The Cardiac Catheterization From Hell!


part of the floral arrangement that was delivered to my home afterwards from my dear friend and “sissy”

the note on the floral arrangement…this meant everything to me!

Hello Luvs,

Awhile back I’d had a Cardiac Cathetarization done; or “Cardiac Cath”. It was August 30, 2011.  I had visited my Cardiologist, the one who’d known me since 1991. He told me that he saw some suspicious “stuff” in my stress test from the week prior and he wanted me to have a Cath done. I was really scared because he told me that HE wouldn’t be doing the procedure, but his ‘new young Dr friend” that he just hired to work with him, was going to do it. I told him how I’m a ver difficult and/or “special” case with the chronic pain, RSD/CRPS and all of the issues I have. Also, my cholesterol was always at 170 and never went up but this time when he did the test, it was about 204 or something like that? Frankly, I was not totally “freaked out ” by 204!! But for some reason he was??

Well let me tell you about my procedure and I’ll try and post a little video if possible so you can get a glimpse of how the procedure is supposed to go. First of all, when I was in the pre-op room, on a gurney; the nurses were GOOGLING “RSD” and “CRPS”. They had no idea what it is! Then Dr. Trevax (sp?) came in and HE also had no idea what that “painful nerve disease” is that I was trying to talk to him about prior to my procedure!! He started to GOOGLE CRPS/RSD too!! Can you even believe this in the Century that we are in? He was a very young looking “new” Dr so he should’ve known about it as it should’ve been fresh from Medical School! He giggled and talked with me as if nothing was going on and I was there for a “good time” or something. I tried to explain to him /them that I was on quite a bit of Fentanyl for my chronic pain/nerve pain issues and my CRPS, along with the other pain issues. I now know for a fact that it went into one ear and out of the other!

My procedure was a bit different right from the beginning because #1: there was no anesthesiologist to be found anyplace in, around or near the O.R. that I was in! #2: I was not “out” or even a bit “drowsy” nor “sleepy” in any way, shape or form!!!  In fact, I was very much awake and it was like a nightmare from hell being strapped down to a a gurney, unable to move at all and the whole time nobody could hear my screams!  I felt totally “out of control while they were not paying any attention to what I was telling them. They were talking and joking around and I lay there wide awake and not even in the least bit of a “twilight” sleep or anything!! I started to scream uncontrollably saying “I can feel this!!!…I’m not asleep!! I’m not even drowsy! ….Hey…I’m still awake and I can FEEL everything!”  It was horrible and I already suffer from PTSD and that did not help my fears or anxiety levels at all! I also suffer, as I’ve mentioned, from the horrible neuro-autoimmune disease, which is very painful. It feels as though I am “on fire” and as if someone has poured “gasoline” on to me and I feel like I’m going to spontaneously combust or blow up or go “poof” in flames, I’m just so burning up hot so much of the time!

I begged and begged for them to put the catheter up through my groin area because I knew if they did it in my arm/hand, that would cause much more spread and problems for the pain disease, CRPS/RSD. I begged and once again, I was not listened to at all. The Dr decided that it’d be easier for him and he THOUGHT I’d heal faster if they put it into my right wrist. Well NOT true! He was wrong and it was HELL for a long few weeks. Not only was I having to recover from the pain of the needles, Catheter and scope or whatever they use all going through and invading my body and bothering my nerves so as to upset my RSD/CRPS so that I would then have to flare up and suffer for a couple of weeks or longer.!!  I ended up with painful swelling, bruises, redness and extra horrible pain from not only the pokes and shots etc. but from the catheter site. They continued on choosing not to listen to me and they went in through my wrist instead.  I was not asleep, nor was I even drowsy in the least!! I continued yelling to them that “I’m awake!!”…”I’m not asleep, can you tell??” …”It is hurting me terribly and it hurts like Hell, please stop and let me be somewhat “out of it”..” I just kept trying to tell them and in the background all I could hear was the young Dr. Trevax saying “1 mg Versed, or 1mg Dilauded” and he said it several times but nothing was happening to me. Maybe I was so afraid that I wasn’t allowing the medicine to work?? All I know is that I did NOT want to be awake for that test and I was totally and completely awake.  That is until they were wheeling me out of the door and into a “post op” room.  Then they wanted me to hurry up and go home but I fell asleep for 4 whole hours finally after they were done and they’d or someone listened to me and gave me enough to work and then I was “zonked out” for 4 hours straight!!!

