Day 26 of Cushing's Awareness: 15 years at a glance.

Today my husband and I have been married for 15 years!  I am really glad that I've been lucky enough to be married to a great man who has stood by me during some pretty rough times.  When we got married I was already sick, but I didn't know I was sick.  I didn't even know what Cushing's Syndrome was, but I knew that my weight and weight gain was not normal and something always seemed off about it.  I was still able to function as a normal person for the most part.  Almost all my jobs during that time had crazy hours, so I was always up until 5 in the morning, so maybe I never was aware just how off my body was.  It seemed normal for me to be up all night and then finally feel myself getting tired when the sun would come out.  

I wish I could turn back the clock and know all that I know now.  Back in 1997, the Internet was not a fraction of what it is today.  Most households didn't have a computer or the Internet yet.  I suppose even if I had known what I know now, I still wouldn't have been able to connect to all the other Cushie's online and read about all their stories.  The stories that have inspired me, given me the courage to keep on my path, the strength to continue to learn more about Cushing's and help fit all the pieces together.

It is truly amazing and crazy at the same time how much the world and myself have changed during those 15 years.  I hope that in another 15 years I am able to look back and reflect how much my life has changed for the better.  My kids will be adults, possibly in college, and I will be better and able to look back and reflect on how something so wonderful can be born from the depths of such a devastating illness.  I will defeat this. 

I had to have a CT of my sinuses done today.  They tried putting in and I.V. six times and blew several veins before they called down another nurse to use a Doppler to find a better vein.  It was not a fun ordeal, but thankfully the seventh try was a success and I was finally able to get the CT scan done.  Cushing's has obliterated my veins and today was a reminder of just how sick my body still is.  I hope that they figure out why everything smells and tastes off and figure out why I can't get rid of these infections since my surgery.  Hopefully I will know something soon.  I am just ready to get whatever is going on in there taken care of.  I feel it's hindering my recovery so much at this point.  Here is to hoping that they see what the problem is and the remedy is fairly simple.  I'm not looking forward to the possibility of surgery, simply because I am petrified of them messing in the same area that I had the artery bleed in, but I know that I need to do whatever is necessary to get better.  All I have to do is look at my kids and my husband and the solution is simple.  Fight on.  

Happy Anniversary, Hubby. :)

Day fifteen of Cushing's Awareness: The infection that wont't die!

I really hope that one of these days I will be able to stop writing about my story and just blog about how life is good and I'm cured.  It's a dream, but I believe it's an attainable one.  I just have to keep as positive as I can and always listen to my body.  I left off somewhere in mid February of this year.  I had just finished a round of Cipro for the nasty smell inside my nose.  It seemed to help, but within days of being off of the antibiotics it returned with a vengeance.  It was even worse than before.  The biggest issue is that after this surgery and especially after an artery bleed I was not allowed to blow my nose or anything in fear of creating a CSF (cerebral spinal fluid) leak.  Most people are able to start using a sinus rinse around three weeks post op, I was not able to do one yet because my artery bleed had pushed my recovery back by almost two weeks.

I called MD Anderson yet again, and once again they called in a prescription for Biaxin this time.  I told Dr. McCutcheon's assistant that if this didn't clear it up I would be seeking consult with an ENT surgeon here locally.  I started the prescription and noticed the smell seemed to ease up a little, but it wasn't leaving.  I can't even fully describe just how foul this smell was.  I was fully aware that my sinuses were full of blood from the artery bleed and other gunk from the surgery itself, but it really had no way to properly drain so it was just sitting there becoming this nasty cesspool of infection.  I would often feel chunks of stuff getting stuck in my throat.  Everyone had warned me that after this surgery expect a huge scab of sorts to make it's way down your throat.  You either have to swallow it or expel it out of your mouth or you will gag on it.  Well, this one evening I was clearing my throat repeatedly and could actually feel something restricting my air flow in my right nostril.  I tried to clear it out and all of a sudden it rocketed out of my sinuses and into my throat.  I choked and gagged and out came the largest and most nasty dried blood clot covered in green mucus.  I dry heaved for a good minute after that.  It was absolutely the most disgusting thing on earth, but immediately the smell seemed to ease up inside my nose.  This clot was the size of my thumb.  I was relieved thinking that perhaps now all this infection stuff would clear up on it's own.  Boy was I wrong.  Within a day the smell returned and continued to get worse.

I researched local ENT's and decided on one that had great reviews and studied at Mayo Clinic.  I called on a Friday and they told me they would fit me in on Monday.  I was scared going in because I knew they were going to have to stick a scope inside of my nose to investigate what was going on.  The Doctor was absolutely wonderful, extremely knowledgeable and competent.  He numbed up my nose and took a look.  He said it was still extremely raw and that I had lots of scabbing and gunk stuck in there.  He pulled out this nasty, nasty scab and immediately the smell was gone!!  He told me to just continue to let it heal and to come back in roughly three weeks.  He also said that in maybe two to three weeks I could begin using a Neilmed Sinus rinse, but he didn't feel my recovery was far enough along yet due to the bleed.  I noticed the smell starting to return within a week.  I waited roughly two weeks and started using the sinus rinse and doing it oh so gently.  He told me to take it very easy as to not tick off the artery that had been agitated.  I was able to clear out a lot of scabbing and green gunk, but the smell would still remain.  It was starting to become more foul than before.  It was to the point that it would actually make me gag.  I called them back and they got me in the same day.  The Doctor numbed me up and took a look and said that I would need to be cleaned out in the procedure room.  I was nervous, but considering the previous time he went in I barely felt anything I figured this would go okay as well.

