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Home From Hospital


Donna F
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Hi all

Just wanted to say thanks to everyone on here, you guys give me hope where no one else is. I was taken by ambulance on the 24th to the local hosp and admitted, they couldnt get my pressure up, i have been on Xanax, Florinef, and a BB before, now they lowered my BB cause of press and added Midrodine, I havent improved, just got out this morn.

I had a TTT in there and assuming they dont perform those often 4 min into the test i told the tech to let me down and she just looked at me then i heard code blue and well needless to say i failed the test, and almost failed at life! Scary they lost my hr in the 20's, so I am very scared now, I have been told my disease is progressing too fast and that basically they can do no more and yet i am bed bound and cant do anything. Should I just throw in the towel or has anyone else been told they were prog too fast and well I am just afraid not for me but for my kids. God what is it gonna take to get more people to know and recognize this as a real disease? I mean most docs i saw except for a min few asked me to explain my disorder!

We need to find a way to make this more known, somehow , I am afraid I am not able as of now, but I want help most of us have kids who may have this we need our local docs to have more knowledge.

We dont need to be told to go across the world and our local phys. say I have heard the name before, god it infuriates me because I am having to prob move in with my mother god, is it asking too much to just want to live your life, anyone know if i would prosper from Mayo, which was mentioned?

Pray for my family and myself, and i am doing the same for all of u, and thanks to all for ur imput it really makes me feel not so alone!

Donna F

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Donna,

First off I am sorry to hear you where in the hospital. I my self just got out last week after being in for 7 days its not fun. One thing I can say is never give up! There got to be something, somewhere that can help. I know the feeling things are getting really bad for be as well. I just got a new PICC for fluids at home, but as well my b/p it too low. They keep changing meds as well.

Mayo might me a great idea, or Cleveland Clinic, Dr. Grubb, EP doctor, and one that could help put a light on what?s going on.

I can say one thing there is a great support here at Dinet.org. We are all here for you! I wish you the best and will keep you in my thoughts and prayers!

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Donna,

I am sorry that you are going through such a difficult time. I will keep you and your family in my prayers. It may be worth a visit to Mayo, just to get some more answers.

I have met with a number of physicians that understand POTS, and yet they can't tell me how my disease will respond in the future. I have a good friend who has been told she would not live the year due to her cancer and various illnesses, yet she is still here and plugging away. She always tells me it is her goal to prove the Dr.'s wrong. She has a post-it note on her mirror to remind her to tell herself each day to say "I am getting stronger and healthier."

It is my hope that you will get stronger each day and prove the doctors wrong.

Rhonda

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Hi Donna,

Don't give up hope!!! Many of us have felt before like we were going to die (and some have even been told by incompetent doctors that we were). If your doctors don't know what you have or how to treat it, how can they give any prediction for your future???

I'd call Mayo or Vanderbilt or another big clinic right away. If your PCP is someone you think could help, ask him/her to get you an appointment. Be agressive. Don't let them push you aside. If you make enough noise, they will pay attention and spring to action.

One of the things I've learned during my illness is you have to fight tooth and nail to get the attention you need. When doctors are at a loss, unfortunately many of them react by ignoring the patient, blaming the patient or saying "there's nothing I can do." It's true, there's nothing they can do for you, but there are doctors out there who can help.

I know how rough you must feel right now, and I know how difficult it is to be sooo sick and having to fight for what you need to survive...I'm in a bit of a similar situation myself right now. But I know that if you fight and make noise, you will eventually get the treatment you need.

Please let me know if you need phone numbers or doctor's names or anything, just send me a PM and I'll try to help.

((Hugs)) and hold on dear!

-Lauren

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So sorry for all of your fear and anguish. That is such a normal response to what you are going through right now.

Have you been diagnosed with anything? I wonder what they could possibly mean by "progressing too fast" if they have no diagnosis. Unfortunately all too often doctors throw in the towel on their patients when they don't know what to do.

