Transplant or not, what to do?

brianlux

Aafke, have you considered a medic alert system? They make these devices that you can wear around you neck and when you push the button on them it alerts your health care practitioner of a need for assistance. Not sure if that would help but maybe worth looking into?

whispering hands

I wish I had something I could say. However all I CAN say, is I will be praying for you.

JWPearl

whispering hands said:

I wish I had something I could say. However all I CAN say, is I will be praying for you.

+1

DancedNLaughter

My heart broke reading your post . . . I have kids too and I can't even imagine. I am so sorry and I hope things get better. My thoughts are with you . . .

PureandEasy

I know it's not the same, but reach out to Bathgate66, he has been through hell and back. He received a kidney transplant a few years back. He is the only one here (if he still comes around) I can think of that could even remotely relate to your situation.

Best wishes to you. Take care.

oftenreading

Oh no, Aafke, that's absolutely horrible. I hope that an investigation from your child protection services shows that your kids are at no risk in your care and that you have them back soon.

I'm really surprised by the approach of the EMTs when they come to asses you. Do you wear a Medic Alert bracelet/necklace that tells them about your diabetic status? If not, I urge you to get one so that they will know immediately what the issue is. I understand some people even have medical info tattooed on their wrist or chest.

The "panic button" (known as a Life Line here) is a good suggestion. I believe there are even higher tech ones that will alert emergency services if you fall over, so you don't have to push the button yourself if you can't.

Wishing I could do more to help....

prism

Aafke said:

I promised to keep you all posted on the developments of getting a transplant or not.... Well all is very quite on the transplant front.....

But lots of developments on the domestic front. being a single mom with a severe disease, life has never been easy. But during the holidays while my kids are with their dad, life is difficult. Because I suffer from severe hypo unawareness, I don't feel it when my blood sugars drop. When my kids are around they see it in my movement or incoherent way of speaking, they hand me some kind of sugar drink and we're up and running again. But while they are away, I do not know when my blood sugars go down, until, I lie flat with my back on the floor, unable, to move or speak any longer... The last thing which leaves me is my ability to think, and notice what happens in my surrounding.
All I can do is think what i should have done different to avoid these kind of situations, while in the same time i know, these kind of incidents are unavoidable....
The last two incidents happened two nights in a row. The first night i tried calling 911 myself, but unable to talk, they suspected me of making a drunk prank call, so they wouldn't help me....

The second night I was even further away, and wasn't able to move, or speak coherent. While the ambulance arrived, they slept me in the face numerous times, and told me i was stubborn, not willing to cooperate... I tried so hard... so bloody fucking hard... But it was impossible, so the paramedics slapped me once again, and decided to take me into the hospital.

While on the ER the docs, told me they had to inform child protection services, to take my kids away from me.... Because the burden of taking care of me is to big for an 15 year old and a 10 year old, I have to take care of them....

I don't want to be a burden to them, I want all the responsibility to take care of them in shared custody with my ex.

So instead of helping me, this trip has cost me my most priceless possession, my kids, who I love more then anything in the whole wide world. Last year when my kids were around no ambulance had to show up, but apparently, I give them to much responsibility, because of my hypo unawareness.

I feed them, I raise them, I love them, I take care of them, but apparently I'm a bad mom... I have many times wished my hypo unawareness was lifted of my shoulders, there would be some kind of way out of here. I don't want them to be responsible for my health, I wish i could do it on my own....

The biggest fight I've ever fought will be this one. I will not give up on my kids. But emotionally I'm running out, I can't give in, but I'm drowning.

I don't know what to do anymore...

i am so sorry, Aafke

i'm livid at the ignorance of the ER doctor that reported you to children's protection services...for fucksake! do they call CPS on parents with seizure disorders? how about parents that pass out from anaphylactic shock? asthma attacks? low blood pressure? there's over 20 medical conditions that can lead a person to faint/pass out.

good f'n god, what was that ER Dr thinking? your kids are 10 and 15....it's not like they're going to run out to a road into coming traffic or torch your house when you're passed out

just because you have T1D with hypoglycemic unawareness does NOT mean you neglect your children! or that it puts an unbearable burden them! does CPS not realize the stress your kids would be under being separating from you? it'd only make your kids worry about you much more and not being able to check on you would be 1000x's more burdensome upon them

one time i came to in the ER (my blood sugar was 20) the Dr asked me if i was trying to commit suicide (as if as a single parent I would.) it floors me when even medical professionals think hypos are something we willingly choose to "do to ourselves." never mind the multitudes that don't understand or acknowledge type 1 an auto-immune disease that's not preventable

as for the 911 operator...that's inexcusable for them to assume you're drunk. that person needs to lose their job or else needs serious retraining. (the same thing happened to me 24 yrs ago, my mom had to call my local 911 from the other side of the US) call your non-emergency EMS office, talk to the head supervisor and tell them what you remember...obviously the operator wasn't asking you the correct (which should be mandatory) questions they have to ask anyone calling with an altered state of consciousness

call your endocrinologist and whichever D educators that works with them and tell them you need a patient advocate that is well versed in type 1 as well as hypoglycemic unawareness.
hopefully you can find somebody to advocate for you that'll see that you are a good parent that does take care of your kids. also gather all the records that show you've been seeking treatment and services to prevent HU... to no avail

Good luck and hang in there, Aafke

hedonist

Awesome post, pris (and I hope you're doing well, old friend).