The Doctor numbed me up pretty good and had me go to the procedure room where they had a big monitor on the wall.  He used a scope and an alligator grasper forcep.  I knew those instruments quite well as I used to sterilize them every day at work.  He went in and started pulling out nasty scabs and other gunk that was inside of there.  He then said there was an area with exposed bone and that he needed to cut the bone as to allow the skin inside my nose to heal over it.  It was literally just exposed.  He gets a grasper that is able to cut bone and goes in and starts clipping at the bone while I'm wide awake, not restrained and having to hold still.  You really have no idea how loud that noise is unless it's happening inside your face.  Thankfully that part didn't hurt, but he had to go even further down into my nose and it almost felt like it was in my throat.  He was tugging on something large and it was no longer numb there.  Tears started spilling from my right eye from the pain.  It was horribly painful, but I was as still as a statue.  Finally he felt confident he had gotten all the scabbing off that was keeping the infection underneath and that I should now start healing up nicely.  He told me to continue the rinses daily, but very gently.  I experienced a bit of bleeding that day, and also quite a bit of pain.

Things seemed to be a little bit better, but yet again that smell returned.  I once again had to make an appointment and this time I saw his assistant since the Doctor wasn't available.  A really lovely guy and of course I get the usual "I've never met someone with Cushing's before."  I told him I was tired of this infection jazz and that we really needed to get to the bottom of it.  I suggested nebulized antibiotics and possibly getting a swab of whatever was in there to see if it was MRSA.  He agreed that at this point nebulized antibiotics were a must.  They never did do a swab, but I got set up to get a nasal nebulizer that included two types of liquid antibiotics plus a steroid for inflammation.  He also said that I would need to be on these for at least 30 days and then we would need to get a CT done of my sinuses to see if there is some type of permanent damage that has been done or to see if my sinuses are no longer draining on their own.  They will also want a brain MRI around that time to check some other issues with the sinuses, plus I  have to get my pituitary rechecked for any residual tumor or possible tumor growth.

I am pretty sure what I am dealing with is indeed MRSA.  Anything else would have died off by now.  Since starting the nebulized antibiotics the smell has cleared up and seems to be doing a lot better, but a week or so after starting them I started bleeding from my nose.  Once again I had to be seen.  They feel it was just extremely raw still and that perhaps the steroids in the nebulizer were creating more of an issue.  I now rotate the steroids every other day, but within the past week have developed another new and alarming issue.  I am smelling cigarette smoke non-stop.  No one is smoking.  I do not smoke, but it literally smells like there is a lit cigarette under my nose.  It is driving me absolutely crazy.  I called my Doctor this week and he feels it could be several things.  The infection may possibly be getting better, there is some type of nerve damage, or honestly...we don't know.  He said if it persists over the weekend to call and he will look in there.  I am just so ready for all of this mess to get better.  I am also taking another oral antibiotic called Bactrim DS.  That makes four oral antibiotics total, nasal nebulized antibiotics and the end still isn't in sight.

I really have a feeling this is all going to result in a sinus surgery.  It's one thing to have a rare disease, but now I have some rare infection and issue inside my sinuses.  I would love for once in my life to just be simple and uncomplicated.

Day Fourteen of Cushing's Awareness: Surviving the aftermath

When I wrote about my artery bleed, I didn't realize how much it would bother me.  It was like picking open an old scab and watching it bleed all over again.  I've been through a wringer of emotions since I wrote it.  I know how lucky I am to be alive, but there is always this fear in the back of my head that it can happen again at any given moment.  If I have to have another surgery in the future, will it happen again?  The thought of brain surgery again doesn't scare me, but that feeling of drowning in my own blood and feeling helpless...oh yes, it scares me very much.

