Cellular Level Change

I had dinner a few months back with a fellow bone marrow transplant survivor, and while she said many things during our time together that stuck with me, one of the main ones was about how doctors didn’t know when they did transplants back in my day (1991) and they still don’t really know now how completely and totally a bone marrow transplant changes you, like down to a cellular level. That statement has been rattling around in my head ever since.

I know I’ve mentioned before that when I was in the transplant unit, literally watching a nurse hang the IV bag full of my brother’s bone marrow, I asked the doctor standing there in the doorway to my room how the marrow got from my IV through my veins and into my bones where marrow lives. As we all watched the dark red liquid snake its way through the tubing and into my body, the doctor replied, “We don’t really know…it just…does.”

It stands to reason that if they couldn’t exactly tell me how the basic logistics worked, some of the finer points might also be a bit murky for them as well, but the medical community isn’t well known for owning their ignorance. Bravado inspires confidence, and confidence keeps everyone from freaking out. But listen, I promise I won’t freak out if you tell me you’re not sure but that you’re gonna use some of that schooling to apply deductive reasoning, logic, and rationale to find answers. What will freak me out, however, is if you brush off things I tell you as nonsensical or implausible, placate me, or fail to listen to me altogether.

I remember a time within the last year or two when I was visiting with a doctor and I made a comment attributing an issue I was having to my compromised immune system. The doctor asked what I was talking about, and I referred to the bone marrow transplant I’d had. The doctor smiled and told me that while my immune system was compromised immediately following the transplant, enough time had passed that it wasn’t a factor any longer and by now my immune system had long since returned to normal.

On one hand, it sounded logical, and I almost felt foolish for even mentioning it, but on the other hand, how else do you explain how easily and how often I get sick? I shrugged it off in that particular case and didn’t really think about it again…until this past December when I had a battery of tests run to see why my platelet count had dropped. One of the labs came back with the note “All immunoglobulins appear decreased. Pattern suggestive of hypogammaglobulinemia.” Basically, I have a compromised immune system. Hmm.

I have to remind myself that the reverence placed on doctors must create a lot of pressure for them. All that expectation and trust and hope…ugh. Makes me glad I just deal with construction where the worst thing that can happen is a roof falling in on someone’s head. But in all seriousness…the most important knowledge your physician will ever have about your body comes from YOU. You have the higher education they need to combine with all of the other preparatory learning they did to get in that exam room with you in order to make accurate diagnostic assessments. Any doctor who doesn’t place as much importance on your input in that process as their own doesn’t have any business telling you the time of day.

And now, I’m going to go convalesce and hope this triple threat of sinus infection/upper respiratory infection/lower GI bug dies out any minute now because I’ve about had enough. 🤢😷🤒🤧💩🧬🦠🧪🌡🧫

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Independence!

Happy July 4th, everyone!!! It’s been a minute since my last post, mostly because I’ve been slammed at work and am currently enjoying a lovely, relaxing vacation in northern New Mexico with my husband and two dogs.

I’ve been having good days lately, with fewer bad migraines (I’m assuming because I’m on vacay and don’t have the work stress triggers?) and I’m currently working my way through Box 11 of 12 of my Mavyret. I’m almost done y’all!

It’s a little bit of a bummer to do the Fourth in the mountains with smoked brisket and fireworks and not be able to have some colbeers, but then again, when the tradeoff is getting to have many more Fourths, I gotta buck up and be grateful to be here, period. You know what I discovered the other day that is delightful??…Watermelon Lemonade Snapple! So good. Also, not super popular/common in NM, oddly enough, but if you’re in an area that does sell it and you can’t have colbeers today, go get some. They’re like liquid summer!

Have a happy and safe 4th everyone!

It Puts the Needle in Its Gut

So I had an appointment with a neurologist this morning to talk about these ridiculous migraines I’ve been having. I’ve always had headaches, ever since I was in elementary school, and my mom got called to come bring me Tylenol so often that she finally started buying the jumbo bottle every year with my school supplies to leave with the office for me to go get as needed.

As I grew into adulthood, the headaches morphed into full blown migraines, and over the past year or so, they’ve gotten more frequent and more aggressive, especially since starting the Mavyret in April.

So I went to see this neurologist, who had me fill out the most paperwork I’ve ever filled out before an appointment, like EVER, and then we did some more questionnaires in the exam room, as well as some little physical measurement tests. He put some kind of tuning fork on my toe and asked if I could feel it…I said “feel what?” He touched it to my hand, where I could feel the pronounced vibration that I couldn’t feel in my big toe. He did the same thing with a lancet needle lightly on my fingertips and up my legs and arms. We did some resistance exercises as well, and then he had me sit back in my chair so he could share his thoughts.

