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A VERY hard decision to make by Friday...What to do?


mngirl
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Well, I went in for my infusion yesterday, still unable to eat anything...I started to get chest pains and it was getting hard to breathe again so I asked the nurse if we could slow it down in the beginning until I see how it goes. Well...They havenow moved my infusions from the Internal Medicine dept to Onocology, so now I get to sit with everyone that is getting chemo treatments done. A little depressing and also the chairs SUCK for having to sit in them ALL afternoon. Now I have a WHOLE NEW group of nurses that have NEVER done these type of infusions before. So, instead of just saying, okay that's fine (like the other group would have said and just did), she said that she needed to get my doctors approval and him to write orders to that effect...okay, at this time it was NOON! What if my doc wasn't in? She wasn't going to let me do the infusion! She takes off in search for him...

Luckily, she comes walking in with him in tow. He sat down and I told him all that happened over Christmas. He told me to stop one of the meds I had just started taking about 3-4 weeks ago. He isn't sure if that is the cause or not...my bet...not. Then he really didn't say too much more and then stood up with the nurse and wrote the order for a smaller dose and at a slower rate...I could have done that! At that time I also asked him to write a refill on my pain meds. He said, okay. Well, I didn't see him walk out, but he did WITHOUT writing my new prescription. So I asked the nurse a little bit later about the script. She said that she would run over to his nurse and let her know. Usually then his nurse just gets him to write it and then brings it over. Well, this time my doc came back!

Then he sat down again. So I am thinking that that was intentional because he needed to go and look something up...

We started talking about what happened again and he said that we need to change the way we are attacking this whole situation. He thinks that what I have been having over the past 3 months are MAJOR flare ups of whatever is going on in my system. He thinks that my system is attacking itself and this is the result of all that. With that theory in hand I asked him then what do we need to do. He said "well, I was hoping we would NEVER have to go down this road, but I think we are there." Not a good start to the conversation. With my body attacking itself and with my Addison's on top of all this, we have to knock down my immune system to allow my body to somewhat function. What that means is that for the next few days I am doing a high dose of my prednisone (a steriod) and if things start to get better as Friday comes then we know that more has to be done. But, you DO NOT want to stay on high doses of Prednisone for very long as it starts to cause kidney and liver damage. So...and here is the part that really scares me...I would have to start being on the same medication that they give to organ transplant patients in order for their body to not reject the organs. Basically totally knocking out whatever immune system I have...to nothing. I asked him...Don't those people who take this med get sick VERY easily because they don't have an immune system and he response: "Yes, they get sick very easily and that is the concern and why I haven't done this yet." I said that didn't sound very good and what are the chances of me getting sick...and he response was "there is a very good chance, that is why I haven't done this yet."

He said that if what is going on is flare ups, then what I need to do is to avoid those and try to keep my body at somewhat of an even keel. If I don't do this, then the rest of my life is going to be cycles of being in the hospital and feeling somewhat decent.

If this is what we are going to do, and we are going to decide this on Friday, then coming into contact with ANYONE who has ANYTHING could cause some MAJOR issues, especially since I have Addison's Disease and already have organs that don't allow me to fix myself. I had to take this stuff about 6 years ago when I got Lymes Disease. I was told NOT to leave the house for the 2 weeks I was on it just because of what it doesn to you. Then I knew it would be over in 2 weeks...but this could be forever! My boys get sick SO MUCH...I can't imagine what it would do to me. A bubble will probably be the safest place for me to live!

At this point, this is my ONLY option. He said he doesn't know what to do otherwise. My body is trying to shut itself off...and at this point it is starting to win.

I am totally scared about all of this. What it is going to do to me. How it is going to effect my life with my family. We do SO MUCH stuff outside the house when we can, that I can't imagine not being able to get out because there is a cold strain going through town. I am at a TOTAL loss today. I just keep thinking about this and I just can't handle it. I explained this to my DH last night and I just don't think he really gets the whole impact of all this. He is flying to Florida tomorrow morning until Saturday, so he can't even go with me on Friday to talk with my doc. Well...that's it. It may not sound too awful to any of you, but this is a HUGE decision to make. Which way do you prefer to live is what it comes down to...Sucky choices don't you think?

What would you all do?

TIA~

Lisa

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Lisa,

If I were in your shoes, I would arm myself with as much information as possible before making a decision to have a drastic treatment. I assume that is part of what you are trying to do by asking for help here. Can you get a second opinion? See a different specialist? That is what I would do.

Good luck. Stay connected with us. It helps.

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Lisa,

Okay..I'm not sure if I've missed something in your former posts..are you talking about treating POTS by wiping out your immune system?...or do you have other issues that your doctor is trying to address?

I am NOT a medical professional..but I would advise you to think long and hard about this..and WHY do you have to make a decision by Friday?! Is your doctor familiar with autonomic problems? I ask because I've never heard of this approach to treating dysautonomia before.

Have you been tested for autoimmune issues before? Have you spoken to your doctor about the new reasearch being done on antibodies and plasma exchange?

