Honestly I'm not even sure where to begin. It's already been 1 month since my diagnosis, a month. Honestly, it feels like so much longer than that. February was the longest month that dragged on and on. But to start from the beginning, I should probably go back farther into January.
January was a month mixed with awful headaches, extreme fatigue, hairloss, weight-gain, and my appetite acting weird. I was 4 month postpartum so I didn't think much of how I was feeling because being a mom of 3, I thought it was normal to always be tired and perhaps just low on iron.What makes these feelings odd, even though they may sound like normal postpartum issues, I was actually getting plenty of sleep but still always tired, my hair was coming out in handfuls leaving thin balding spots on my head, and even though I had started dieting and exercising I was gaining weight. A few days before going to the clinic I started having a little chest tightness and would lay awake at night trying to catch my breath a bit. And I already mentioned the weight gain but I was beginning to get quite puffy. Ultimately it was the swelling and trouble breathing is what got me to where I knew something was wrong and I needed to get a check-up. You can see the swelling starting in the pics below.
I was fortunate to have family nearby to take my kids right away and my husband was off work so he took me directly to the emergency room where they started a million tests to see what was going on.
Needles, Needles & An Ambulance Ride
That afternoon, I had so many tests ran I can't even remember them all. Multiple Ekgs, xrays, chest scans, ultrasounds, bloodwork...oh my, the blood work. That was an experience in itself. Apparently my veins were not cooperating and wouldn't allow any IVs to stay put. It took 4 different nurses and ultimately they called in an anetheisiologist and an ultrasound to finally get an iv in me. I was in so much pain from be poked and prodded and them moving the needles around trying to keep a vein. Once they got the iv, they wanted to get my blood pressure down so they started me on nitroglycerin drops through the iv and called for an ambulence to take me to yet another hospital better suited for my situation.
A bumpy 20 minutes later, by now it was 8pm, I was being wheeled into another E.R. They were still worried about risk of heart failure so I was informed to lay as still as possibly and not to get up for any reason. The nitroglycerin has started to make me feel pretty rough, an awful headache had set, chest pain still, as well as my tummy was beginning to not be happy after a full day of my body being poked at and having no food. Tylenol wasn't cutting it so they pumped some morphine into my iv...and let me tell you, I'll be just fine if I never have to have morphine again!!! They wheeled me to the Cardiac Care Unit for the night to wait for an ultrasound of my heart in the morning.
The Next Day
Tuesday morning was the worst! The absolute worst I have ever felt in my entire life. The nitrgylcerin caused the most painful headache and the morphine made it even worse and now I was beginning to feel nauseous from all the medication on an empty stomach, which of course I still couldn't eat because I was waiting on the echocardiogram. My entire body ached. I was so miserable I couldn't even open my eyes. I remember thinking, "oh great, I might have Cardiomyopathy and I've caught the flu!" They wheeled me to the echocardiogram and we finally heard some reassuring news, my heart looks strong and I do not have Cardiomyopathy! Such great relief!! So on to the next tests, they wheeled me to get another ultrasound of my kidneys as well as a CatScan. Let's not forget a gazillion more blood labs drawn. 15 MORE to be exact. In the same arm. I was sooooo sore. I just wanted to cry each time they came in to take more blood! When it was discovered I would be needing chemo treatments, they decided I needed a different and new Iv. I wanted to cry, actually I probably did cry. Poke, wiggle, poke they couldn't get a vein and called in a specialist to put in a PICC Line. Even THAT took 3 tries! My body still feels beaten and is most certainly bruised from all the needles. If I were to count, between ivs, shots, lab work, etc I had over 35 needles poking me that week!!!
Kidneys & Protein
With my heart no longer the main concern, they started narrowing in on my kidneys. Because of all my swelling and test results they discovered there was an excess amount of protein spillage from my kidneys. Apparently it's normal to have some spillage but most people have less than 80mg spillage...mine was in the 8,000mg!!!! They wheeled me off again for another kidney ultrasound and ultimately a Kidney Biopsy that was then sent off to Mayo Clinic. My doctors were SOOOO good at keeping me updated and informed on all the tests they were running, what they were looking for, and possible diagnosis'. 24 hours later a diagnosis was confirmed...
The Diagnosis: Lupus Nephritis Stage lV
Mine being Lupus Nephritis, my immune system attacks my kidneys which in turn also puts my other organs in danger. This would be why they were so concerned with my heart and reason for hypertension. At stage lV I am at high risk of kidney failure. The "good news" we got from biopsy, is so far no damage and scarring has not taken place so they started on medication and treatment right away to hopefully prevent damage. They immediately started me on iv steroids and the following day chemo treatments began. Stage IV is the more serious forms of Lupus being that is trying to destroy my kidney functions. The hard thing about this is it is hard to know what damage is being done until it has already been done.
A week in the hospital without my kids was so hard!! I'm forever grateful to live close to family who so willingly loved and cared for them while I couldn't!
Treatment & Medications
At the moment, my daily medication list seems to be a mile long. I'm on strong steroids to suppress my immune system, meds to lower blood pressure, meds to lower high cholesterol, water pill, OS/Cal D, iron pills, and plaquenil. I also will be going to get iv Chemo treatments (Cytoxan to be exact) every 2 weeks for 6 rounds. On top of my medications, the strong steroids I'm on make me what they call Steroid-Induced Hypoglycemic. Technically I'm not diabetic but my meds make it as if I am so I have to check my glucose levels a couple times a day and am on a low sugar diabetic diet as well as low sodium diet to help try and regulate and control my blood pressure. The doctors say my medication might permanently make me diabetic the rest of my life but we are hoping not. Which leads me to my diet...
Due to my high blood pressure I am on an extremely LOW sodium diet and as mentioned above, a diabetic diet as well. Even things you would think would be considered or might even say "low sodium" is still high for me. I'm fortunate to have married a health nut and if you know Ryan you know he is extremely knowledgeable in nutrition and how food effects the body so he has been amazing in the area of cooking and finding food I can eat. If you are curious what I eat, think vegetables! Lots and lots of vegetables (no salt added of course!) My carbs are WHOLE wheat whole grain and I try to stick with lean meats like fish and chicken. I don't entirely deprive myself of anything, but if I do eat something unhealthy it's a very small limited amount. For someone who's favorite food is pickles and mac&cheese a low sodium diet is not the easiest but I'm doing my best. Aside from the protein spillage numbers, the doctors were quite impressed with my lab numbers and how low my swelling has gone down and they said it's all kudos to my diet so that makes it easier to stick to. The last thing I want is to end up back in the hospital for a week again so if I can somehow help avoid that by eating healthier than by golly I'll try!
We are still adjusting from the month. I've only shared the FIRST week in February and as you all already know, so much more happened! But that's for another day. As you can imagine, our schedule these days are full of doctors appointments, more doctor appointments, and naps. Oh, and cuddles, lots of good cuddles.
Making up for the lost time we spent apart in hospital.