Things Go From Bad To Worse

[Rene S.]

Hope everyone is doing well. I've had the week from you know what. It started last Sat. with extreme shortness of breathe, dizziness and I actually passed out. Enter the ER on a holiday weekend. Ok, draw the typical blood work and throw in another D-dimer. Well, it's high. Grr. Since I was complaining of shortness of breath and pain when inhaling in comes the wonderful VQ scan. Of course, it's read as being moderate probability for small pulmonary emboll. Kept me over night, no monitoring no cardiologist or pulmonologist. 4pm the next day, house dr. breezes in and says you are discharged I don't think it's anything. Go home. Still feel like you know what.

Tuesday seek pulmonologist. Had report. He's not impressed. Says if it gets worse, go to ER. Great. Seek another pulmonologist yesterday. Make it to his office, barely able to breath and he takes one look at me and sends me directly over to the hospital. Immediately started heparin. This time no VQ scan but it's the big guns. CT Angiogram. Morgan, this is where you come in! If you remember last month I had a cardiac cath but needed to be premedicated to due anaphalaxis with contrast dye. But that was done over the course of a 1 1/2 days with 40 mg of prednisone 3 times and pepcid and bendryl during the cath.. Yesterday, they did what they call the emergency prep. 125mg of Solu Medrol plus 50mg of benadryl. I'm freaking out. They also gave me an added dose of beta blocker, which I thought was a no-no but the dr. wouldn't llsten. Ok, I'm drugged heart racing and now down to the CAT scan. inject dye. Just can't swallow. Can breath, but no swallowing. Since it was done late in the evening, they keep me overnight.

Slept ok I guess it was the benadryl.

Today, anxiety is skyhigh. I was pacing the halls at the hospital. My heart rate and b/p were elevated. The admitting physician (a woman no less and one who should understand) has a psych. come in because I'm so darn anxious. He knew right away it was probably from the steroids. Offers me more klonopin. Does nothing.

5pm the admitting physician comes in and says that if I don't get my anxiety under control that my life will be ruined. I'm arguing with her (having a spliting headache to boot) that the anxiety is caused from the steroids and that I'm never this bad. Also I notice a lovely sunburn on my face but I've not been in the sun. Dye allergy?

My question = Morgan do they usually push 125mg of Solu Medrol and 50 of benadryl? Can it make you anxious, heart racing, increase blood pressure? How long do the side effects last? I'm speeding away and no sleep in sight for me tonight!

Anyone else have this experience? I guess it's safe to continue on my beta blocker?

Oh, outcome - lung inflamation. Not sure, but could be beta blockers? I've been coughing all week more than usual and I know that betas can cause a cough??? Who knows maybe I'm just one of the people who can't take the bbs.

Any insight would be appreciated or if you have similiar stories to share. Grrrr. I hate doctors!!!!!!!!!!!!!!!!!!! Do they not read drug reactions? Even one of the nurses commented on how steroids can make you crazy.

Rene

[potsgirl]

Hi Rene,

I'm so sorry that I don't have any answers for you - just support. You seem to not be able to catch a break, and I wish for you a couple of wonderful and peaceful days. I also wish I could have been there with you, holding your hand and being an advocate for you for those docs that just forge ahead without giving much thought to what drugs they're giving you.

Rest well, my friend. I'm thinking of you.

Jana

[Rene S.]

Thanks, Jana,

You are so sweet and caring. It's ashame that drs can't be that way! Thanks for your support. I truly mean it.

I hope things are well with you.

Take care and we'll talk soon.

Hugs,

Rene

[EarthMother]

"5pm the admitting physician comes in and says that if I don't get my anxiety under control that my life will be ruined."

Really "Doctor" (make air quotes they love that) do you think so? I'd love the name of that book you read that came to that brilliant conclusion. Or was it written on the teabag you used this morning?

Grrrrrrr. In my mind I picture someone overboard in the ocean admist a raging storm, and another person on deck yelling down to them "Hey, if you don't stop that drowning thing your life will be over."

There simply is no "scared straight" tactic that works for systemic anxiety caused by an illness or reaction to meds. I'm so sorry you have to go through this. Hang in there ... you are doing an amazing job.