I'm sorry..not trying to tell you what to do..but PLEASE take time to think this over and I'd urge you to get a second and maybe third opinion before doing something so drastic and irreverable. :)

And don't let anyone pressure you into making this decision by FRIDAY..it's your body and your life..take the time you need!!! :)

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Sorry I do not know your history but that you have indeed has lots of struggles. I am surprised you are being rushed into such a LIFE ALTERING decision.

I must agree with Jan on this one and yes, please seek a second opinion, or even a third if you are a complex case...and arm yourself with all you can find on this. My late brother in law had a heart transplant and was on many many POTENT drugs to keep him alive for an additional 8 years.

He didn't have rejection of the heart though a few bad biopsies that had to be remidied. but the drugs he was on --in his case, not sure the specificities of yours--were endless in their hairraising side effects. He was a doctor/surgeon but sometimes had to take himself off the meds..some caused horrible painful muscle spasm and had in in agony...others he could never sleep, etc.

If I remember correctly, weren't you hospitalized a few weeks ago and put on a boat load of meds? with your ADDISON's, can you seek out a second opinion of an endocrinologist and fill him in on your history. I know Addison's is nothing to mess around with either so your decision does indeed put you a risk to protect YOUR BEST INTErEST.

I would hate to see you jump into such a MAJOR LIFE CHANGE and frankly, please do not let the doctor rush this. even though you feel badly, you need time to think clearly, take a deep breath and study your options.

If you truly HAVE TO GO THIS WAY in order to live, then it's a no brainer but please, explore your options and do not let anybody rush you. You deserve the best you can be with your kids and husband. And that means time tto make the correct decision.

That way, whatever path you have chosen, you can do it w/o second thoughts of regret. Once the toothpaste is out of the tube- with immunosuppresent drugs, there is no turning back. Though I know there are higher and lower degrees of potency and my brother in law was on major doses having a new heart.

Please be good to youself and ask for an extension of time. It is your life to choose and don't let your doctor pressure you.

Good luck and please let us know what you decide to to.

Best to you.

Sophia

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Hi Lisa,

Sorry i dont have any advice i just wanted to wish you the best with making such a stressful decision.

I dont understand what the rush is either... it is a huge choice for you to make and you should feel like you are not pressured into it. Obviously if it was a life threatening predicament it would be a different story but it seems that what you are suffering is very disabiling but not life threatening at the moment?

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I have to agree with the above get more opinions!! If he had to think twice before he came back to talk about it , I 'm not sure, he's too sure. I will be thinking and praying for you. the deadline perplexes me.

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HI Lisa,

I've been out for awhile so I'm not versed in your history. However, as others have said, I would get a second opinion before rushing into a drastic treatment. I've had doctors tell me that ablation was the ONLY option, but later found out they were full of crap. Doctors often have the best intentions, but they're not infallable.

Okay, with that out of the way, I hope whatever you decide to do helps you greatly. You'll be in my thoughts.

Cheers,

Lauren

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Hi Lisa, that is a very hard decision to make, but I am also wondering why you have to make it by Friday?? It's not like it's just you all by your self, you have a family also, so it's going to be hard to not get sick. I would seek at the least a second opinion if not more. Make sure you see a doc who is familiar with POTS. If you feel this is what you have to do then by all means do it. Just make a list of the pros and cons and see what you come up with. Whatever your decision good luck and keep us updated. :)

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Guest Belinda

I was also on Prednisone..nasty drug..I caught a cold within a week and it knocked me out completely a spurred my POTS of course that was while being weened off.

This is a big decision..I completely uinderstand..they gave me prednisone thinking it was asthma causing my shortness of breath.

Soon after that they saw My adrenal function go kaput..So I would consider the 2nd. opinion.

Of course Iwasn't in Addisons crisis but I was in adrenal exhaustion. These drugs are nothing to mess with

of coiurse you know that. I know though it is very hard with kids as I have 2 also. And the little stinkers carry so many germs-gotta love them though.

Good luck on oyur decision,Belinda

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Is the doctor wanting to see how the treatment works this week and if it does, that is why he says Friday would be the day to decide what to do from here? Well, I don't want to disrespect your doctor because it seems (based on your prior posts) that he does truly want to help- but it also seems he may be in over his head. If I were you (and I'm not) I would inquire into finding the absolute best Addison's doctor available. You have already invested thousands of dollars on treatments that neither you or your doctor seem real sure about. Getting sick from a weakened immune system (it IS flu season) may be more detrimental to you than any of the other sxs you have been expereiencing. Destroying your immune system seems awfully risky. However, if you have confidence in your doctor the best thing you can do is research and advocate for yourself before making any major decision. Personally, and you did ask, I would find the best Addison's doctor possible and it would be great if he/she knew a thing or two about autonomic dysfunction. Are you close to any research or teaching hospitals?

Carmen

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I agree with the others. Definitely take your time and make an educated decision. And I agree that the suggested treatment does not sound like a standard treatment for dysautonomia. Does MN stand for Minnesota? If so, maybe you could try the Mayo Clinic. Let us know what you decide.

Feel better soon,

Rita

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That is a tough decision. A second opinion sounds like a good idea. Any other dr's that have been working with you that you can discuss this with?

Prednisone can be a wonder drug in some cases, but not without a price many times.

