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#but I had an appointment with a hematologist last week

levikra · 10 months

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I have Acute Lymphoblastic Leukosis aka Blood Cancer

buckle up :D

This post should've been here for sometime now cuz I prefer keeping everyone updated across all the platforms that I use as an artist.

So - Hi! My name is Evein, on 1st of May 2023 I turned 21 and since then, from 5th of May my health decided to pull a quick one on me, propelling the events that currently make me reside at the hospital with an oncology.

It all started with a tonsillitis-like fever, accompanied by furunclosis in three places on my body, a high fever that lasted for 5 days in the first half of May itself and other unpleasant symptoms. It felt weird, I've never had such an intense streak of sicknesses kick my ass like that, but of course - I went to doctors to get checked, the classic blood testings and general examinations and stuff.

That's when on 10th of May my blood test was checked by a dermatologist regarding my furuncle problem and - after some brief moments of her talking with the main doctor at the clinic - I was rushed to the governmential hospital due to the fact that my blood results had... no white blood cells. Literally 1.83 at the accepted range being much higher than that.

Needless to say I was fucking shocked, I've never dealt with the severity of the situation and let alone while being completely on my own as a human person (working, living, providing for myself, you call it).

At the hospital, after several examinations and another blood test came the recommendation paper that doctors signed with urgency, first and foremost I needed to get to an appointment at the hematologist's. That I did on 14th of May and since that point of time, till 19th, I'd been monitored, given antibiotics for my tonsillitis-like symptoms, along with my furunclosis and after 19th we ruled out the condition to be leukosis, became my white blood cells started coming back to normal with the antibiotics aiding my immunity, but despite that - thr condition still seemed as something more reminiscent of mononucleosis (which, however, in another blood test was disproven).

After exactly a week of feeling better, albeit dealing with leftover anemia, I started developing the same symptoms back and even worse, to the point of losing consciousness and thrwoing up in an elevator on 29th of May after going out for the second pack of antibiotics my hematologist had then already approved of to use to help out.

That's when I was rushed to the hospital again and - the next day - my hematologist arranged an appointment at the big clinic that has an oncology ward specifically for my situation. On 1st of June I was officially admitted with Acute Leukosis (the diagnosis doc attached is in Russian).

Since 1st of June the treatment has been ongoing, I've received three rounds of chemo along with supporting hormonal abd antibiotic therapy. Me is balding too, ofc. :D

And thus, this story leads to a logical question - what's now?

It's day 24 of my treatment, out of 4-6 weeks of inital induction period of leukosis' treatment (the overall chemotherapy to destroy tumor cells down to <5% in my bone marrow). After the induction period, if it's proven to lead to remissions - I'm then admitted out to certain periods of time in between infusions + need to take supporting medicine by myself (hence buying it too).

As an independent freelance artist who's existence is tied to being able to do creative work out of, well, any circumstances, I was sadly forced into situation of asking for monetary support, simply because it's stupid to expect to break your own back trying to work harder when you're body is collapsing on itself.

I have a goal on Boosty open for donations and I deeply appreciate ANY and I mean ANY traction of this post. I made a similar thread on Twitter covering the situation and have recieved a lotnof incredible support that has helped me a LOT so far, but my treatment is ongoing, or to be precise - will last in its entirety for 2-3 years. With the momentary help I was able to secure my living situation and get my pet cat to live for the current time period at my friend's, but you understand how that is just a temporary measure and, of course, I don't plan on stall myself - I simply just can't afford that even while hospitalised.

BOOSTY is very sus when it comes to singular donations higher than 120$ but if you happen to donate below that or in several different ones to bypass their antifraud system (only if you wish to) - the link to a goal is here -

#levikra draws stuff #dragon age #digital art #dragon age fanart #fanart #dragon age 2 #da2 #dragon age inquisition #blood cancer #acute lymphoblastic leukosis #donations #support the artists #artists helping artists

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skvaderarts · 2 months

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Caught the Flu so this chapter will be a little late because I'm basically constantly sleeping lol.

So I caught the flu! Who's shocked? Not me. Not at this point lol!

Pretty sure it's the flu because I NEVER catch a cold and haven't had my flu shot yet this year due to other procedures that were going on and it certainly feels like the flu. It's not COVID though so I'll take it because I don't want that ever, especially with my chronic asthma. Probably got it from all the doctor's office visits I had in the last 2 weeks about my surgery. Still waiting on a date for that, but it's looking like the end of next month at the latest so far so there will be some updates between then and now. Anyway, I just wanted to let you know that I'll be updating the next chapter on Friday since I should feel better by then. I tried writing, but I just couldn't this week because I felt like crap smh. I'd post on Wednesday, but I have a doctor's appointment (yes, another one!!) with my Hematologist on the 19th so that would be squeezing hard for time, especially with my cold. So I ABSOLUTELY WILL SEE YOU ON FRIDAY THE 22ND OF MARCH. UGH! This year, man... It's been unbelievably crazy, and we haven't even made it to APRIL yet?! *Cries*

Hopefully, you are all doing well! And if you need anything, I'll still be checking comments here, on Discord, on the Discord server, and my Tumblr account. See you all in a few days! I hope you're all having a good week! Thanks for your patience. If you want to chat, please feel free to reach out wherever you like. You aren't bothering me! Links are in my bio! Bye bye!

#SkvaderArts #SkvaderArts Updates #Update #Update on Me #I'm okay!#I should have my doctors check to see if I'm immunocompromised #because FFS!#See you soon everyone!

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headsortails-storyofagayguy · 2 years

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A Kiss of Cancer

As I sit in the exam room waiting for my specialist to come in, I think to myself about how I’m back in this room and question how many times I’ve been here. I was diagnosed when I was 23 and in a couple of weeks I’ll be 28. In the past month and half I have lost close to 30lbs and the colon cancer growths are back unfortunately which is why I’m sitting back in this room to go over what’s next. My specialist walks in after a couple of moments and asked me how the radiation has been going and if my lymph node have started to diminish away from the swelling. I was taken back for a second and asked him what he was talking about only because I thought we had ruled out lymphoma a couple of weeks ago with my primary doctor and that I hadn’t been on any form of radiation, to found out that the paperwork in his hand was for me, and it wasn’t a mix-up; it's more than just the colon cancer this time. The swelling of the lymph nodes indicated it was some form of cancer, as we have ruled out all other possibilities with multiple panels of blood work. I now have to see a hematologist and look at my options as I mentally prep myself for what will be my 4th preventative surgery for removing the cancerous growths and also conduct a biopsy during the surgery. My specialist last words to me before leaving was that he’s been a physician before and that this wasn’t something to sleep on, and he was concerned, as I have tried my best to cope with this, as I already knew even before stepping into the exam room again that I would be having another surgery and that all the symptoms were back. Even my boyfriend tried his best to make sure I was taking care of myself, but in reality it’s scary because I don’t want to have a 4th surgery. For the past couple weeks, I have ignored it; pretending I never heard the diagnoses. I’ve gone through enough complications and visits to the ER from my past surgeries to not want to go through with this surgery scheduled for next month.

The healing process is painful and even with the painkillers it doesn't fully numb the pain away. I have a couple more weeks until I’m on the medical table again, surrounded by my surgeon and his team as they remove those cancerous growths. I waited until I was in the car to let my tears run down my face as I weeped driving away, processing my recent doctor's appointment. I'm healing from the news and mental preparing myself now that I’m on a different journey as I prep myself for my 4th surgery.

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taypae · 1 year

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I had an appointment last week with a hematologist/oncologist and I have to wait another week for the results and I’m freaking out. I’m so used to doctors and shit but this one’s really upsetting. But the good news is if it is leukemia it’s most likely a… minor (ish) type that can be managed. But frak this might be one of the scariest things I’ve had to deal with. And I’ve dealt with a lot.

#doctor tw #medical tw

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certifiablecatlady · 2 years

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Medical Update 2

So on this episode of "Laura's Adventures with IgA Vasculitis" I finally got the first round of serious iv infusion treatment today. I was supposed to start the infusions last month after my rheumatologist and a hematologist agreed that the steroid + immunosuppressants I've been on since February aren't doing enough to get rid of this. The doctor described the new treatment of Rituximab as like when you smack the side of a rabbit ear tv to fix the static. So even though this drug is usually used for other diseases like cancers sometimes just a good smack in the immune system can get rid of vasculitis. But of course the health insurance was being a total bitch so it took weeks of very frustrating phone calls to get approved. Thankfully Sam handles most of the phone calls because he is wonderful and willing to badger them for answers.

