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Everything Happens For a Reason..

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Hello everyone!  I hope this post sees you well.  Once again I had a hiccup that pushes other things to the back but I think you will find this one very interesting.  This post shows you that everything happens for a reason.

Since the last post, my Legionaires Disease has dissipated and I have a clear scan on my lungs! When I was in the hospital for that, the doctors took me off my medication for the Crohn’s Disease (Rinvoq).  When I got home, I tried to restart my medication, however, without prevail the medicine stopped working.  This means that now I’m not on any medication for my Crohn’s and this is not a good thing!

During this time, I developed a pain on my right side (again).  This pain was getting worse by the day and I started developing a low grade fever that eventually became a high fever.  I tried to live my day as I always did but at night, I would have the heating pad on me.  I called the doctor to let her know the Rinvoq was no longer working and that I felt I needed to try another medicine.  She agreed and wanted to put me on Skyrizi, after we got approval from the insurance, of course.  It took only a week to get it approved, the next step was to get a TB (Tuberculosis) blood test…

On a Monday, I went to Quest to get my bloodwork done so I could receive the Skyrizi.  While I was there, another doctor had ordered some bloodwork for an upcoming visit.  I told them to go ahead and get that bloodwork also to save me another trip.  I went home afterwards and all was good, so I thought.

The next day, the other doctor’s office called to tell me that my Magnesium was dangerously low and that I needed to get to an ER to receive a Magnesium infusion.  I kind of brushed it off because I didn’t have any symptoms of a low Magnesium, I had a bigger pain – my right side. I thought to myself that I would just double up on the Magnesium supplements.  Throughout the day, the doctor’s office would call to make sure I got to an ER and everytime they would yell at me for not going sooner.  When my husband got home from work, I told him that I would go to the ER down the road to get my infusion, and he could go to his volunteer activity.  This was pretty routine for me so no big deal, so I thought.

It was raining so there wasn’t many people in the ER (only 2), thank Heavens.  They got me right in.  I told them what was going on and that I also had a pain in my side.  The doctors told me they would give me a CT scan while I was there.  When I was scanned, they didn’t give me the contrast because they said I had a history of an allergic reaction to the contrast – which I did back in 2017 when I had the PE blood clot but I had many other scans afterwards with contrast and I was okay.  Anyway, when the results came in, the doctor came in my room, pulled up a stool and didn’t have a happy grin on his face.  He told me that my Magnesium was a little lower than before and that they will get that up with the infusions, however he was more concerned about the CT scan results.

The CT scan results showed that I had a pretty big abcess where the small and large intestine connect (I have had 2 surgeries there previously) and that I had a loop of intestine that was bringing in air from my abdominal cavity causing me the copius amounts of gas I’ve been having and that my small intestine was perforated.  He told me that he believed I needed emergency surgery.  I freaked out!  He left abruptly because of a phone call and I called Mark to tell him what was going on.  He freaked out also because the last thing he knew was I went to get a Magnesium infusion and I should be home that night or the next day.

I’m going to stop right here for the time being.  It is quite a long story and I don’t want you to get tired of it because there is alot more that went on that week!  Just remember to take one day at a time with this disease or any other autoimmune disease.  Things can change in an instant!  If you have any questions or comments, please feel free to ask.  We are in this journey together.

Chow for now!

Kelly

 

Life Interrupted….Again!

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Me in the hospital for Legionnaires Disease

Hello everyone!  I hope this post sees you in good health.  I am going to “skip” over a few posts and tell you about my recent health scare.  I know a few of you have been asking about why I was in the hospital last week and I believe my blog would be a good platform to tell everyone.

Life was going good, healthwise, for a change.  I had even managed to gain a few pounds.  The week before the 18th of May, I had developed a low-grade fever in which I contributed to my Crohn’s Disease.  I thought NO BIGGIE, I’ll get over it soon.  This was the only hiccup I had and didn’t think much of it.  Saturday, the 18th at 5:00am, I hooked myself up to a bag of saline because I felt a little dehydrated.  It runs for 4 hours so at 9:00am I could unhook myself and have the rest of the day IV free.  Throughout the day, I had a pain in between my shoulder blades on my back and the fever was rising higher throughout the day.  I told both my husband and my daughter what was going on and in the back of my mind I thought this pain felt like a PE blood clot that I’ve had in the past.

