Category Archives: Hospital

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!

The Aftermath

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Hello everyone, I hope everything is going good for ya’ll!  For me, I’m hanging in there.  In this post I’m going to share with you what I remember the days after surgery.  There are a lot of firsts that happened this time around!

After the surgery (small bowel resection and scar tissue removal) I woke up with a NG (Nasogastric) tube coming out my nose. I’ve never had one of these before but I have certainly heard about it from a support group that I’ve attended.  I thought this was funny looking because it was taped to my nose so I had to snap a few pictures with it!  Well, I’ll tell you something, it definitely wasn’t funny coming out!  The tube extended from my nose to the inside of my stomach and it felt like it covered the whole inside of my throat and nasal cavity when it came out!

From here on out, I have to rely on partial hearsay due to the condition I was soon to be in.  So, somewhere down the line, I developed pneumonia in both lungs.  I had also developed a high fever so they thought I may have the Corona virus!  I was in the ICU when all of the sudden the doctors and nurses fully geared up for the Corona virus and tested me.  I tested negative.  As the days went by, I was placed in and out of the ICU several times.  The surgeon gave my husband the choice of putting me on the ventilator before it became an emergency or wait until it became an emergency.  Of course, my husband chose to put me on it then.

While I was on the ventilator, they had me totally sedated and tied down.  Unfortunately, I tried to pull the ventilator out so they had to put big mittens on me and tie them down to the bed.  I couldn’t even scratch my nose when needed!  There were a couple of times I actually vomited in the ventilator also.  Of course, no one would be around when I vomited, so I would have to lie there until someone came in to check on me and clean me up.

You know, when I was under sedation, I had some very weird, dark and twisted thoughts that I could have sworn I heard and were true but were not.  Just like I was living it.  Some of these were:

  • My aunt, grandma and dad were literally throwing money at the surgeon so that he would perform surgery on me.
  • Mark (my husband) decided to cremate me alive.
  • Mark and I decided to go to a voodoo doctor to heal me, however, it didn’t work.
  • Mark and my best friend, Luann dropped me off at a hospital in Louisville, KY for surgery but they didn’t stay.
  • While I was in the hospital, the doctors and nurses mistreated me so I called Bella to get me out and her and a friend busted me out of the hospital.
  • Mark put the house up for sale.

I don’t know where in the world those dreams and thoughts came from but I did not like being sedated at all.  It was terrible.  There was one instance where I knew I was in my right mind..there was a nurse, (or could it have been an angel?) who would come in my room and wipe my face with a warm, wet cloth and pray over me.  It was so calming.

To my knowledge, this is what I had endured after my surgery.  I believe the surgery itself was a piece of cake compared to what I had experienced afterwards.  Remember to take one day at a time and keep moving forward.  We are all in this crazy world together!

Chow for now!

 

Well..I’m back again but different

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Hello everyone!  I hope everything is going well your way!  I am sorry I haven’t been around lately until now, however, there was a time where my life had nothing new going on so I just placed myself in hiatus.  Now that I have had another surgery, I am back to having a lot to talk about and boy is it different from the last!

I decided to have another bowel surgery because I started having a “bloated” feeling.  It seemed that every time I didn’t chew well or I ate too fast I would get bloated and feel like I just ate a four course meal. I would go out with friends and end up not eating or drinking with anyone because I literally couldn’t fit anything down me.  I was losing a little weight because I could only eat a little at a time and I was constantly running a low-grade fever.

After delaying it for as long as I could, I finally called my surgeon and set a date for the surgery.  The date was August 3rd, 2020.  The surgeon told me that he was going to take out the dialated part of my small intestine then clean up the scar tissue (if any) as well.  A few days later I received a letter in the mail from my health insurance company informing me that they have approved 2 days for recovery in the hospital.  I thought to myself that it’s going to be longer than that, knowing me and boy was I right!

Please read my next post to find out how the surgery and recovery went.  It’s something worth reading, trust me.  Also, just remember to take each day as it comes.  We’re in this together!

 

Chow for now!

 

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

What?? Another Catheter Replacement??

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Me now!

Hello everyone, I hope everything is going well your way!  You will not, or maybe you will, believe that I had to have my catheter replaced AGAIN!  This time it was purely my fault – let me tell you the story..