I would not fear a life-threatening condition unless you are already diagnosed with something specific. The vast majority of women diagnosed with dysautonomia do not have a life-threatening form. That does not mean it does not feel life-threatening at times or that you don't have episodes of loss of consciousness, etc. depending on what form of the condition you have. And it can be severely disabling without proper treatment.

If you have not yet seen a specialist, it sounds like that would be a good next step--even if you have to travel a distance to do it.

Let us know how you are doing.

Katherine

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Thanks to all of you for your words of encouragement, it is hard now. I to be honest dont feel as if i am gonna make it, i hope i am wrong and know i need to get a better attitude, esp for my kids. But I greatly appreciate all of your help. I am going to a dr in Pens. who is a dys spec. and am poss goin to Mayo.

Katherine, I have a diag of PAF, POTS, CFS, fibro., and many other weird things. What puzzles them is that I dont just pass out, on the TTT, I flatlined, so it is more to it that they havent found and seems as if they are not going to try.

I am gonna go lie back down now as i am still just beat from being in the hosp, they would wake me up a min of 5 times a night freaking out over my low h/r. God, these people need to get educated more!

Tired in Al

Donna

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Guest tearose

Welcome home Donna,

I am sorry you are having a rough time. Please don't loose hope. That is the one thing we must hold onto!

The right medical team WILL figure out what is going on with you... the hard part is being patient while you assemble the team. Hang in there!

I will of course keep you in my prayers and meditations!

maybe returning home will bring you a more peaceful feeling for now.

best regards, tearose

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Also I dont know how to add my meds etc , on here i had a pacer put in on Oct 3 and I take Florinef, Xanax, Aceb(BB), and they added protonix and Midrodine so not sure what combinations work but I dont know how to post my meds and diag at bottom like u others, so I do it like i know how.

God bless u all

Donna

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Also I dont know how to add my meds etc , on here i had a pacer put in on Oct 3 and I take Florinef, Xanax, Aceb(BB), and they added protonix and Midrodine so not sure what combinations work but I dont know how to post my meds and diag at bottom like u others, so I do it like i know how.

God bless u all

Donna

Go to My Controls on top before - view new posts, then my profile, edit signature- at leas that is how I did it.

Will keep you in thoughts and prayers.

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Donna,

i hope you feel a bit better today! i wanted to let you know that i don't pass out at ttt's as well. i did have "fainiting years" at about 16 and 24/25. during my ttt's (i've had 3) i always had a big rise in hr and once a mild drop in bp, the second time none drop in bp and the third time a big drop in bp. still i didn't faint.

can't explain and don't want to. i'm trying to live my life the best i can and somehow i do succeed, eventhough i'm in my recliner most of the day. my hubby and i have two boys (almost 16 and 12 now). they were 10 and 6 whn this all started. yet they live a perfectly happy life with a sick mom. You can do it, i'm SURE!!!!!!

warm wishes,

corina ;)

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Just wanted to show you some support too. Don't give up, keep on fighting!! Your kids need you. ;)

I hope you can find more answers soon.

(((HUGS)))

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Donna--you are dealing with a lot of diagnoses and unknowns. I hope you can see a specialist as soon as possible. Also, could you see a counselor? The mental element of managing chronic illness is so key to healing. There is a great book--Spontaneous Healing--by Dr. Weil, that helped me a lot. Don't ever give up hope and keep seeking answers! I know this is hard when you are feeling so rotten and so scared.

Katherine

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Donna, if I can ask, what do they have your pace maker set at? The reason a person gets one, is so they don't drop their heart rates, it's the whole purpose of having one.

I was having 7-8 second pauses and rates of 30. My pacer is set so my heart rate will never go below 60. If it tries to, the pacer kicks in...so I'm confused. Did you get the pacer after this experience? If you did, you shouldn't have to worry about the flatline issue.

I am not downplaying this at all, just can't understand why your pacer isn't picking up when it should???

