Keeping Someone Alive with a Harmful Drug...

Amity

Well-Known Member
I am so sorry for what some of you have gone through and I appreciate your concern and kind attention. I apologize for my late response, I am very ill and typing can eat up all my energy quickly, it took me days to type this message up in note pad so I could copy and post it here.

Just know this person has an extremely rare case that has been going on since they were young, a big part of not being diagnosed properly is because out of the some 40 doctors(some of the best in the country, Johns Hopkins, top neurologists-supposedly) she saw didn’t believe someone so young could have anything wrong with them (she use to be an aerobics instructor). Every year she would get a couple of new autoimmune diseases and/or syndromes, but no one could find the cause and she kept getting worse, eventually her adrenal glands stopped working. Most people just need to take replacement steroids for adrenal insufficiency but in this case, the constant pain factored with with constant stress eating away at her body from the mystery disease made it necessary for her to be on a high dose of steroids for over a decade. The endocrinologist was not happy about it, but every time she tried to lower the dosage she would start to go into adrenal crisis. She also has fibromyalgia, chronic fatigue, erythromelalgia, P.O.T.S., basilar Migraine with aura, tremors, hashimoto’s disease, chronic dizziness, motility dysfunction and too many others to list. It would take a week to explain everything she has and what went on all those years because what I just wrote as it is just the tip of the iceberg.

Anyways in 2017 she was finally diagnosed by a neurologist as to what was slowly killing her through all her adult life. It’s very rare, there is not a name for it yet but in layman’s terms it’s when rogue antibodies just start attacking your autonomic system. In her case she is the only one who ever had 2 rogue antibodies that was attacking her autonomic and sensory system. There is no cure but the neurologist did approve her for IVIG. She has been doing that every 4 weeks for the last 2 years. It has helped. But it has made things worse as far as pain and exacerbating symptoms, she was able to go down on the steroids but the stress of the treatments, the antibodies waging war in her body can prove to be too much and sends her body close to adrenal crisis and sometimes occasionally aseptic meningitis. It frustrates her because her will is strong but her body dictates reality. But now the insurance no longer wants to pay for it. All she wants is Jesus to rapture us home if not just her home.

Please pray for her. Her name is Bonnie, could you pray the insurance company will pay for treatments and that her fibro, nerve pain and basilar migraines goes away and that she is able to have normal bowel movements.
Thanks and God Bless you

Thank you for getting back with us. I am sending up prayers for you and Bonny. I am so sorry you both are dealing with so much. I'm out running errands but I will reply with more later. :hug
 

Spiritual Armor

Ready to Go Home ^_^
Hi Spiritual Armor,

I see you have been on the boards recently. How are you and this person doing?

I do apologize if my post came across as harsh or invalidating of what this person is going through. I truly did not intend for it to.

We would like to be of help, but a lot of us have questions that would help us understand what exactly this person is going through and their salvation.

If they haven't already attempted this, I would like to just share that the desired outcome will not be quick, or painless. It would be more akin to suicide by not eating. I went almost 3 weeks once years ago without when I didn't have insurance and couldn't get them. I ended up in the hospital. After a couple of days, you feel weak and nauseated. Joint and muscle pain gradually gets worse. Shortness of breath and severe fatigue and dizziness gets worse.
I know you listed the potential side effects, but I would like to know what specific side effects they are experiencing.

I do hope you return to this thread and let us know how you two are doing. We do want to be of help. But more importantly, please see the doctor about this.
Oh no, thank you, you are so kind. I know you are trying to help and I appreciate it it’s just I’m chronically ill myself and rarely have a good energy day, it usually takes all my energy to brush my teeth. But I typed my response over many days below to hopefully answer your questions that she was ok with. She does have and endo and neurologist. Sounds like you’ve been through the ringer. I am so sorry. All the side affects you listed are just a few things that the girl lives with just about every day and they get so severe at times. I wish I could fill you in on everything then you’d be like oh, ok I see. Just to let you know, she is not suicidal, just homesick, she was like that before she got ill. The rogue antibodies are also attacking her autonomic system are attacking her cerebellum and the neurologist believes they are attacking the pituitary gland, which is causing the adrenal glands to fail. By doing the IVIG she has high hopes for her in another 5 years, but things are not going smoothly because the stress of the infusion itself along with all the other diseases and syndromes she has plus the chronic pain eats that cortisol twice as fast and that plummets her into the danger zone.