Around 3am Sunday morning, I turned on the bedroom light and told Mark that we needed to go to the ER.  There is a hospital about 5 miles down the road and I chose that one instead of going all the way to St. Louis that morning.  I told the ER what my symptoms were and we had a seat.  Before you know it, I was being processed and placed in an ER bed.  I was given an EKG,  X-ray, CT scan and blood tests.  While I was waiting for the tests to come back, I started having a lot of pain in my upper left side of my chest. I honestly thought I was having a heart attack!

When the results came back, the doctor told my husband right where I said that I hurt (between shoulder blades and left side of chest) is where pneumonia was found.  I had pneumonia in both my lungs. They also told me the left side of my chest showed a spot where my lung looked like “mush.” Now, I don’t know about you, but if someone told me a spot on my lung looked like mush, I’m going to slightly panic, and I did!  They also sent off a sample of my blood/spit to another lab.  So, off I go to the ICU for 3 days.

While I was in the ICU the doctors literally pumped me full of every kind of antibiotic known to man!  Even the antibiotics that were on my “allergic” list were pumped in me.  This is the time where I thanked God that I had a PICC line.  I got all my antibiotics through this line and didn’t have to worry about any IV’s.  The doctors came in my room Tuesday morning and told me the sample they sent off came back Legionnaires Disease.  This disease isn’t contracted person to person but it is contracted through infected water droplets that I somehow/somewhere inhaled that had this bacteria in it.  Anyplace where there is water sitting or had sit for a long time such as drainage pipes, garden hoses, bird baths, shower heads, sprayers, air conditioning in large places, veggie mists at the grocery store, etc…I have no idea where I had gotten it from because a lot of these places I go or do without even thinking about it.  With my immune system being comprised due to Crohn’s Disease and the medication I take, I can literally look at something and become sick.

With good pain meds and a plethora of antibiotics, I was out of the ICU Tuesday afternoon.  The doctors discontinued the fluids because I looked like the Stay Puff Marshmellow man and I had to deal with the all over puffiness.  One good thing, I got to eat a normal diet while I was in the hospital this time because it had nothing to do with my Crohn’s (somewhat) for a change!  The doctors kept me full of antibiotics throughout Wednesday and Wednesday night, one doctor told me that I could possibly leave tomorrow (Thursday)!  I needed to hear something positive for a change.  I was getting cabin fever and a little depression crept on me during this time.  During the whole stay at the hospital, I had been walking the halls so that my pneumonia wouldn’t get worse and my legs get not too weak.

Thursday came around and one doctor came in early and told me I could leave that day.  I still had 2 more doctors to go because they all have to agree.  Late morining rolls around and both doctors that were left told me they were going to release me around noon.  The nurses came in to go over my new medication list. It had changed drastically! Thank Heavens my daughter was off work that day so that she could pick me up.  By noon I was packed and ready to go!

I get back home and was so happy to be there!  That day, everything went off without a hitch and I felt great!  I believe I was on a high from actually being home.  That night, I slept on the recliner, straight up because I was afraid that I would lay down and be in the same boat again.  That next morning, Mark was gone and Isabella had to go to work.  I was left there by myself, coming off some of the medication that was given to me previously.  I honestly felt sooo jittery, dizzy and nervous that I was afraid to get up and around too much.  Isabella came home to check on me during her lunch break and I was so mentally challenged by then, she was afraid to leave me, but I reassured her I would be okay.  I hurt so bad, words cannot describe, yet the doctor wouldn’t give me any pain meds after I came home. When I’m in pain, I don’t want to talk to anyone because I am trying to concentrate on something other than being in pain. I noticed that every bodily fluid that came out of my body was an olive green color.  It all looked the same, no matter what the fluid was.  I also couldn’t sleep because of all the jitterness that going on.  If I had the opportunity to slow my heart rate down, I would sleep maybe 20-30 minutes at a time.  That was throughout the day and night. Saturday was the same, Mark was gone, Isabella had to work, I was left alone again.  I honestly thought I may have to go back to the hospital, but I fought it hard.  Mark called to tell me he was going to bring home some porksteaks to cook out, so that gave me something to look forward to. I felt the same jittery, dizzy and nervous person that day also.