He’s ordering a sleep study because he thinks I’m losing oxygen at night in my sleep. He’s having my primary care doc look into adjusting my depressing meds because he thinks I’ve acclimated to them and am having sleep issues because my serotonin levels are jacked up. He thinks I have neuropathy from chronic Heoatitis C, as well as some carpal tunnel syndrome. He also thinks I have some vitamin deficiencies.

I go in for one thing………jeez.

In any case, I left with a scrip for an injectable that’s supposed to help prevent migraines, as well as an injectable to try at the onset of my next migraine and a nasal inhaler to try at the onset of the migraine after that to see what works best. I specifically asked if it was a needle and plunger scenario, and was assured that both injections would be a pen. Went to pick up the preventative and it was literally a prefilled syringe with needle and plunger. So, I gave myself my first ever shot today. #gangster

Anyway we’ll see how all of this works out. Fingers crossed!

Undetectable

Drumroll…..after only four weeks of Mavyret, the viral load of HCV in my system is undetectable. You guys, I’ve literally had this my entire adult life and half of my childhood. It’s super surreal to have someone look at me and tell me that after taking pills for a month, it’s basically gone. Crazy!!!!!

My liver counts that have been elevated since ever have also decreased by 60%, one of them is now only four points outside the normal range.

You guys. Seriously!

I still have to finish out all twelve weeks of the meds just to kill it off for good, but dude. What!!! 🙂

Numbers Don’t Lie

So it’s been five weeks that I’ve been on the Mavyret now. I went in last week to have blood drawn so they could check my viral load and see if the meds are doing their thing. In true specialist fashion, the labs were drawn last Tuesday and my appointment to get the results isn’t until tomorrow, because if you don’t have to wait at least a week, it takes some of the magic out of it all, right?

I go in tomorrow morning to see the P.A. and hear if anything’s been going on under there besides migraines and liver cramps. Cross those fingers!!!

Speaking of migraines, I still haven’t had my appointment with the neurologist about these pesky migraines because his wait was so long. My appointment is June 10th. Until then I get to just keep curling up into the fetal position a few times a week. Tuesday, I was fine all day and then around 3:00, I heard that low rumbling off in the distance of the Migraine Freight Train headed my way. Literally within an hour I was down for the count in a dark bedroom. It stuck with me the rest of the night. I sure wish I could wait even longer to get help! Golly!

I’m hoping tomorrow is a positive visit with good news that I’m halfway done with treatment and responding well. Even more hopeful that the neurologist can figure out how to kill off whatever evil critter is tap dancing on my medulla oblongata. I could be finished with all this mess by late June, with just enough time to get a nice microderm facial and some ‘angel kisses’ before my birthday in July so I’m really feelin myself again for a change!! Snaps!

Just a Little Cramp

I had to fly for work this past week, a late evening flight into Houston followed by another hour and a half drive to get to the small town I was doing work in for a couple of days. It was a quick trip that was pretty much on the go the entire time, so by the time I got home Friday at 6p, I was fried.

We had plans to go over to a friend’s house for dinner yesterday evening, and I noticed that my right side up under my ribs was a little achy but that’s happened before, so I just kind of brushed it off and went on about getting ready to go out.

My side kept aching throughout the evening, and when we got home, as I went to get into bed, I must’ve torqued myself just so about the abdomen, because I had the most breathtaking cramp/Charlie horse/liver spasm/whatever EVER that stopped me dead. I laid in that weird position taking shallow breaths and clutching my side as tears rolled down my face for about 10 minutes.

After about 10 more minutes I was able to roll the rest of the way into bed and lay flat on my back, and after about 20 minutes more, I was able to fall asleep. It’s still tender today.

I have no clue what set that off. I’ve had sharp pangs before, but they were like a quick electric shock that was gone before I’d fully processed what was happening. This one was more like a taser shock. Not cool. If that could never happen again, that’d be great.

For now, I’m gonna keep lying here in my recliner, very very still, so as not to attract any attention from any of the internal organ demons running amok.