[flop]

Hi Rene,

I guess they had to give you the high dose steroids to prevent an allergic reaction. Unfortunately steroids do cause both insommnia and anxiety/aggitation/hyperactivity sometimes it is called "steroid induced mania". Steroids really can mess with your emotions and can make you depressed, euphoric or aggressive. I think that the symptoms usually gradually calm down over a few days.

Hang on in there,

Flop

[MightyMouse]

Hey there neighbor, sorry to say your experience is par for the course of what I experienced during my days before diagnosis in the same local area. I got labeled as an attention seeking patient who refused treatment for depression. Finally, I went and got a psychiatric eval b/c I thought, after being beaten down by docs for several years, "maybe I really am crazy and doing this to myself?". He was awesome... he wrote in my report that I was clearly physically ill, and that if I had any depression or anxiety, it would likely resolve once my physical problems were treated. I was so grateful to hear that and to know someone, other than Teri, believed me when I said "I'm not depressed, I'm just frustrated and tired."

I feel for you. Also, solumedrol will really mess with your emotional state--and your sense of hunger too. I'm an aggitated, cranky, ravenous nutcase when I'm on that stuff.

Nina

[Broken_Shell]

Hi Rene,

Not up to typing right now, but sending HUGS and lots of prayers and support. The steroids can definately push anxiety through the roof. Hang in there as best you can! We are all here caring about you.

~ Michelle

[tinkerbella]

Dear Sweet Rene,

OH SWEETHEART, i wish i could give a great big hug right now as I can relate completely. All of the above is true as in the advice everyone has given you. I really dislike the ER for the reason they never understand and forget it if it's a week end. I'm labeled as a hyperventilater when I can't breathe, and of course you know they think they know everything. I'm allergic to the dyes also. Predisone makes me high feel great or feel so anxious the next moment as it screws you all up.

It also is crazy when they tell you that the bb can't make you cough because it can. My kid's called me, "typhoid Nannie," as I could not breathe and kept coughing. I was short of breath and I didn't know I had pots yet. My doctor PC said she was sorry that she hadn't seen the signs sooner. I was also getting little bumps on my fingers and elbows which were execma another sign of an allergic reaction. had to go one the predisone pack, nebulizer 3 times a day, what a night mare.

Rene another thing you need to look at is your brother just passed away your grieving and all of this is also taking is taking it's tole on your body emotionally. You have a lot on your plate and underneath all of this there may be a bigger issue of being worried of what happened to him is going to happen to you. Sometimes we can get ourselves so worked up we can make our selfs sicker. I'm trying really hard in the past year not to go down that road any more and live my life in, "No Fear." I learned this from my neighbor's little girl when she was just two. Her Mom brought her and her dog to my back yard and my dog was a jumper( stil la pup) and I was training him to stay down as I had recently adopted him. He's a small dog but like a German Shepard to a small toddler.

Rene, this little friend of mine walked in my back yard with my dog nearly knocking her over like a bolt of lighting and out of her little mouth she said, "No Fear." She said it over and over again and I asked her mom did I hear her say no fear? Her mom said yes it's from Timothy in the Bible, where he teaches us not to live our life in fear. Something changed in me that day Rene. Do I still worry, of course I'm a mother but now I have more Faith and I hand more things over to God. When that crazy feeling starts I say, No Fear and think of the little girl in my back yard who taught me a lesson to let go and let God.

I hope this little story can help you start to live in No Fear Rene. We have only so much precious planet time left. I'm trying to do as many things I love with this challenged body of mine. It's not easy, but we are all here for you sweetheart. I know you are going to be alright . Please know this too shall pass. I will say some prayers that you find some peace and your body calms itself down. take care my friend.

may blessings rain on your parade~

BellaMia~

[ramakentesh]

even florinef made me anxious at a minute dosage... no surprises - we dont follow the normal rules...

[mkoven]

I was given 3 80mg doses of solumedrol in a 24 hour period before my cath. It makes me less nutty than prednisone, but it still feels like a whole lotta adrenaline coursing through your veins. I remember when the nurse was pushing it in the iv, I felt like I was literally having panic injected into me. Pretty awful stuff. I crashed the next day, and took another couple days till I was back to normal. It played with my blood sugar and gave me blurry vision for a couple days and even made some old scars start to open up--with its tissue weakening properties. Muscle aches and tachycardic too. But it did pass.

Sorry for the ignorant doctors. It's infuriating.

[Rene S.]