I had to go to the hospital at 8 am today for the first infusion of Rituximab. I was of course extremely nervous about how this was going to work but it started off pretty well. The nurse I got (also named Laura and born exactly one day before me?) was very nice and helpful and I tolerated her putting the iv in very well. They brought me to a fairly nice little area with some curtain privacy and a tv where I just watched random Food Network shows all day. I took the pre-meds like a champ and started off alright with the rituximab on a slow trickle. In fact I felt so good I got cocky and had Sam get me some free snacks from the hospital, as I was starving at that point from not having eaten since the previous night. I enjoyed a little applesauce cup and orange jello and some ginger ale and felt good and decided to lie back in my reclining hospital chair to relax which was mistake number two.

I then started feeling extremely cold out of nowhere and had Sam ask the nurses for some blankets but it felt like nothing was enough as my teeth started chattering and body started shivering uncontrollably. I then felt a huge sudden wave of nausea and vomited all my snacks and drinks up until I was just retching clear water. At this point I was panicking that I was allergic to the medication and was never going to be able to cure this stupid disease if nothing works for me. But the nurse assured me that my reaction did not seem to be allergy related. We think it was just me and my weak ass stomach unable to handle eating while on the iv, made ten times worse by my anxiety issues and laying down too soon after eating. So after getting some anti-emetics and finally feeling better after almost an hour, we finally started up the rituximab again and I was able to finish out the treatment by 3 pm.

So that's now 1/4 infusions done and for the next three Thursdays I get to do this again. But I think fasting before and during the appointment should make it go smoother, plus the doctors said the first infusion is always the roughest and slowest as your body adjusts to the meds while they gradually titrate up the dose. After the 4 infusions I imagine I'll go back to the hematologist or rheumatologist and monitor how the meds have worked and maybe I'll finally be cured. Or have to do another 4 infusions in 6 months. Woohoo.

I feel alright now, I've been able to eat and rest without much issue. Got a nasty bruise on my arm from the iv but that's how these things go. It sucks that this has gone on for so long and also with these intense drugs my immune system is basically just off so I can't take any risks about seeing people at all even with masks. I don't get to do Halloween with my family this year or see my friends that I miss dearly. But Sam and the kitties are taking good care of me and here's a free kitty pic for reading my sad medical journal.

#cw medical #cw needles #cw illness #cw emetophobia #cw unsanitary

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thebibliosphere · 3 years

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Hello Joy! Long time follower and I really enjoy your blog. I just wanted to hope into your asks bc i've had a very frustrating day of doctors appointments and even if you don't have any advice, i was just hoping to rant to someone who'd been around the block with elusive medical illnesses (though please dont feel obligated to respond to this at all), and i apologize in advance for an almost certain lack of coherence.

I've been dealing with quite a lot of doctors appointments over the years, from treating insomnia, my adhd, and depression and anxiety, but long story short we have discovered 2 years ago that I have low b12. I have also been dealing with a chronic cough for 2.5 years. Unfortunately, oral supplements did not work for the b12 and i had to get monthly injections, which stopped when the pandemic hit and, despite doing for 4 months, didnt bring my levels up to normal anyway.

I recently restarted the injections, but my doctor will not approve my request to have more frequent injections, which i think i need, because its not fatally low (its at a 170 based on recent bloodwork). I finally saw a respirologist for my cough, and she has no idea what the cause of it is, even suggested that its psychsomatic, and put me on a different inhaler that i tried before (ive tried a million treatments for it, from post nasal drip meds to ppis for acid reflux to allergy meds, and the inhaler is the only thing that helped a little).

I've gained 20-25 pounds in the past 2 months, when ive been the same weight since i was a teenager (im 22), but my bloodwork continuously come back normal for everything but b12 and vitamin d, so my doctor also has no explanation for that (including normal tsh, and the last time i brought up testing other thyroid factors the doctor told me they dont do that and honestly made me feel silly for asking. Though, granted, my current doctor is a different one). I'm going insane because of how tired i am all the time, and the fact that I feel like a hypochondriac bc all my tests are always normal, and my doctor is only available for appointment once a month.

Sorry for the long block of text, i just feel, when looking at your blog, a sense of hope that eventually i'll have answers and you're just really great. ❤ i hope you had a really good day today ❤

Get a new doctor! Get a new doctor right now!

When you dip below 250 is when you can start to experience chronic fatigue, mood disorders and worsening cognitive function.

170 is when you're on the cusp of things getting seriously bad and depending on your homocysteine levels can start to cause pain and nerve damage. This is also when my hematologist estimates I started to sustain prolonged damage to my nervous system. This was also when I started experiencing the symptoms of early onset dementia.

140 is when my iron and folate levels tanked suddenly and I was so symptomatic my (then) new doctor was worried I had cancer and rushed me through seeing seven specialists in a week. The same day as seeing the hematologist it dipped below 110 and I started hemolyzing and went into medical crisis as my kidneys and heart started to struggle. I owe that hematologist and his team my life.

The good news is the shots you are getting right now are keeping you stable, but your doctor should NOT be waiting for your levels to hit crisis mode to resolve this issue. Please do not give up on this, you deserve better treatment.

Also, what kind of supplements are you taking?

I don't absorb Cyanocobalamin well through my gut, which is the most common type of oral supplement prescribed. What I do absorb through the gut is Methylcobalamin, so if you haven't tried that yet, it might be worth a shot to try and help you manage your levels on your own. Same with folic acid, I don't absorb it for shit, but when I switch to a methylfolate supplement, my numbers start to climb*. If you have tried this and it's been ineffective, then I'm going to emphasize that you need to push your doctor to increase your number of shots to get your levels up because what you are living with is not an acceptable quality of life, and I am so sorry :(

I hope you are able to rest and have better days in store soon. Take care, and if you want to talk about b12 or stuff, hit me up.

---

*Before anyone asks, yeah, I'm aware of the MTHFR gene mutation. I just can't test for it because the procedure is considered to be "investigational" and neither my geneticist nor my insurance wants to run it and I don't want to sell my data to a gene company lol.

#chronic health tag #pernicious anemia #medical neglect

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grace-lost-in-space · 3 years

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Cleveland Update

Today has been really bad and scary in so many ways. I had a blood transfusion two weeks ago when I visited my hematologist in Cleveland and my hemoglobin was 6.0 and I have to go back to see the hematologist next week. I already had an appointment scheduled with the neurologist for August 2nd (Monday) but hematology could not get me in until Tuesday and the appointment is not optional because of how bad my labs have been. So now instead of staying in Cleveland on Sunday night and leaving Monday after my neurology appointment, I have to also stay Monday night AND Tuesday night because my hematology appointment is on Tuesday afternoon and I live about 10 hours away from Cleveland. I feel so sad. My mom is making me go by myself again and I told her today that I will also have to stay on Monday night and Tuesday night. She yelled at me and told me that my health is "too expensive". And I still have medicine sitting at the pharmacy because I could not afford it. I just feel so sad. I feel like such a burden. I get $25 over the monthly limit to be eligible for Medicaid so I only have Medicare now because of getting disability benefits. I cried when I found out I was disqualified from Medicaid by $25. My mom is mean and abusive but I still feel so guilty because I just keep replaying what Legs (my therapist) said over and over in my head. "I think it is selfish for you to go to Cleveland." Even though Cleveland has saved my life and they are the only reason I am alive, she thinks I am selfish for going there. CB's response to that was "Fuck her. You're alive because of Cleveland." Which is true.

I just feel like the biggest burden ever, not to mention my mom told me that she is only letting me stay Sunday night at a hotel which means I probably will have to sleep in my car Monday night and then by the time my appointment is over on Tuesday, it will be way too late for me to drive 10 hours home so I also will probably sleep in my car on Monday night too. I would not be so scared but Cleveland is a scary city. I have been going there since November so I do know my way around at least a little but I have never slept in my car there so I am really nervous for that.

I cannot stop crying. I also am supposed to meet my new therapist on Thursday and my last session with Legs is on Wednesday. I feel like I am going to throw up.

