Category Archives: Tests

Emergency Surgery??

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Hello everyone!  I wanted to continue with the last post as soon as possible because there is a lot of details to tell you about.  They are almost unbelievable!

I left off the last post telling you that the ER doctor had just told me he thought that I would need emergency surgery.  He also told me that they needed to transport me to another hospital because their hospital wasn’t equiped for that (it’s a small hospital).  They were just waiting to hear back from them at that time.  I waited and waited, still in the ER.  Sometime during the night, the doctors/nurses came in to tell me that the hospital, that is my home hospital that I had most of my surgeries at, turned me down saying that I was too complicated of a case.  The doctors should get a hold of Mayo.  So the doctors there at this small hospital called Mayo and Mayo wouldn’t except me saying that they were confident the other hospital could do it.  So now I felt like I was a hopeless case and nobody wanted me.  The other hospital in St. Louis refused again so Mayo agreed to take me then.  Let’s put it this way, if I was supposed to have emergency surgery, these hospitals weren’t getting in a hurry!  I spent the night in the ER.

Mark is at the hospital at 9:00am the next day to see what is going on.  I had texted him in the middle of the night letting him know that they are taking me to The Mayo Clinic now, the St. Louis hospital wouldn’t accept me.  The doctors at this hospital told me that they didn’t want me to ride in an ambulance for 8 hours so they were going to try and helicopter me out.  At this time, the hurricane was coming through our area so we had to watch the weather to find a time to get the helicopter going (my luck).  About 2:00 that afternoon, they told my husband that he could go ahead and leave for Mayo and I will be there shortly after him.  I was supposed to fly out around 4:00pm.  He took off and during this time, there is an update to the weather and I couldn’t fly out until 8:00pm now.  My husband called to let me know he arrived in Rochester around 9:30pm, I told him I was still waiting and they told me it would be around midnight now.

Believe it or not, I was still there at 8:00am the next day!  This is day 3 in the ER now.  My husband was in Rochester waiting on me and the nurse came in to ask me if I thought another St. Louis hospital could look at me.  I told him that my husband is waiting on me and Mayo does know me and my complications so I’d rather just go there.  They understood and I was finally helicoptered out around 2:00 that afternoon.  I was helicoptered from the hospital to Lambert airport in St. Louis, then placed into a Lear jet at Lambert and flown to Rochester, MN.  From there, I was placed in an ambulance and traveled to The Mayo Clinic.  What a day!  I arrived around 4:30pm. with my husband waiting on me.  While I was in the ambulance, I threw up because somewhere down the line, I developed a migraine.  The nurse was pumping zofran in one arm as I was puking.  When I got to the hospital, I puked again and the nurse there gave me compazine in my PICC line during then.

In case you didn’t know, both Zofran and Compazine are anti-nausea medications that make you drowsy.  I had received both of them in my PICC line about an hour apart.  They kicked my butt!  I was dozing off every minute I could.  The nurse was asking me all these questions and I don’t know what I told her, if anything!  I do know they wanted to do another CT scan with contrast while I was there that night.  That meant I had to drink 2 glasses of the contrast before going into the scan.  I was knocked out!  I would wake up, take a drink, pass back out and Mark would yell at me to wake up and drink more!  I managed to get my scan over with (not sure how) and slept for the rest of the night, kinda.  The nurse tried her best to wake me up to get my vitals 3 times in the middle of the night and it was like wrestling with a sloth!  I could here her yelling at me, but couldn’t figure out how to get my arm where she needed it.  That continued until about 10:00 the next morning.  I am not like that at all, the least little noise, I’m up and looking for what it was.  I had been drugged!