I was given 3 80mg doses of solumedrol in a 24 hour period before my cath. It makes me less nutty than prednisone, but it still feels like a whole lotta adrenaline coursing through your veins. I remember when the nurse was pushing it in the iv, I felt like I was literally having panic injected into me. Pretty awful stuff. I crashed the next day, and took another couple days till I was back to normal. It played with my blood sugar and gave me blurry vision for a couple days and even made some old scars start to open up--with its tissue weakening properties. Muscle aches and tachycardic too. But it did pass.

Sorry for the ignorant doctors. It's infuriating.

Thanks! I know we had this discussion before when I had the cath but that was over a 24 hour period and it was prednisone. This I think was worse. I can't believe you mentioned the blurry vision! I can't seem to get my eyes to focus not to mention my heart rate and b/p is still elevated. My body feels like it's been run over once again by a mack truck! my heart took off as soon as they pushed that into the iv plus the benadryl!

What would be symptoms of blood sugar problems?

Thanks again for your response.

You guys are great!

Rene

[Rene S.]

Thanks Jana. It's so nice to know that I always have your support and understanding. Everyone on the boards have been so nice and kind. It's ashame that the drs can't be the same.

Hugs,

Rene

[Rene S.]

"5pm the admitting physician comes in and says that if I don't get my anxiety under control that my life will be ruined."

Really "Doctor" (make air quotes they love that) do you think so? I'd love the name of that book you read that came to that brilliant conclusion. Or was it written on the teabag you used this morning?

Grrrrrrr. In my mind I picture someone overboard in the ocean admist a raging storm, and another person on deck yelling down to them "Hey, if you don't stop that drowning thing your life will be over."

There simply is no "scared straight" tactic that works for systemic anxiety caused by an illness or reaction to meds. I'm so sorry you have to go through this. Hang in there ... you are doing an amazing job.

Thanks, Nan!

You are truly a remarkable woman. How I wish I had you by my side when I was read the riot act over the way I was behaving. Maybe if I had a syringe with 125 mg of solu medrol I could have shoved it you know where on the dr and then given her tons of benadryl plus a klonopin and a beta blocker. SEe how she would fare.

Rene

[Rene S.]

Thanks, Flop. Yes, I was manic, hyper, anxiety ridden and depressed. I thought I was going to come out of my skin. Today is 3 days later and I still am not back to feeling right. Is it because our systems are so sensitive? All of those drugs at one time no less!

Thanks for writing.

Rene

[Rene S.]

Hey there neighbor, sorry to say your experience is par for the course of what I experienced during my days before diagnosis in the same local area. I got labeled as an attention seeking patient who refused treatment for depression. Finally, I went and got a psychiatric eval b/c I thought, after being beaten down by docs for several years, "maybe I really am crazy and doing this to myself?". He was awesome... he wrote in my report that I was clearly physically ill, and that if I had any depression or anxiety, it would likely resolve once my physical problems were treated. I was so grateful to hear that and to know someone, other than Teri, believed me when I said "I'm not depressed, I'm just frustrated and tired."

I feel for you. Also, solumedrol will really mess with your emotional state--and your sense of hunger too. I'm an aggitated, cranky, ravenous nutcase when I'm on that stuff.

Nina

Hey Nina,

Where do you live?? I know you're not too far from me. Anyway you are right. They labeled me as a distressed, anxiety ridden depressed woman with no purpose except to disrupt their quiet hospital. And the nurses almost gave me double the amt. I still can hear and remembered the dr. saying 125mg of the steroid and they wanted to give me 250 and the benadryl after the test! Now what good would that have done????????

The only good thing to come from the steroid was an appetite which I haven't had in ages!

Glad that Teri is there for you. I have no one that will believe in this condition. Many of my friends have gone the wayside. This is life.

I'm just trying to figure out how long this shmutz will stay in my body. They say it leaves quickly, but then again they don't know me!

Rene

[mkoven]

I think I was given daily blood tests and somewhat elevated glucose came up-- nothing scary-- I think the highest was 145 fasting, but not normal. Even though I have a family history of diabetes, I'm usually normal (75-95 fasting) and my tolerance test was fine. But on steroids, I"ms tarving, and feel like the only thing that will hold me is straight protein. blurry vision can be a sign of high blood sugar--but not necessarily. My fasting blood sugar remained a little elevated for several days. the steroids also temporarily did something to my white blood cell count. everything returned to normal, but steroids are really drugs I try to avoid. Fortunately for me, I don't react badly to florinef.