So, every since winter started, I have been trying to figure out an exercise that is both ostomy and catheter friendly for me to do.  First, I tried walking/jogging on the treadmill that has been doing nothing lately but collecting dust.  I was doing good for a while, until my arthritis in my knees started creeping in, so I had to stop doing that exercise.  I didn’t do anything for a while which was really getting to me, so I thought that maybe I should try something else.  I decided I would try the yoga DVD that I had bought a year ago that was collecting dust.  I was really getting into that, and actually started to enjoy it.  I would say I did this exercise for about a good week and a half before I had to stop doing this also.  One day, my home health nurse did her weekly visit to collect blood and change my dressing.  She took off the dressing and started cleaning it, obviously not paying much attention to what it looked like because we were blabbering on like school girls.  I asked her if my catheter/stitches were red because the alcohol she was cleaning the area with was burning.  She looked down and told me that my stitches had been popped and the catheter was barely hanging in there!!  Obviously, when I did my stretches for yoga, I stretched too much and it pulled my catheter right out!  I knew I couldn’t do some of the stretches and the ones I did sometimes hurt a little so I would stop..not sure when it happened during that week.  She immediately taped me up as good as she could and called my doctor to tell her what had happened and to see what she wanted to do as far as replacement. The doctor had 3 options: 1. We could take it out and leave it out. 2. We could replace the catheter and 3. We could put a port in.  The doctor chose option 2..

So I told the doctor that this time I wanted to be sedated because I had a bad experience last time (see previous post).  They wanted to do it the next day so I had to hurry and let my husband know so he could take off work to take me..

Everything was going well until the doctor himself tried placing the IV into my arm..he attempted to stick it in a place I’ve never been stuck before (backside of arm) and of course he didn’t get it so he had to go up but this time he grabbed the ultrasound machine for tracking veins.  I told him where to look and he stuck the IV needle right through the gel and into my arm!  I thought to myself that I just may get sepsis from him doing something like that but I’m still here to tell the tale!  The next one was a gusher and he tried to stop it from pouring out by putting a clear tacaderm on it.  That was funny because it just slipped right off from all the wet blood that was on my arm!  Finally, he got the IV bleeding under control and when he left, there was blood everywhere!  There was a big pool of blood on my bed covers and drops of blood on the floor from where it dripped off the bed.  My whole arm was covered with dried blood and he just left me that way!  The first nurse that came in told me he was there to give me my blood transfusion – I must have looked confused, then he looked at me and told me that by looking at all the blood everywhere, I may need one!

May 2016

All in all, the surgery itself went well, a lot better than the last one!  If the doctor would have chosen the first choice, they would have taken the catheter out and put me on a medicine called Gadex (not sure of the spelling).  This medicine helps the inside part of the intestine (villi) grow back allowing me to absorb what is needed to help me thrive.  The one small drawback is the dosage involves one shot of this medicine per day.  It also makes you gain weight since you are absorbing much more than before.  Okay, the TPN has made me gain 30 pounds, now they are telling me I will gain more??!!  I know being healthy, in more ways than one, should be my main goal, however, I know me and it will affect me mentally if I gain any more weight!  No kidding, I have 7 big tubs of just my clothes in the basement because for every season, there are sizes 4-14 already, I cannot imagine adding on an extra size or two more!

All in all, I’m doing pretty good, despite a couple of mishaps.  I do feel like I am getting another fistula and my bag is pancaking but that is just something I’m going to have to live with right now, I am trying my best to take care of them both without having to go to the doctor.  I have to change my lifestyle again and drink plenty of fluids and so far, it hasn’t been too bad.  I know I need my doctor’s permission, but is there an exercise that you can recommend that is both ostomy and catheter friendly?  Maybe something low-key?  My main objective is to firm up some.  Just remember to take one day at a time and we’ll somehow get through this crazy world 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

 

 

 

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!

My Recent Trip to the ER (Why Me?) part I

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Hello everyone, I hope everything is going well your way.  I have had an interesting couple of weeks to say the least.  Sit back and let me tell you a story..

Well, just when I thought nothing else could go wrong..it did.  For the past month I have been feeling very fatigued – I mean I was fighting to get through the day.  Of course this is a big symptom of having Crohn’s Disease so I didn’t think much of it when it happened.  My next symptom was my aching chest and back (I tried so hard to get my daughter or my husband to rub my back but they declined; it turned out to be a blessing in disguise).  I also developed a low grade fever with all this.  It was then that I thought I could have pneumonia, as I have had this so many times and I thought I knew the symptoms well.  Boy, was I wrong on this one – there is another culprit out there with the same symptoms that I had..I will tell you the story now.

On March 29th, all the symptoms that I have been feeling started to come together and escalate. I had a low grade fever, my chest and back was aching and I felt like poop.  I told my husband that I was going to call the doctor the next day.  I called my doctor first thing in the morning and got an appointment to see her later that day.  She knows that I have had pneumonia a few times and therefore she knows what my symptoms are and listens to me when I tell her that it feels like I have it again.  She told me that she heard cackling in my back so she prescribes me a z-pac and sends me to the hospital to get an x-ray.  I was surprised when she emailed me later telling me the x-ray was clear, no pneumonia.