I do not want to have another blood transfusion. I am so scared. And then today, blood was coming out of my g-tube which means I have bleeding somewhere in my digestive tract. I just want to give up. I have fought so hard and I am so miserable. My mom is getting worse and worse and I just feel so sad and so alone. I just want to close my eyes and go to sleep and not wake up. I am so sad and so scared and so exhausted.

#update #hospital #therapy #hospital update #ed recovery journey #ed recovery #anorexia recovery #beating anorexia

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fanfansfury · 3 years

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How it started...

My story can be considered a complex one starting from my childhood. For as long as I can remember, I have medical issues that I haven’t ever gotten a real answer for.

As a child in elementary school, I remember being sick way more often than my peers. Stomach bugs, infections, you name it. It felt constant. I also had an amazing ability to pass out unannounced or with very little warning. I’ve always loved being active in sports and working out, but as I have gotten older, I have seemed to build an intolerance to exercise.

My medical history is significant for chronic anemia, low blood pressure, B12 deficiency, anxiety and depression, and a bladder disease named Interstitial Cystitis. My anxiety increased as I understood more that I didn’t’ have control on whether I would pass out unexpectedly or not.

As years went on, I was able to recognize the signs of low blood pressure and could sometimes avoid passing out if I caught it in time. I lived a mostly normal young adulthood full of college and grad school experiences typical of most people my age. I got married to a wonderful man, Sam FanFan, in 2011 and soon had our first daughter, Kyla Maresa, inElla will decrease her sound substitutions in connected speech, with 1-3 prompts or cues from an adult, in 4 out of 5 recorded opportunities. 2012. Kyla was also no stranger to medical issues as a baby, as she gave us a few heart attacks and hospitalizations. Now, as an active 8 year old, she is an accomplished dancer and student, who has seemed to grow out of a lot of issues we used to see with her frequent infections and weak respiratory system. (YAY!)

Fast forward to our second daughter, Kaelani Burke, who was born in 2017. Her birth itself was uneventful. Three hours after she was born, I began hemorrhaging. It was traumatic to say the least, for both me and Sam. To this very day, I am beyond thankful for my labor and delivery nurses who caught the hemorrhaging in time to save my life.

Kaelani has been through the wringer in her short 4 years of life. She managed to be diagnosed with 12 ear infections by the time she was 20 months old. Oral antibiotics didn’t seem to touch them and we needed to resort to injections almost every time. At 21 months, we knew surgery couldn’t be avoided anymore and she had her adenoids removed and tubes placed in her ears. Neither of which seemed to help avoid recurrent ear infections anyway.

In late 2019/early 2020, Kaelani began having severe nosebleeds. At first, Sam and I chalked it up to dry air and got humidifiers for almost every room in the house. The remedying we tried did not help slow the bleeds down and they were happening multiple times a day, both at home and daycare. By the end of January 2020, Kaelani began to fall asleep after the bleeds. I immediately took her back to her ENT. After about 4 very frustrating appointments and conscious cauterizations, they drew her blood. We were immediately told hemotology/oncolocy was waiting for us upstairs. Though they couldn’t pinpoint the exact disease at that point in time, it was clear to the team Kaelani was suffering from a rare vascular disease and it warranted further investigating.

The next day, Kaelani was brought in for surgery to cauterize the blood vessels that seemed to be causing the problem. This procedure was supposed to be in-and-out to merely stop the bleeding. When Kaelani was in recovery, her surgeon came to talk to Sam and I to report that while she was cauterizing, she saw many telangiectasias (abnormal blood vessels normally found in older adults) in her nasal lining that were quite concerning to her. We were then admitted and by the end of the night, had seen hematology, ENT, and genetics. She was brought in for an ultrasound of her major organs to make sure there wasn’t active bleeding. We were discharged with what seemed like a million appointments ahead of us. Genetics and Hematology are confident she has a very rare blood disorder called HHT (Hereditary Hemorrhagic Telangiectasia), but in order for this diagnosis to be officially on her medical record, a parent needs to be diagnosed. On her medical record now, it states (suspicion of HHT), which may not always get her the help she needs say she were to have a seizure or brain bleed. Now, let’s cue the blood issues I have had my entire life and assume the connection here. However, since I am currently asymptomatic, this will be no easy feat. Especially since one month after this ordeal, COVID-19 hits and elective appointments are not at the top of anyone’s list.

Since last March, I have seen cardiology, urology, pulmonology, and hematology. As suspected, because I am asymptomatic at this point in my life, not much is being found to help Kaelani’s case.

However, during the pursuit of Kaelani’s diagnosis, my chronic anemia is going strong, so my hematologist decided it was time to do further digging. My anemia is NOT iron related. I am not iron deficient. So, we assumed it was nutritional. I spent a few months on vitamins that should have improved my anemia, even just a little bit. It got worse.

That brings me to this past week. After months of trying to figure out why my anemia continues to get worse, my hematologist decided it was time to do a bone marrow biopsy. In case you were wondering, the biopsy is quite painful.

Now... we wait. Results are expected by March 4...

Stay tuned.

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riseoftheredking · 4 years

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EMERGENCY

I'm in a serious catch and idk what to do. I'm completely homebound because of Covid and lack of resources I need as a germaphobe with OCD. I'm not even sure how to organize this, so I apologize in advance if it's confusing. You can ask me questions if you need clarification.

he/him or they/them pronouns only

CW: awful doctors, blood clots, needles, misgendering/transphobia, hell week mention, ableism

So I take testosterone in gel form, and I have a blood disorder called factor V leiden, in which I'm at risk of blood clots. That means monthly blood tests, and when my hematocrit gets too high due to the T, I require a phlebotomy (bloodletting, yay!) I was fairly homebound before covid, for details I don't want to get into, and had been asking my hematologist for months for help in setting up blood tests and phlebotomies from home. He told ME to find an agency and run it through insurance. So I did that. He put it off for two months to fill out the prior auth form which in the end wasn't even needed (and seriously went on to say he never got it while I was literally there when they printed it out. I HELPED them find and print it.) This entire time, I haven't been able to get a blood test or phlebotomy. My hematologist hasn't pulled through. Last I spoke with him in early May, he very unsympathetically told me "I know you don't want to hear this, but maybe you should just endure hell week (except he just phrased it like 'bleed') and lower my dose of T in response to me telling him I had already lowered my T as much as I could. He has NOT helped me with figuring out a solution here, and his office takes forever to get back to my insurance case manager. He even misgendered me during the phone appointment, and has done so repeatedly in office, IN FRONT OF OTHER PATIENTS.

My primary care doctor worked it out so I could do a blood test from home (by doing it MYSELF. Yes, I stuck myself repeatedly until I filled their vials and had someone return the blood to them. It wasn't a terrible experience but it's not one I should have had to go through, and I'm gonna have to do that EVERY MONTH) but he understandably doesn't want me doing a phlebotomy myself. I got the results back from that test, and my hematocrit is 53.3%, and my hematologist says 54% and above, I'm at risk of a clot. I'm REALLY CLOSE HERE! By my test next month, I could have already died of a clot. He was once again unsympathetic and will not help. My primary care doctor won't help this time because he feels this is something best left for said hematologist. So while he'll continue to provide home test kits for me, everything else is out of his hands and is left up to the hematologist who refuses to do anything because I'm "not at risk YET". At this point, my mom thinks he might be doing this on purpose. He's literally waiting for me to cross into that threshold where I can get a blood clot. He's really waiting for me to die.

My caseworker was supposed to be finding alternatives in my county as far as home testing and phlebotomy, but she told my insurance case manager that she had talked to me about phlebotomy from inside my car (1. She didn't. 2. It's not possible. 3. She talked to my mom about tests that way, back in FEB and my mom told her IT'S NOT POSSIBLE) and she was very disrespectful when she did speak to me (via text. writing my entire experience off as willingness. When I told her not to do that because it's ableist, she didn't bother to respond at all and I haven't heard from her since) Just like every other caseworker I've had, she's not interested in helping me. By lying to my insurance, I could have died. If I hadn't called my insurance worker, I would have never known, and my insurance worker would have thought I found a solution and would have stopped looking for alternatives.