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Thanks again to all of your advice, I am still feeling bad, not sure having some bad headaches, not sure if it is the new med the midrodine, or flor. or both. But at any rate, I will get that book and now I have had some therapist in the past but got out of it, before i was diag they thought i was a mere nut, so it was never about my disorder just that i was considered to be a hypo. And Morgan as far as my pacer goes they did bump it up somehow which is scary, mine did pick up but however after i had gone all the way down, so they reset it at 60 but it was suppose to be there all along, it is scary too cause even though they have the strips from 3 sep occassions where my heart was almost or was stopping the people who come around and check ur pace said mine wasnt showing anything , i am wondering if this thing is defective or what?? Scary as that is I am gonna have another TTT on the 13th with Dr Thompson in Pen, Fl. I am afraid because I have never even passed out before this test, and so it is all new to me. The doc said he new i had that but however, I was just having the walking into walls, and tunnel feelings etc before, so now I know there is more going on.

Hope they can get to the bottom of this, my family is not even letting me drive, god, how much more can i lose

Thanks to u all again I am tired and gonna lie back down for a bit

Donna

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Ok, I was awake all night until 5 AM and groggy so not comprehending what you are writing Donna

WHEN did you get the pacer?

If it is FAILING, you need to call somebody. Here is a link about a Pacer recall from a couple of years ago

http://www.monheit.com/guidant-defibrillat...ll/models.shtml

Do you have one of these brands?

I do not understand how they reset your pacer and you STILL flatlined?

Have you CALLED the doctor who inserted the pacemaker. I would not be hesitating to do this.

pacers can be defective but from my little reading on a couple sites, you are the first that has flatlined since GETTING a pacemaker.

Hope you get help.

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Hi Sophia

I called my cardiologist office and to be frank i am stuck they have no sympathy at all, the prob is that there are no other elec./card around here, and therefore dont understand that this disorder affects the elec part of ur heart. I dont know exactly what happened, i think i have more prob than just the dys. prob, they are talking or were about goin in and doing something to some chamber, then they just upped the rate of my pacer and sent me home. I am miserable now i feel it all day almost and it paces my hrt rate to about 120 then drops down to the rateof around 60 or so then starts again. I dont know if i actually completely flatlined but they lost my hr at about 30 or so, it is my understanding that if your heart just stops and dont just drop suddenly i would have to have a defrib. to restart, it is all confusing, and angers me i never laid eyes on my card. they 8 days i was in.

I am under a subs. amount of stress, I have had to put out my fiance of 6 yrs the day i got out cause he has a drug prb and now i am not driving much, as afraid so my kids arent here, it is all too much and so not sure where to start or who to call. Seems my drs just dont know what to do, when i got the pacer in oct they said my heart had stopped beating for almost 2 min when i got to the er, i wonder sometimes if they really know what they r doing. I am thinking of trying to go to the Mayo clinic, all my new meds arent working. Any advice from anyone? This disorder abs. stinks!!

Donna

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Hi Donna, I can't help but say I'm concerned after reading your posts that perhaps your doctors may have missed something? Most of our members do not have "flatline" moments on the TTT. The few that I know of appear to have some kind of genetic issue, either a spontaneous defect or a familial one.

For example, Linda Smith over at NDRF has the NET transporter gene defect, as does her identical twin sister. Also, on our forum, I believe Ernie may have been through similar issues. For Ernie, it appears to run in her family--and her brother passed away very suddenly from what is believed to be the same issue that Ernie has (they still aren't exactly sure what's going on with her, if I recall correctly).

I mention the above people because their issues were not quite typical of POTS or NCS and their tests were rather dramatic like yours. I know that Linda has benefitted greatly from having a pacemaker to make sure her heart doesn't go too slow (like yours did).

I would strongly encourage you to be seen by a doctor (or a few!) that are willing to be better detectives on your behalf. Thinking of you,

Nina

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I agree with Nina. I have a pacemaker and my heart rate never goes below 70 bmp. When the turn my pacer off when testing in the office it goes down right away in the 30's. I would be sick, if my pacer was not pace where it is. It does casue problems with my pots, but i can deal with it.

I know that with all the problems I have had, I keep pushing for a docotr that will listen. If you think there is more going on, you know your body better then anyone else keep pushing for answers. If you don't think you are getting what you need keep going.

