In Hospital- Update

[mkoven]

Very long story short, I'm inpatient at Northwestern. I had a bout of chest pain on Wed that didn't resolve, and went to er. Particularly with abnormal stress test, they weren't about to let me go. I did however get transported and admitted to nwmh last night, as I'm too complicated for the Champaign system.

I don't know how good nwmh is for ans stuff. I just saw the cardiologists on call who want to do the angiogram on Monday, but are starting their allergy prep on me this weekend. The head cardiologist I just saw thinks the stress test was probably a false positive, with ans dysfunction the main problem, though he agrees that we have to do the angiogram to finally put the cardiac question to rest. And I do have a relationship with the allergy department here, who will help work with making the allergy situation safer. He then wants me to talk to electrophysiologists next week after the catheterization to talk about managing the ans stuff. IT sounds like being here will at least put the cardiac component in perspective, but I don't know what they will add if it is just autonomic? Except yet another opinion??

I don't know how easily cross-hospital talk happens. I'm still finding that there are a lot of diverging opinions that are hard to reconcile.

I noticed that when they take my vitals, not only do my pulse and bp fluctuate, sometimes a lot, sometimes not, that my pulse ox fluctuates too. When they were taking a standing bp, without a huge drop, despite hpw I was feeling, I saw my o2 drop from 98 to 90 in seconds. Anyone else know if they have positional changes in oxygen, not just hr and bp?

It's been a little frustrating to say the least. A lot of micommunication. It's good that I'm alert and oriented, or mistakes would happen left and right. They had me down taking the totally wrong dose of midodrine at the totally wrong times. I take 5mgs 4x a day, they had me down as taking 5 twice a day---luckily I explained very strongly that this was a poor idea. There's a lot of playing around with my meds, but I don't know that it's being done in a principled manner. It seems like docs disagreeing with each other. Off the plavix.

Sorry to whine so much. I'm just very frustrated and kind of anxious. I seem to be complicated enough that "business as usual" doesn't work. And then I get all hypervigilant and that stresses me out more. My spouse is here with me, but it's clear that I have to be the one to speak up. And I'm exhausted and frankly don't feel very good. I continue to get chest pain going down ly left arm when i'm doing anything, and sometimes supine too.

In the midst of all this thye tried to give me morphine for chest pain, and of course, instant allergic reaction.

Any individdual doctor or nurse is perfectly pleasant. I'm just frustrated about having problems that are rare enough, and yet sound familiar (chest pain) that the chances for a poor treatmentt choice are high.

Sigh.

[Megan]

I'm so sorry! I am praying for you and hoping that tests give you answers and you start to feel better!

Meg

[Sophia3]

Honey don't apologize for whining from the hospital. You have a lot going on and have every right to gripe. It's exhausting to be one's own ADVOCATE when one feels like ****.

I hope you get some answers and I look forward to updates. Keep keeping an eye out.

Healing thoughts and prayers.

soph

[nunibenuni]

Hospitals are so annoying. I don't know that much about northwestern, but it is currently still affiliated with Evanston Hospital which I've gone to numerous times (not since being diagnosed with POTS) and had a good experience. I think the doctors at nwmh should be pretty good. I know that this didn't provide that much insight, but I hope that you get some help.

Hannah

[MightyMouse]

Michele, I'm so bummed to hear you've been interned... bummer. You and yours should continue to stay on your toes. Hospitals aren't that great at dealing with folks like us who are so complicated--errors happen all the time, but for our crew, it can be a bigger problem than with most other people. Teri always says to me "hospitals are dangerous places."

I'm betting they had to take you off plavix in prep for your angiography, but I could be wrong.

Hope your feeling better soon, and home asap.

Nina

[Ernie]

Hi,

I am sorry you are in the hospital. I prefer to be sick home than at the hospital. I hope that you will be able to go home soon.

[mkoven]

Thanks you guys for all your support. It really helps. The allergy people came to talk to me last night and we discussed the protocol. I'll be given multiple megadoses of solumedrol tonight and tomorrow as well as benadryl so I can tolerate the contrast. And they are writing that I am not to have betablockers as they can worsen any reaction. I'd be nervoud about the cath eve if it weren't for my allergies. And then there's the bit about steroids making my tachy and superanxious. I just want it to be over and to be sufficiently sedated that I am unable to remember or care while they're doing this to me.

I think the cardio people are good here, but it's amazing to me what they don't know about ans stuff. When I said my symptoms are worse around my period, they said they couldn't see any connection. I thought that everyone knew that! Also didn't see link between migraines and ans. After the cath I'll see some eps who might be more knowledgeable. Every time I sit up I get chest pain, it seems.

And yet, nurses are alerted each time I use the bathroom, because I guess I do get quite tachy when I'm up, esp without stockings.

I just want to be normal, have a proper shower, wash my hair, and not wear that lovely 70s green gown that exposes my backside. It just feels so infantilizing, the whole thing.