Finding a new hematologist is going to take more time than I have. I DESPERATELY need a phlebotomy IN MY HOME. I CANNOT leave. I can't keep skipping T. I need it. My hormones are all over the place and it's making me really depressed, even more than my toxic environment and covid and everything going on inside and outside my personal life. I don't need hormone fluctuation to add to it. I can NOT afford another hell week. It's torture for more than just the bleeding. I need my T and I need a phlebotomy from home. And I'm at a point where I want to take legal action against my hematologist if I can because I'm fed up with how he's treating me. I can't take this anymore. I NEED SOMEONE TO FIGHT FOR ME. MY LIFE SHOULD MATTER! MY HEALTH SHOULD MATTER! MY TRANSITION SHOULD MATTER! 😭😭😭😭😭😭😭😭

#american healthcare #signal boost

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allisonjournals · 4 years

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Rollercoaster.

That’s what this journey has been this past month or two. I went to my hematologist appointment today. It was at a cancer center. I’ll lay out my time there for my own memory.

I got there at 12:30. Filled out paperwork about myself, my symptoms, my family health history, etc. Around 12:45 I met with a woman who gave me a booklet about the cancer center and information if I had questions. She took my photo and sent me to the lab to get my blood drawn.

In the lab, I had about 8 vials of my blood taken. I’ve been sick and weak the past few months (and I’m on the heavy days of my period) and my arm went numb. I started to feel a little dizzy, but I stayed strong when the phlebotomist told me I had amazing hair. I was shocked, as I had recently cut my hair into a pixie, and it hasn’t looked the best lately. She commented on the shiny color and thickness. I thanked her and felt better, despite my discomfort.

After that I was guided to the floor where my doctor’s office was. Apparently my paperwork got misplaced twice during this moving process. I waited a couple minutes before going into a room. A nurse took my vitals. My normal vitals usually indicate my low blood pressure. Today it was high! My heart rate was 100 BPM. I felt dizzy and a little nervous. I couldn’t slow my heart rate by relaxing and breathing slowly. The nurse told me I had a low grade fever and said a nurse practitioner would be in shortly.

After the nurse practitioner entered she asked why I had stopped in. I told her. I’ve had a history of low white blood cell count, I’ve been sick non stop for three years with various viral infections, sinus infections, uti’s, I’ve had mouth ulcers, prolonged bruising, bone and joint pain. I told her about the history of cancer in my family. Grandpa melanoma, prostate, leukemia. Grandma lymphoma, breast. I told her I’ve been feeling a little sick with a cough and was uncomfortable swallowing because of mucus. I told her my wrist joints were aching. She took notes and said the doctor would come in shortly. This was at 1:34.

Up until this point I was preparing for what I’ve been imagining for weeks. A 20 minute conversation discussing what could be wrong, a possible solution, possible hope for answers. I’ve never been so let down in my life. That sounds so dramatic, but I left feeling more frustrated than anything.

Around 1:40 the doctor entered and asked me how I was feeling. I told him I’ve been sick for 3 months with a viral infection. He asked me where I was from - I told him the city in Alabama. He then asked “where did you grow up?” I told him Minnesota. He then commented on my accent. He proceeded to tell me that my blood counts were completely normal. He said they would run other tests but he didn’t expect to find anything. He told me to make an appointment for a checkup in three months.

And then he left.

I should have asked questions. I should have asked for explanations. But I let him walk out. I was surprised “wow my levels were normal? That’s great but, I still feel sick” I thought. He walked into another patients room as I wanted to ask him questions. I never got my chance. He left around 1:44.

A four minute meeting. Wow.

He never asked if I had any questions. He never acted like he cared about me as a patient. He was get in get out. In my disappointment, I asked the office for a copy of my Complete Blood Count (CBC), just because I couldn’t believe that my levels were normal. When I got them in my hands my heart sank. I’m not a doctor. I fully acknowledge that... I’m not claiming to know more than a hematologist... but...

A month ago my white blood cell count was at 2.8. The normal range is around 4-11. Two weeks later my white blood cell count was 3.3. It was getting better, so I had hoped this time it would be higher.

Today’s appointment, that I waited weeks to get, jumped through insurance hoops and stressful days waiting, hours of driving to arrive...Today, my white blood cell count was 3.1.

Still low. The other numbers were all consistent.

As I said before, I’m not a doctor. Maybe it is normal. But I just wish he had explained it to me. Why is that normal? Isn’t that low for most people? Did he think that number was fluctuating because I have been fighting this infection? Did he forget that I’ve been fighting it for almost 4 months now? Did he forget my other symptoms? I don’t know what they tested for. I don’t know if they’ll call me to tell me more results. I don’t know why he scheduled me again for blood tests in 3 months. I have no answers. I feel worse than when I went. I feel more clueless. More hopeless. More frustrated.

I can confidently say that it’s because my doctor didn’t communicate with me. He could have spent five more minutes explaining the tests, my options, anything. Offering to answer my questions. But I felt as if he just needed to check me off his box. “Yep, I saw her. Good enough.” I didn’t feel like he cared. Like he wanted to help me at all. I felt like a statistic. I felt unheard and unimportant.

I know that’s not what he intended. I don’t know his character, his history, his personality. I don’t know what kind of bad day he may or may not have been having. I just know how I felt as his patient. He didn’t do any examination. He didn’t feel my lymph nodes or my stomach or any routine things a doctor might check since I said I’ve been sick for months. He only asked me about my current status and about my northern accent. He didn’t really do anything. He told me my count was normal when two doctors told me it wasn’t. They referred me there for a reason, but this doctor saw no issue with my low white blood cell count over a month of testing. My CBC sheet says: WBC 4.3-10.1 (normal range) - patient’s level: 3.1. It is clearly well below the normal range considering the low numbers.

I plan to call the office tomorrow just to ask about the tests they took. To get an understanding and to voice my feelings. All of the other staff were wonderful. They were very helpful and welcoming. But where it mattered most to me, my doctor didn’t seem to care about my aches and pains. Trying to figure out with me what is going on.

Is he just going to tell me I’m fine and nothing’s wrong? He didn’t say anything about how I could be anemic or that he suspects A, B, or C. He told me he doubted they would find anything.

What? How can you doubt there is anything wrong, yet you want me to come back in three months for more tests? I have to wait three months to find out if my white blood count is low again?

Out of all the blood tests I’ve had taken in the last three years, my white blood cell count has been low. That’s 4 separate tests now. 3 which have been taken in the last two months. If my white blood cells are considered normal to him, I’d like to hear why. Instead, I feel like he lied to me. Or read my sheet wrong. Or didn’t feel like he needed to explain, and to save time decided not to.

I am probably blowing this fully or partially out of proportion, but I don’t care. This is how I feel.

I just woke up from a nap with a fever and night sweats. I woke up with a very bad migraine that made me feel like I needed to puke. Now, I sit typing this because I think my migraine stemmed from my frustration. I just feel “in the dark;” I guess, that’s all. I’m disappointed.

My last post was so optimistic. I don’t want to feel this way. I don’t want to be a baby, but here I am at 11pm sitting on my floor in the dark, crying as I type this.

#disappointment #hematologist #doctor #appointment #answer #raw #frustrated #sick

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hangonimevolving · 4 years

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Inside Out and Upside Downs

Hi all. Thought I’d update on various and sundry agenda items going on in my life. Never a dull moment ‘round here.