That night, my back on the right side was really aching badly so I put a heating pad on it.  It felt better temporarily but the pain would come back.  Later, around midnight I had gotten up to go to the bathroom and all was fine.  However, when I got up at 3:00 am to go to the bathroom, I could not make it to the bathroom without running out of breath.  I started gasping for air and began panicking!  Somehow I managed to unhook myself from my TPN nutrients and flip on the bedroom light to tell Mark to get up, we were going to the ER.  I stayed in my pajamas and just pulled my hair back in a ponytail and we took off.

 

When we arrived, thank Heavens we were the only people in the ER at that time.  They took my blood and an x-ray was performed.  The x-ray came back negative so they ordered a ct scan to be performed.  By this time, I had 2 IV’s going in both arms!  The ER doctor came back to our room and he looked a little worried (okay a lot)!  He preceded to tell us what was found on the ct scan.  They had found a large blood clot with several smaller ones in the right side of my lung. It had lodged itself near the bottom of my lung therefore cutting off the blood circulation and killing off that part of my lung.  This is called a pulmonary embolism with infarction. Immediately they gave me oxygen and started filling my IV with Heparin to thin my blood and start dissolving the clot.  The doctor told me that they were taking me to the ICU from the ER and I had strict orders not to get out of the bed for anything! They didn’t want the clot to move. This all happened so fast it was like a blur to me.  Before I knew it I had some very good drugs and a catheter in me.  They weren’t kidding when they said I wasn’t to get out of the bed!

I’m going to stop here and make this story a part 2.  I believe people, including me, tend to get bored when the post is too long.  In the next post, I will tell you about my stay and my experiences in the hospital.  Oh yeah, by the way, they said if I had gotten that massage I was sooo begging for, it could have dislodged the clot and the clot could have traveled to my brain giving me a stroke or my heart giving me a heart attack.  You won’t catch me asking for another!!

Chow for now!

 

 

My Catheter Replacement (it would only happen to me)!

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Hello everyone, I hope you are doing well today!  I just have to write you to tell you my experience with the placement of my new Hohn catheter.  It is a doozy (of course I would have it no other way)!

So, remember the last post when I said I was a bit nervous because I was getting my old catheter replaced with a new one without putting me out?  Well, obviously I had a right to be, my sixth sense kicked in…I get to the hospital and they call my name.  I go back and put a gown on and lay on this bed.  They tell me what they are going to do, but I’m still a bit nervous.  This is one of the weird parts – they have me get up and walk to the surgery room and hop up on the table.  One of the doctors put a dressing over my head just enough to see the catheter opening. He then precedes to tell me he is going to deaden it a bit and I told him “How about a lot?”

After the area is deadened (it hurt a lot during this time), he preceded to take the old catheter out and place wires in to mark its place.  It was this time another very unsettling thing happened – the doctor stopped the procedure and looked at the nurse and asked her which petal he should use!  She paused for a moment and told him to try the right one.  Then she stopped him and said “Yeah, I believe it is the right petal.”  Okay, by this time I am freaking out because I am wide awake and can hear all this going on!  My little heart is going pitter patter very fast!  After all this was over, the other nurses congratulated the one nurse and she told them she hadn’t done this in a long time!  So, the one doctor leaves and another comes in to stitch me up.  By this time, the numbing medication was wearing off and I yell “Ouch!”  The doctor then numbs me up with more shots and he proceeds to finish up.  The nurses help me off the surgery table and walk me back to the recovery room bed (weird).  At the same time, as I got off the surgery table, I looked down and saw splatters of blood all over the floor – my blood! It’s over now, so I get dressed and leave – drove myself home.

So I get home and look at what was done.  By this time the numbness is wearing off and they didn’t give me any pain meds for this.  I forgot to ask because it was numb when I left.  I could definitely tell a male placed this catheter in because it went right under my bra strap.  I cannot have the strap over the catheter or it will eventually rub itself out.  So my next step was to call my Home Health nurse because the dressing was falling off me and I was in a lot of pain.  She looked at my catheter placement and by this time I was black and blue.  It had looked like someone beat me up!  She changed the dressing and couldn’t give me anything for the pain unfortunately.  For the next week, I was taking 3 Tylenol every 4 hours and was in a lot of pain.  The HH nurse called the hospital and told them about the pain and severe bruising.  They said the bruising was from all the shots they gave me to numb me.  Nothing they can do, just wait it out!

If I ever have to have this thing replaced again, I will definitely tell them they will have to knock me out first!  There is no way on earth I will go through all this pain and suffering just to have it replaced!  The first catheter didn’t cause half this pain nor did it ever bruise but of course they gave me pain meds for that one!  I also had to go to the mall and buy a couple of strapless bras so the strap wouldn’t rub the catheter out.  It will get some getting used to wearing strapless bras constantly but I guess that’s the price I have to pay in order to keep myself healthier!  I am taking one day at a time and it is getting better now but I still have a long way to go to get back to where I was with the old catheter.  I feel as if I took one step forward and two steps back!

Chow for now!