She’s revealed that she’s been praying for an answer from Jesus whether it’s right or wrong for someone to live off a drug that causes so much pain. She hasn’t felt a definite no that’s wrong or yes that’s right. Since she had to be on such a high dose for so many years, it did so much permanent damage and caused a lot of problems, things that I can’t list here. There really isn’t anything in the Bible to give a clear yes or no. It seems like an “end of days” issue of technology increased, People 100 years ago would die young, live to 40 would be old. But she wonders if that is what God intended, medicine to help but not to keep you alive at the cost of damaging, giving diseases or mental anguish. It made me really think. Anyways, she’s in good hands the Lord is watching over her with her family but she sure could use your prayers of healing. Please let me know if there is anything I can pray for you, I hope you’re keeping afloat with your health now.
 

Spiritual Armor

Ready to Go Home ^_^
I just wanted to say welcome back Bon:hug to RF! I have missed you and have wondered how you were doing or even if you were with the Lord

I hope you will stick around, sis
Hey anath
Thank you so much! Huggies to you :hug! Awwww that is so thoughtful that you missed me, you know I almost ended up being with the Lord a couple years ago. But He sent a doctor my way who finally diagnosed me correctly after being chronically ill for the last 15 some years and now I’m getting infusions every month that are slowly giving me more energy. Finally fighting this thing head on. Thanks again for the welcome ^_^
 

Amity

Well-Known Member
Oh no, thank you, you are so kind. I know you are trying to help and I appreciate it it’s just I’m chronically ill myself and rarely have a good energy day, it usually takes all my energy to brush my teeth. But I typed my response over many days below to hopefully answer your questions that she was ok with. She does have and endo and neurologist. Sounds like you’ve been through the ringer. I am so sorry. All the side affects you listed are just a few things that the girl lives with just about every day and they get so severe at times. I wish I could fill you in on everything then you’d be like oh, ok I see. Just to let you know, she is not suicidal, just homesick, she was like that before she got ill. The rogue antibodies are also attacking her autonomic system are attacking her cerebellum and the neurologist believes they are attacking the pituitary gland, which is causing the adrenal glands to fail. By doing the IVIG she has high hopes for her in another 5 years, but things are not going smoothly because the stress of the infusion itself along with all the other diseases and syndromes she has plus the chronic pain eats that cortisol twice as fast and that plummets her into the danger zone.

She’s revealed that she’s been praying for an answer from Jesus whether it’s right or wrong for someone to live off a drug that causes so much pain. She hasn’t felt a definite no that’s wrong or yes that’s right. Since she had to be on such a high dose for so many years, it did so much permanent damage and caused a lot of problems, things that I can’t list here. There really isn’t anything in the Bible to give a clear yes or no. It seems like an “end of days” issue of technology increased, People 100 years ago would die young, live to 40 would be old. But she wonders if that is what God intended, medicine to help but not to keep you alive at the cost of damaging, giving diseases or mental anguish. It made me really think. Anyways, she’s in good hands the Lord is watching over her with her family but she sure could use your prayers of healing. Please let me know if there is anything I can pray for you, I hope you’re keeping afloat with your health now.

It sounds like you both have been through the ringer too. :hug. I'm sorry. When I get home and get settled I'll type more later. In the meantime please know I am praying for you both.
 

Spiritual Armor

Ready to Go Home ^_^
If an opinion is unpopular, that doesn't make it any less valuable. Sometimes the less popular opinions may hold more value than more commonly held thoughts within a sub-group of people (as we are). If I understood your entire post correctly I agree with what you're saying for you and any advice there for others has merit.

In my own case, if I didn't want to receive treatment for an ailment that might lead to death without treatment, I wouldn't need counseling nor would I seek it. It would be fully my decision and I would have no problem making the decision and owning it. Cancer is so prevalent that I've already decided that if I ever am diagnosed with some kind of cancer and have to go through some of the treatments I've read about... well, I just wouldn't be interested in pursuing those treatments. Would it be wrong or a sin to not accept treatment for a potentially terminal condition? I don't believe so, not at all. Might it be a poor choice to do whatever you can to stay alive despite the treatment you might have to suffer through for a possibly terminal condition? No. Not at all. By my way of thinking it is a personal decision. If you can pay for it and want it, get the treatment. If you'd rather not have the treatment, then make good use of the time you have left in this fallen world.

I would be extremely upset if I wanted to receive some treatment and a single payer board made a determination that I would not receive the treatment... I believe in old fashioned values and if I can pay for something, then I believe I should be able to work with the medical system to get the treatment. I don't believe that I'm entitled to treatment if I can't pay for it... I would consider a panel's decision declining treatment to me as equal to pre-meditated murder after I passed. I would consider a personal decision not to get treatment a decision to accept the diagnoses and it's NATURAL consequences.

