Oh MG

I have had a bit of a set back with my MG lately but only to have it go bumbling along again at its usual humdrum do as it wants pace. I feel i am rather in control of my MG; however, at times it likes to have a say sometimes and boy can it get mouthy.

Yesterday, i had to get a temporary catheter for treatments untul i get my subcutaneous souble vortex top of the line limo of ports next week. It wont be ready to use for about two weeks due to hiw tender it will be. But in the meantime i needed treatment a tad early due to some good and bad stress. So iff i go to get the temp and oh what a journey.

I told them i mus. be at work at noon on the same day. They said okay its a temp so its possible. Then i get there and they start and say we will use local anaesthesia…code for lidocaine injections ONLY…i did not realize this. What the heck was all the hubub about needing a driver. I could have driven myself after. I though i would have been given a mild sedative or something stronger than that but nope. No anaesthesia. They said i did better than some patients with anaesthesia and i just stared at him blankly with tears free flowing and shaking like a Chihuahua.

They kept asking if i was cold and i was like no…i was scared, you triggered my anginiphobia and im probably in shock.¬†

But to know that i will have the new port and start the process for my thymectomy soon fills me with a nervous excitment.

Myasthenia and Ports

decisions

So there is always the option of getting a port catheter for your treatments if you get plasmapharesis. There are pros and cons. I can tell you that you have to decide what will work for you. It all depends on your lifestyle and how your body responds to treatments.

PORTS:

Can be semi-permanent (can stay in for several months). However, the require maintenance by professionals or yourself. They cannot get wet and they need to be re-dressed and flushed weekly. So no swimming or showers… You will need to wrap in saran wrap and/or use a spray handle shower rod. I had to do this for months. The ports work a bit easier in treatments though when they are working properly though because they are a larger access point so the treatments go faster. It’s also a plus when you are tired and need to sleep or rest when tired. But a down side is if you are active and start to sweat you have to change the dressing more often and clean the wound site more often to prevent infection.

The port is also an eye sore and annoying because it can be seen ‘around’ some of your clothing. If you like to wear tank tops, boat neck tops, or anything off the shoulder forget it because you can see the bandages. You also have issues with the tubes slipping out of the bra area. I tried to wrap them in gauze and tuck them so they didn’t swing and annoy me when I had one. I also hated the port because when I exercised and did front lying things it was uncomfortable to the point of pain some days and I teach fitness classes so I was just too active for that thing. LOL.

NEEDLE STICKS:

Needle sticks are tough to deal with but if you can muster them it may do wonders for you. There are several down sides with this method as well too; however, this is the method that I prefer. You cannot move your arms in this method because you have 1 inch steel needles in your BOTH antecubital (front of the elbows) simultaneously like you are giving blood. Then you are have to squeeze a little stress ball the whole time which sucks if you are fatigued too much with your MG symptoms (no sleeping or resting there because the machine will cut off). The needle sticks can run almost as fast as when you have a port but it depends on the quality of your veins and your hydration levels. If you veins are bad the you should stick to port because otherwise a 90-120 minute port treatment could turn into a 3-6 hour needle stick. You and the nurses will dread your appointment. In addition, after your sessions you may have some bruising sometimes at the stick site. Just like when giving blood you get wrapped up and then in a few hour take the bandages off depending on if you are blood thinners and the gauges of your needles (i use 16 so I leave mine on for 3 hours) then put on band aids. That night I free myself of all wrap and band aids and I’m free to go and you can go on about regular hygienic care at any point in the day.

With both you will have scarring as with anything that cuts into the skin. So choose wisely if you have a choice. When you are in the hospital you may not always have much choice as they will give you what is best so they can get the best access and the least amount of resistance and give you the best rest. You may not want it but it will be what it best saying this leads into…

CENTRAL LINE PORTS

I have had several of these and they are like tunnel ports that I spoke of early but they are VERY temporary and go in the jugular and stick out of the same area. The different between that and the first one I spoke of is that the other is tunneled, goes in the jugular and sticks out of the chest about 2 inches under the clavicle. Everything I mentioned earlier is true of this model as well, except when you are discharged from the hospital they take this one out.

