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

Withdrawals From Actiq…..3 Weeks Later….For CRPS/Systemic


“Why give up everything for one thing when you can give up one thing for everything”……Unknown

Hello Luvs,

Wow…it has now been 3 weeks (*tomorrow….On Monday, Aug 3, 2015), since I went  from 5 Fentanyl “Actiq” Lollipops per day (Plus the long lasting Fentanyl patch that I still continue to wear and to change every 48 hours), to zero Actiq lollipops for Breakthrough pain per day. I went to bed on the 12th of July taking my last “sucker” for pain and I woke up being unable, not allowed  to take another. The first day wasn’t as bad as I thought it would be. I am suspecting that was because I still had residuals left in my system.  By the end of the first night, I started feeling pretty ill. The second day was wasn’t so bad and the 3,4th, and 5th days were the worst.  I can tell you that it feels like the very worst flu that I’ve ever had. It includes: vomiting, diarrhea, chills, awful sweats and all I wanted to do was lay on my couch, bed or “Lazy Boy” chair. I am sometimes hungry, but when I eat, my stomach hurts. I feel bloated and nothing sounds good to eat and even drinking doesn’t sound good. I used to love my hot tea, my coffee and diet pepsi and none of that even sounds good to me now.  Nothing is the same and now it’s been 3 weeks!

We called the Dr. about 5 days into this and told him how awful I’d been feeling. I did a lot of research, went onto forums for withdrawals and such. I found out that there are a few different meds that can help through the hardest days at the beginning especially. The first one is a blood pressure medication called “Catapres” also called “Clonodine”. There is an anti-anxiey /anti-panic attack type of drug called “Klonopin” that can also help with the withdrawal and flu-like symptoms. Then another thing that can help are the medications that are for anxiety, such as: Ativan, Xanax or even Valium. You don’t need to take them for a long time but just long enough to help you through a hard time. If you find yourself in this kind of situation, please research online forums, use “google” to look up information on withdrawals and then check out “You Tube” videos online about withdrawals too!  My Dr. gave me the Catapress and I took it for about 2 weeks and it helped very much with the symptoms of chills, sweats etc. That is driving me crazy! The chills and sweats are getting lesser and less often but the knee dropping fatigue just won’t stop!

So now I’m actually finishing the 3rd week of not taking the one thing that actually worked for my pain.  The Fentanyl Lollipops helped me and though I never should’ve been given the large amount that Dr. Bullach had given me, I felt so much better when I was down and got myself down to the FDA approved amount. I don’t understand  at all why I have to go through the pain of the withdrawals from something that helped my pain the most and did not upset my GI tract. I now remember and cannot believe that I didn’t remember when the pain Dr. asked me “do you have stomach issues? Why are you taking the lollipops in the first place?” I told him that I didn’t have issues with my stomach and due to my MTBI I forget certain things. I remember now that Dr. Bullach had written a “book” for the Insurance company about me and why I needed to take Actiq losenges or lollipops because of the numerous different meds that I tried with horrible GI side effects or allergic reactions. I had forgotten all about that until I started taking Dilauded on a daily basis. It’s ripping up my stomach!

It’s been 3 weeks and I cry often and feel very depressed. I’m not ever very hungry and I’ve not lost any weight! How crazy is that? I feel nauseous and my stomach down in my lower intestines, feels bloated and hurts every time I eat something! Nothing sounds good and nothing much tastes very good. I’m going to the pain Dr. this week and I need to talk to him and tell him everything. But I just really don’t want to try a bunch of other medications that might make my stomach worse or have even worse side effects. The one side effect that I cannot handle is “weight gain”. I already feel much to heavy now and I cannot afford to gain an ounce. I used to have Anorexia since I was about 13 yrs old and I fought in on and off until I was in that car accident . I will only say one thing about the eating disorder, and that happened because of things ….no….”Abuse” that happened in my home growing up. My kidneys and tubules from my kidneys are too small according to the Ultrasound that the Nephrologist did several years ago following my episode of acute renal failure in 1994. I’ve been on SSDI for Chronic Kidney Disease Stage II and Complex PTSD. To make a very long story, very very short, my heart and my kidneys have medical issues due to me being starved and poisoned with syrup of Ipecac during my childhood. I have seen my pediatrician records, shot records etc.; my dad gave them to me after my mom died and I don’t think he knew what they said!  They are written all over by the pediatrician. It says “Feed this baby”!  “This baby is Anemic! Give her Iron”….then the Dr. wrote some instructions with names of baby foods and formulas with iron etc. So ….lastly, regarding this subject, I do have stomach issues and when I was terribly Anemic in 1999, 2000, 2001; I had 3 blood transfusions!!! They didn’t work and the Hemoglobin was at 8. when I had the last one! So I visited a Hematologist and he gave me an IV infusion of something that helped and my Anemia has been much better since 2002!!!