All that said, I have many physical ailments and have come close to meeting my Maker at least a few times already. Day to day, I try to eat healthfully, exercise, get plenty of rest, and otherwise take care of myself. I like living, I like serving, I like sharing God's love to the extent that I can and do. But I'm not afraid to go home, and when the time comes, I'll probably be pretty excited. I'll have to consider hiding that excitement a bit so my loved ones don't think I'm in a hurry to leave them...
Thank you for your reply and answering honestly, it makes sense to me. On going home - I’ve failed in hiding my excitement from my loved ones, something I regret.
 

Spiritual Armor

Ready to Go Home ^_^
I’m sorry you are even having to ask this question. Watching someone suffer with or without treatment is really hard to handle. I am in Physical Therapy and am familiar with autoimmune diseases, as well as degenerative brain and CNS diseases.
In severe autoimmune issues, in addition to or in place of steroids, many times IVIG can be helpful. Has your friend tried that? I’m also very familiar with long term effects of high-dose steroids, and those side effects are quite severe, and require very close monitoring by a good endocrinologist.

Autonomic NS disease can be so varied in each person. I hope your friend has a good neurologist that can communicate with the endocrinologist, as each ANS function that is affected would require treatment (i.e., loss of ability to control blood pressure).
I will pray that your relative/friend might be able to get a “team”of physicians to evaluate the long list of unbearable side effects of the steroids, and see if there could be options that would improve their quality of life.
I think we are all weary of this world for many reasons, and I agree that I hope we are HOME soon.

:pray:pray:pray
Hi there,
Thank you for your concern, I wrote a long reply below, that explains the situation in more detail. You know your stuff. She is getting IVIG once a month for the last 2 years. It’s just she’s been sick for more than 15 years and most patients the neurologist treats with the rare condition she has, has just one rogue antibody, and they only had it for no more than 5 or 8 years. It wasn’t for a lack of trying she went to every neurologist around and the ones in John Hopkins for all those years and then luckily got diagnosed by a simple blood test in 2017. If you get sick you better hope and pray it’s something common if not then it’s like a needle in a haystack trying to get diagnosed.

I so hope Jesus comes to get us, the way things are going I just don’t see how we could be here in another 10 years, if we are still here then God help us.
 

madcat

Well-Known Member
I understand your description more than just medically. For years my brother had symptoms like slightly slurred speech, increasing balance issues, then on to inability to control BP especially when standing when it would bottom out. Those progressed to loss of bowel/bladder control, swallowing issues, and loss of movement, etc. After being incorrectly dx with Myasthenia Gravis for almost 2 years and on huge doses of steroids and IVIG, he continued to worsen. We were finally able to get a dx at Mayo Clinic which was MSA-C, (Multiple System Atrophy - Cerebellar form). The research to date is zeroing in on rogue proteins, such as Alpha synuclein, Tau, and others that cause degenerative brain diseases.
Sadly, as of today this group of brain diseases is still a mystery. Your mention of rogue proteins just reminds me how far we have to go in discovering causes of rare diseases.

I am so sorry you are also witnessing this “close up”. It’s heartbreaking and very frustrating at the same time. All I can say that had it not been for Mayo, the correct dx would have never been made.
My heart goes out to you ——— :pray :pray :pray :pray
 

mattfivefour

Administrator
Staff member
If she is saved, then what she should do is a matter between her and God. God will not condemn her regardless of the choice she makes. Prologing one's life only for the purpose of suffering longer is not necessarily a good thing to do, nor is it necessarily God's will for the person. Notice I said "not necessarily." I said that because taking treatment to prolong one's life may well be God's will and, therefore, a good thing to do. Only God can answer the question perfectly for your friend as to what she should do. If all she is wanting is a quick way out of her circumstance, I caution that there is NO quick way out. As Amity mentioned above, not taking necessary medicine can be very long and painful. The important thing is HOW a person deals with the circumstances that are in their life. If they feel led to reject further treatment, then they must be in a mental and spiritual place where they can trust God for His grace and strength and be able to live out their days with peace and grace as a witness to their faith in the One who alone is worthy of our faith. Many have gone home in this way, leaving a shining testimony behind them. But if, after earnestly seeking God on the matter, they decide to proceed with further treatment, then the same attitude must prevail in them and they must choose to live to honor God by being a living witness for Him. Either way—dying or living—any Christian who (like your friend) is in a circumstance that permits them a choice in the matter should seek to choose the best path in which to glorify God.