HEALTH

Firstly, let’s talk about my innards. There’s been a whole lot of activity going on with regard to my innards of late. Thanks to the excitement of my Disney flu adventure and my New Years ICU party, I am now the subject of a great deal of medical speculation and attention, from a variety of parties. I have a standing weekly blood draw and appointment on Thursdays with my hematologist (fancy word for blood doctor) to monitor my platelet levels, and other misc blood-related information that concerns immunoglobulins and weird, mysterious things like that. I have had two appointments, as well as a momma-jomma lab workup, with a rheumatologist (fancy word for doctor who specializes in autoimmune issues). I’ve had an appointment to set up care with a brand-new-to-me primary care physician. And in the middle of all of this, I decided that since I’m going to be in/around the hospital so frequently, I might as well do a short course of physical therapy for my ankle - I never got around to doing it, so now is the time. So that’s a recurring weekly appointment on Tuesdays. I’ve also got random other crap, like a random head MRI happening tomorrow, and I’m sure there will be random tests, scans, and studies that random doctors will order at random times, and I’ll have to fit it into the schedule. I am being thoroughly examined, inside out. And with all of these medical opinions, appointments, tests and what not - in the last 24 days, there has been NO concrete diagnosis or evidence about why this whole thing actually happened. There are several theories, the two most likely of which are a) I have an autoimmune disorder. Well, we already know I have one autoimmune disorder (a not-so-bad one, called Graves Disease/hyperthyroidism, which I was first diagnosed with in 2006, and which involves your own body perceiving your own thyroid gland as a foreign object, and attacking it with antibodies). But now there is some evidence that I may have a second one, possibly a more problematic one, that is causing my immune system to overreact to normal viruses and things, and go on self-destructive rampages against my own platelets. Dumbass immune system. Now, what IS this second autoimmune disorder? THAT we don’t know. Because, the rheumatologist ran that momma-jomma test I was telling you about, and all that showed up is this one value called a positive ANA test which indicated “daaamn, there’s something f%^ed going on in this lady’s immune system!” It was a very high positive result. But, the specific tests to identify antibodies for known issues like lupus, rheumatoid arthritis, etc. were all negative at this time. So. To be continued with that whole theory.....

Then there is theory #2, which is b) maybe this whole thing really WAS just the flu. Maybe the strain of virus I got was really bad, and it resulted in such a pronounced war that it just took a toll. Dunno.

Anyway. We’ll obviously be following this medical mystery with my innards closely the next few weeks. Oh, and one more thing: so my platelet levels are sorta trending down. At hospital discharge, I was at like 313K, then the next week it was like 250K, then 180K, and yesterday, 146K. They’re going to keep monitoring, and the hope is that the downtrend will plateau at some point (preferably above 30K), and then it will start to climb up when my own bone marrow gets its shit together and starts producing new platelets. If that doesn’t happen - I’m looking at more IVIG infusion treatments. So let’s see how it all goes down.

WORK

A second area of activity has been my job! The spring semester at Uuuu! started on January 13, and I am teaching two courses this time around, for the first time since 2016. I am teaching my studio dance course, per usual, but I also agreed to a late plea for help from my former department to teach a lecture/discussion course that I’ve taught jillions of times before, but haven’t done in about four years. It feels good to be back in classroom teaching mode. The course meets three times a week, on Mondays, Wednesdays and Fridays. So I’m quite busy, leaving the house around 8 am to drop the kids off at school, then getting back behind the wheel and making the hour-long drive to campus, arriving by about 9:30 am and teaching my two courses back to back. I have a big huge hike between my classes too, because they’re on opposite sides of campus, so by the time I’m done teaching, it’s about 12:20 and then I have this big long hike back to my car, then the drive back home, and I arrive around 1:30 pm. I grab a bite to eat, then at 2:45 its time to get the kids. Then three days a week, they have their extracurricular activities after school, so I’m shuttling them to those things. Then Tuesdays and Thursdays, all my medical appointments, which have been taking the majority of my mornings and early afternoons. Phew! This is all a far cry from about a year ago, when I had several mornings a week to go for a long run, either in my neighborhood or at the local state park, and I was training intensely twice a week with my Spartan SGX coach. I’ve had to seriously curtail my working out - I took a spill on my first run following the hospitalization, and the entire family freaked out about my putting myself at a bleed risk if I were to fall, bump myself, or otherwise get an injury, even a minor one, while exercising. This has been a huge crimp in my style, not working out - and if I weren't so busy with teaching, I think it would seriously depress me. But I keep telling myself its only temporary, and soon we’ll have some answers to my situation, and I”ll be able to get back into it. Till then, I’m trying to get back into meal prep and eating clean, and doing some mild exercise like light jogs and walks, light weight training, etc.

ADULTING

My mention of weight training is perhaps a segue to this next update, which I’ll keep brief and annoyingly vague. I am going through some painful adulting right now, that makes some moments feel like I’m being swallowed up by a tsunami. I’m gonna survive... but, yeah. I’m wading in the flood right now.

Okay, now for some miscellaneous updates. Mainly so I can post some pictures. This has been very text-heavy for my tastes.

MISC

On the topic of clean eating..... did you know that both papaya and pomegranate are natural platelet boosters? Supposedly. I’ve been doing a lot of research on foods and other natural ways to help boost my platelet production, and these were the top two foods that were consistently mentioned on platelet disorders blogs and forums. I confess I’m not a big fan of these fruits - but I’ve tried to put my tastebuds aside, and incorporate them into every day. Happily, papayas are widely available in the Miami area year-round.

I’ve handled the pomegranate thing by buying 100% pomegranate juice, and making cocktails of pomegranate + papaya juice (which is papaya pulp mixed in pear juice).

On the topic of foods and eating well - here is my guilty indulgence of late. I ADOOOOORE ramen bowls. ADORE. And I know they are the opposite of low-carb and healthy.... but I have been making a ton of them at home lately. I try to make them as healthy as I can, by 1) only using half of the ramen spice packet that comes with the noodles - this cuts the sodium to a tolerable amount (plus I drink lots of water), 2) I sautée minced garlic + approximately one full cup of shiitake mushrooms + approximately 1.5 full cups of baby spinach leaves in a dash of olive oil, and add to every bowl I make (mushrooms are full of B-vitamins and, alongside garlic, are huge immunity boosters, and spinach is full of iron and calcium, and is a good thing for me to be eating to make my blood sort itself out) , and 3) I often either crack an egg over the entire boiling mixture right at the end, or I add in sliced hard-boiled egg for extra folate and protein. And I sometimes add in a handful of raw shredded carrots right at the end, for a little crunch, color, fiber, and beta carotene. I *think* that I’m doing my best to make this indulgence food a little healthier, and tailored to my specific medical situation.

Soup has been a huge craving of late, because we had a surprising cold spell in Miami. It got down to 39F day before yesterday! That’s probably the coldest its ever been since we moved to Florida.

Afternoon snuggle time was especially snuggly - Dey and I were huddled for warmth!

My ability to run and work out at a high intensity may be somewhat muted at the moment, and this has been sort of a hard mental adjustment for me. But I am trying to get outside and do things, because it makes me feel better, and also I imagine the vitamin D is good for me. The other day, I was feeling pretty dumpy and blah - so I did something that for some reason I’d been putting off, “saving” for a special occasion, whatever. I cut the tags off of a brand-new Spartan licensed active top that I’d purchased on Cyber Monday, put it on, and went for a light 2-mile jog in the neighborhood. I felt silly in a way of making a big thing of it in my head - but the truth is, it lifted my spirits.

What else... Oh, this was exciting! GUESS WHAT, dudes. On Monday, I saw a real live MANATEE in the lake behind our house! I could hardly believe my eyes. A neighbor had reported on our community WhatsApp group just the day before seeing a manatee from her backyard. She posted a picture of it, which I am shamelessly going to post here. The manatee I saw, about 24 hours later, was different - it was considerably smaller than this one, I think probably a juvenile (not quite a baby, but definitely not humongous like this one). But it was swimming slowly near the sea wall that abuts our backyard, munching on some sea grass just like this big manatee. I did my best to run into the house and call the kids to come out as quietly as they could to see it - I think they caught a tiny glimpse, but our footsteps must have spooked it, because it definitely swam away quickly. I hope we’ll see it again!

Photographic evidence that we are LEGIT Floridians who hang out with manatees :)

Last but not least - on the topic of water creatures, gotta give a shout-out to my Vev, who “leveled up” at his swimming lessons this week to Junior Swim Team! The swim school has about 10 levels through which kids have to work to get to this point, and in the last ~18 months, Vev has completed them all. I was somewhat nostalgic and verklempt when he got his ribbon this time - I feel like it was only yesterday that we took him to swimming school for the first time, where he screamed bloody murder and cried the entire duration of his 25 minute assessment, clinging desperately to his teacher and feeling panicky about letting go in the water. How far he’s come!

(by the way, Dey is also doing wonderfully at swimming, and is only like 1.5 levels away from his own Junior Swim Team ribbon).

So some of my life is inside out and upside down right now, it is true. But some of it is Upside-Up. I work hard EVERY day to focus on the Upside-Up, and what a treat it is to see. These kids, the sunshine I get to enjoy here, the afternoon snuggle times, delicious food that also is good for me.... net balance is that life is good, I’m still alive and kicking, and everything is gonna work out fine.