I forgot to mention that sometime during the day on Friday, I get a call from the St. Clair County Health Department because the hospital had to report my disease.  The lady literally asked me 50 questions about where I had been and what have I been doing the past two weeks.  I answered as I remembered. She told me that they have to document the places in case someone else in that area or same place came down with the same disease.

Things started changing for the better Sunday.  The nervousness had subsided a little and I was better mentally.  I sat on my patio for as long as I could until the storms came along.  By Monday, I was feeling even better.  I actually went to Home Depot and grocery shopping with Mark that day.  I’m not telling you it was an easy thing to do, but it felt like I was getting back to my normal.  During the time I was in the hospital, the flowers and plants that I had ordered had came in (imagine that!).  Both Mark and Isabella helped me get them planted (with a mask on of course) that day.  We had a great day at home.  My happy place is the patio.  I could sit there on a beautiful day all day if I could.  I love to check on all my plants/flowers and sit in my favorite rocking lawn chair with a little music in the background.

I believe each day now, I am getting better and better.  I sit on the patio in the morning and read my book, I am watering my flowers and doing a little housework around the house with some rest in between activities.  I am getting back to my norm, but I am very watchful of what I do outside, especially around water or soil. I do not know where I picked this up, but I do know I am going to be more cautious of my surroundings to make sure I do not get this horrible, painful disease again, even if I have to wear a mask. Remember to take Crohn’s Disease one day at a time, this has helped me in recovering from the Legionnaires Disease also.  I have to stop what I am doing, take in a deep breath, get refocused and move on.  It’s hard sometimes, I know. If you have any questions or comments, please feel free to ask!

On another note:  I have a cousin that has been in and out of the hospital for some time now.  We did actually connect to each other while we were both in the hospital. As he put it, “we certainly aren’t the poster children for good health from the bootheel (of Missouri)” Although I was in the hospital for a week, he has it much worse.  He is receiving a bone marrow transplant today, please keep him in your thoughts and prayers.

Chow for now!

Kelly

 

 

 

 

Life in the Hospital

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Hello everyone!  I hope everyone is doing well these days, I’m hanging in there myself.  In this post, I will tell you what it was like for me to recuperate in the hospital during my 29 day stay.  It felt like a lifetime!

So, let’s pick up from where the last post left off.  I told everyone about my ventilator experience.  Now, this is my time after waking up but still on the ventilator and completely off.  The first thing I remember when I woke up is these two male nurses talking in my room.  One worked at the hospital and another was a military nurse that was interning there.  I hadn’t opened my eyes yet so they didn’t know I was listening or was even awake.  They were each talking about their wives and what hobbies they liked doing together.  It was really sweet to listen to them talking highly about their wives.  All of the sudden, one of them starting yelling my name, thinking he was waking me up from being on the ventilator.  I didn’t open my eyes yet and I heard him tell the other, “She’s probably pissed off, I would be too if I had to be on the ventilator.”  I then opened my eyes and the both of them rejoiced!  They were giving each other a high five and asking me how I felt.  Of course, I still couldn’t talk because I was on the ventilator still but I gave the thumbs up.  They then started telling other nurses in the hallway I was awake.  They also stripped my bed sheets, stripped me of my gown, gave me a sponge bath, changed my sheets and I felt like a brand new person! By this time, I had no shame in male nurses vs female nurses.  All this happened about 4:00 in the morning.

In the following days, the Respiratory Therapist gave the nurse the thumbs up in getting rid of the ventilator.  That day, the doctors made their rounds and the RT came up to me and told me that he was following my case closely because his wife has ulcerative colitis and wanted to know what they could be facing in the future with her disease.  He then gathered the nurse and a technician and took out my ventilator.  They told me to take a deep breath in and while I was doing that, they were taking the ventilator out.  I thought I wasn’t going to make it, it was a scary thing to go through.  I couldn’t breath until the ventilator was completely out.  My mouth/teeth were heavily coated with some funky buildup that comes from having the ventilator in my mouth for 10 days, vomiting and not brushing my teeth since the beginning of the month.  I was pulling chunks out of my mouth that were caked to my teeth.  The nurse handed me a warm wash cloth to wash my face and then toothpaste and a toothbrush. When I finally got cleaned up, the nurses asked me if I wanted to call my husband at work.  They handed me the phone and I called – he was surprised!  I believe I called a lot of people that day – I finally had a voice even though it was soft and scratchy!