Friday morning came about and the doctors came in to visit.  They said the CT scan showed the loop and abcess, however, with the contrast, they could see that there wasn’t a hole in my intestine.  The intestinal lining was thinning at that place, however they couldn’t do anything for it at the time.  So I guess I’ll just wait until it gets thin enough to develop a hole…I’m not sure I like that either.  They’re plan of attack was to just give me copious amount of antibiotics and let it run it’s course.  They also told me finally that I could eat.  I hadn’t been able to eat or drink anything the whole week leading up to this moment. I ordered that biggest breakfast I could and ate every bit of it!  The doctors did mention that I should be able to leave the hospital the next day, that made my day also!  That night rolled around and I had a new nurse.  She changed out my antibiotics and such and then I thought I heard her ask me if I wanted a back massage!!  I said, “Hell yeah” but then I knew that I couldn’t have heard her correctly and was panicking just thinking about what I agreed to!  She was looking all over the room for something and when I asked her, she told me she was looking for the lotion, then I really panicked, LOL!  After the 5 minute awkward back massage, I texted my husband, friend and daughter and told them that never I have ever received a back massage at any hospital!  Of course they laughed with me!

Saturday morning rolled around and the head of the Gastroenterology department came in to talk to me to see how it was going.  She was really nice and gave me some information and told me that I could go home!  About noonish I was all packed, dressed and ready to go!  Mark and I was on our way and ready for that 8 hour drive back home!  We rested that night and the next day, we went to see our new grandson that was born the week all this was happening.

What a week!  I was so ready to settle down get back to normal.  I’m not a fan of the hospitals because I always end up staying and feel as if I have so much other stuff to do.  It feels like a big interruption of my life and I have to play catch-up when I get home.  I really should learn to relax a bit and I’m trying.  Let me know if any of you have had a similiar experience or would like tell me something that happened out of the ordinary within a hospital setting.  Every experience is unique – never the same!  Just remember to take one day at a time with this disease and we’ll get through it together!

Chow for now,

Kelly

 

 

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

 

 

 

 

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

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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 now.  In 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 happen.  I 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

 

 

 

Remission?

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Hello everyone!

I am sorry that I haven’t written anything in a while.  The combination of Entyvio and Stelara that the Mayo Clinic had put me on resulted in a short remission and I tried to live my life to the fullest during that time!

In March, I went to the Mayo Clinic for a checkup.  They performed several tests and came to the conclusion that I could finally get my drain removed, my fistula had closed thanks to the combination of the two meds!  I was so happy!  I could finally soak in a bathtub!  When I got home, I felt great!  I had a doctor’s appointment in April and the doctor told me since I was gaining my weight back and keeping it on, that I could stop the TPN!  They still wanted me to keep the PICC line in and monitor me to make sure everything will be okay (I’m glad they did, later on).  The doctor did prescribe a couple of bags of saline in case I felt dehydrated, I could just hook myself up to rehydrate.

During this short remission, I lived like I was on borrowed time, (and I was)!  I ate what I wanted to eat, drank what I wanted to drink and my house had been cleaner than it ever was!  LOL.  I had so much energy and I was so happy that I could finally feel like a normal person for a change, I even signed up for a lot more volunteer opportunities this summer!  During this summer also, my husband was traveling a lot for work and I would have to take care of the house inside and out, so then was a good time for this remission to happen.

Around mid-summer, I was sitting on the couch late at night and I felt something very familiar.  I felt a little air pass through where my fistula once was.  I wanted to dismiss it thinking it was my imagination, however, I knew deep down that there was a possibility that my fistula was coming back. — So, just to recap exactly where this fistula was, my small intestine (or what was left of it) had dropped down and attached itself to my bladder fusing my small intestine to my bladder.  Before I had taken the meds, the fistula was causing my small intestine’s contents to leak into my bladder, therefore, I was urinating feces while “urinating” causing severe urinary tract infections.

I kept a vigil every time I felt something that wasn’t quite right. I would note what I ate, what I drank and when I would feel that feeling.  At first it was maybe once a month I would feel some air leakage.  Then it got a little more frequent as time went on.  I then started to notice some symptoms of a urinary tract infection (burning, feeling as if I to go frequently, etc.)  At this time, I had a doctor’s appointment with my gastroenterologist.  I told her my story and what I was feeling at that time.  She ordered a urinalysis and told me she may change my medicine up next visit.  The urinalysis for a UTI came back positive.  So, for me that means my fistula is returning and is leaking again, not sure what the doctor thinks yet.  She ordered me some antibiotics for that UTI.  The UTI disappeared but now I feel as if I may have another.

