Quick disclaimer (and humble brag): I’ve been able to accurately “diagnose” a few things before the medical staff treating my husband. That being said, the only medical school in my repertoire is Google and the only accredited degree I hold is in the very closely related film & television arts.
Now that we have that out of the way, here’s why it’s important to understand lab results…
If you’re like me, you assume a lot about medicine. You probably assume doctors have access to a program where they can easily identify trends. They don’t. They look to see if anything’s in the out-of-normal range as they happen and if something is off (or trending in the wrong direction) but they don’t catch it, it can cause real problems. Being a proactive patient in this scenario can only benefit you.
I know this because Jeff had blood work that should’ve alerted his physician to his cancer back in March of 2015. His doctor noticed the high WBC (White Blood Cell counts) and noted that it likely signified a virus but did not catch his incredibly low HGB (Hemoglobin) which should have been a red flag for additional testing. That was enough reason for me to learn the meaning of every acronym and how they relate to each other.
Alright, enough explanation. Let’s run through the big ones. Don’t feel intimidated.
(me in June of 2015)
When a doctor orders lab work he will likely, first and foremost, order CBCs – the Complete Blood Count. I’ve found the below to be the most important parts of the CBCs:
WBC (White Blood Cells): a high white cell count can signify anything from an infection, to a virus, to inflammation, to cancer. If your white cell count is high, you can look at the results that follow the white cell count to get more of an idea of what is going on – the results I’m referring to are Lymphocytes, Neutrophils, Eosinophils. Each of those cell types have a different purpose when it comes to attacking things in the body that shouldn’t be there. I’m going to stop here on the high white blood cell counts so your eyes don’t glaze over.
A low white cell count leaves you to prone to infection. This normally occurs right after chemotherapy and that’s why, post chemo, Neupogen shots are given. Neupogen shots make sure your ‘good’ white cells replicate quickly so you aren’t compromised. These shots cause bone pain (because of the white cell count being forced to quickly grow in the bone marrow) and generally suck.
Hgb (Hemoglobin): Chemo can cause anemia aka low hemoglobin, and so can cancer. This seems like a good time to mention that the more you learn about lab results, the more you’ll realize that a single result can point you in a handful of different directions. If you suffer from anxiety, good luck.
A high hemoglobin can signify something called Polycythemia. Then again, it could be that you are dehydrated so that your lab results are just falsely high.
Platelet: Platelets prevent you from literally bleeding out. Without the ability of your blood to clot, you’re in big trouble. The normal platelet count (by MD Anderson standards) is 140-440. Jeff’s platelets like to hover around 40, which sounds insanely low, but a lot of patients don’t even have results of 10 and need replacements daily. Platelets are hard to come by and it can often take 3-4 donors to make a single bag of platelets. Now that you know this, you’ll hopefully feel inclined to donate platelets, which you can find out how to do here: Donate Platelets
Now for my absolute favorite…
LDH (Lactate Dehydrogenase): it’s a lab result with an identity crisis. It has no idea what it’s signifying, but it’s there and it’s gonna love watching you lose sleep at night. High LDH! What could it be? It could be the chemotherapy working, could be cancer growing, could be an impending heart attack, sepsis, a virus taking over, who knows! It simply signifies cells being destroyed and it’s the most ridiculous of them all.
Creatinine: Having creatinine be a little low doesn’t normally signify a huge problem, high creatinine tends to be a problem. The kidneys are under stress for some reason (like a blockage, or medication toxicity) and they’re going to start getting cranky. When they start getting cranky you have to find ways of removing some of the stress or they’ll eventually shut down, leading to kidney failure, dialysis, and eventually a transplant. eGFR is another way this is monitored, but it’s taken less seriously than creatinine.
eGFR: This monitors the filtration rate of the kidneys. You’ll watch these numbers slowly decline if the creatinine is high (not confusing at all, thanks!) but the difference with this result is that it takes other lab results into account. It should be monitored to better identify kidney stress, even when creatinine is in the normal limits.
The normal eGFR for Jeff was 185, but the normal population eGFR is around 107 (that’s by MD Anderson standards). So, when Jeff and I saw his eGFR hit 110 one day, we knew his kidneys were not happy. The doctors would have not caught this because he was still in normal range to them, but we’d been steadily tracking it. They quickly made some substitutions to solve the problem when realizing the decline was after taking a new, high toxicity medication.
Bilirubin, AST, and ALT: These are liver lab results. When they’re high, it could be anything from drug toxicity, to liver cancer, to Graft versus Host disease. When one organ is under too much stress, the rest usually follow. When Jeff’s kidneys were unable to handle the toxic burden of medications we often watched these numbers slowly creep up.
Protein: Gastrointestinal issues often cause low protein. When the intestinal walls thicken, they can’t absorb as much protein. The malnutrition caused by this can also have an affect on your electrolyte panel – sodium, potassium, calcium – you’ll likely need replacements via pill or IV.
Albumin: Low protein causes low albumin. It’s a problem because low albumin causes something known as ‘third spacing’ – that’s when fluids no longer hydrate your organs and actually sit in places like your feet. This is called nephrotic syndrome and can be extremely uncomfortable. There’s no cure except for to figure out the underlying problem and fixing that. Now you’re on the journey of trying to figure that out. Great.