Good luck, I hope they get to the bottom of whats going on soon for you!

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Oops, I forgot to add that Linda has had to have the leads on her pacer replaced at least 2x at this point. Also, my dad's pacer w/ defibrilator was recalled and needed to be redone last year. Again, you need a doctor who is willing to look for answers rather than proclaim there is nothing to be done.

Nina

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Also, your pacer can only speed your heart rate up, not slow it down. it only RECORDS it if it's fast. Sometimes when you first get it, they "tweak" it, trying to find how it works best for you.

They did that to mine. When I first got it, my heart was paced over 95% of the time at 60. it was set at 60-150. All that means is, if it tried to drop below 60, it would kick in and fire, but if it stays above 60, it just watches it. if it goes to 150 or above it will record it, so the doctor can see it, kind of like a holter or event monitor.

My pacer has a little mechanism in it, they shut off at my first visit. It kind of inhibits the heart from speeding up more than is necessary. After they shut it off, my heart totally wigged out. i called them and went back in and said to put it exactly where it was when they inserted it. Within a couple days i felt much better.

I can't feel my atrial spikes, but I do feel ventricular ones and they are not very comfortable. I don't have a lot of them. Also, at 11 pm every single night, my pacer does a test on itself, so it feels like I'm having a lot of arrythmias for a couple of minutes.

They turned the voltage down and now it's not so bad, although I still feel them.

I would call them and tell them this tweaking did NOT help and ask them to readjust it. I thought I was going to die too, until they explained what was actually happening.

If you just got your pacer in October, they can do a complete test on it and will know if it's not doing it's job or is defective. They can see my whole history on mine. It sounds like they aren't getting that maybe the voltage is too high and is making you miserable.

If you are actually flatlining, the pacer will pick up on this. it sounds like that happened before you got it...it's why you got it. So it shouldn't be happening now....and they should be able to tell if there's a problem. Hopefully they put a magnet on it and run a program that takes several minutes to complete. this makes me hot and feel weird, because I am very sensitive to it. Also, make sure you have read your booklet and are not using products and are around things that can affect it. (Like underneath those huge power lines)

Hopefully this helps a little. I would just get back in and ask them to tweak it again. As my guys told me, sometimes it has to be tweaked several times to work right for the individual.....good luck

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Hi again all

Morgan and Nina, I agree that there is something being overlooked. I cant seem to get them to listen, and unfortunately the elec/card i have is not sympathetic at all! I was on florinef, and bb along with anxiety meds ,etc. when admitted week before last , they added midrodine to it, it hasnt changed anything except major headaches, and they did i guess u call tweek it, and it now feels like i have ran a marathon as every night my hr bottoms out and it kicks in and they said they were going to increase it to 85 for 3 beats or so, but when it happens i check my hr and it is never under 120 and after this goes on for a few hrs, and i finally go to sleep i wake up feelin as if i have run a marathon.

I have pain now that is just becoming unbearable. I dont think the new med is working, i have heard that i could try adderrall, and it would not only help with the pressure, but with brain freeze, lol, and breathing energy, etc. Anyone aware of this?

Also I was curious i see so many people on here asking and talking about this lyme disease, isnt that like something u get from ticks or something? No one has mentioned that to me. I am curious about that and i think i may try and get into Mayo or somewhere, any suggestions?? I know it will be costly, i am going thru a seperation well permanent so now alone and because i am afraid of driving right now, i am alone and feel like i lost custody of my boys because they r here on weekends, so i would like to find better docs, maybe diff meds , etc.

Thanks for all of ur support to everyone

Donna

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Hi Donna

I just read all your posts here. I am so sorry that you are going through such a bad experience and hope you will find the way to solve it as soon as possible.

I will keep you in my thoughts and prayers.

Please, do not feel down. I know there are plenty of things going around your head right now, but keep the faith. You have friends here. Count on us when you need some venting. Share your thoughts and doubts.

And keep on looking for a good specialist. You have got some excellent suggestions here. I also agree that there must be something wrong with your pacemaker.

Keep on fighting.

Take care,

Love,

Tessa

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