Once I was discharged I was told to act as if I had just gotten out of surgery again and to take all the same precautions such as not bending over, no straining, not picking up pretty much anything and overall just taking it extremely easy.  You never realize what a big task something like that is until you aren't able to do pretty much anything for yourself.  I couldn't even bend over to turn on the shower.  Since my pituitary surgery I was put on a cortisol replacement called hydrocortisone.  When I had the surgery to remove the tumors it pretty much left my pituitary rendered stunned and non-functioning.  For as long as I've been sick the tumors were secreting too much ACTH, which in turn sent a signal to my adrenals to create more cortisol.  In a normal person their pituitary would tell the adrenals to make cortisol at certain times of the day, in times of stress and also in illness. Most normal people will have a higher level of cortisol in the morning so that it wakes you up and makes you feel alert to tackle your day.  Mine was bottomed out in the morning, but at night would soar to very high levels.  Much higher than that of a normal person.  Anyway, what I was getting at was when they took my tumors out my pituitary basically didn't know how to function on it's own, so I have to take steroids/hydrocortisone to basically keep me functioning properly until my pituitary "wakes up."  Some people experience it fairly soon after surgery, some are still waiting for it to function properly years later.  It just depends on the person and the amount of damage done to the pituitary.  Any time my body is in distress or if I have an infection I need to take more hydrocortisone in order for my body to function properly or else I risk going into something called adrenal insufficiency.  Adrenal insufficiency can lead to an adrenal crisis which can be absolutely deadly.  I have to carry around a syringe and a vial of an emergency dosing of hydrocortisone in case I start getting so ill that I cannot function or keep my hydrocortisone pills down.

Since my bleed I have experienced adrenal insufficiency quite a bit.  It usually starts as extreme nausea for me and then leads to diarrhea and feeling very cold and lethargic.  I also notice when I'm starting to get low I'm not mentally functioning right.  I sometimes can't spit out words correctly and have said things that make absolutely no sense.  At that point I take a stress dose of hydrocortisone and pray it relieves the symptoms.  I also have become best friends with Zofran which is a medication for nausea.  

My first real experience with AI (Adrenal insufficiency,) was on my birthday.  It was exactly one week after my artery bleed and I really wanted to feel like a human and go out for dinner with my family.  I had exhausted myself by just getting showered and leaving the house.  Once we arrived at the restaurant I was so sick to my stomach I could hardly eat.  At that point I swallowed a zofran and prayed I would make it through dinner.  I ended up having to stress dose, but I stress dosed in small amounts.  I would feel better for a little while and then the nausea would hit me again.  It is absolutely horrible how sick it can make you feel.  It was also on my birthday that I started noticing an odd smell inside of my right nostril, which was also the side they used to access my pituitary and also the side of the bleed.  It started off as a meaty type smell and as the days progressed it became outright foul.  It smelled like rotting flesh and was absolutely repulsive.  It was all I could smell.  I called MD Anderson and they prescribed me some antibiotics.  They figured I had a sinus infection which is very common after this type of surgery.  It seemed to help a little bit, but there wasn't much I could do.  It was till too early in my recovery for me to use a sinus rinse to try and rinse out some of the gunk that was hiding up there from the bleed and surgery.  I just stuck it out and hoped the antibiotics would do the trick.

A few days after starting the antibiotic which was called Cipro, I was taking a nap and woke up to the worst chest pain I have ever felt.  It felt like my heart was being ripped from my chest.  I literally felt like my muscles were shredding around my heart.  It hurt and came so quickly.  I would gasp for air, clutch at my chest and then it would pass.  It happened several times then faded.  Later on that evening it started again and it was becoming more frequent.  I was scared I was having a heart attack or God knows what else.  Once again I called my mom and asked her to come get me so that hubby could stay with the kids.   My dear mom picked me up and off we went.  It happened repeatedly on the way there and once we got inside they took me back immediately and hooked me up to a bunch of monitors and started an EKG to check to see if I was having a heart attack.  The EKG looked fine, but of course nothing was happening when they did it.  They took a bunch of blood to test my enzymes and then in came the doctor.  It was the sweet doctor who saved my life just less than two weeks prior on the night I had my artery bleed.  She was so kind to me and told me she adores me, but if I wanted to see her I could just come in any time without needing to be a patient.  lol  Her biggest concern was that given my history that I possibly had a blood clot.  Once again I was sent off for a CT scan, but this time it was done on my chest and then they also took a chest X-ray.  Everything seemed to be okay, so they kept me for a while, gave me more good drugs and then sent me home with some pain killers.  They told me to come back if I felt it was getting worse.  It happened a bit more, but did seem to settle down.  After doing some research I found out that Cipro is a horrible, horrible antibiotic for some people.  It can cause severe tendinitis and has many other bad side effects.  

I forgot to mention earlier, that a day or two prior to my artery bleed I called in to request more pain medication and it was found out that when I ended up in the E.R. back at MD Anderson that I tested positive for a urinary tract infection.  That is why I spiked the high fever, not because of anything else.  They told me I needed to be on antibiotics, so at that time I was prescribed the Cipro, but when the artery bleed happened and I was put in a local hospital they decided to put me on a different antibiotic.  Once I got out and felt the infection in my sinuses coming on I called MD Anderson back and they refilled the prescription to a full dose of Cipro.  I do find it odd that within two days of taking it I developed an artery bleed, and then after taking it the second time I ended up in the E.R. locally with what felt like tendinitis around my heart.  Was it the cause of all the issues?  I will never know, but I know that I will refuse that drug for the rest of my life.

I will write more about my lovely infection in tomorrow's post.  It's already almost 5:30 in the morning and I'm still awake. Oh Cushing's, how I hate thee.