The remainder of my stay was very interesting and heartbreaking with many ups and downs.  The nights were sleepless.  They ended up giving me Amberen to help me sleep.  With all the bells and whistles that were going off at all hours of the night, there was no way this girl could sleep.  Also, there were many days that I was in there and couldn’t do my physical therapy because I had a problem with my heart rate.  I would just sit on the side of my bed and my heart rate would jump up.  Physical Therapy wouldn’t “walk” me if and when my heart rate was too high.  That meant my walking sucked.  I was so afraid I wouldn’t walk right again because I wasn’t getting enough PT.  I also had so many wires coming off me, it took 30 mins to get me into the chair just to sit.  The surgeon wouldn’t let me eat anything for a week after I got off the ventilator because he didn’t want to “wake up” my digestive system for all the problems we were having at the time.  One thing at a time.  The only thing I could do was put ice chips in my mouth and suck them out with suction before I swallowed it.  I wanted so bad just to swallow some, but I didn’t.  Didn’t want to wake up my digestive system.  The days were boring, I had never watched so much tv.  I couldn’t wait until Mark got off work so we could visit for a while.

One day, I had a nurse that made me so nervous.  She was older, and she talked my ear off and really didn’t pay attention to what she was doing.  She was trying to give me my call button and she accidently pushed a wrong button somewhere that signaled a code.  All the sudden I had all these doctors and nurses in my room looking at me and wondering if I was coding.  Also, she was draining my colostomy bag and wasn’t paying attention to what was going on and spilled poop all over my bed.  I was laying in poop!  The next day she was scheduled to be my nurse again and my night nurse had heard what she had done the day before.  She told me that I could request another nurse for the day if I wanted, so I did!  That other nurse made me feel anxious and there was no way I was having another day like I did the day before!

While in the hospital, I was fighting depression.  One big reason was my daughter, Isabella, was moving out and getting an apartment.  She was going to be a big college freshman.  Even though I was still in the hospital, it was time for her to move and start getting ready to go to school.  I was thinking that I, her mother, should be at home helping her pack and move.  Something that mothers and daughters do together and look forward to.  I would just sit in my chair in my room and look out the window and wish so bad that I could be with her.  Even though she reassured me that she was handling it and her father was helping her, it was heartbreaking.

I was so looking forward to finally going home.  When that day came, the surgeon came to see me for the last time in the hospital.  He was taking a look at my stomach, all of the sudden, he stuck his finger in some stitches and broke them apart creating a big hole in my stomach!  I asked him what the hell he was doing.  He told me he was afraid that those stitches were going to get infected so he wanted them to heal again.  So now I’m going home with a big wound on my stomach that I have to take care of at home.  I also had to go home with a foley catheter and a drain tube coming out of my stomach because I now have a hole in my bladder from the surgery.  Long story short, I had scar tissue that adhered my bowel to my bladder so the surgeon had to call the Urologist in to take care of the bladder part.  While healing, the hole appeared in my bladder.  I still have the hole to this day and still have the catheter and drain in.  That’s an ongoing problem I’m having now.  Hopefully I won’t have to go back into surgery for this.  Instead of my 2 day recovery, I ended up staying 29 days and I had to learn to walk again because I didn’t have much PT in the hospital.  I walked with a walker for about a month after being released from the hospital.  In the next post, I will tell you the trials and tribulations of being at home facing the uncertain.  Remember to take one day at a time and keep moving forward!

 

Chow for now!

2nd round with the blood clot

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Hello everyone, hope things are going well your way!  My life is a little better now (knock on wood) but I have gone through another ordeal since we talked last.  In this post I will tell you what is currently going on in my life!