Aafke, I don't know if you're in the states; for some reason I thought you live in Europe? Not sure what services are in place where you are, but as prism mentioned advocates, is that or something similar available? (and if not, there fucking should be)

Aafke

Thanks people, for all your kind words and concerns about me, it helps a lot!

I'll try to answer all your questions and options one by one...

At first the question were i was living from Hedo... You were right I live in western Europe, in the Netherlands. At the moment we have a declining healthcare system. In the Netherlands you are forced to have a health insurance, and for a long time, all health was payed out of the budget of this health insurance, no matter what. But the raising life expectancy and the lower birthrate, have driven our medical bills truth the roof... Therefor the health insurance has become more and more expensive and less and less providing in our medical needs. Because we are not used to get a bill from the docs, their are at the moments no alternatives to get money for medical issues.

There comes the "panic button" into mind.... The panic button is available were I live, it can be captained by health insurance, about three years ago I have filed my first application, but it was denied, because I can only use it when I have been on my deepest blood sugar point and are already on my way up. The insurance reasoned if I was already on my way up, it would also be possible (and cheaper for them) to wait a while longer so I could undertake action myself....

But yesterday I have, filed another application, and hope with some medical letters, they will decide different this time... I hope we have the advantaged ones Oftenreading spoke of, where you don't have to push a button, but i hope to find out very soon.

About the medic alert bracelet... I wear one, I also never travel without my diabetes passport... The local first respondents central has all my medical records, so when a call is made from this address, they see on screen, that I'm a diabetic, so last Friday they asked if i was sure to have a hypo, because the operator judged my voice, to be drunk instead of having low blood sugars... When i tried to respond, the operator thought he was a better judge, and labeled me drunk, I had to call my ex, and he called 911 again, and they finally came.

But in such a hypo, panic kicks in, coherent thinking is far out of reach, because the brain is the most dependent of glucose of all the organs. It is a life and death situation, and unable to act I am completely dependent on the help of others, scared as hell to die. I've trained myself to unseal the infusion set of my insulin pump, to help myself to stop the blood sugars lower even more. But because of my physical immobility, I have deep scratches all over my arms and legs, of the attempts of getting the thing of... But hey, they make up for all the bruises I got from trying to reach the phone...

In these circumstances survival instincts take over, all non essential physical tasks, stop working, physical locomotion, becomes impossible, keeping my own body warm becomes impossible, as well as speaking coherent, or any other normal body function. 1 in 100 diabetics has a kind of epileptic attacks while in a hypo... Guess, what? ... Yep, I belong to that 1 %.

But enough self-pity, I filed my first complained with the EMR, lets see if it helps...

Prism, once again thank you for all your support and advice. Your ER story is so recognizable... Diabetics always get the blame for their hypo's... It's your own fault, if the blood sugars drop, you have to check them more often.... You must have done something wrong in the management of the disease,it's your own mistake you ended up here. If many hypo's occur the diabetic is to blame...

If you hear it long enough, you start believing it. At the moment I listening to "I am mine", and realize I've never felt me mine... I've always felt like a hostage of this bl**dy f*cking disease, always struggling to get control, and in the end always loosing the battle, which according to the docs and other health care professionals, i deserve, because I'm not trying hard enough, I can't get it under control.

Do i deserve, CPS, investigating the safety of my kids? I burden them with the worry of my safety and my health, which is uncommon on their age. So I suppose i do... Am I a bad mom? Hell, no! I do the best I can with my failing untrustworthy body. I will not let CPS, take away my kids without a fight, I might need my kids, but they sure need me too!!!

I've already spoken to the DVN (Dutch Diabetic Foundation) and they told me It's a standard proceeding in healthcare, to notice CPS if someone suffers from a questionable health. In the Netherlands , the last couple of years CPS has had numerous complaints on cases where they had not taken action and a child was hurt. So it might be a bad timing... But I also hope they see it just as a warning, and will not take my kids away.... Best thing is to cooperate, and show them my good intentions, i guess.

I'll keep you all posted...

prism

hey hedo (friends for 15 years...damn we're getting old )
i'm doing pretty good, superbean's still whizzing right along. thankfully my kids and grandkidlet are doing great as well

Aafke, looks like you're taking positive steps and working with the right attitude in dealing with CPS....so hopefully they'll quickly realize they have no reason to take away your kids and thus leave your family alone. as strong as you are and frustrating as the situation is...i wish you much good luck and positive energy that things turn out just fine!

my endo and staff have gotten much better the past few years in understanding that blaming type 1's for having fluctuating high & low numbers despite the patient's best efforts, is not only counterproductive...it's also unjust.
unfortunately few other Dr.s (for instance ER or primary care) and other healthcare peeps have caught on.

this is awesome: http://diatribe.org/issues/68/adams-corner

it's so spot on! i've bookmarked it on my phone...just in case I need to show it to the next doc, nurse, healthcare or insurance co. worker who starts to spew a typical ration of blame & bullshit those with T1 so often have had drilled into our heads