I have gained a healthy or rather UNHEALTHY phobia of neck surgeries, strangulation, and lying on my back AWAKE for surgery thanks to this particular procedure! I have several scars up the right side of my neck and anxiety galore from the mere mention of needing a port, central line, or neck related surgery. be warned though it is quick if you are in crisis or at a learning hospital it will do a number on you (I will just leave you with that thought). Since then I go to my preferred hospital and they give me anxiety meds and I at 30 years old take my stuffed animal that looks like my dog and endure. Laugh if you must because I do often but I do not care, it gets me through that trying moment when I wish I could black out at will, LOL.

Choose Well!

My Anginophobia

I have fairly certain I have a condition known as anginophobia. It where one has fear of choking or being smothered. They say that phobias even this one are irrational (unfounded even) but I do not see it that way as mine started due to a botched surgical experience that traumatized me. Then after having to get several of the same procedure without therapy after that experience, each time being in crisis mode for MG (meaning I was usually having a breathing issue making it hard to breathe) it simulated the anxiety of the first experience of choking on my mucus. I start to panic each time. Then each time you get a central line catheter place they have to apply force near your neck to insert it and again the anxiety gets the best of me knowing that this is coming. They have to crank up the medication.

Before MG I had only had my wisdom teeth taken out. 9 years ago. Since MG I have had several small outpatient surgeries. The only ones I get anxious about are the ones that go near my neck. Don’t get me wrong I get nervous about any surgery right before hand, but when you even say you need to go near my throat or neck now I honestly start showing signs of anxiety starting with the heart rate, sweating, and tension through my whole body.

One example was an IVC filter I had placed after pulmonary embolism that I suffered due to my birth control while in MG crisis. It was placed using my femoral artery near my inguinal crease area (the fold near your hip flexor and abs). When they said they had to removed it I figured they would retrieve it the same way…WRONG! I got a huge surprise while in the hospital that day for that outpatient procedure. They said they had to go in through my neck to get it and I instantly freaked. I called the doctor in and told him my concerns and he checked for scar tissue since he did not know about my previous central lines in case he had to use the ‘long way around’ route which freaked me out even more. I promise you, my husband who NEVER (at this point in my medical appointments) sat up and looked away from his phone because he heard him say put it out through my neck. He knew my fears. At the end of the surgery b/c once again I was awake during the whole thing I made them laugh when they showed me the filter and I asked if I could keep it and they said no, lol. They said it was the first time I smiled the whole time.

They always want you to talk and try to keep you mid off it which does help but I just cannot I am so afraid after my first experience. I was at a learning/ teaching hospital in crisis mode where it took them forever to start a central line procedure. I had my trusty suction tube because I was producing quite a bit of mucus. This caused me to cough often when lying down. I asked if I could sit-up until they were ready to start and they said no. It was frustrating. So then I kept coughing and then nurse took my suction and was barely paying attention and I couldn’t cough forcefully enough because I was in crisis mode. Then she kept jamming it in the wrong areas. Then every time I tried to sit-up because they were not ready yet, she would hold me down making me more anxious. Then they strapped me down because the table is so little. I seriously almost lost it then. I just was not doing well. When they finally started it and got it over with we got back to my room and I was complaining that I could not breathe and someone to help and no one was coming and I began to vomit on the floor over the rail of my bed. My neck hurt I was trying to suction myself and being in a learning/ teaching hospital a ton of newbies just sat and stared at me as I gasped for air. Eventually someone came into the ICU and gave me some medication and cleaned me up and they put me on a this strange c-pap type machine that forced oxygen in. I had to breathe in rhythm with it or I felt like I could not breathe again. I could not get out of that hospital fast enough.

Though I know logically I should seek help and therapy due to my educational background, I have been procrastinating in hopes that I can somehow get myself through this without that. I figure I may find a way that will not require a professional’s help but I may not have that luxury much longer if a cure does not come quick and I have to continue with MG and hospitalizations since they like to do central line ports so often. I do not get hospitalized nearly as much anymore but when I do I know they are going to use that method which sucks and that means I need to be able to tolerate it better. I am working on this…WE will say that based on my favorite model the stages of change, I am in the contemplation stage as I have began to research and try some methods be continue to relapse. I will not call anything action though until I am honestly seeing either a professional or a sound method that should work that I COULD stick to for 6 months or more if I tried. Pray for me guys! I do want to change but I am honestly scared…I do not know if anyone can help me since this was due to a trauma and not a made up fear of the unknown like some phobias (as this comes from someone who had no known phobias before this).