Home > Just Trying to Keep Her Alive

Just Trying to Keep Her Alive

October 10th, 2018 at 09:20 pm

Things are getting pretty bad for my daughter. It really feels like we are fighting for her life here and everything is just too darn slow. Her hair has been falling out for a while now, but now it is starting to come out in clumps.

She had a lot of hair to start with so it wasn't so noticeable, just the sheer amount on her pillow or when she brushed her hair or that we were pulling out of the shower drain showed it. But now it is starting to get much more obvious. She wants to just cut it very short, but then the clumps will be very obvious. Right now she just looks like she has thin hair.

She went to the ER on Thursday because on top of the same symptoms her nose had been bleeding for six hours. Then she went in again on Sunday because it felt like her head was going to explode and she collapsed. They did a CT of her head and found nothing.

I wonder if this all can be caused by starvation and dehydration? Almost everything she eats comes up now, sometimes even as she is eating it. It is so frightening. The only thing I don't understand is why she isn't losing any weight. How can you not lose weight when the food doesn't stay in the system?

She's basically eating baby food now. Homemade baby food, but everything is pureed to try to help her digest it and we have eliminated a lot of foods altogether. She can't have lectins, so beans and lentils are out. She can't eat beef, pork, or lamb. She can have chicken, rabbit, or turkey if it is teeny, like in cream of chicken soup, but not very much of it. She had been doing okay on fish, but that's coming up now, too. She's had to eliminate all but a few fruits and vegetables, anything with a lot of fiber. She can't stomach whole grains or nuts or seeds. It's a nutritional nightmare.

Her endoscopy and colonoscopy are scheduled for the 16th. Only six more days now. It can't come fast enough. I am so, so worried about her. I worry she won't be strong enough to do it, or that she will have a fever and they'll try to reschedule. It took us 3 months to get this appointment. If she has to wait that long again, I really do think she will die.

Her endocrinologist got back to us with test results from the latest blood draw and even though they doubled her meds for adrenal insufficiencey, her cortisol levels are not, as he put it, reassuring. So now he wants her to repeat the ACH stim test, the one that almost crashed her the first time. It's been a few months and has to be done in the hospital at the same place where they do chemo and infusions. We are just waiting on the go ahead from the insurance company to schedule that. Her dose may have to go up further depending on the results.

The hypothyroidism meds were raised by 50 mg or mcg, I don't remember the actual unit, the last time and they didn't say anything about that, so I'm hoping those are doing okay now. The stress is messing with my stomach. I just want her to be well again. And then I want us not to fall back into some kind of financial nightmare due to medical bills. So far we are staying ahead of them with the Medical Fund, but that may not be enough. I still have $4000 in the Emergency Fund.

Writing is helping me cope. I've completed five chapters (12,347 words) on the first book in the trilogy and am ready to write the next chapter once I get this posted. I am glad I have this escape right now. You don't know how badly I just want to be able to run away from life right now and being able to write is keeping me grounded, even if I'm on another planet in my head.

15 Responses to “Just Trying to Keep Her Alive”

  1. laura Says:

    Your poor dear girl. To be pushed beyond limits of her endurance has to be exhausting for all of you. I’ve nothing to offer, other than continued prayers for peace and comfort and wisdom to guide her medical team. So glad that writing is your outlet. Take care as well as you can.

  2. Joanne Says:

    So sorry for your poor daughter,and for you. When you go to Er with yr daughter has no one ,a doctor thought to admit her,and do these tests inpatient? Her condition sounds like thst would be a good idea. I hope she gets the care she needs soon.

  3. Joanne Says:

    I just wanted to add, I know how much care you have been giving your daughter. It must be so hard for you also. Best wishes for your daughter to feel better soon.

  4. Davera Says:

    We're with you during this very rough patch - please know that you and your dear daughter are in our prayers for an accurate diagnosis and gentle treatment that will restore her to vibrant good health. You are supported here! Stay strong.

  5. Wink Says:

    I am so sorry that your daughter is suffering. I'm sure you are both exhausted. Sending comforting and healing thoughts to you both.

  6. Jenn Says:

    What a scary situation! Have you checked the fine print about potential side effects from her drugs, especially ones with recently changed doses, to see if her symptoms are listed?

    Prayers for your family.

  7. Kim C Says:

    Hello, I am a long time reader and have never commented before. But this breaks my heart and I just hope everything will work out ok. I have 3 children and the thought of them suffering like this makes me so upset. I wish all the best for your daughter. Get well soon.

  8. frugaltexan75 Says:


  9. Thrifty Ray Says:

    I am so sorry. Hair loss absolutely can be caused by not enough nutrients, and will likely reverse once she is able to keep things down again. I sure hope they figure out what is going on soon- I cant imagine the stress this is causing you- but thankfully you do have at least a small outlet to reduce it for short periods. Take care friend.

  10. MonkeyMama Says:


  11. rob62521 Says:

    Prayers for you and your family.

  12. starfishy Says:

    thinking of you and your daughter and hope she finds some relief soon. so sad. Frown sending hugs also.

  13. creditcardfree Says:

    Can they do a feeding tube at some point? I would think they could run blood tests to confirm she is getting the nutrients she needs. Prayers for her procedure tomorrow. I really don't know what to think about our medical system when I hear of your daughter's experience. It should not take so long to figure out the problem. Praying for you and your daughter.

  14. My English Castle Says:

    Robin, just back on the site, and so sorry to hear this. Praying for you, for strength and healing for all of you.

  15. livingalmostlarge Says:

    My thoughts and prayers go out for your family. I am so sorry to hear it is happening.

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