Now that you know what is low or high in your lab results and your symptoms, you can take to Google (but ONLY MEDICAL PAPERS – NO WEBSITES). Part of the challenge is finding free medical papers. Some want payment. I find this ridiculous. Almost as ridiculous as learning how political medical papers are, with doctors fighting over who gets to be lead author on the research.
I plan to fight for all free medical information – but right now Jeff has to get over this GHVD, first things first.
You’ll quickly find that a lot of symptoms and/or lab results add up to be the same things. That’s why WebMD makes hypochondriacs.
But good doctors will listen to why you think symptoms are adding up to a certain diagnosis. Chances are, they’ll give you piece of mind as to why it’s not what you think it is – you know, because they spent years in medical school where they’ve had to learn all of the small details surrounding what makes up a particular diagnosis.
And try to keep in mind you don’t want to be the patient advocate that cries wolf to the point that no one takes you seriously (although I know first hand it’s undoubtedly difficult when you feel like you know what is suddenly wrong and it needs to be fixed immediately). Always check your sources, do your own research, trust your intuition, advocate, advocate, ADVOCATE.
But, please, with gentle persuasion.
GLOW. It’s a fantastic Netflix series I binge watched the entire first week of July. Little did I know, while I was watching lady wrestlers battling it out in the 80’s, there was a battle going on right next to me…
It was Graft versus Host. Jeff’s New Immune System versus Jeff.
Jeff and I were totally under the impression that we were in the clear by July. The more dangerous stages of GVHD normally occur in the first 100 days and he had avoided it. Or so we thought.
GVHD occurs when immune cells identify the body as something foreign. You actually hope for a LITTLE bit of GVHD, because the cell’s ability to recognize what’s foreign is what fights the cancer. If your new immune system is too similar to your old one, it won’t know to fight the cancer.
This is why GVHD has a higher chance of occurring if your stem cells are from an unrelated donor. Jeff’s stem cells came from his sister, and they were a complete HLA match (jackpot!) but GVHD also has a higher chance of occurring when stem cells are given female to male (or vice versa). ISN’T THIS ALL EXHAUSTING? But wait, theres more:
All allogeneic stem cell transplant patients are given drugs to suppress the new immune system. They’re slowly weaned off so that the cells have time to get familiar with their new body and not attack it. Here’s a gif representation:
IN THE BEGINNING THE CELLS ARE LIKE THIS
BUT AFTER WEANING OFF IMMUNE SUPPRESSANTS THEY CAN GET LIKE
Jeff’s new immune system seems to have qualms with his digestive tract specifically. It’s preventing him from absorbing protein, which didn’t sound so terrible at first – big deal! We’ll go to GNC and get some Muscle Milk, solve this here and now. Except it doesn’t work like that (but I, a non intellectual, was willing to try it). The lack of protein becomes a big problem because protein begets albumin, which is what keeps water in your veins. Without albumin, things (your organs, specifically) can take a quick turn.
The first thing doctors do when they realize you have GVHD is give you a very high dose of steroids and cross their fingers and hope it works. It only works for about 30% of patients. When that doesn’t work (like it didn’t for Jeff), photopheresis is the next option. Here’s what it looks like:
The photopheresis machine has a very nonthreatening sound to it – like a Cessna during taking off.
Jeff had a new access line placed into his chest so that they could run his blood through this machine. The photopheresis machine separates the immune system cells and – for lack of a better word – sunburns them so they become less cranky. They then circulate the cells back into his body. He does this 3 times a week, for 2 hours at a time, and it takes weeks to see an effect. This is rough because sometimes the GVHD is so acute that people can’t wait weeks to see results. There has to be something better than this, right?
Jakafi is the drug’s given name but I prefer to call it Jafar.
Jakafi was originally created for Polycythemia Vera, a slow growing blood disorder. The pill works by lowering your blood cell counts (it’s essentially chemo). Researchers found that it’s effective on some GVHD and so it was approved for off label use only in the last couple of years.
So we waited for the drug manufacturer to approve Jeff’s use of Jakafi, then we had to wait for insurance to approve the cost. This took a week and it often takes much longer. This is a huge issue when each pill costs around FOUR HUNDRED DOLLARS. Jeff takes 4 of these a day. A nurse dropped one on the floor yesterday and I nearly threw up.
Jeff is on day 12 of Jakifi and it can take weeks to work. Each day in the hospital stretches into the next. I find it ironic that the only thing that gets Jeff’s mind off of everything is watching back to back episodes of HGTV shows when we’ve had our fill of acronyms this year.
Every day we risk a life threatening infection by continuing to wipe out his immune system to control the GVHD. Because of this, numerous antibiotics and antifungals are given daily via IV. This puts incredible strain on the kidneys. There has to be perfect balance, so nurses and doctors are working around the clock to keep his body running. It’s a lot like a symphony. The most expensive, anxiety inducing symphony. It’s like the symphony they hired to record the score for JAWS. And for now, all we can do is “wade”* it out.
*I’m so sorry, but not sorry for this.