He said I no longer have S.I.A.D.S. and that my kidneys work just fine. He said I have Reset Osmostat. Which basically means my new sodium level is 128 and that is now normal for me.

I told him about my experience in the lab and he said, "I bet you were the envy of the clinic". 

 

 

Pictures at this post are compliments of Google Images

 

Side-Effects List

 

 

 

Beau's Lines

 

 

I'm pretty sure I was more worried about side-effects of chemo than I was about the actual chemicals being pumped into my body. As it turned out I had good reason to worry. I had some doozies of side-effects.

 

Here is my Side-Effects List. These did not all occur at once, of course.  I had a combo platter of symptoms depending on where I was in the chemo cycle.

 

Alopecia (that means my hair fell out)

Anemia (and many blood transfusions)

Anorexia (but not Nervosa) a.k.a. lack of appetite

Anxiety (!!!)

Constipation*

Diarrhea*            *they took turns

Dizziness

Dry eyes

Dry, dry, dry, parched, peeling, skin

Edema (once I had elephant-sized feet and legs)

Electrolyte Imbalance

Fatigue

Fever. Fever.

Headache

Infections

Low blood counts

Nail changes (Beau's Lines)

Nervousness

Neutropenia

Peripheral Neuropathy and foot drop

Rapid Heart Beat

Shortness of Breath

Vertigo

Visual Disturbances (Ocular Migraines)

Weakness

Weight Loss

 

Most of these have gone away since I am no longer taking chemo. I do still have trouble with fatigue and I still have some balance and mobility issues. I also continue to have electrolyte problems--I have been referred to a Nephrologist for a consultation. Appointment is next week.

 

I think the most fascinating thing was what happened to my fingernails. Nothing felt bad or wrong but I developed pale bands that went from side-to-side across my nails. Dr. V said they are called Beau's Lines. They are growth arrest lines caused by a decrease of blood flow to the nail matrix. I got one for each chemo. By the time I finished, you could count the lines, like the rings of a tree, to see how many times I had chemo. Weird.  The lines started growing out once I finished chemo.

 

There are also After-Effects of hospitalizations, severe illness, and treatment for a life-threatening disease. I will talk about those in another post.

 

 

Beau's Lines half grown out

Port-a-Cath Placement

That first day I saw Dr. V, he ordered the placement of a port-a-cath (a central venous catheter), a small device, about the size of a quarter, which looks like some kind of transmitter. It is surgically placed under the skin of the chest, then an attached catheter (tube) is threaded underneath the skin and inserted into the jugular vein in the neck. This allows infusions without the need to have an IV started in the vein each and every time. I have had chemo and other medications, blood transfusions, and blood draws for lab tests, all done through my port.

This is the device causing the bump, which is not "accessed", on my chest in the photo above. To use it, a special needle called a Huber needle is inserted into the port's septum, the silicone center of the port. When a needle is in place, the port is "accessed".  My port has been accessed for up to a week, then it has to be changed.

This is a Huber needle. The needle is inserted into the port using the little grip that looks like a clip. The padded part rests flat on the chest and the little clip is folded down like a butterfly. The whole device is taped into place. The port is now accessed and ready to use. The blue cap is removed, then syringes and other specially made catheters can be screwed into place. The clamp is used for stopping the flow while the port is still accessed but not in use or while catheters are being changed.

Here I am with my port accessed, receiving an infusion. It really is convenient because both my arms and hand are free. I can used my computer, Kindle, eat, and all the things I do, while passing the hours I sit in this recliner. 

I am going to an Oncologist (c-a-n-c-e-r d-o-c-t-o-r)

Asheville Hematology & Oncology

 

The first day we met Dr. V, he got right down to business. I truly don't remember too much about what we talked about that day. My husband probably remembers more than I do and he probably took notes; he has been very meticulous about that. And I felt like hell--still running fever, still short of breath, getting weaker by the day.

One of the things I do remember is the Bone Marrow Biopsy. Oh yeah. The very first day we met! I didn't think he had even gotten to first base and here is was going all the way for the home run. Yep, we marched to another room where I got onto a table on my side with one leg pulled up. My husband was there, Dr. V's assistant, and someone from the lab who was dressed in full protective gear, face mask and all. I couldn't tell  what was going on in the room once I was in the position.

What I remember is feeling a lot of pressure. Then a lot of pain. A lot of pain. And I started crying. They let my husband come and hold my hand.

On my way to get the bone marrow biopsy, I went by the lab where 11 vials of blood were drawn.

Afterwards, I walked to the other side of the building to meet another doctor, an oncology surgeon, who would be placing a port-a-cath into my chest and excising a lymph node from my armpit for biopsy. I had an ultrasound of said armpit in order to mark which node would be excised.  That doctor seemed very nice that day, but my husband and I both would develop very bad feelings about him over time.

I also got orders, that day, to go to the heart tower at the hospital for an echo cardiogram, and also to get a PET scan.

What a day! I barely remember crawling to the car to drive home and nothing of that evening.

I don't know if Dr. V used the blue handled or green handled awl (or both) to drive into my hip bone. My husband said he was straining, shaking, sweating, and working hard to get into the bone.