Since that awful car accident on 8-11-02, and all of the chronic intractable pain, the surgeries and the horrible pain following the surgeries; I just didn’t care anymore about how much I weighed. The numbers didn’t matter any longer! I needed to eat to help myself feel less pain, take medications to help with the ongoing pain following that accident.!!! I slowly started gaining weight as at the time of the MVA, I only weighed about 90 pounds and I am 5’5” tall! Slowly I allowed myself the nourishment to “fix” or help “fix” my pained and broken body. I’ve gotten up to about 145 lbs now and to me, that is too much. For a long time I didn’t weigh myself because as long as I could wear a size 6, I felt OK with myself. I can still wear a “misses” size 6 in relaxed jeans but I feel very big now because I need to use a cane, a wheelchair at times and even a walker. I don’t exercise because I get out of breath and in too much pain and am unable to do much of anything. The CRPS started in 2007 in my right foot following a surgery. It spread to both feet and my knees as well. Now it is full body  “systemic” and I cannot even walk more than just a few minutes, like 20 minutes I suppose. Some days a little more and other days a little less. I’m trying not to worry about that, the “numbers” game, but it’s really scaring me because for the past 3 weeks now, I’ve had a very hard time eating anything much at all and I have not lost but 3 pounds. My Lymphedema in my left arm from the CRPS on my whole left side internally, doesn’t help with that because I get a lot of edema! My feet, legs and arms swell. I’m pretty much miserable!

I didn’t mean to go there. I wasn’t planning on talking about the Anorexia. But I am proud of myself for a few reasons. I have cured myself of the Anorexia (although I will always have the food fears and I will always have the distorted body image and thoughts that go with it all. But I will not ever be acting on those fears and thoughts again, for life and death reasons because I love my husband, kids and grandkids much more than I care about those numbers! I always did but I felt too “out of control” and controlled by my fears of food way back when!

Ok… back to these past few weeks…..this has been the hardest or one of the top few hardest things that I’ve ever done. I asked the Dr. who took over for Dr. Bullach,(**and got me through by prescribing lower and lower doses of the meds that would’ve and could’ve killed me if he had not done that for me) if he was “proud of me” for stopping the Fentanyl lollipops?  I asked him also if he liked the letter that I wrote to him, Dr. Bullach and Dr. Dobritt, the old pain Dr.?  He smiled and said that his Office employees were impressed and he left it at that. I could see it in his face and his eyes. His demeanor was very different this past visit, with my being off of that prescription now  and him not having to write it for me any longer. He is relieved and I do feel that he is very happy for me and proud of me. That shouldn’t really matter to me but it does make me feel good that I did and am doing and have done something very very difficult that even some of the strongest willed people might not have been able to do!! But I’ve done it and i’m doing it!!

