Wednesday, August 2, 2017

What does one year post AFE look like, anyways?

I'll post probably next week and tell you all about Lucy's birthday, what we did, and our visit to the birth center, and how the day went overall. But today I'll talk about what the year has been like, and what it means to be post AFE at the one year mark.

Every journey is different and from what I understand, the time that it takes to revive you, the amount of blood you've lost, how long you're intubated and in a coma makes all the difference as far as your long lasting health effects. I can't remember all of my statistics but I'm trying to make a list so I can have accurate information for my book. But what I do know is I lost a LOT of blood, requiring multiple transfusions. That amount of hemorrhaging, combined with the stroke I had in the middle of all of it, destroyed my pituitary gland. That destruction has been the brunt of my health issues. Who knew that a blueberry sized gland in your head would be so crucial? I had no idea but it's one of the concerns they have for head injuries, not just because concussions are bad but because you can seriously damage your pituitary gland and you can't fix it. So let's talk about where I am health wise.
 My brother Travis visiting me. 
My current list of diagnoses include:

  • Hypoxic ischemic encephalopathy: brain injury caused by oxygen deprivation to the brain
  • Obstructive sleep apnea: I have a CPAP machine now and my nighttime sleep is GREATLY improved. Good sleep is crucial to healing my brain to give me the best chance to functioning better. 
  • polyneuropathy: damage or disease affecting peripheral nerves in both sides of the body
  • Acquired cognitive dysfunction: this encompasses my memory loss, short term memory, slowed cognitive functioning, inability to focus/stay attention, organize, etc. 
  • Paresthesias: tingling/prickling sensation (I have it in my arms/hands/feet)
  • Anoxic encephalopathy: brain tissue deprived of oxygen and global loss of brain function
  • Dysthymia: mild but long term form of depression
  • Migraines
  • Acute PTSD
  • Depression (major, recurrent)
  • Adjustment disorder with mixed anxiety
  • Occipital cerebral infarction: stroke in the occipital lobe
  • Raynaud Phenomenon: condition where some areas of body feel numb/cool (I have this in my hands and feet)
  • Panhypopituitarism: condition of inadequate or absent production of the anterior pituitary hormones. (I have no working hormones at all)
  • Sheehan's Syndrome: only affects women who lose a life threatening amount of blood in childbirth and it damages your pituitary gland, which results in panhypopituitarism
  • Amenorrhea, secondary: absence of a period, production of breast milk
  • Diabetes Insipidus: disorder of salt and water metabolism marked by heavy thirst and heavy urination
  • Secondary Adrenal Insufficiency: a disorder where the adrenal glands don't produce enough hormones.

It's a lot and it's serious. I've learned a whole lot in the last year about your body and how crucial hormones are, specifically Cortisol. I take a whole slew of medications every day, all of which I need to keep myself alive. Some of my conditions are more serious than others, but I have to say that diabetes insipidus? MOST ANNOYING. I take a half of pill of Desmopressin to control it. But it basically feels like I'm dying of thirst always and I can't stop peeing. It's super exciting.
This is what my daily regimen looks like. This doesn't show my DHEA (testosterone replacement) or my daily vitamin D that I take (prescription strength). I can't take regular ol' vitamins and supplements without approval because they can affect me differently than they would you.
The most serious issue I face that I don't have a handle on is my mental health. My depression, anxiety, and PTSD are serious and there is no easy fix. This shows all of the failed medications I've tried this year. I'm now on Wellbutrin and we're waiting to get the results from my GeneSight test to see which route would be best. The Wellbutrin isn't helping but I'm not losing it so I guess that's something.
The life threatening conditions I have, adrenal insufficiency and panhypopituitarism, require me to take a very precise medication to stay alive. If I don't take the correct dose of hydrocortisone, I am dead in 48-72 hours without medical intervention. If I get sick, it goes from fine to scary very quickly. I have this sheet from the Mayo Clinic that I have to have posted in my house and one in my purse at all times. I also have to have an emergency vial of 100mg of hydrocortisone on me at all times because if I get sick immediately, or get injured in any way, I have to get the injection immediately or I'm in serious danger.
But it's not over. I have some other issues that haven't been diagnosed yet. I see a rheumatologist in September because my recent lab work was alarming and points to a rheumalogical disorder. So stay tuned for that, sounds exciting, right? But the issue is I will randomly feel like a bus has hit me, like I've been beaten with baseball bats. Little amounts of exercise leave me bed ridden for days. This isn't me being dramatic either, it's serious. I'm so frustrated because I know if I could be more active it would help me mentally, but if I do anything I pay for it for days. As it turns out, a lot of AFE survivors suffer from auto immune disorders after wards so at least I feel like I'm going down the right road medically.

I do have to say that I would not have gotten through this year without the support of my family and friends. Early on friends, and strangers, donated to our GoFundMe fundraiser that was started by a close friend. We had people bringing us food, helping with school supplies and clothes for the big kids. People entertained the older kids while I was recovering. We were blessed with The Best Christmas Ever and our community gave our family Christmas as a complete surprise. My friends have helped me a TON throughout the year. My mom comes every day to help me with Penelope and Lucy because I'm not supposed to be by myself with them for too long because of my cognitive issues. Matt's parents have helped us a lot with taking the older kids to things because I can't and Matt is working. Their elementary school teachers have been supportive, and my medical team is top notch. To say we are beyond blessed is an understatement.

I face a lot of challenges even still. My medical bills are out of control. My prescriptions are ridiculous in cost. I travel to the Mayo every 3-5 months and that isn't cheap. I'm not able to work because I'll never be dependable. I'm sick randomly and I'm supposed to avoid stress. HA! Add to that and my cognitive issues and short term memory loss? I would be a nightmare to train. I wouldn't trust me with anything. Hell, I don't even drive with the babies because I'm not confident I would remember them in the car. I forget my keys in the car all the time, my purse too. It's terrible and it's terrifying.

So while everyone rallies in the moments of crisis, I think it's assumed that you just get better and everything is fine. But in our case, nope. It's endless doctor appointments, labs all of the time, medication changes, and struggling at home. It's been a major life adjustment and we're still working out the kinks. We're still learning what it's like to be in this new normal. The amount of money we shell out every year from now on for me to survive is astounding, even with insurance. The real MVP this year is Matt who works SO MANY hours every week so we can pay the bills. We aren't living large, we really are barely making it. When I say we would not have made it without all of the help we got, I am not kidding. So THANK YOU. To every person who donated to our family, everyone who (anonymously or not) dropped off diapers, wipes, food, clothes, gift cards, etc, people who helped us with the older kids, people who sent the kids things in the mail, people who gave me rides to the doctors or sat with me during the darkest days. You have no idea what it means to me, to our entire family, but you saved us. Thank you. <3 p="">


Jen Mc said...

Love and hugs to you and your troops. Love you and pray for you everyday!

Julie H said...

It's all so frustrating! I hope things do start to improve for you.