I’m going to say it was a month ago when one night, out of the blue, after eating supper, I started not feeling so well.  However, that night I promised my daughter that we would go to the movies.  I started feeling nauseous before we left for the movie so I took a zofran before we left.  During the movies, I started having diarrhea and missed a lot of the movie!  Also, for some reason both my arms started aching badly, not the muscle but in the bone.  It was late when we got back so my daughter went straight to bed and my arms started aching more and more by the minute.  I tried to go to sleep, however, I could only sleep 30 minutes at a time before the pain in my arms would wake me up.  I got up to walk around to see if there were any shortness of breath and I could breath okay but my heart just ached and it was beating faster than normal.  I also felt warm so I checked my temperature and it was 100 degrees.  I walked the floor for a while before I took a pain pill just to get some sleep..before I went to sleep, I wrote my husband a note telling him that if something happens to me, this is what I was experiencing and this is what I did for it!

The next day, my Home Health nurse came to change my dressing and draw some blood.  I told her what I experienced the night before.  She had to call my primary doctor to tell her about my PT/INR so she mentioned to her what I told her.  My Primary doctor called me later and asked if I could get an x-ray at Mercy Hospital in St. Louis then come to her office for a visit.  So off to St. Louis I go to get the x-ray!  At the hospital, I overheard the radiology technicians discussing the x-ray so I knew it wasn’t good before I got to the doctor’s office, I was just hoping it wouldn’t be too bad.  At my doctor’s, she told me that the x-ray showed what she thought looked like pneumonia.  She took a look at it again and told me it could also be another clot!  She wanted me to go to the ER at Mercy and get some more tests ran to determine what exactly it was.

I got in pretty fast when I mentioned I was there because my doctor thinks I may have another PE blood clot!  Anyhoo, another test was ran.  Since we now know from the previous post that I cannot have a CT Scan done because the dye made my right kidney go into failure, they gave me an alternate test.  The technician told me to put this mask over my mouth/nose and hold it tight so that it creates a seal around my face.  She then sprays this stuff into the mask via the air hose.  Supposedly I was to hold this mask tight to my face for 5 minutes.  OMG! I could not breathe and was hyperventilating!!  I lasted for a good 3 mins and I told her that I couldn’t breathe!  She let me cheat a little and let some air in.  There wasn’t much air coming through that mask!! Finally the test was over and they told me I had a small clot.

 

I was admitted but this time it wasn’t critical that I stay in bed for some reason.  The doctor’s believe that since my PT/INR was below the therapeutic range for three weeks in a row, my body had a chance to form another clot.  This time, the doctors’ main goal was to get my PT/INR up to where it is suppose to be (between 2-3).  They had me on a pretty high dosage of Coumadin and gave me Lovenox shots in the stomach to get my PT/INR up.  I finally left after 4 long days in the hospital with a PT/INR of 1.7 ( since it was moving upward, I talked them into letting me go)!

Once I got out, my Primary doctor told me that she could no longer take care of my Coumadin dosage because it took more time than she had to regulate me so she referred me to a Hemalogist to help.  During my first visit with this doctor, he degraded me to the point where I almost walked out.  As I proceeded to tell him my history with Crohn’s Disease and PE blood clots, his head must of been in the clouds.  I don’t think he even heard a word I said to him!  He started asking me questions about my Crohn’s meds like if I’ve taken this or that to control it.  This medicine he mentioned is medicine I took back in 1998!  I’ve had Crohn’s Disease for 21 years and have tried everything currently out there.  If he would have listened to me in the first place, I wouldn’t have to repeat myself!  Then he asked why the doctors haven’t put me on something like Eliquist or Xalelto.   When I told him they don’t know how much of that I would absorb since I have Short Gut Syndrome, he just looked at me with this big grin like he didn’t believe that they would say that and I was lying to him!  That’s when I almost got up and walked out..He just looked at me and told me to take 7mg and Coumadin and get tested in 2 weeks!  I did speak up and told him that I was currently getting tested twice a week and I at least wanted it tested weekly.  He agreed.

Since then, my PT/INR has been everywhere and I hope it gives him hell!!

I do have to say that my Crohn’s Disease hasn’t really been bothering me that much lately.  I probably just jinxed myself!  Although I have had some pain on my right side, it could be much worse.  Thankfully only one system at a time is acting up and not both…yet!  I guess the only thing to do is to take one day at a time.  Oh yeah, I did stop taking my hormone pill because they said that may also be the cause of the clots so now I am in full-blown hot flashes again!  I guess I would rather have the hot-flashes instead of the clots!!  Until next time..

Chow for now!

Kelly