I am not ready for what the future holds for me quite yet.  I still have a lot of living I want to do.  I am also trying not to get so down on myself because I know it won’t help anything.  This disease is so horrible and unfair, it lets you feel good then shoots you back down without any warning. There is at least one good thing that has happened to me this summer.  I made a new friend who has Crohn’s Disease also. I know I can talk to her when it starts getting too much for me or just to have someone there who knows what I’m going through and how I’m feeling.  Of course I can do the same for her.  I do believe that God puts the right people in the right place when it is needed the most.

Again, I’m sorry that I haven’t written in a while, but I had to get my time in while I could!  I hope that everything is doing well with all of ya’ll.  Remember to take this disease one day at a time, as I need to take to heart now. Please keep me in your prayers. I have asked God for one more favor and I know it will come to light when the time comes.

Chow for now,

Kelly

The Mayo Clinic

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Hello everyone!  I hope this post is finding you doing well.  I’m still chugging along.  In this post, I will tell you about The Mayo Clinic, how I got into it and what happened the week we were there.  The way things are done there is so different from what I am used to from all the other places I’ve been!

In my last post, I told you that my G.I. surgeon told me that he would talk to some of his contacts about getting me into The Mayo Clinic.  Well, I waited and waited and on occasion I would drop him an email to check the progress and to “remind” him if nothing had been done yet.  In the meantime, I have a drain in my bladder that the doctors told me I would have to keep in until I see someone from Mayo.  I was getting anxious to see someone and get this thing out!  One day, I was sitting at the computer and decided to look up The Mayo Clinic to get some information about it.  As I was scrolling, I noticed there was a button on the right that said, “make an appointment.”  I thought to myself, “It can’t be that easy to get into Mayo because my doctor is trying and can’t even get into it.”  So I push the button to see what would happen.  Low and behold the page was asking for my information and what time would be a good time for them to call me!  They called me the next day and I made an appointment to see them!  When I thought about it, I became furiated at my surgeon because supposedly he had been “working” on this for 8 months and kept telling me that it was difficult to get in and I just pushed a button and made an appointment all in a day!  

Within a couple of weeks, The Mayo Clinic sent me a schedule of tests and consultations that I will be going through during our visit.  It was a whole week’s worth (Monday-Friday)!  I had all kinds of consultations with several doctors and all kinds of test, some I’ve never even heard of!  This had just become real to me!

We went up to Rochester, Minnesota on a Sunday because my first appointment was early Monday morning.  It took my husband and I around 8 hours to get there.  When we arrived at the hotel, I noticed they had a shuttle sign-up sheet to go to and from Mayo. Nice.  We put our things up and left to find food.  We tried one of Minnesota’s staples – cheese curds.  They are delicious!!!  Everytime we go there now, that’s the first food we look forward to eating!

We get to The Mayo Clinic and WOW, this compound is huge!  Even though it is huge, it is so easy to manuver around.  My initial consultations were an hour long.  The doctors literally ask every question you could think of.  They were thorough in everything they asked and they actually listened to what you had to say.  Throughout the week I also had all kinds of tests such as MRI’s, CT scans, drain checks, blood draws, ostomy checks, colonoscopies, endoscopies and others that I never had before and can’t remember the names of the tests.  I literally felt like a guinea pig after the week ended but we learned so much about how Mayo works.  We love that place!  Since then, we have been back 3 times.

The Mayo Clinic is definately worth a try if you feel your care needs a boost.  My Crohn’s has been a trouble maker every since I turned 40.  I’ve had this since I was 25 and it seems like the older I get, the more troublesome my Crohn’s gets. I will definately go back because I love the way the people treat me.  They actually listened to what I have to say about what is going on with my body.  The next post will tell you what recently happened during a surgery that I had at Mayo.  If you have any questions about Crohn’s, Colitis or Mayo, please feel free to ask! I have also added a link to the Mayo Clinic to the right of my post if you would like to view their website.  Remember to take this disease one day at a time.  Right now, I need to take my own advice.

Chow for now!

Kelly

My Follow-Up Appointment

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Hello everyone!

How are ya’ll?  I hope this post is finding everyone in a good place today.  Me, I’m doing well.  In this post I’m going to tell you what happened after the doctors told me I couldn’t eat any food by mouth and what I did about it, what my surgeon was going to do for me, along with a lot of things in between.  Here we go!