That is my sole advice. I do not think anybody should ever lay a course of action upon a person such as your friend. It must come from the person herself after she seeks God as to what to do and receives His peace. All we can do is support her and encourage and comfort her as best we can as she walks the road she believes God would have her walk for His glory. Satan will try to bring her into condemnation if she chooses to refuse treatment and fear of suffering if she chooses to accept treatment. She must ignore him and walk in the certain knowledge that God will be with her regardless of the choice she makes. He will not condemn and He will not bring fear.

Regardless, we know that one day we will see Bonnie in glory ... whether sooner or later.
 

Spiritual Armor

Ready to Go Home ^_^
If she is saved, then what she should do is a matter between her and God. God will not condemn her regardless of the choice she makes. Prologing one's life only for the purpose of suffering longer is not necessarily a good thing to do, nor is it necessarily God's will for the person. Notice I said "not necessarily." I said that because taking treatment to prolong one's life may well be God's will and, therefore, a good thing to do. Only God can answer the question perfectly for your friend as to what she should do. If all she is wanting is a quick way out of her circumstance, I caution that there is NO quick way out. As Amity mentioned above, not taking necessary medicine can be very long and painful. The important thing is HOW a person deals with the circumstances that are in their life. If they feel led to reject further treatment, then they must be in a mental and spiritual place where they can trust God for His grace and strength and be able to live out their days with peace and grace as a witness to their faith in the One who alone is worthy of our faith. Many have gone home in this way, leaving a shining testimony behind them. But if, after earnestly seeking God on the matter, they decide to proceed with further treatment, then the same attitude must prevail in them and they must choose to live to honor God by being a living witness for Him. Either way—dying or living—any Christian who (like your friend) is in a circumstance that permits them a choice in the matter should seek to choose the best path in which to glorify God.

That is my sole advice. I do not think anybody should ever lay a course of action upon a person such as your friend. It must come from the person herself after she seeks God as to what to do and receives His peace. All we can do is support her and encourage and comfort her as best we can as she walks the road she believes God would have her walk for His glory. Satan will try to bring her into condemnation if she chooses to refuse treatment and fear of suffering if she chooses to accept treatment. She must ignore him and walk in the certain knowledge that God will be with her regardless of the choice she makes. He will not condemn and He will not bring fear.

Regardless, we know that one day we will see Bonnie in glory ... whether sooner or later.
If she is saved, then what she should do is a matter between her and God. God will not condemn her regardless of the choice she makes. Prologing one's life only for the purpose of suffering longer is not necessarily a good thing to do, nor is it necessarily God's will for the person. Notice I said "not necessarily." I said that because taking treatment to prolong one's life may well be God's will and, therefore, a good thing to do. Only God can answer the question perfectly for your friend as to what she should do. If all she is wanting is a quick way out of her circumstance, I caution that there is NO quick way out. As Amity mentioned above, not taking necessary medicine can be very long and painful. The important thing is HOW a person deals with the circumstances that are in their life. If they feel led to reject further treatment, then they must be in a mental and spiritual place where they can trust God for His grace and strength and be able to live out their days with peace and grace as a witness to their faith in the One who alone is worthy of our faith. Many have gone home in this way, leaving a shining testimony behind them. But if, after earnestly seeking God on the matter, they decide to proceed with further treatment, then the same attitude must prevail in them and they must choose to live to honor God by being a living witness for Him. Either way—dying or living—any Christian who (like your friend) is in a circumstance that permits them a choice in the matter should seek to choose the best path in which to glorify God.

That is my sole advice. I do not think anybody should ever lay a course of action upon a person such as your friend. It must come from the person herself after she seeks God as to what to do and receives His peace. All we can do is support her and encourage and comfort her as best we can as she walks the road she believes God would have her walk for His glory. Satan will try to bring her into condemnation if she chooses to refuse treatment and fear of suffering if she chooses to accept treatment. She must ignore him and walk in the certain knowledge that God will be with her regardless of the choice she makes. He will not condemn and He will not bring fear.

Regardless, we know that one day we will see Bonnie in glory ... whether sooner or later.
Thank you for such a thoughtful answer. God Bless you!
 

Momma D

Well-Known Member
I personally made the decision not to use any life prolonging drugs in the event I got cancer, or some other type of illness which would require drugs that made me more ill than the disease itself.
I am now 74, and have had the health care directive in my trust, and at my doctor's office for several years. Every one of my sons agrees that this is my choice, and they respect it.
At this point, I have no health problems, so this was simply letting the appropriate people know my decision in advance.
 

Sojourner414

Well-Known Member
I can relate on some level, though my issues are nowhere near as bad. I will be praying for Bonnie, Amity, madcat, and for you as well, Spiritual Armor.