I don’t think some of the little or smaller amounts of those big duty pain meds or whatever they were using with the pain meds, were working because My body had already at that time been used to the Fentanyl patch and the transbuccal Fentanyl. I don’t think anyone had seen those or heard of those transbuccal Fentanyl meds either and that’s why they didn’t listen to me. But I think it’s because my body had built up a tolerance and the small amounts that would normally work on a person of my (at the time) smaller stature, just would not work for me due to my medication regimen.  Also because of the Neurological pain, of my chronic nerve pain disease, “CRPS/RSD”, this caused their meds to not work well on me. Though had someone listened  to me and really realized how much medication that I was really taking under my Dr.’s care, they might’ve figured it out. But no way, no how was anyone listening to me that Day!

It was the Cardiac Cath from HELL!!! I would assume that this would not happen to you if you are going in for a Cardiac Catheterization.  Mostly, because they make sure that people are “out of it” in a Twilight type of sleep so they don’t have the anxiety and terror and pain that I experienced! I was just one of the Unlucky ones, I guess!

The worst part, aside from the horrible extra pain, then the 2 weeks of flares from my  CRPS; was what happened when I went back to my Gen. Cardiologist to explain to him the bad experience that I had. He just listened for a moment and then yelled at me and said very loudly “STOP IT!!”  I started to tear up and cry a bit because my normally gentle and caring Doc had just yelled at me! He yelled at me to “get over my past”! I guess he thought I was upset about the way it went because it brought up some bad memories and feelings. I was but that was not why I was telling him! I was telling him so others would not get hurt like I did.!!!

Needless to say, I’ve not been back to that Dr. and he was one of my favorites too !! From 1991 through about 2011, I guess?? I transferred all of my cardiac care over to my EPS/Autonomic Dysfunction/Pacemaker Dr or “Neuro-Cardiologist”. I decided that I wanted only one heart Dr to handle everything because of being on Blood thinners (Coumadin) and such..I liked the fact that my Neuro-Cardio office had a “Coumadin clinic” with nurses who actually called and reminded me to get my blood drawn. It made me feel more safe about taking an “unsafe” type of medication.

Well, Luvs….bye for now….this was the story of the “Cardiac Cath from Hell”…but I’m glad its over and I’m not sure when I’ll need another but my Cholesterol went from 204, when that heart doc freaked out on me to now its about 223 to 279 it has been!!! YIKES huh??? I do know that the Dr. who did the heart cath only got about 1/2 way done and finally stopped the test because I was crying and screaming so much. They did find 30% stenosis in my heart and they are saying that I do have “CAD”, but it’s not terrible yet or right now…we will see as time goes by.  I don’t eat too much bad stuff, but those Fentanyl transbuccal meds were sugar filled and bad for my teeth. Luckily for me, my dentist made me a special floride tray to use twice weekly and help with that so my teeth did not rot out!! Thank you God for that!!

Thank you for reading about my past experience in 2011, with the Cardiac Cath from Hell!! G’bye Luvs….Suzanne

   a picture of the Cath lab room!

