So I have missed two days from writing my Blog.
The first day I lost due to fear.
I have complex PTSD (CPTSD). This is due to a variety of long-term traumas, extreme trauma and long-term stress. One of the physical issues that I have problems with is having my throat touched because for several years in my 20’s I was regularly strangled. For years afterwards, I kept my hair short (my long hair was used to strangle me often), couldn’t wear anything that touched my neck and would completely shut down if my throat was touched by anybody without my being completely prepared for it.
With the help of CBT, DBT and counselling I have been able to get to the point where I have grown my hair long again, can wear clothes with high necks and have even been able to wear a choker necklace on occasion. However, I am still uncomfortable with having my throat touched.
I had an appointment first thing on Tuesday for a thyroid nodule biopsy. So Monday was spent psyching myself up for it. I knew what would be involved having had an ultrasound guided biopsy of a breast mass a few weeks ago.
I also knew that I was going to have to keep completely still during the procedure. Which is very hard for me normally but with my current breathing difficulties and the fact that they would have me lying flat, meant that I was going to have to really work on not panicking.
So I spent Monday using all the skills that I’ve learned over the years of dealing with CPTSD to be ready for the procedure.
Tuesday morning comes and I’m as ready as I can be. I arrive for the procedure and after a short wait the ultra-sound technician re-scans my throat and prepares me for the doctor. I remind her that I am allergic to latex and she switches out the instrument tray for a non-latex set.
The doctor arrives and starts the procedure. A little numbing, a small incision and he inserts the instrument that takes the samples. He wants to get 3 samples, but is concerned about bleeding so is taking his time. During the second sample, I feel my throat start to close up.
So does the doctor but he thinks I’m trying to swallow and tells me that I must remain absolutely still until he’s got the instrument back out of me. I’m starting to panic on the inside but on the outside I’m completely calm and still. The results of years of coping with CPTSD.
He finishes the procedure and initially I think that I had been over-reacting for my throat seems sort of OK. Then I sit up and start coughing and don’t stop. I use my inhaler, get the epi-pen to hand and now the staff are concerned. It’s not stopping and they realise it’s not a panic attack, it’s either an allergic reaction or severe asthma. They ask me and I indicate that it’s both so I’m rushed down to Emerg.
I have never seen so many health professionals waiting for me before. It was quite a shock! I’m wheeled into the crash room and they all move into position and move together like a well-oiled machine.
I don’t know exactly what happened for the next few minutes but was told afterwards. I was given epinephrine (the equivalent of an Epi-pen) and placed on a nebulizer which delivers medication in an aerosol form in oxygen. They placed me on a heart monitor and did an ECG as well. I was under one-on-one observation for a while. The on-call Respirologist came to see me and listens to my throat and states that its opening up nicely and they should page him if anything changes. He confirms it was an anaphylactic reaction. They think that it must have been latex. It could have been almost anything though if the RADS diagnosis from my allergist is correct, though.
Now it’s just a case of waiting for the medication to work. A few hours later and I was discharged home. Once home I removed the dressing that had been placed on my throat, following the biopsy and some of the heart monitor stickys. As you can see I’d obviously reacted to the adhesive used in the dressing and on the heart monitor stickys. Unfortunately even when the product is stated as being latex free the adhesive isn’t always considered and in this case, I’m pretty sure that the adhesive contained latex.
(Yes my shoulder/neck on the left is that swollen)
Anyway, there’s not much that I can do. Removing the cause will stop further reactions and the amount of medication I have on board should alleviate the hives fairly promptly. I shower to make sure that I have as much of my skin as possible, then eat, and sleep.
Five hours later I don’t feel so good. I’m coughing and my throat feels off again. I grab my anaphylaxis kit, use my inhalers and start monitoring myself. When I see how high my blood pressure is, even for me right now (it’s been high for weeks due to steroids) I decide that it’s time to take steps on my plan. I crate the dogs.
Kai doesn’t like me having things attached to me and tries to remove them. When I can talk clearly I can command him to ‘leave it’ and he will perfectly but I haven’t yet got this paired with a hand signal well enough to just be able to use a hand signal, so he got to stay home with a stuffed kong. He was not impressed especially when he could still hear me.
So I’m sat with the front door unlocked, dogs secured, monitoring my heart rate and oxygen levels, using my inhalers with an epi-pen at the ready.
My blood pressure goes up again. It’s now 202/133 (normal is 120/80 and for me normal is currently 160/110). This is dangerously high. My oxygen levels drop to 88% – below the 92% that is my trigger for needing to go to the hospital – and stays there. So I use text 911. Despite my being registered with the service I get a message back stating that text 911 is not available in my area!