Toodles!

#fitness #platelets #Sickness #Vev #Dey #food #animals

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ddaeng-181338 · 5 years

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My Medical issue (Lmao this sounds like clickbait)

Okay y’all let’s down to business — Especially since I thought it was in the past, sadly it seems to be showing it’s ugly head again. Also this is a tad bit tmi so if periods, blood, hospitals or needles freak you out don’t read

Okay so back in January of 2018 I got my period out of the blue (aka it was a week early) so I was hella confused. I told my mom and she said to keep an eye on it and to tell her if it got worse — oh boy did it get worse.

Skip ahead 2 weeks — I still have my period, and it’s extremely heavy. I’m started to get really fucking tired , to the point I’m falling asleep in class and no matter how long I sleep, I still feel exhausted. I’m also having really bad mood swings , to the point that I was extremely pissed, burst into tears and then hysterically laughed all in the span of 15 seconds and freaked my friends out.

I went to emergency care that night and has my blood drawn, and was told I had a UTI and was slightly anemic and was givien pills to take for the UTI, I was due to see my doctor in two days as well to get an actual checkup. Two days pass and I go to the doctor and I’m told to take another test and and it came back that I had no UTI — due to the fact that EC gave me a faulty test :D

Okay so I was recommended to two doctors — an OB/GYN and a Hematologist (a blood doctor). I was put on birth control to try and regulate my hormones and to get my period back on track — to which after a few months, everything with my period went back to normal. Now here is were my medical issue continues

Edit: i forgot to mention this “period” lasted 2 1/2 months

I had a whole bunch of blood drawn — by a whole bunch I literally mean this woman took a pint of blood from me and I almost puked and passed out in the office. And a whole bunch of tests were taken. Fast forward a few days and I go to the hematologist’s office. And this is what I’m told:

I’m told that I’m anemic (Anemia: A condition in which the blood doesn't have enough healthy red blood cells.) to the point my red blood cells are 10x smaller then they should be. And that I’m EXTREMELY iron deficient — to the point I literally have no iron in my blood. Hence why I’m constantly tried and why no matter how long I sleep , I’ll still feel exhausted when I wake up.

I’m told I have two options — take 3 325mg iron pills a day for the next 4 months or get two IV iron infusions down the hall in the chemo lab. I go for the faster option — despite it involving needles. NOW HERE IS WHERE ALL HELL BREAKS LOSE MA FRENS.

One week later I go back to the office and to the chemo lab — I’m told that because I was 15 I wasn’t able to get the IV done there — they only accepted patients of 17 or over. So I go back to the hematologist right down the hall and he calls up the closest hospital and asks if they will be able to do the infusion for me— they say yes. Here is where hell happens.

I go to the hospital— the emergency room to be exact — I’m taken back to the kids ward and am put into a room. I’m told that I will have an ultrasound done to make sure I’m not bleeding due to tumors or cysts (uterus cancer and ovarian cancer runs in my family, hence their concern for cancer) I am also told that they didn’t think an iron infusion was a good idea.

I’m stuck in the ER for the next 11 hours — due to the fact that my doctor had to fight with the hospital to give me an iron infusion (they didn’t want to because of how young I was) finally at fucking 9pm I get the IV infusion (1st round) And am out of the hospital by 11pm (I got there at 3pm) Immediately I felt better , I had more energy and felt normal again. A week later I went back to the hospital and stayed there for 7 hours until they finally gave me my second and final infusion.

Months pass and I go back to the hematologist for a check up — and to my surprise I once again have no iron in my blood, however I’m no longer anemic.

He decides that I should go for another IV infusion— the chemo lab rejects me again despite being 16 (he was hoping they’d be more willing) and instead of going to the ER I begrudgingly begin to take iron pills 3 times a day for months

Now here we are present day

My iron levels are back to being borderline empty despite taking these pills — to which my doctor suggests I could have internal bleeding somewhere. He tells me to stop the pills to see if my iron levels drop more and Set up an appointment for May 8th (the day after my 17th birthday) to see what my levels are.

Now the problem is — I’m starting to feel like I did when I had extreme iron deficiency and am unable to do anything until May 8th :D

#i hope this makes some sort of sense

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michellesjourney2 · 5 years

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11 months ago, I went to see a Hematologist-oncologist. I was sent there after 3 years of health issues. Extreme bone pain. Fatigue. Extremely high white blood cell count. Headaches. I wasn’t functioning. My doctors believed I had cancer. They tested me every way they knew how, and determined it must this rare incurable, slow growing form of cancer. This can only be diagnosed by a hematologist, so I was referred. I would look at my children and cry thinking of how I was letting them down. How their happiest days would be sad because I wouldn’t be there for them. I didn’t want them to have to miss me. That appointment changed my life. I was 238 pounds. I couldn’t work out, cook, or even play with my kids. I gained almost 100 pounds in 3 years! I was always sick with stomach flus. I felt like I was dying slowly. Then the doctor said four words that made me cry; “You DON’T have cancer”. He then went over my symptoms, and the tests I had done. He asked a question no one had asked me before “Does Celiac Disease run in your family?”. He then sent me for more bloodwork I’ve ever had in my life. When I found out I had celiac disease, I didn’t even think about having a last meal of indulgence, I was so desperate to feel better. * I am now 211 pounds. I am finally able to work out, and am in the second month of my workout program. Yes, some may say I could be further towards my old figure by now than I am. But I am happy with where I am. My body was so badly hurting from years of being “glutened” that I needed to heal before I could move forward. Anytime I worked out, my body, still broken, would just shut down and my bone pain would spike. I would take a full week to heal. I needed to heal; both inside and out. Physically, emotionally, and spiritually. Spending years waiting to find out if you’re dying takes a mental toll. I had to learn to live again. I had to learn to avoid gluten (it hides everywhere!). I had to let my body get better. I’m proud of myself. I’m proud of my journey. I’m finally taking steps forward, and I’m rediscovering who I am. #Celiac #celiacjourney #fitness #weightloss #weightlossjourney #autoimmunedisease https://www.instagram.com/p/Bt1NCkzgsGa/?utm_source=ig_tumblr_share&igshid=1b509ttgsmgi0

#celiac #celiacjourney #fitness #weightloss #weightlossjourney #autoimmunedisease

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gilmoregirlsmom · 5 years

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Testimony

It was this time, one year ago (April 2018), that Ben and I found ourselves in one of the scariest, most vulnerable places in life. He had been sick for over a month with no relief from rest or antibiotics. He had been diagnosed with strep when the fever and sickness initially started. Throughout this month of sickness, we had a 3 year old who had just had a tonsillectomy, a 1 year old, and a newborn who was born 2 weeks prior to the tonsillectomy and when Ben’s sickness began. Sleeping in bed was beyond uncomfortable for him; he could not sleep for more than 2 hours at a time, night sweats, high fevers, his body temperature dropping at one point, extreme exhaustion/fatigue. At one point he had stabbing back pain so bad that I had to take him to see his primary care physician, knowing something wasn’t right. It was there that the initial blood tests were run. After receiving results from the blood tests, we were advised to go straight to the ER due to high white blood cell count, typically signifying an infection in the body. The trip to the ER resulted in more blood work taken, a chest x-ray, and being told to see a Hematologist (AKA, Oncologist). BAM, it felt as though someone had doused me in the face with the coldest bucket of ice water you could ever imagine. Going to an oncologist at 29 years old with my 30 year old husband was never something I would have imagined happening to us. During the appointment with the oncologist, more blood work was drawn for further testing and another chest x-ray was taken. The oncologist then sat down with us and stated that at that point we were checking for leukemia or lymphoma. She then ordered up a bone marrow biopsy for the following week and instructed us to go straight to the ER should his symptoms worsen. I could see it in my husband’s eyes, this was the moment where I knew he was scared and fearful of what would happen to his family if something happened to him. Let me tell you all, my husband is an affectionate man but he does not show many emotions. Let me put it this way, in the 15 years we had been together (dating and married), I had only seen him cry twice, when his papa passed away and the miscarriage of our child. So seeing the tears on my husband’s face while driving home from that appointment and facing the reality that he was potentially really sick broke me. I am typically the one that wears my emotions on my sleeve and it was in that moment that I knew, somehow, some way I had to pull it together and walk beside him to let him know that he was not alone in this that we would fight against whatever was thrown our way.