    Here are a few pictures, to show you what I went through; though I was not drowsy in any way , shape or form…

my right RSD wrist after the cardiac cath….it hurts worse than it looks!
It hurts much more than it appears , believe me!!!!
a beautiful flower bouquet that I got from one of my very best friends…and she’s

like a “sister” to me !!

 some nice gifts I got when I was in so much pain afterwards

NOVEMBER /NERVEMBER…is RSD/CRPS Awareness MONTH


Hello friends,

I’m so sorry that you probably think that I’ve gone AWOL! LOL….NOPE…I’ve been sick and then I got better for a day and then I got sick and then better for 2 days and then worse than the first time…UGGH and GRRR!!! So…needless to say, I’ve just not felt good enough to even write a story or anything of a sort. I apologize for that, because people get sort of used to reading things that someone writes and then it’s hard when it’s suddenly seems to disappear! I promise I won’t disappear unless I have no choice…or unless it’s just like lately…when I just cannot do any writing, due to being so ill!

First off, I want to tell you about my two fundraisers for this month being “NOVEMBER IS RSD/CRPS AWARENESS MONTH”.  I have a Swarovski Crystal + awareness beads bracelet (an RSD/CRPS support bracelet that I’ve designed and created with the fire colored crystals, clear and orange along with hand painted awareness beads in clear with orange ribbon & white with orange ribbons on it) and a matching pair of RSD/CRPS awareness earrings. These two items are on Ebay auction right now  and you may be able to find them under my name “Jewelrymkr”  or under RSD/CRPS awareness jewelry. I will post the link after I’m finished here as well, as long as I can figure out how to do it…LOL …

My 2nd fundraiser, is as easy as visiting my Facebook page and checking out the pictures on my page of the stretchy orange and white bracelets. I have 5 of them and all you have to do is send in $1 for each chance to have your name in the drawing. I will put your name into the drawing 20 times if you send me 20$ and so on…. The first 5 names that my husband pulls out of the “box” or the “hat”; those 5 people will be sent a bracelet on Dec 1st and the drawing will be held at 4pm on November 30th, 2013!! If you have any questions, please don’t hesitate to ask me in the comments. If you don’t want to participate or cannot, then if you do know about RSD/CRPS, please try to tell at least one person per day during the month of November, if at all possible, please?  The reason for this part is because there is such a lack of knowledge regarding this horribly painful nerve disease. It’s also now been researched more and is known to be a “Neuro-autoimmune disease”. It is #42 on the “McGill Pain Scale”, right up there with childbirth and with amputation of a digit!  Please help me /us get the word out about Reflex Sympathetic Dystrophy, which is now mostly known as “Complex Regional Pain Disease *(used to be syndrome now it is disease, hence it is known as CRPS or CRPD).

IT is Not a new illness, as it was found in our soldiers who came back after fighting in the Civil war!  But many Doctors do not know much about it, but maybe only heard a bit about it in Medical school!  It is really sad when someone is in a specialist’s office and the Dr knows nothing about it. For example, I went to a Dr, who is an Immunologist. He sat my husband and me down in his office, not in an exam room; for what was to be my first visit.  He never even examined me or anything, but said first “So….what is this “R.D.S.”??  Umm…first of all, Doctor, it is “R.S.D.” not “R.D.S.”….Secondly, if you have to ask me what my illness is, when it affects all body systems as it spreads to “full body/systemic RSD/CRPS; then …well…let’s just say that I looked at my husband and he looked at me; we nodded at each other and we left that office!  I cannot tell you how many times I’ve had Dr’s, not even medical students…but real staff physicians; NOT know what my painful, horrible nerve disease is all about.

I’m so lucky that my G.P. is very good and knowledgeable in the variety of medical issues that I have to deal with, along with my RSD/CRPS. I have a wonderful Cardiologist, who’s a Neuro-Cardiologist; and he knows so much about it that when I had my pacemaker and heart surgery in February 2013, he researched this disease.  He and his Colleague, a Plastic surgeon, both actually researched RSD/CRPS and found that they could possibly help me with the “spreading after surgery” issue by doing an Internal “WASH” with a numbing medication called “Bipvucaine”. They’ve found that before closing up and right after a surgery on a patient with this dreadful disease, they can do this internal numbing wash with Bipvucaine and most of the time the RSD/CRPS will not spread. Normally people with this illness, are fearful of any surgery and so are their Physicians and Surgeons, because it is a known fact that any kind of Pain or “hurting” or re-injuring of the person with RSD/CRPS, the higher the chance that their illness will spread to the surgical area or to other parts of their body or even to “FULL BODY” RSD/CRPS, like I now have.