While I was in the hospital for the week, they were tweaking my TPN bags to up the nutrients and vitamins so that I could totally rely on the bags for food and not any real food.  I begged the doctors and surgeon to at least let me eat a small snack here and there.  They finally agreed.  Later on, they would let me eat 1 small meal a day, then 2 small meals a day til I’m back to fully eating all meals.  The reason they didn’t want me to eat in the first place was because the food was going through my fistula in my colon and into my bladder then my bladder had a hole in it so it ended up everything that went through the fistula would be going out through my bladder and into my abdominal cavity, therefore causing an abscess.  I have to really watch my eating now and not get too full or else the food will go through the fistula (and it hurts).  I have a drain in my bladder, so it catches some of it before going into the abdominal cavity but I try not to get stuffed.

When I was discharged, the surgeon told me that he was going to refer me to the Mayo Clinic.  Supposedly he knew some people up there that he could refer me to.  That gave me some hope at least.  I came home with 7 TPN bags (one for each night).  I was home for 2 days when I wasn’t feeling very well.  I could not catch my breath and my breathing was erratic.  At the same time all this was happening, my husband Mark had just accepted a promotion.  He was honestly thinking about not taking it because it meant he would have to travel some and he wasn’t sure about it because of my health.  I assured him that when he had to travel, I would have a few people lined up in case something was to happen.

When he was scheduled to travel to Mesa Arizona for a week is the day I had a follow-up doctor’s appointment.  I couldn’t drive because I wasn’t feeling well and I was short of breath so my daughter, Isabella drove me.  When we got into a room at the doctor’s office, the doctor took one look at me and told me to go straight to the ER and don’t pass go!  Bella took me to the ER and she had to wait in her car because the hospital still had Covid rules – patients only in the ER except for minors of course.  When I checked in, I told the nurses my symptoms and they told me to have a seat.  I sent Bella home after an hour and I sat there for 3 hours in the ER and couldn’t hardly breath.  I’m not lying, I honestly thought I was going to pass out!  Finally, they called me in for an EKG and blood work.  My heart rate on the EKG was everywhere on the charts and my potassium was a 6.6 (normal rate is 3.5-5.0).  A 6.6 can cause a heart attack and/or sudden death.  They immediately brought me back to a room and gave me a huge syringe full of dextrose to bring my potassium down.  During all this, Mark’s plane was about to take off and I was constantly giving him updates.  My mother was supposed to come up for the week and spend it with Bella and me.  I had to call her and let her know the situation, but she still came up.  I spent 4 days in the ICU after just spending a week in the hospital a week earlier.  The diagnoses was too much potassium was added to the TPN bags causing me to receive too much potassium.  During my stay, they tweaked my TPN again and sent me on my way home.  I felt like a guinea pig waiting for something else to be too high or low sending me back to the hospital.  Sure enough, when Mark leaves, all hell breaks loose but we muffled through it!

I do have to tell you something that happened in the hospital.  When I got wheeled up to the ICU, I had a guy nurse.  He told me his name and I about flipped out!  He was one of the nurses that took care of me 2 years ago when I had surgery!  He remembered me too and we talked about him and my husband talking about hunting and everything that had happened since.  At least I had a friend to talk to in the hospital.

That sure was a hectic time in our lives but we seemed to make it through okay.  Bella ended up  having to take care of the house and dog for a week while I was laid up in the hospital.  I felt so guilty about that.  Bella, mom and I was supposed to spend the week together and do girl’s things, I felt responsible for that not happening also.  I told Mark not to worry about me and go ahead and take that promotion and I’m sure he was worrying about me all week while he was in Arizona, I felt bad about that too.  Sometimes with this disease, I feel as if I let a lot of people down and I get a little depressed about it.  I know they are used to it by now, but they shouldn’t have to be.  I thank God that I have such a great family and support system, I hate to think what I would do without them.  I just have to remember to take this disease day by day.  If you have any questions or comments, please ask!

Chow for now,

Kelly

God’s Not Finished With Me Yet!!!

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Hello everyone!  Hope everything is going well your way!  Mine has been very interesting to say the least.  Not something that I would like to relive…ever!