If you have the time, take it to investigate this further.

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Yikes!!!! You are being faced with some major decisions all at once. I agree with the others saying to get another opinion before doing anything drastic.

Did you say you had lyme disease? If I read that correctly, prednisone/steriods in general are VERY BAD for lyme disase/co-infections. I was given them before we knew I had lyme and it sent my body into a major major crash, made me ridicolously irritable along with alot of other bad stuff. I can only take them if its a life or death situation.

When we were going over medications with my lyme specialist he said that lyme patients shouldn't ever take prednisone or related meds unless it has to be done to save their lives. Due to the immune system already being so taxed by the lyme bacteria, the body just crashes with the added stress of steroids.

Do you have a lyme specialist? Can you get in touch with them and get their opinion? Perhaps you need the lyme re-checked and some treatment for that. I would consider doing a round of antibiotics for lyme if that might be a possibility BEFORE prednisone. That should likely be a last resort. The steroids just sound too risky to me. I don't know your whole sitatuation or alot about Addisons.

Get more opinions, seek them out yourself-not just the doctor calling, and make sure you are comfortable before going into whatever the next treatment plan is.

I brought up the lyme since you mentioned that, but also because it can cause fainting and tackycardia. We found out that is the source of my POTS, and as my treatment is progressing, my POTS is diminishing. I have chronic lyme, so its going to take some time, but it greatly helps me to not being having syncope ALL day long, from the moment I sit up in bed and pass out, etc.

Good luck! Let us all know how you are doing if you have enough energy to post!

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Wiping out your immune system and taking organ transplant anti-rejection drugs, in my opinion, is not a solution. Having taken care of my dad up to and following his kidney transplant nine years ago, I have been in and out of the hospital with him so many times I can't even count, and I would say about 99 percent of the cases were due to decreased immune system function from the CellCept, prednisone and Neoral he was taking. He almost died four times from sepsis due to strange bacteria that a normal person would have fought off easily, and he didn't even go out much.

I think you need to scrap this option and find another specialist willing to try other meds and work with your current treatments. Again, non-medical my opinion is, but realistic. Good luck and I will be thinking of you.

Amy

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I am sorry you are facing such challenges. Good luck with seeking a second opinion. Is this physician a POTS specialist? This is not standard treatment for POTS, so I am wondering what brings him to the conclusion that this is going to help you more than hurt you. Many of us with POTS also have an autoimmune disease, btw (including me), but I didn't think there was a test that would determine that POTS is caused by an autoimmune process at this point.

Take care,

Katherine

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This is just a question--are you sure you have POTS? Or, is the Addison's causing the POTS-like symptoms that can be reversed somewhat with treatment for Addison's. Have you consulted with the doc who treats you for Addison's? During the times in the early 90's before I met my POTS doctor, my internist and my endocrinologist investigated the possibility of Addison's.

On the subject of digoxin, I think it stays in your system for quite a long period of time. My cardiologist didn't want to try it on me when I was having loads of strange beats. He said that when you start introducting anti-arrthymic drugs you can have loads of unwanted and nasty other symptoms and/problems than if you did not take these drugs.

Let us know of your treatment plan. Hopefully, it will bring you some well-deserved relief!

Lois

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POTS & Addison's - Yep, I have tested positive for both. Both through the Mayo Clinic in MN.

~Lisa

This is just a question--are you sure you have POTS? Or, is the Addison's causing the POTS-like symptoms that can be reversed somewhat with treatment for Addison's. Have you consulted with the doc who treats you for Addison's? During the times in the early 90's before I met my POTS doctor, my internist and my endocrinologist investigated the possibility of Addison's.

On the subject of digoxin, I think it stays in your system for quite a long period of time. My cardiologist didn't want to try it on me when I was having loads of strange beats. He said that when you start introducting anti-arrthymic drugs you can have loads of unwanted and nasty other symptoms and/problems than if you did not take these drugs.

Let us know of your treatment plan. Hopefully, it will bring you some well-deserved relief!

Lois

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hi

I'm going to approach this from another perspective. I have both an autoimmune disease and POTS. The neuro thinks they may or may not be inter-related, but clearly when one isn't behaving the other comes along for the ride. I take prednisone and immune/suppressants-anti-rejection drugs, call them what you wish. For my condition, IVIG is a safer option, but is not approved by the socialized medical system in my country. I take prednisone and imuran because if I didn't, I would probably die of my disease which is what happened this years ago before people were treated with the above drugs. I don't think any doctor would prescribe immune suppresants with a light heart. It is a heavy decision. It is considered a form of chemo, and needs constant follow-up. I take monthly blood counts and try to wash my hands often. But again, I'd rather be at risk for possible long term affects than die of my illness.

Imuran as well as cellcept take time to kick in. Months. Which is why it is started with prednisone (even so it takes time to kick in and may feel like it's kicking you in the meantime).

Of course this is a big decision, but sometimes serious illness needs to be treated with serious drugs.

Although the POTS was dx as a separate disease, you may feel better in terms of POTS once your other problem is managed better.

wishing you ease in making the decision, feel free to pm me if you have questions about the medication.

Ariella

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