[Rene S.]

Bella, you are a doll filled with infinite wisdom. What a caring soul you are. Thank you a thousand times for your concern.

I have been through **** and back and losing my brother was the tip of the iceberg. I did have a major cry last night thinking that wow I'm no longer the middle child. The tears were endless.

I hope nothing but the best for you as well. You are too kind for words.

Thank you.

Hugs,

Rene

[Rene S.]

Thanks Michelle. I do appreciate your kindness and support.

Lots of hugs,

Rene

[MightyMouse]

Hey there Rene, I'm just over the BBB bridge, but I'm in Southampton pretty much daily b/c I'm assigned to that district (Centennial) as well as to Bensalem. We looked at buying a house right off of Davidson Road... and another one off of Gravel Hill... but our house didn't sell as the market crashed two weeks after we were listed. We may try again in the future, but for now, we'll stay on the other side of the Delaware.

Yes, I feel very lucky to have support at home. I know for a fact that without it, I'd not be working any longer, among other things. I really feel for those of you who are "going it alone".

Nina

[Rene S.]

Nina, I'm right off of Gravel Hill Road in Huntingdon Brook. Moved here after my divorce, but was 5 mins away between County line and Street off of New Rd.

Small world. Are you a teacher? My girls went to Tennant prior to that Klinger and Stackpole.

Yes, you are so lucky having someone in your life. I hate being alone. Well, I have two cats but they won't be able to help in time of need.

Love for you to stop by sometime!

Rene

[MightyMouse]

We were looking to move into Bryn Gweled, which is the Quaker homestead on the corner of Gravel Hill & Street Rd (for those not from our area, yes we really do have a road called Street Road... still makes me laugh when I see it). We've actually gotten halfway through the membership process at BG--but we want our house to sell before we go further. One of the reasons we liked it there was the community takes care of their members who are ill or elderly; Teri often worries that if I'm home alone and I become ill, that we don't have anyone close by to help me.

No, not a teacher--I'm a behavior analyst, and my area has been autism for the past 23 years. Most of my students are between the ages of 5 and 12 and all of them are in public programs. Keeps me busy and each day is so different from the one before that I can't really get bored.

LMK if you find any good doctors in the area. I haven't, other than my EP cardiologist, who is at Univ of Penn at the 8th and Spruce complex; and my Gastro, who is in Makefield. I have a good GP, ENT and GYN but they are all here in NJ. Actually, I think the GYN has an office in Langhorne too. I had a neuro who I used to think was really good, but he really let me down last year and I've since left his practice.

[Rene S.]

We were looking to move into Bryn Gweled, which is the Quaker homestead on the corner of Gravel Hill & Street Rd (for those not from our area, yes we really do have a road called Street Road... still makes me laugh when I see it). We've actually gotten halfway through the membership process at BG--but we want our house to sell before we go further. One of the reasons we liked it there was the community takes care of their members who are ill or elderly; Teri often worries that if I'm home alone and I become ill, that we don't have anyone close by to help me.

No, not a teacher--I'm a behavior analyst, and my area has been autism for the past 23 years. Most of my students are between the ages of 5 and 12 and all of them are in public programs. Keeps me busy and each day is so different from the one before that I can't really get bored.

LMK if you find any good doctors in the area. I haven't, other than my EP cardiologist, who is at Univ of Penn at the 8th and Spruce complex; and my Gastro, who is in Makefield. I have a good GP, ENT and GYN but they are all here in NJ. Actually, I think the GYN has an office in Langhorne too. I had a neuro who I used to think was really good, but he really let me down last year and I've since left his practice.

Nina,

Bryn Gweled is right across the street from me. It's on the same side as trowbridge, right? Small world. It's great that they take care of one another in sickness or old age. Here, people pretty much stick to themselves. Not always a good thing. My former house we all moved into the development together so we all kept eyes on one another. I miss that.

I've had it with drs. Can't find a good primary. I did have one until I got "sick" and she didn't know how to treat it.

Have you found a decent endo? I love my gyno but only see her once a year. I've been to a few EP cardios not impressed. The last one I went to was on Thurs and he didn't even take an EKG!

Well, I hope we become neighbors in the near future.

Nina, do you go to the schools or to the homes? I think what you do should be commended. It takes a special person....