After having said all that I’ve said, now I’d like to really say that I’ve been going through “HELL” this past 3 weeks. I don’t want to live like this with my stomach feeling all ripped up. My headaches and neck aches, which are in the back of my head and neck, most likely from the “Chiari I malformation”, have been a daily occurrence and they aren’t going away! I was off of  my Ativan for a year and now I’m back on that several time daily to help with the Dilauded side effects.  I could take the Dilauded when it was just an “emergency” medication that I used to keep out of the E.R. or it was used following surgeries. You must remember that I also had my “suckers” at that or during those times as well. My husband has had to set his alarm for 6:00 am each morning to get up and get me a Dilauded and an Ativan , just so that I am able to get out of bed an hour or two later! I used to take a Fentanyl Lollipop which was waiting in my bedside table drawer. I could open it, take it and lay in bed for about 1/2 hour and then I was able to get up. Now I have to plan it like a 2 hour ordeal. If we forget then we or I cannot even get out of bed. I do have GI issues obviously from all that my stomach has been through. Im actually surprised its not worse. I do have to have Colonoscopies every 5 years also, because of my mom’s death from colon cancer in Dec 2002. For some reason, the lollipops don’t upset my stomach or bother me in any way. I have had no side effects! I’ve honestly tried so many other pain meds that all had terrible side effects and worse! I don’t think I’ll be able to go back on the lollipops now! I’m not sure I would if I could, now that I’ve gone through the withdrawals and illness that goes with that.!! I honestly don’t know what to ask for or try? I did have something called Kadian (*extended slow release Morphine) that worked for a few or 2 years and suddenly stopped working for me. I also have something called “LONG QT syndrome”, which affects my heart and there are hundreds of meds that I cannot have due to this condition, that has only one symptom; which is “sudden cardiac death”.

Now I’m going to share with you, some research that I got from some of the websites that are the companies that make these Fentanyl lollipops called “Actiq”. I also want to share that many people have lost and do lose their teeth because of these lollipops with 8 grams of sugar in each one. The way that you get the medication to work is by placing the lollipop between my gum and my cheek. You have to pretty much keep it there twirling it loosly for 15 minutes in order to get the appropriate amount of medication. My Dentist was wonderful and thought ahead for my safety and comfort. He made special trays that molded to my teeth. I then put a flouride paste into these trays, put them into my mouth, covering all of my teeth for about 5 minutes several times per week! I had only one or two cavities since 2005, when I actually started the suckers. They were very old and needed new fillings. I tried hard to take every precaution.

I honestly don’t see why I had to have something taken from me that I was being very responsible with and doing very well with while taking them??? I only always followed my physician’s rules and advice! These past 3 years I had asked him several times if he would “help me go down off of them and take less”. He always told me that “Suzanne, I got you out of that hospital bed in the living room! I got you to be able to get up, go out sometimes and have a bit more of a life!” He was right, so I stopped bothering him. He told me to “trust him” and so I did. Here are a few of the things that I found on the website for the Fentanyl “Actiq” Lolllipops for BT pain:   “Actiq achieved off-label status as a powerful pain reliever (80-100 times more potent than morphine) and is used to treat migraine headaches, severe back pain, cluster headaches, bone pain, arthritis, neuropathies, and other situations of severe chronic non-cancer pain.”  Also, I read that “It can legally be prescribed for off-label used but cannot be marked as such.  As much as 80% of the prescriptions for Actiq each year are written for off-label use for sufferers of NON-CANCER,Chronic pain.  Soooo, then ….if I was doing so much better and had a much more happy existence with less pain because no stomach issues and honestly …less pain!!??? Why , then??? Why can I not have my life back? Its not any more dangerous it just cannot be! I don’t  understand because Fentanyl is Fentanyl and how is less of that any better for me, than Dillauded ripping up my stomach whilst my head and neck,…..arms, legs and feet feel “on Fire” along with burning nerve pain! I’m so fatigued, that I can only do something for about one hour maybe two and I’m down for the count! The rest of the day is in bed or in my “Lazy Boy” chair or on the couch!…

Well, I’ll give Dr Bullach that one…he got me “out of that hospital bed in the living room and out doing more stuff” while in the meantime giving me much too much medication … I have said before, I’m a lay person and I had no idea !! I wish I’d never taken any of it….I ‘ve never smoked, drank nor have I ever done any drug of any kind…At first, after the car accident, when I went to my 1st pain Dr  for 3 yrs…they’d get upset with me because I wasn’t taking the amount prescribed but was taking LESS….I cannot win….I never have taken more than prescribed either….well, we will see what happens huh? I’ll keep you posted…I have another pain Dr. appt this week on the 6th….Thank you for following ….and we will be on to a new subject very soon…If you want to read back on any of my old posts…one of the pretty good ones is “Illness Doesn’t Equal Lack of Faith”…’s a good one if I do say so myself….check it out if you wish….I’ll be writing soon again…not so long this time…My youngest daughter is moving with her hubby to Boise Idaho this week…give me strength. This is going to be so very hard…I miss her already….UGGH Why does life have to be this hard??? lots of love, Suzanne