The next Saturday, my oldest nephew had his 1st confirmation and communion. Ben, of course, didn’t want to miss such an important moment in our nephew’s life so he decided to go with us. Plus, he told me was feeling a little better that day. However, during the service he asked me to take Bradie (our newborn) whom he was holding, signifying that he was not feeling well once again. Once the service ended and we had walked over to the parish hall to celebrate my nephew, Ben told me he needed to go home. As we were walking to the car, his lips started turning blue, and no, I am not exaggerating! I explained calmly (at least I tried to be) that we needed to go to the ER, and typically man that Ben is, told me he was fine and to take him home. We settled for a compromise that we would go home and if his fever was 103 or higher then we would go back to the ER. Well wouldn’t you know, I ended up dropping off the girls with my parents and off to the ER we went. What was his temperature you ask? 103.9 degrees. Once we go to the ER, I started throwing out orders (I’m bossy if you didn’t already know) for them to take a CT scan and that we would be admitted into the hospital to stay, per oncologist orders, as well as to call his oncologist if need be for verification. After a long night of scans, blood tests (yes, more!) and little to no sleep, the attending doctor gave us some good news (if you want to call it that). It was not cancer but he did however have a large abscess in his right lung. Why would it not have shown up on a chest x-ray? That was my question and the answer is that the chest x-ray is one-dimensional and the positioning of the abscess was tucked up in the corner of the right lung behind the heart. Therefore, his heart was blocking the abscess and it took the CT scan, a multi-dimensional scan to allow the doctors to be able to see that large abscess.

Ben was immediately placed on high-powered antibiotics through an IV and when I say high-powered, I’m talking blood-testing daily to make sure they don’t do any damage to his kidneys. End of story…so you would think. My poor husband endured 2 weeks of IV antibiotics and daily blood draws (sometimes 2x/day) with no relief. Fever’s kept spiking, still unable to sleep for more than 2 hours at a time, continued night sweats, and pain in his back. He was STILL miserable! By this point, the oncologist was taken off the case and we now had a pulmonologist and infectious disease specialist to try to figure out what caused the abscess and how best to treat it. The pulmonologist on the case recommended we try switching to a different antibiotic combination and after yet another week with no relief, I was so conflicted with whether to keep him where he was or move onto KU Med, or even Mayo Clinic. My maternity leave (looking back I wouldn’t call it that) was coming to an end and I would go back to work the next week so I really hoped that I would see improvement before going back. Oh ye of little faith, this nice little reminder came from my brother (not exactly how he said it) to help remind me to have patience. My brother happens to be a nurse in the pulmonology department and a GREAT nurse at that! He was so helpful when it came to helping me stay informed and explaining things that I was not able to comprehend. But enough about my awesome brother, Ben and I agreed that we needed to get opinions of other medical professionals in the family, my Uncle and Ben’s Aunt. The first piece of advice was to switch pulmonologists, solely for the fact that Ben had seen another pulmonologist as a young man for his asthma, so this doctor would be familiarized with Ben’s medical history. But let’s be real, I’m sure there were multiple specialists that we didn’t even realize were looking over Ben’s case. Having family in the medical field that could help give us sound advice was worth more than I could ever explain, we are so grateful for my Uncle and Ben’s Aunt for all the help and advice they gave to us.

After a few days with the new pulmonologist heading the case, he came by for his morning rounds and told us that he had woken up at 4am out of a deep sleep and decided that a bronchoscopy was the way to go. This is where they basically flush out the lung and to try to obtain a sample to see if they can pinpoint an exact bacterium. The tricky part is being careful not to disrupt that abscess which could spread the infection throughout his body and potentially kill Ben. We were told that there was only a 13% chance of the bacteria actually growing from the sample. The pulmonologist was so confident in his decision that I knew this was the route to take. It was also at that time they decided to place a picc line in Ben’s arm because the veins in both of his arms were giving out from so many blood draws and IV’s. The pulmonologist so kindly explained that this was his last ditch effort before sending us on to Mayo clinic. The procedures to flush out the lung, obtain a sample, and place the picc line were all performed my first week back to work. Luckily, my co-worker and boss are amazing and allowed me to work 2 days (part time) until we could get Ben out of the hospital. The following day after the procedure, the infectious disease specialist found us out on the rooftop patio (Ben needed sunshine to help him mentally stay in the fight) where he gave us the miraculous news that the sample was growing bacteria! He reminded us that they would need more time for it to grow but that the key to getting Ben healthy was in the works. Sure enough, they were able to identify the bacteria causing the abscess and switched him to yet another antibiotic regimen. Finally, finally, after a couple more days with the new antibiotics, the fever started declining, the night sweats ceased, and a restful night’s sleep had come, along with more comfort during the day. After one week with the correct antibiotic regimen and a CT scan showing shrinkage of the abscess, he was finally going to be released to come home! Might I add that when I was told he would be released I tried not to get excited because I had heard this before and every time, his fever would spike putting us back to square one. But that day came, where I walked him to the car, drove him home, and walked him in the house where we were greeted by 3 excited little girls that showered their daddy with hugs and kisses. After 3 weeks of antibiotics at home through his picc line and oral antibiotics, he was ordered another CT scan to check the status of the abscess. The specialist read the results while we were in his office, smiled, and gave us the news that the abscess was completely gone. PRAISE GOD! Oh no she didn’t just bring God into this!!! Yes, yes I did and here is why:

Maybe one month prior to Ben getting ill, I had joined a women’s bible study. Coincidence, I think not. God led me to these women knowing I would need women of faith to walk alongside me during the storm, to encourage and remind me to stay focused on God’s word, his truth and promises. The day that Ben went to his primary care doctor for blood work, I stayed in the car to finish up my bible study for the week. Let me to tell you, that Bible study helped encourage me and point me to scripture that I needed during this storm. When Ben came back to the vehicle and told me to take him to the ER, it was then that I fervently started praying. Yes, I had been praying but not like I should have. And when the point came to where we were told to see the oncologist, the first thought that came into my head was to ask everyone I knew to pray for my husband. That my friends was the Holy Spirit, preparing me and telling me it was time for battle, to gather up my armor, and gather all of my warriors- my prayer warriors.

When the day of the appointment with the oncologist came, while sitting in that parking lot before going in, I grabbed my husband’s hand and we prayed our hearts out right there in our black mini-van (yep, I’m a soccer mom J). After we left that appointment, my husband asked me how I had remained so calm in a moment where I should have been flipping out, instead of smiling and walking out as if the words leukemia and lymphoma hadn’t been thrown out. My response to him, “God was in that room with us, he was giving me the peace that I needed to remain calm amidst the chaos” (Philippians 4:6-7).

The night that I took Ben to the ER and he was admitted, we called his parents to let them know what was going on. Next thing we know, his parents are in the ER with us and Ben’s Aunt, Uncle, and cousin also show up. They came to administer to Ben and ask God to be with the nurses and doctor to figure out the cause of his illness and how to treat it. It was around 6 hours later, after we administered to Ben in a circle together holding hands that the attending doctor gave us the news that the cause of Ben’s illness had been revealed.

Now remember all, I am human. The first night I stayed away from Ben when he was still so sick and antibiotics were not helping, I found myself overwhelmed, anxious, scared, as well as many other emotions. I could not shake these thoughts that one of my worst fears was coming true, my husband was dying. It was when I was getting ready for bed that I dropped to my knees and started smacking my head, yelling for the devil to get out of my head. Yes, this actually happened. I am sure I looked like a lunatic and yes my kids were asleep, thank goodness but it was in that moment that I realized the devil is real. He was using my weakness, my fear of losing my spouse against me. He was trying to steal my focus away from God and wanted me to crumble under the weight of this storm. That was the devil’s play and I was allowing him to succeed. So after slapping the devil out of my head, I picked myself up off the bathroom floor, went into my room, and grabbed my Bible. I turned to the one verse (a dear friend had text to me) that gave me comfort during this storm. Isaiah 41:10 “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” I did not need to worry or fear because God promises us he is with us always. He will lift us up with his righteous right hand (Jesus) during the storm, giving us strength, peace, and comfort. But in order for him to do this we must have faith and trust in him, we must communicate with Him, much like we would with our parents here on Earth. To have faith and trust along with communication, we must actively seek these promises and truths through scripture and prayer.