It began in March when I began to feel not – so- great.  I was in the middle of a flare from my Crohn’s Disease.  I was kinda getting nervous because I knew in another month our family was scheduled to go on vacation in Las Vegas and I didn’t want to be in the middle of a flare.  I went ahead and took the maximum amount of steroids that I could take and that took care of my energy, however, I still felt a pain in my right side.  I can live with that, right?? 

During this time, my mother – in – law had been in the hospital for multiple issues.  On one particular day I was feeling better with my flare and decided to visit her in the rehabilitation unit she was in.  While I was there, she received some bad news of a set back and she needed to be transported to big Barnes to get some testing done.  All of the sudden, I felt an all to familiar pain in my back but I kept it to myself because I was trying to be strong for my mother- in-law.  When I got home, I laid down for a while and the pain subsided a little but was still there.  In the morning, I called my doctor and described my pain to her over the phone.  She told me since I have a history of these, my best bet would be to go straight to the ER.  I did and I was right – I had developed another blood clot in my right lung again!  This would make the 3rd PE blood clot in a year!  God definitely has something bigger and better in store for me! I was in the hospital for 3 days.  Need I remind you that my mother – in – law was still in the hospital also, therefore, my husband had his wife and mother in two different hospitals at the same time!  He could get no rest, bless his heart!  I was put on Coumadin again.  Now, Vegas was really getting too close for comfort to have any hiccups!

Vegas was fun, however the first day I was there, either I twisted my right knee or my arthritis was really acting up.  I mean I was in a lot of pain with this knee and could barely walk the rest of the time there!  To subside the pain, I took a lot of Advil that I had brought with me and that still really didn’t work.  I tried not to let that stop me from having a great time but it was always there with me.  The day after we got back from Vegas, I noticed a lot of blood in my bag and was kind of frightened with what I saw.  My home health nurse came that day to check my PT/INR and other blood tests as well as to change my dressing.  She just about freaked when my PT/INR turned out to be 7.3!  The normal range for me is 2 -3.  My blood was extremely thin and she told me to not get cut or fall or else I could bleed to death!  When she changed my dressing, she noticed that my stitches had somehow popped again and my catheter was just hanging there!  I just got this thing replaced back in February and now it has popped again!  That turned out to be the least of my worries..

That night I continued to lose a lot of blood through my ostomy bag.  I felt light-headed and dizzy and my heart raced when I stood up.  I continued to feel this way throughout the night and into the morning.  That next morning, my home health nurse called and told me that my hemoglobin (blood) count was an 8.1 and that I should go to the ER (normal range is 12-15).  She told me that the doctors usually order a blood transfusion at 8.0.  My GI doctor also got these results and she told me to go to an ER pronto!  I went to the nearest one to my house.  I really shouldn’t have driven in the state I was in but I was okay sitting down and driving, it was when I had to walk from the parking lot into the hospital where I had problems.  They got me settled in an ER bed and gave me a unit of blood because now my blood count had dropped to a 6.8!  About 45 mins later, I lost a lot of blood through my bag by emptying it 3 times in a row!  The second time, I nearly passed out, thank Heavens I had a friend sitting with me that could notify someone!  During this time, my ostomy bag decided it had enough and it blew!  I literally was sitting in a pool of blood!  It looked like I was a victim in a crime scene!  I broke down while I was trying to clean myself up because I was’t feeling well and this was a lot to deal with at this time.  An all-time low for me..I just wanted to go home and jump in the bath.  The ER doctors decided that they couldn’t do much more for me so I was to be transported by ambulance to SLU Hospital in St. Louis.  I waited forever until a bed was ready at the hospital then had to waited a long time for an ambulance to take me..