Here’s were fibromyalgia brain fog caused problems. Rather than hanging up on my cell phone (To use text 911 you call and text simultaneously) I continued to call 911 on my cell. That meant that dispatch didn’t get an automatic address for me. I’m not even sure that they received the information from the Vulnerable Persons Registry (VPR) information that should have been available to them either.
So picture the situation – I’m gasping for every breath and literally fighting to breathe. I’m using my inhaler like water… I have a soft voice at the best of times and the 911 ambulance response can’t get my address from me as she can’t understand me and I’m ‘shouting’ it letter by letter in between gasping for breath. Eventually, she gets the volume on her phone turned up and everybody quiet at her end and has a colleague help her make it out. We got there and she sent out the ambulance. She then did an amazing job of helping calm me down to concentrate on my breathing alone. Not being able to communicate in such a situation is incredibly terrifying. (Which is the whole point of the text 911 service).
Paramedics arrive and ironically one of them had helped me with the original anaphylaxis that had caused my breathing problems back in May. That helped a lot as he remembered that I have a lot of severe allergies. They get their monitors on. By now my breathing is settling a little and we agree that I don’t need the Epi-pen right now but I was put on oxygen and transported off to the hospital. That high blood pressure worrying them.
A short while later I’m back in the same room in Emerg. being treated by the same nurse as that morning. The paramedics, nurse and doctor feel that what had happened was that the epinephrine had worn off and that I hadn’t fully finished with the allergic reaction from that morning so I’d been triggered into a severe asthma attack. Back on the monitors (the risk of hives being considered less than the risk of heart damage if they don’t monitor my heart given how high my blood pressure was). It was still way up at 232/130.
Basically, I just needed monitoring for safety. A biphasic anaphylaxis reaction could still happen and if it does I’m likely to crash in less than 5 minutes so at that point I was safer in the hospital.
Breathing is slowly returning to my new ‘normal’ of short of breath. A few hours later and I’m sent for a chest x-ray to confirm that I didn’t have an embolism from the thyroid biopsy. All clear.
My BP had very slowly, with a lot of ups and downs, come back down to my current normal of 160/110; in fact, a couple of times we even had it as low as 157/99! So I can be discharged and must follow-up with my family doctor with whom I actually have an appointment today anyway, and my respirologist. A new concern that needs investigating – every time my heart rate came down my oxygen level dropped and would then come back up, sending my BP higher again. An interesting correlation!
A new concern that needs investigating – every time my heart rate came down my oxygen level dropped and would then come back up, sending my BP higher again. An interesting correlation!
The problem now is how to get home. Medical transport will be hours as all the ambulances are run off their feet. Emerg. had become crazy while I was there with people in the corridors and about 30 more still waiting to just be triaged.
They call me a cab with a firm in town that they know to keep their cabs really clean (With me hoping to God that they don’t use citrus cleaners to do so) and with non-smoking drivers. The cab arrives and I’m home just before midnight. My dogs are very excited to see me.
So the irony of all this is that there I was worried about the biopsy and having my throat touched and that turned out to be the least of my troubles.
I now look like I’ve been beaten up. One arm is black and blue from several failed IVs and the two good ones. Both upper arms have weals from reacting to the blood pressure cuffs – both the one used in the hospital and that used by the paramedics. I’m blotchy from the heart monitor – but not severe hives this time – so the high dose of prednisone they gave me in the morning must have finally kicked in! Oh and I have a small incision and swelling from the biopsy itself and the neck, throat, shoulder swelling that started this particular investigation.
It will be interesting to watch the looks I get when I go to my doctors later today!
I do want to praise all the staff that worked with me today. Yes, it was very frustrating at times when they were so busy that they barely kept to the hourly monitoring, other than coming in to turn off my monitor alarms repeatedly. However, they were all compassionate, considerate and very supportive.
Our hospital, Sault Area Hospital, has some amazing staff. However, they are incredibly understaffed. I’m not usually one to comment on politics but on this occasion I think the issue is too important not to. Please look at the facts presented at the Town hall meeting in May 2016 and consider for yourself the consequences for our community here in Sault Ste Marie.
Hospitals throughout North America are facing the same challenges so please identify the action groups working on behalf of your local hospitals and support them, any way you can.
Twice now, in three months, my life has literally been saved by my local hospital staff and paramedics. Anaphylaxis can kill in 5-30 minutes if not treated promptly. On both occasions, they acted promptly and efficiently despite the fact that anaphylaxis is not that common. Nobody argued that I didn’t present typically they just treated appropriately. Thank you.