Tag Archives: Short Gut

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

 

 

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