Unfortunately for me, it did not work. I was so positive and excited that it would work for me. They were so kind and so excited to try it as well. I hoped and prayed and wished for it to be true for me, that it would not continue to spread, but it did in fact spread to my upper chest, L>R and my left arm got much worse. You can see the veins right through my skin above where the pacemaker was placed and where my pectoral muscle was totally rebuilt. It had to be refurbished due to the fact that my 1st pacemaker that was placed in 2003, February; wore a hole right through the muscle and they called the plastic surgeon to come in and totally repair it. All of this didn’t help and was not expected at the start of the surgery.  Therefore, my RSD/CRPS did in fact spread and now it is considered even more “full body” than before when it was also considered “full body” as well.

I wanted to tell you something, just for your own information and so you don’t ever let this happen to you or someone that you love and care about. I wanted to tell you about my Cardiac Catheterization from HELL!  It was 2011, August, and my old Cardiologist said that my Cholesterol was 200 and he was concerned because of my chest pain and symptoms, along with the blood work itself. He decided to due a stress test and it came out “Positive”, therefore I needed to set up a Cardiac Catheterization for a day or two later.  I was on the guerney in the pre-op room, with a few nurses who were actually looking up “RSD/CRPS” on GOOGLE!! They didn’t know what it was, and I was trusting them with my heart for a procedure?? They were honestly, I promise you and kid you not, looking up the words for my disease and did not want to take my knowledge or my word for it; but they did not know what it was!! I had trusted my  Cardiologist! He promised me that this new Dr. that he hired, though new and young, he was knowledgeable and he trusted that man with my life!  He knew my history of abuse and PTSD and “battered woman’s syndrome”. He knew that I had a big fear of being “hurt”, “abused” and “not listened to and not taken seriously”.  He still trusted this “new guy” with my life!  I was not so sure. AS that procedure got started I got less and less sure!

They wheeled me into the Operating room or the “CATH LAB” where they do the Catheterizations every day.  I was awake full of pain from my lumbar and cervical herniated/bulging multiple discs. I was hurting from my already flaring RSD/CRPS that was considered “full body” by then, already. I was in agony from my knees, my shoulders, Polyneuropathy, radiculopathy, degenerative disc disease and just too much to mention now, here.  They did not seem to care! They didn’t offer me any comfort, not even words!  The Dr. was actually yelling at me because He couldn’t get me to fall asleep. You see, usually one is put to “sleep” for one of these kinds of invasive procedures. Mostly because they put a needle with a catheter attached into your groin or your wrist and through to your heart, to get a look at your clogged veins, if there are some!! I begged for the Dr to do it from my groin as it would be far less painful for me there because I had no former pain in that area and no RSD/CRPS symptoms. He did not care and he didn’t listen to me one bit! He just kept on doing what he was going to do whether I wanted him to or not. He acted as though I wasn’t even there in the same room with them.  He went in through my arm, which is always a horrible idea when someone has RSD/CRPS in their arms and legs! It flared me up for a very long time and I had a blue/purple and red, hot and swollen right wrist and arm for quite awhile.  But the worst part was that he was yelling for them to give me “1 mg of dilauded” and a very small amount of Versed (which is supposed to make you forget).  BUT DID HE NOT LOOK AT MY CHART??? Did he not see or listen to my words at all??? Did he not know that I was on more than that daily up to three times daily for pain??  The amounts of “sleep” or “twilight sleep” medications that he was putting into me, was not affecting me at all! I was already used to pain meds from the pain Dr after my auto accident in 2002.  I was not in any kind of twilight sleep or even feeling drowsy or “out of it” in any small way! I knew exactly what was going on and I was horrified that nobody was listening to me or most of all, no one was trusting what I said. That is a horrible feeling.