As to the question at hand, my only advice would be this: would it cause more harm to take or not take the medication? Not a simple answer I would say, as many factors must be considered. But I agree with Mattfivefour, that the lord would not condemn them either way, ad their decision would not be one of seeking to harm themselves deliberately.
 

fl2007rn

Well-Known Member
Is this person on some type of life support?

I worked in critical care for years. Some drugs are used to maintain blood pressure and I don't think that is sinful. But I don't know what kind of drugs you are talking about, that would cause pain and deformities.
Hello Joy! I didn't know you worked in critical care. I worked as a critical care nurse too and I don't think it is a sin for a person to be on full life support. I have an advanced directive and my husband knows that if I ended up in ICU on life support for whatever reason (car crash, stroke, etc) to give it a few weeks to see if I come out of it, and if I don't I want them to pull the plug on me! Please let me go to heaven and be with Jesus instead of keeping my life prolonged by artificial means.
 

Graceismine

Well-Known Member
I'd say it is fine if the patient is fine with it, and it's okay to stop the medication if the patient doesn't wish to take it.
I agree with Tall Timbers. I have no problem with medication where necessary. Withdrawing it simply leaves a person in God's hands completely and there in nothing wrong with that. I am against Euthanasia and would never suggest that route but taking ourselves of the meds is not suicide.
 

Eric Nicholas

Well-Known Member
H

No, the person is not on life support but they need to take a high dosage of steroids everyday in order to keep their adrenal glands functioning. This person has an array of rare medical conditions because 2 rogue antibodies (one attacking the sensory and the other attacking the autonomic system) compromised their body when they were young leading to various auto immune diseases. After being attacked for years by the rogue antibodies, the adrenal glands eventually stopped functioning.

Years of taking steroids lead to osteoporosis, thrush, trouble healing, abnormal fat deposits, skin tears, weight gain, lipoma skin deformities, skin infections which caused scarring all over body due to the immune-suppressive nature of steroids, also psychological trouble is common with steroid use.

This is an unusual case as most people who take steroids for Adrenal Insufficiency don’t have so many other factors that can easily send them into adrenal crisis without knowing it.

My question is if this person wants to stop taking the steroids because they’re tired of it making them feel bad, would God be alright with that? It would end their life in a painful manner. It’s keeping them alive but at the same time it makes them sick. Right now that person is having a hard time keeping their head above water, they do want to be in the rapture but physically and mentally they’re worn out. I can’t find anything in the scripture that really gives a clear right or wrong on this issue. Thanks
Nothing has made me so heartsick in recent memory. I am beside myself in despair. I will pray for precious Bonnie very hard. I have no advice to give, but only a distant, yet close care for you and yours.
 

Andy C

Well-Known Member
If an opinion is unpopular, that doesn't make it any less valuable. Sometimes the less popular opinions may hold more value than more commonly held thoughts within a sub-group of people (as we are). If I understood your entire post correctly I agree with what you're saying for you and any advice there for others has merit.

In my own case, if I didn't want to receive treatment for an ailment that might lead to death without treatment, I wouldn't need counseling nor would I seek it. It would be fully my decision and I would have no problem making the decision and owning it. Cancer is so prevalent that I've already decided that if I ever am diagnosed with some kind of cancer and have to go through some of the treatments I've read about... well, I just wouldn't be interested in pursuing those treatments. Would it be wrong or a sin to not accept treatment for a potentially terminal condition? I don't believe so, not at all. Might it be a poor choice to do whatever you can to stay alive despite the treatment you might have to suffer through for a possibly terminal condition? No. Not at all. By my way of thinking it is a personal decision. If you can pay for it and want it, get the treatment. If you'd rather not have the treatment, then make good use of the time you have left in this fallen world.

I would be extremely upset if I wanted to receive some treatment and a single payer board made a determination that I would not receive the treatment... I believe in old fashioned values and if I can pay for something, then I believe I should be able to work with the medical system to get the treatment. I don't believe that I'm entitled to treatment if I can't pay for it... I would consider a panel's decision declining treatment to me as equal to pre-meditated murder after I passed. I would consider a personal decision not to get treatment a decision to accept the diagnoses and it's NATURAL consequences.

All that said, I have many physical ailments and have come close to meeting my Maker at least a few times already. Day to day, I try to eat healthfully, exercise, get plenty of rest, and otherwise take care of myself. I like living, I like serving, I like sharing God's love to the extent that I can and do. But I'm not afraid to go home, and when the time comes, I'll probably be pretty excited. I'll have to consider hiding that excitement a bit so my loved ones don't think I'm in a hurry to leave them...
Great post, 100 percent I concur.
 
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