When I got to the hospital, it was 12:30am.  They drew some more blood and this time my blood count was at an all-time low of 5.3!  I was losing blood pretty rapidly.  Early the next morning, I received 2 units of blood.  They diagnosed me with an active GI bleed.  That day they scheduled me for an endoscopy and colonoscopy so they could try and find out where the bleeding was coming from.  They couldn’t find anywhere that I was losing all this blood.  Ultimately they decided to chalk it up to the combination of the Coumadin I was on along with the massive amounts of Advil I took for my aching knee in Vegas.  That day I learned not to mix Coumadin and Advil!  They kept me there to monitor my blood count and to make sure it wasn’t going to go down anymore.  My blood count kept around 7.0-7.5.  When I was released last night, my count was 7.4.  I still have a way to get to the normal count of 12-15 but I am trying to eat foods that are rich in iron so that I can get my strength back.  Right now I am pretty weak, just taking a little bit at a time, but I’ll make it!  Before they released me, they sutured up my catheter so I wouldn’t have to go to another hospital to get it done.  Again, my mother – in – law is still in the hospital/rehab and my husband again had his wife and mother at different hospitals at the same time!  These past 2 months has been boogers for our family to say the least!!

Please pray for our family, we need all we can get at this time..I am so blessed to have such a great support system!

Chow for now!

Kelly

New Year’s update

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Hello everyone, hope ya’ll had a very Merry Christmas and a Happy New Year’s!  Sorry I have been in somewhat of a hiatus lately, just trying to get through the holidays.  There isn’t a whole lot going on with my health but there are some things I would like to mention.

Back in December, I had gone to a wedding.  During the reception, there were some people out on the dance floor looking as if they were having a really good time.  I was sitting at a table and watching them laugh and carry on.  Someone who knows me quite well and that I haven’t seen in ages came up to me and told me that the Kelly he knew would be the first person on that dance floor, no doubt about it.  Truth is, he was right.  I would be the first person on that dance floor, without a care in the world back when this disease hadn’t yet consumed all of me.  It’s as though most of my fun had been sucked out of me.  I just have so much to remember and worry about with all that is currently going on with my body.  I can’t just spend the night somewhere because I have to pack all my TPN supplies and then an extra set of ostomy supplies in case the bag that is on me should have a blowout.  I can’t plan anything that involves going in the water because of my catheter dressing.  I’m just not the carefree person I used to be any more.  I try, and I try my best to be fun loving and outgoing but where it used to come naturally, I have to try my best to block out worries and have a good time.  Sorry for the pity party it’s just when others see what I feel it just confirms my fears.

I also had a lung scan performed in December to see if I could get off my Warfarin.  I read the results online before I went in to see the doctor but wasn’t sure what he was going to do with this report.  The report read that the clot was still there as before, however, no new clots were present.  I, as well as my home health nurse figured he would keep me on the Warfarin until the clot has dissolved.  The day of my appointment, the Hematologist told me “congratulations, you can get off your meds!”  I then asked about the clot that is remaining.  He said the clot is surrounded by tissue and is going nowhere.  He then told me that there is a small possibly that the clot could come loose and go somewhere!  I didn’t have a warm-fuzzy feeling when I left his office..I got a second opinion also and they told me the same thing.  I know me, and if there is a small possibility the clot could come loose, it will!  

 All in all I have been chugging along pretty good, just little hiccups here and there.  I did read in an article that there are natural probiotics in Tequila of all things.  I have been tempted to take a shot a day, but I really do not like Tequila very much!  Maybe I will and get back to ya’ll and let you know how it works!  Currently, I have a bad cold and I’m hoping and praying it doesn’t turn into pneumonia (it has many times before)!  Of course my husband gives the cold to me and he is over it within 3 days versus when I get it, it lasts for 2 weeks due to my compromised immune system!  All I can do is take one day at a time and hopefully come out better!  Please keep me in your prayers as I will keep you in mine.

Chow for now!

Kelly

My Hospital Stay With a Blood Clot part II

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Hello, it’s me again with part 2 of my post about the blood clot in my lung.  In this post, I will tell you about my experiences in the hospital.  Boy, are they a doozie!

To start out with, they gave me dilaudid, a very powerful narcotic that made me hallucinate (I cannot have morphine because I’m allergic to it).  Every time I looked at someone in the room, I believed they had big, black bugs and birds dive bombing their heads!  I actually told my daughter and her father to watch out, they had bugs and birds flying around their heads!  They looked at me like I was crazy, and I was at the time! How embarrassing.  I did find a way to not embarrass myself again like that – even though I could have sworn I seen these bugs and birds around people’s heads, I just told myself it wasn’t real because if it was they would be jumping and yelling like crazy.  It was hard not to warn them, but I just kept that secret to myself the rest of the time I was on that drug.  I was afraid they were going to send me to the funny farm!

