Monthly Archives: May 2024

Life Interrupted….Again!

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 DiseaseThis 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 colorIt 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 SundayThe 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

 

 

 

 

My Annual Trip to The Mayo Clinic in Rochester, MN 2024

 

Hello everyone, I hope this post sees you in good health!  In this post, I will let you know what happened while I was at The Mayo Clinic this year and I won’t disappoint you!  I will also let you know the dilemmas I had to go through during this time.  Never a dull moment!

So, referring back to my last post, we were on the way up to The Mayo Clinic for my annual visit.  While we were driving, I received an email from my doctor explaining that she had accidently sent the Prednisone to the incorrect pharmacy, that’s why I didn’t receive it until a week later.  Anyhoo, at least my meds were waiting for me when I get home.

When we finally got to Rochester, MN (8 hours later), we were starving!  My instructions for my Endoscopy for the next morning told me to fast for at least 8 hours before the test was performed.  It was around 5 o’clock when we ate and my test wasn’t until 7:00am the next morning so I believed I would be okay.  I followed the instructions, right?  Every time we get up to Rochester, we have to have some fresh cheese curds first thing.  They are so good, coming from all the dairy farms around there.  YUM!  So, we completely stuffed ourselves because we had some good food and wine!  We went back to our hotel room and I couldn’t eat or drink anything else for the rest of the night.  We also had tornado watches and strong thunderstorms in the area, what a night!

We get up bright and early the next morning because I had to be at Mayo by 7:00am.  I was the first one there but it took forever when they finally called my name to go back.  I waited in the back, which seemed like forever because people that were there after me were going ahead of me.  I think it was because I was considered a special case because of my ostomy.  I finally met with the doctor and nurse and they told me exactly what they were going to do and what they were looking for.  I can’t wait to hear what they found because during this time, my fistula had really opened up.  One good thing about having a PICC line is I don’t have to get stuck for an I.V.  I hate those things!

The nurses are waking me up in no time.  They don’t say anything about the test, they only ask me a lot of general questions and ask if I want anything to drink.  I order a Sprite and it tastes so good!  I’m there for a good 30 minutes and they discharge me.  So now we have one test down, one test to go…at 7:45pm!  We go back to the hotel after the Endoscopy and I change just the bag part of a 2 piece because they got some poop on it during the test.  I read the instructions for my 7:45pm MRI that is scheduled.  It told me to start fasting 4 hours before the test is scheduled so I have until 3:00ish just to make sure.

We piddle around the hotel and then we wanted to go to a Farm Supply store then out to eat.  It was pouring down rain and I asked my husband Mark if he would just pulled up to the door and let me out.  At the last moment, he found a parking spot right up front so I told him to forget about it, I’ll walk.  Boy, am I glad I did!  I stepped out of the car and felt something pouring down my leg – it wasn’t rain.  I looked down and seen a stream of poop flowing down my leggings!  I scream toward Mark and jump back in the car.  He had no idea what was going on and he jumped in the car after me.  I told him and he seen it.  All of the sudden, he rolled down his window and started gagging!  I was laughing my butt off!  It was still pouring down rain and he had his head hanging out the window, driving and gagging!  It seemed like a long ride back to hotel!  I told Mark that I had to laugh because if I didn’t, I would be crying.

We get back to the hotel and I have a dilemma nowIn order to get to the room, we have to go inside, past the lobby and up the stairs (no elevator).  I haven’t been so nervous in a long time!  Mark goes in and shields me as much as he could.  I didn’t make eye contact with anyone and up the stairs I go.  My right side legging is soaked with poop…it is now dripping inside my shoe.  We get into the room, and I immediately run toward the bathroom and stand in the tub to take my clothing off.

I rinse out my clothes, shoes and clean up the bathroom and it only took me a hour.  I inspected the bag and it was defective.  The bottom of the bag was not put together at all so things just fell out.  The next bag I put on, I ran water in it to check for any leaks.  I don’t know what I would have done if that one was defective because that was my last bag!  I didn’t even bring any extra change of clothes!  I guess that’s what I get for being overconfident.  I hadn’t had a leak in years and now I’m down to my last bag that I brought.  A lessen learned.  Mark told me that he seen a pay washer/dryer downstairs in the vending room.  I took the clothes downstairs and washed them.  I was so happy because I had no idea how I was going to get those clothes home.

We decide to head out again as planned.  When we get to the Farm Supply store, I go to the shoes and look at the clearance.  I found a pair of UnderArmor shoes, in my size, for $13!  They were mine!  I felt yucky in the shoes I had to clean out – I didn’t even bring an extra pair of shoes.  We go out to eat lunch and go back to the hotel to take a nap and wait out the time until we need to leave for my MRI.  Around 3:30pm, Mayo calls and told me they had some earlier openings if I wanted one.  I told them I could be there around 4:30 and hurried up to get ready.  Now, I’m in a dilemma again because it hadn’t been 4 hours since I ate, like my instructions said. I go anyway.  They must have been in a hurry to leave on time because they rushed me in, I got dressed and they stuffed me in the MRI tube in record time.  While I was laying there, all I could think about is the big, heavy guard thing they placed on my stomach before stuffing me in the tube – I hope my bag doesn’t spring a leak, I don’t have another one.  All was well and after 45 minutes, the test was over. Now I wait for my results from both tests to come back..

I wil stop there.  Tomorrow we leave to go back home.  I had been so worn out from all that happened that day, I just wanted to go home and soak in a hot bath.  I also got my results back from the tests, on my way home and I have an appointment with my Mayo doctor on May 9th, so I will keep you updated on what she has to say.  All in all, I learned a lesson on this trip.  Never be so over confident that it clouds your judgement.  I haven’t had a leak in years, so I didn’t think it would happen then.  I let my guard down – you should always be thinking “what if” and have a solution if it should happenI didn’t pack and extra set of clothes – I thought if I’m not worried about leaks, why should I bring an extra set of clothes/shoes?  We were just going to be up there for 3 days – what could happen? To tell you the truth, that’s not me.  I’m always the one who brings 5 outfits for 3 days and at least 3 extra bags, just in case. I’m not sure what I was thinking then..Remember to take this disease one day at a time, and always practice what you have learned through your journey.

Chow for now,

Kelly