[LindaJoy]

I am so sorry that you are having to go through this experience. It's hard engough being hospitalized, but when you have what we do, it's so much harder.

I've been hospitalized 31 times in the past two and a half years. I'm to the point that I don't expect anything more than an IV and grief. I'm never disappointed, either. I hope your experience gets better and you find some help.

Please take care--easier said than done, I know. I'm sorry, too, that you have to remain so vigilant and have to act as your own advocate right now when it would be so much easier on you to just lie back and be taken good care of.

Please know my heart is with you right now. And, do keep us updated. You'll be on my heart until you're home, safe and well again.

Lindajoy

[Tessa]

Oh, I am so sorry to know that you are in the Hospital... But I really hope that they will be able to help you to feel better soon.

I know that you need much more patience when you are at the Hospital... It is frustrating, but try to rest and think possitive

You are in my thoughts and prayers for a soon recovery.

Take care and keep us updated, when possible.

Love,

Tessa

[mkoven]

Thanks again, you guys for all the support. I really mean it!

I'm trying to distract myself today and not get too worried. Unfortunately the tv channel selection is limited. So I've been trying to watch funny clips on youtube. I'll take weblinks, if there's something you think is funny!

So far I've been watching old woody allen standup and videos about silly animal tricks. (My spouse has made me promise to limit medical googling, because at this point it just stresses me out.) Thank goodness for wireless laptops! Brian also promised to bring me the new David Sedaris book, and read it aloud to me, if I'm not up to reading.

I think I've seen all the doctors I'm going to see today. You never know when one is going to show up, so a lot of sit around and wait. They've ordered me a sedative for tonight for after they load me up with solumedrol. I'm dreading the steroids nearly as much as the procedure.

[pat57]

sorry, I sounds like a terrible ordeal.

I'll be thinking of you.

[ajw4790]

Hi,

Sorry I am chiming in kinda late. I was sorry to see that you were admitted to the hospital, and then having to be transferred and everything. At least it seems that they are taking you seriously and listening to you, and are looking for all possible ways to try to find answers. I hope that they continue to be understanding and are helpful in finding some answers and relief for you.

I hope all the testing etc. goes well, and that you will be able to return home soon, with some answers and relief of some of your symptoms.

I hope you find more things to entertain you online, sorry I don't have suggestions. You tube is a good idea, if you like tv shows, you can go to ABC or whatever channel online and watch whole episodes on demand.

Also, if you have a dvd drive you could watch dvd's (movies or tv shows) that you may have or can rent.

Best of luck!!!! Hope you get some rest!

[Mary P]

Hi,

I'm so sorry to hear of all you've been through. It's bad enough when one is 'normal' and in the hospital, let alone an ans patient and knowing that no one knows how to treat you effectively and with respect.

When I read your posts and other posts about so little knowledge and help from the medical community, it makes me furious. When I did some of my first research on ans, I read that most GPs and nurses know nothing and so don't take us seriously. A study of ans should be every bit as much a part of becoming a GP as diabetes or heart disease are.

I pray that what's to come will be of great benefit to you. You deserve nothing less.

Mary P

[nadine]

thinking of you and hoping you will be able to return home soon------

[mkoven]

ust an update on a painful, wasted day.

Today was sort of a fiasco. They started the allergy prep on me last night with 3 spaced iv doses of 80 mgs solumedrol, and then benadryl. I got to the cath lab, all ready to go, and about as revved as one could be (in other words, just wanting it over with). Unfortunately I have bad, fragile, small veins with poor iv access. They determined that my very difficultly achieved iv had partially infiltrated-- so they didn't trust that I'd gotten the full prep, and were concerned that they couldn't get emergency meds in me if I didn't have a good iv. And none of the nurses in the cath lab could successfully start one either. So they sent me away for today, telling me I needed a picc line, which means tolerating another 240 mgs of methylprednisolone, an d trying again tomorrow.And seeing when they could get a trained person to even install one. Then I find out that the cardio on the floor doesn't want to do a picc line, because of the risks of infection. So tonight's plan is to take the prep orally (no iv), and then have the cath people administer me any emergency allergy meds through the artery or intramuscularly. So I currently have no iv, and no one is trying to get one in me. (Could this be eds making my veins so useless??) So a pointless day of stress anticipation, sitting around and waiting, and high dose steroids, all in vain. I feel like a car sitting in the repair shop.

this place seems strong in general cardio and allergies, and not so sure about autonomic. Noone is interested in comparing my vitals in supine, sitting, and standing positions. I've stopped suggesting it, because it doesn't get recorded, and I then just end up feeling sick from the standing. The one thing they've noticed, since I'm on telemetry, is that my heart rate goes from a steroid-elevated 96 (normally 65-75) to 140 when ever I get up to do anything. And then someone comes in to make sure I'm okay.

So I think the competing diagnoses here are - some type of blockage, autonomic stuff, or microvascular ischemia-- which from what I was told today the cath probably won't show, as those vessels are too small for the angiogram. Many think the the stress test was a false positive -- but of course with my symptoms, has to be followed up on.