I honestly don’t know which system, the digestive or the respiratory that hurts the worst.  I would get these pains in my back/side that would feel as though something was electrocuting me at that spot with tiny needles.  Then I would also feel as though I was having back spasms in that area.  I also had what they called Pleurisy which is fluid between the layers of the lung itself.  I could not lay on either side of my body, when I did it hurt so bad and I would get anxiety because I would be grasping for air.  I could only lay on my back which was a bummer.

One time there was this CNA who was taking my vitals and I had asked her if she could get someone to help me scoot up in the bed.  She told me that she would help out before she got someone.  She started having me flip on my sides and all the sudden I was in full panic mode!  It hurt so bad when she flipped me on either side of my body and I couldn’t even get in the air to scream!  She ran to get the nurses and they tried to calm me down and breathe and when that didn’t do, the nurses  ran to get a doctor.  I had never felt so much pain and to not be able to breathe was painful too.  Finally, after cranking up my oxygen and giving me some pain meds, I started calming down a bit.  I would not wish that upon anyone.

There was this one night there, I believe the second night I was there that the nurses collected around 5000ml of urine from my catheter.  They told me the next morning that it was equivalent to 10 pounds of fluid!  I lost 10 pounds that one night!  I was for some reason very swollen up the day before.  I also had this weird low grade fever I couldn’t get rid of and they wanted to ship me to the big Barnes in the city.  They told me I was the number 1 person on the waiting list and I begged them to let me stay.  Luckily for me, after all that fluid was released, my vitals started getting better and got off the list!  Oh yeah, the dye from the ct scan in the ER hurt my right kidney and threw me in kidney failure.  Sometimes, I believe if I didn’t have bad luck, I wouldn’t have any luck at all!  So in the midst of all the lung problems, I had to worry about kidney failure.  They were actually talking about putting me on dialysis at one time!

Finally, I was getting a little better after 8 days in the ICU so the nurse taking care of me asked me if I wanted her to do my hair.  She was a hairdresser previously and she knew it would make me feel better if I could do a little something to myself.  I am not the one to turn down any kind of pampering so she washed my hair and after it dried, she french braided it.  I felt like a new person!  The next day I was transferred to a regular room for 4 more days of recovery.  There I was to gather my strength so I could walk and to get off the oxygen.  The first time I walked the hallway, I had a walker and my oxygen tank with me.  I felt like a little old lady!

 

The nurses there were all so nice and pleasant to me, even the doctors, the people who took my vitals and the lunch ladies.  I have never had such great care from all the many hospitals that I have been in.  There was this student nurse that helped take care of me one day.  Her name was Bethany.  She was the nicest person – she would peek her head in every 30 minutes to see if I was okay or needed anything.  When she found out I had an ostomy, she asked if she could watch me drain it and then she had 20 questions afterward.  She told me that she hadn’t come across a person with a bag yet in her internship and she was fascinated with it and giddy.  I wish I could say the same – although I have come to get used to it now.

Finally after 12 days I was released from the hospital.  The weekend before I was released, my daughter Bella spent the night with me.  We had a girl’s night in room 435 that night and I loved every bit of it!  The doctors believe the clot came from the catheter that I had replaced back in February.  They believe a clot may have formed there, then was knocked loose somehow and it traveled to my lung where it grew larger and cut off my blood circulation and part of my lung died.  I don’t think I will get this one replaced ever again..I am now on a blood thinner for at least 9 months, maybe more.

I want to thank everyone who prayed for me.  I really needed all that I could get that night and throughout my hospital stay.  I would love it if you could continue praying for me, I obviously need all I can get. I still have the clot in my lung, it’s just dissolving slowly and will be absorbed in my system.  I’m not dare going to ask what’s next, I don’t want to know!  I’m just going to take one day at a time, as I still get winded walking inclines or up the stairs.  Right now I’m taking the elevator until I can get myself built back up.  Thank you again for all your prayers and thoughts.

Chow for now!