Finally, as I was getting wheeled OUT of the Cath Lab, I fell asleep for the next 4 hours! When I woke up ,they got me out of there quickly, and home asap!  IT was an awful and horrifying experience. I had written about it right after it happened. I wrote about it in my other blog called “You N Me And A Cuppa Tea”.  I have photo’s of  my bruised and swollen wrist/arm/hand as well. I called it “The Cardiac Cath from Hell”.  I went back to my Cardiologist’s to get the results and I told him all about what had happened. He yelled very loudly at me and he’d always usually been a kind man and good Dr….but that day he yelled loudly and said to me “STOP”!  He wouldn’t even let me finish telling him my story of what happened. I think he was upset because he knew it was bad and he didn’t want to hear it. I mean he trusted this guy, right? WELL….I GUESS NOT..because I called back a few months later and his nurse told me that the young Dr. who’d done my Catheterization, was gone and my Dr. had FIRED HIM because he “hurt” several more people after me!! What the heck???

You know…it’s like being abused by someone… because you can tell on them and nobody will listen…Such as my ex-husband, who is an EX COP!  Nobody except the “Domestic Violence Shelter” and my attorney, would actually listen and believe in me at first. I had police reports of his pushing, hitting, shoving me and pulling his many guns out on me and threatening me and our two baby girls! His nickname was “Rambo” if that gives you an idea?  But that story is for another day. For today, I will end with the fact that I just don’t understand why that Dr. had to hurt others after me, and nobody would listen to me at first? Not until it happened again and again, did someone listen and then fire him!  Same with my ex-husband! He was “friends” with the lawyers and the judges and the policemen and such. Everyone knew he was violent and a pervert, but nobody cared to help me at first. But when he went on to “hurt” another girl, got charged and found guilty by a jury of “Obscene conduct and Indecent Exposure”, he was fired quickly or “Forced to resign” exactly. He moved 1,000 miles away to the state of Maine, to get away and “Find himself” he says!  He was fired and could “NEVER be in criminal justice again, nor be out on the road again”!

So…it’s just a bit frustrating that so much has to happen before we are believed.  Sometimes its too late for us or for others, before we are believed and not taken for granted as “weak” or “weird”…etc.. Lucky for me, I have a wonderful Neuro-Cardiologist now and a great GP and a great “team” of Physicians. They are all on my side and they work with me, not against me and I feel very lucky. They now all know what RSD/CRPS is about as well.  So Let’s get more Dr’s and nurses and lay people and anyone and everyone to know what this horribly painful Neuro-autoimmune disease is all about!! Please try to learn about it this month…go to : http://www.rsdhope.org/crps  or go to http://www.freewebs.com/jewelrymkr….or go to http://www.rsdsa.org …and get informed…get involved and spread the word.  If you need support, I have a GOOGLE PLUS group in the “communities” called “BE Aware & Care”..It is an open Support group for anyone in Chronic pain or who has an “Invisible Disability”..There are so many people suffering and who do suffer when someone tells them they shouldn’t be in a Handicapped parking space because they “don’t look sick”. Well…sometimes looks are deceiving and we can be very ill and very much in pain, but look OK to the outside world. Don’t believe everything you see or don’t see and only half of what you hear!!

You can also check out my video…that I did to try and advertise awareness for November and RSD/CRPS Awareness month! It’s on You tube and it is a performance of me doing ASL or “American Sign Language” to Katy Perry’s song,”ROAR”. You can find it here:  

     …it is just showing how we have a “burning, fire-like pain” and how I will never give up or give in and I will always “ROAR” and fight to the end!!Image

Thank you and “Happy NOVEMBER IS RSD/CRPS AWARENESS MONTH”!!!

ImageImageImageawareness bracelets for RSD/CRPS…on EBay and at : http://www.freewebs.com/jewlerymkr and at tumblr.com/supportinjewelry