Good Sunday,

Tessa’s Angry Bum Liver

Truckin’ Along

It’s been a minute since my last post, sorry y’all. I actually feel like I may (knocking on wood) be acclimating to the meds and the headaches may start to abate. The neurologist I was referred to is booked out 6 weeks in advance, so I won’t see him until mid-June to find out what’s kicking around in there, but I do feel like it’s been a little less violent lately…

I haven’t noticed a change in my energy levels just yet. My sleeping patterns have been pretty rando, actually. Some days I sleep like it’s my job, and other days I go to bed at midnight and am wide awake at 2:30a doing crafts in my office. I will say that when you’re a midnight crafter, nothing beats a good diamond painting. The repetition of placing thousands of tiny plastic discs on a sticky color-by-numbers mat does wonders for shutting down pesky brain activity.

So I’d previously mentioned being diagnosed with Aplastic Anemia at 13. I had weird bruising and bleeding that tipped us off that something was up, and the initial standard lab tests showed that my platelets were at 81K; normal is between 150K-400K. Over the span of two to three months, while doctors did numerous tests to try to figure out what was wrong, my platelet count dwindled, plummeting to a terrifyingly low 2K, wherein I was told to lay in my hospital bed and not move while the platelet transfusion was on full throttle.

They tested for all kinds of leukemias, cancers, ITP, HIV, AIDS, etc., finally settling on the rare Aplastic Anemia, which occurs in only one to two people per million each year. There are a variety of causes of aplastic anemia, but as was the case with my diagnosis, in about half the cases the cause is unknown. Growing up in a rural farm community, pesticides and insecticides were common, which can be a cause. Certain drugs can also cause it, such as chloramphenicol, which is an antibiotic I was prescribed as a child to treat Rocky Mountain Spotted Tick Fever (I’m telling you, I’m a drain trap for weird health issues). We never really knew for certain.

As soon as we had a diagnosis, the doctors told us the only course of action with any real promise was a bone marrow transplant, so they started out by testing my older brother to see if he was a match. Despite my misfortune when it comes to random health problems, God definitely had my back on the BMT, because it was One & Done with my brother – no other testing needed, he was a match. Everything happened so fast after that…it seems like within days, we found out he was a match, I had surgery to insert a Hickman catheter, and then I was wheeled up to the BMT Unit and shown the room I’d be in for the next two months. I’m still annoyed that they let me walk into the room, with its’ full length Laminar air wall, without telling me that once I went in, I wouldn’t be allowed to come back out. If I’d known that, I’d have given my mom and dad one last hug without the gowns and masks and gloves and regalia before I walked in. That’s how they get ya…

I walked into my room on December 3, 1991 and started a course of chemotherapy to kill off my immune system. On December 10, 1991, I received my brother’s bone marrow (if you’re curious, it looks like blood and is administered through an IV…when I asked the doctors how it got from my veins to my bones, they said, “We don’t really know…it just does.”). On Christmas Day in 1991, my blood counts showed the first signs of bouncing back from the illness, and on January 28, 1992, I was released from the hospital and allowed to return to my hometown two hours away. The day I got home and we pulled into our driveway, our house had banners and balloons and flowers along the garage door, my bedroom windows, the light in the front yard, and all over the front porch from neighbors, coworkers of my parents, friends from school, people from our church, etc.

Throughout the transplant, my mother stayed with me in the city during the week, and my dad and brother would be back home working and going to school. Mom stayed at the Ronald McDonald House, and would have frequent visits from my Grandparents during the week, and from my dad and brother every weekend. When Mom ran out of personal leave, the teachers in the school district back home donated their own personal days to a pool for her so she could stay with me and continue to get a paycheck.

My dad’s job was our primary insurance provider, and the insurance company started sending a rep to check on me at the hospital during the transplant, and long after I got out…not just because I was a huge investment for them, but because they actually cared how I was doing. While Mom was in the city with me, our church and my parents’ jobs organized food delivery so that not a single day passed that my dad and brother didn’t have a home cooked meal provided for them in Mom’s absence…for two straight months!

After we got home and Mom was comfortable going back to work, I was still at home because being around people was too risky with my weakened immune system. Mom’s friends who didn’t work took turns stopping by to check on me, picking me up and taking me for a drive just to get me out of the house, going to the Sonic for a Vanilla Coke, or taking me back to their house with them to hang out while they did chores.

All of those experiences were like being able to see the face of Jesus each day in the people around me, and showed me that God truly is everywhere. He has a plan for each of us, and while there are times when gross stuff happens, He is always there to walk through it beside us. That has given me the comfort and strength to face each subsequent random health crisis I’ve encountered head on. That doesn’t mean I don’t still get scared or worried or anxious or sad, it just means in the end, I know that He has plans for me…plans to prosper me and not to harm me, plans to give me hope and a future. (Jeremiah 29:11)

Much Love – Tessa & Her Bum Liver