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!
This past week I found out from my last blood work that my iron count is still really low (28). The normal range is 40-140. I’m not sure what is going to be done with this yet. During this time, I decided that I would try and decrease my Entecort steroids down to one capsule a day because I was feeling better and I don’t like to be on these any longer than I have to. Steroids have many side effects and the longer you are on them, the more damage they can do. Boy, was that a mistake! From the day I dropped down to one capsule a day, I started feeling really fatigued and sluggish. A couple of days had passed then all of the sudden it hit one day really early in the morning. Let’s put it this way, I had to muster enough energy and strength to take Bella to school and afterwards I went straight to the couch and didn’t move for the rest of the day (until I had to pick her up). I somehow figured out what went wrong and quickly took the maximum amount of steroids I could take (3 capsules a day). The next day I was feeling a little better and by the day after that, I was back to my old self. So now I realize that one capsule was not enough and to not do that again for some time now. I was doing good with 2 capsules so maybe after I get better with 3 again I will try to get back down to 2. This is a prime example of taking this disease one day at a time – you never know from day to day what this disease will put you through.
Hello everyone, I hope ya’ll are doing well! First, I would like to share something that I had seen since my last post. In that post, I was talking about handling stress and how it affects my Crohn’s Disease. Right after that post, an article came across my FB page saying how stress may worsen Crohn’s Disease.