The day of the bronchoscopy, as I was driving to the hospital on a gloomy, cloudy day, the clouds parted and a ray of sunshine so bright was shining down directly on my vehicle. It was in that moment that God was showing me his presence, wrapping me up in a ray of sunshine (symbolizing his loving arms) to comfort me and give reassurance that He was with me and would make good out of this storm. God was not only evident to me, but his presence was shown through the 2nd pulmonologist that took over the case and decided to perform the procedure. When he told us that he woke up at 4am out of a deep sleep with the decision to perform the procedure, that my dear friends was God. God brought down the Holy Spirit upon the pulmonologist to wake him and place the decision to perform that procedure in his head. God knew this procedure was needed in order to heal my husband. Let’s take it a step further, that sample taken during the procedure, the one that only had a 13% chance at most of growing the bacteria, it grew. Let me reiterate, it grew! God strategically planned for the Holy Spirit to reveal itself to the pulmonologist for him to perform the procedure and from that sample collected God would allow the bacteria (that had little chance) to reveal itself so my husband could get the healing his body needed.

Yes, our journey seemed long and tedious, especially with all of the doctors/ER visits and testing. However, if we had missed any of those appointments, doctors, tests, or if those sequence of events hadn’t happened in the exact order they did then we would not have had the same result. God lined up every moment start to finish; he put us in the hands of each doctor to help us get to the finish line of Ben getting healthy. Again, had we skipped even one step the end result WOULD NOT have been the same. Once again, I again admit that I am human, a sinner by nature, so naturally I did not see all of the blessings amidst the storm. However, once those storm clouds cleared, it was then that I saw all of the blessings that God had bestowed upon us during that time.

The blessing of faith, of the fact that I know and serve a God who promises to make good of every situation, and God has never been known to break a promise. The blessing of a spouse, a partner that God designed with me in mind, to walk alongside, support, and love me through this Earthly life. Someone to help me raise Godly children who have a passion to know and serve our Lord, at least that is our goal for our children. The blessing of family, who dropped everything to help Ben, care for our girls, and support me through a scary and stressful time. The blessing of friends, church family, and a community (more like a whole county), who rallied behind us in prayer, with cards of encouragement, hospital visits, meals, monetary donations, and much more. The blessing of hospital staff that want to help aid in the healing of others, who genuinely want to see us all walk a healthy life here on this Earth. The blessing of an understanding and compassionate boss and co-workers who worked with me to allow me to be there for my husband and girls when it was all on me. The blessing of belonging to a bible study with a group of women, who sent me daily scriptures and words of encouragement to help me keep my focus on God, who understood what I was feeling, and being some of my biggest prayer warriors. While I know, there are many other blessings that I could mention, these were the few that came to mind that I wanted to share. But not only did I see the blessings, there were also many things that I took away from that storm, teachable moments that God gave to me.

First, never take your spouse for granted because they are truly a gift from God. But also with that in mind, it is important to realize that they are just that, a gift from God. A gift from God but they are NOT God. My biggest fear in life is losing my spouse or a child. God helped me realize that I was idolizing my children and husband because I was putting my love for them before God. My husband and my children, they are not mine, they are His. At some point in life, I will lose someone that I love dearly but instead of living fearfully, I now try to live in the joy of each moment that God allows me to spend with those around me that I love. I try to love each person with an intent and purpose, to serve them in every way that I am able. I also now know that I cannot control God’s will for my life or anyone else’s, I must succumb to his will and trust that like he promises time and again in the scripture, when hard times are upon us he will make good out of every situation.

Secondly, I learned that being a single parent is HARD WORK! And to be completely honest, I wasn’t even doing it fully alone, like so many that do. I still had family and friends helping with the girls when needed. With that said, kudos to all the single parents out there struggling to keep it together. Which brings me to my third realization. I was able to catch a glimpse, more like a fraction of what it is like to care for a loved one with a major illness/medical condition. With that in mind, I was only a caretaker for a short time for my husband. And to the single parents and care takers, please hear this: in the moments where you feel like you don’t have the strength to move forward, when you feel as if you are unappreciated for all that you do and how hard you work for your loved one, you are wrong. YOU ARE SEEN! You are seen by a God who sees you serving your loved one(s), which in turn is you performing God’s will for you. You are in his favor because you are serving him. God called us to this Earth to serve him by serving one another just as Jesus served during his time on Earth. So you see, God is smiling down on you (seeing you) and saying, “well done my child.”

Fourth, I learned that when we go through trials, storms, seasons of life (whatever you want to call them and yes they happen to everyone) if we focus on God’s truth and open our hearts and minds to him, he WILL reveal himself to us and give us all that we need to get through those times. I know this because I experienced all of these things, which you read up above, my testimonies.

Fifth, I learned that God wants us to serve one another. Whether it is a spouse, family member, patient, neighbor, or complete stranger, we are commanded to love and serve another. If God wanted us to carry the burdens of life alone, he never would have created Eve, or even procreation for that matter. That is why the Bible also discusses “the church,” the fellowship that we must have with one another to truly love and serve others.

Sixth, I was taught the power of prayer. I have another testimony on the power of prayer from my prayers alone, but this is my testimony about the power of prayer in numbers. I am beyond humbled by the amount of people that prayed for my family, particularly my husband. God heard all of those prayer warriors and answered. How do we know that God heard those prayers? Hello, have you been reading this testimony at all? He answered.

Lastly, I learned to wake up each morning and thank God that I am able to spend another day on this Earth with my loved ones. None of us know God’s plan or will for our lives, for most of us we won’t get a warning or a time to prepare to leave our loved ones behind. So live each day with a grateful, joyful heart, with the purpose and intent of loving and serving one another. Psalm 118:24 “For this is the day the Lord has made, let us rejoice and be glad in it.”

So for many of those who have asked or wondered how I managed to get through the storm with such strength and grace, my answer comes in the form of one word, a noun….GOD! He showed me his presence time and again, he gave me the strength to push through all of the difficult moments, he placed all of the people in my life that would help us wade through the rough waters amidst the storm. To all of those people who helped us make it safely to shore, thank you is not nearly enough. I want all of you to know that our family is forever grateful and I pray that God will place his hand favorably upon you and your loved ones, that he will help you live an abundant life for the acts of service you so selflessly bestowed upon our family.

Would I still feel all of this had the outcome been different for my husband and family? Yes, but I would have experienced much more heartache, seen many more blessings, and learned much more along the way. I could not imagine having gone through this storm without giving it all to God, I would have been a flat out mess. I would’ve given up and not been the wife or mom that I needed to be during that time. God never promised a life without pain or suffering, God does not punish us and give us consequences when we make bad choices, and let me tell you I had to do a lot of searching in the bible to understand why bad things happen to good people. What he does give us is free will and because of that we will experience pain and suffering in some of the choices that we make but he also gives us everlasting love, grace, mercy, compassion, forgiveness (there is no sin too big for God to forgive), strength, and peace. Shall I keep going? I think you get the point, God is good and he wants good for our lives. In order to get the good we must completely submit to him, in all our ways acknowledge him and he will make good on all of those promises. He also promises in the Bible, that he will make good out of every situation we face (Romans 8:28 & Philippians 4:19). Suffering is a part of life, a part of my life but I firmly believe that God will always keep his promise to me. He will create good out of any situation and bless me in ways I could never imagine. When that day finally does come, when I lose someone I love so dearly or I face another hard battle, this right here, this testimony will be my reminder of His promises! And when that day of battle comes for you, dear friend, I pray that you give it all to God and allow him to give you the strength you need to fight your fight, to take up your armor and gather your warriors to help carry the burdens of your battle. For those who have not opened your hearts to our heavenly Father, I pray that you know that when the time comes for you to fight, that you are not alone. HE WILL meet you right where you need him.

Here are the facts, here is the truth…GOD IS REAL, HE IS ALIVE, HE IS GOOD, AND HE LOVES ME! Psalm 136: 1 “Give thanks to the Lord, for he is good. His love endures forever.”

Love and blessings to all,

Brittani

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