I speak up as much as I can, but bottomline, on the patient end of this extended inpatient adventure, I don't feel I have a lot of control. I've caught and spoken up about multiple medication error near-misses, but there seems to be a clear, but not always well coordinated chain of command. When I say something to a nurse, or a resident, it may or may not get properly relayed up the line.

Regardless of the cath findings, I don't think I'll be sent home immediately after, as I am so symptomatic, I get chest pain, short of breath, pain into left arm with any upright activity, and sometimes lying down too. If this is all or even partially autonomic, it would be great to have an integrated plan.

Oy.

And of course, I'm now fighting a cold, with the lack of sleep from stress and monster doses of steroids.

[Sophia3]

YIKES!! What a day.

My word....I have no comforting words for you as you lie in limbo for the next step.

but thanks for taking the energy to compose these words and fill us in. Sorry they are so NOT getting the gravity/autonomic stuff....I would say more but my post would get deleted for bad words.

Hang in there and good luck.

Sending some healing thoughts and a generic prayer.

And some cyber comfort food..your choice.

Soph

[Randi Free]

Pulse ox which is low can cause tachycardia but I don't think tachycardia causes low blood oxygen. I have a pulse oxometer at home and we check my duaghter often because it gives an accurate heart rate. her pulse ox is always about 97 and we live at 7000 feet elevation so it will run a little low.

[mkoven]

Excellent news. I had the cath this morning, and apparently my coronary arteries are "excellent." The doc saw a slight dilation of the aorta, which I guess is common in eds, but nothing worrisome, and not a likely cause of symptoms. So it looks like dysautonomia wins the day as an explanation for my heart-attack-like symptoms. And my adenosine thallium test was therefore a false positive. Huge relief.

But I still have bad symptoms that need a better plan-- we just know it's not heart disease. They're going to try to send someone to talk to me tomorrrow about other treatments for autonomic problems. But it's not clear that that is wnat this hospital does.

So good news overall. I just need some better ans treatments, because I'm still kind of a wreck.

The allergies were kept to a dull roar with my massive steroid prep. My guess is I might have a bit of a crash, as they are not tapering me, just stopping them cold turkey.

I'll probably get discharged tomorrow. Hopefully though with a better ans plan?

Thanks again you guys for all your encouragement!

[Megan]

I'm so glad that SOMETHING went well for you!

Meg

[ajw4790]

Hi,

I am glad it sounds like overall things are going well! Hopefully you will be DC'd today and with some instructions and things to try to help out your symptoms.

Hope everything continues in a positive direction!

[mkoven]

Still in the hospital. The morning team of cardiologists said i have pots and need a beta-blocker. I was then examined by 2 rehab doctors who look at autonomic disorders in spinal cord injuries-- who weren't sure they could help me. I then saw an ep who doesn't know much about dysaut, and says I will probably be sent elsewhere to an ans center. He said one can't have pots and ncs. It

s one or the other That didn't seem right. He also says he never combines florinef and midodrine. i guess I'm not at an ans center....

[Sophia3]

Glad you have the cath behind you and things are fine there.

Sigh...sorry the ans doc does NOT KNOW POTS and other things can overlap.

Here's to finding an autonomic doctor in your area soon.

[MightyMouse]

Michele, I'm confused...I thought that your allergy docs already said that you can't be given beta blockers? Oy vey.

As for not being able to have POTS and NCS, that doc is wrong.

Nina

[mkoven]

It's all confusing. IT seems that only allergists know that beta-blockers and anaphylaxis don't mix well. I guess the plan is to use the fact that I'm inpatient to get more leverage for a prompt referral to an ans center. My spouse really doesn't want me discharged, but , because he doesn't feel he can manage me at my current level. I don't know what to think. The hospital is no fun, for sure. It's also true that we're coming up on a long weekend, where I would just be sort of pointlessly parked here if there's nothing more they can do for me. My question is whether I'm safe to go home. If I still get chest pain into my left arm, short of breath with activity, but I've had a clean cath, does that mean I can blow off those symptoms as insignificant/ not dangerous? I just don't want to keep wondering when to go to the er?

[momofsara]

Just adding my 2 cents..... You have my best thoughts coming your way today. It is certainly frustrating being in hospital. Sara ends up being for a week or more about every three months, with several er visits in between. And you do have to be your own advocate, or if you dont feel up to that, have someone do it for you. Im very glad your husband is supportive, that really helps a bad situation. Medical people sometimes get off track on your treatment and the paient knows their own body and what feels "right" and we have learned by experience, to YELL if things dont feel right. Sara finds her portable DVD player and funny movies help some, also I read to her (usually from the Bible) It is most definitely stressful to be afflicted with all the stuff you have to go through, and having support from family is vital. I'll be praying for you and anxious to hear that you are feeling better and home from the hospital. (((((((hugs)))))) Susan