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Steve_v3

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Everything posted by Steve_v3

  1. Well I’m back in the hospital with yet another infection. Most likely around one of my drain sites. Because of everything I’m been tested for the flu and it came back negative, but they decided to do a more sensitive test. The good thing is I got a private room. This week I’m scheduled to have my drains changed out. I’m getting general anesthesia because they are going to be more aggressive with dilating one of the drains that doesn’t want to stay open. at least I feel things are moving in the right direction. Hopefully I can get these out by the summer
  2. Well I guess my body decided the proper way to ring in the New Year was from Umass Memorial medical center. Woke up yesterday with a fever and by the end of the day I was admitted to the hospital. Thinking the IV antibiotics will kill whatever is making me sick. With any luck I can go home tomorrow.
  3. Thanks. I’m home now & feeling better. This year has definitely been the toughest of my life. Even in my transplant years it was pretty cut and dry. I got really sick then I had my transplant and slowly got better. This year of downs has taken it’s toll. As soon as I think I’m making progress something brings me down. I got some positive news about my labs, they have looked better. Almost normal. So without getting too excited, maybe the drains are working as expected.
  4. This past week has really tested me. First I had my yearly colonoscopy. That ended up being the highlight of the week. That night I had trouble sleeping because my drain was feeling very sore. So I decided to take some pain meds to help me sleep so I’d feel good for Thanksgiving. One of the wonders of having liver disease is liver itching. It’s usually when your bilirubin is high. For me sometimes I get a little itchy when I take pain meds. Well for whatever reason I had a severe reaction and was itching like mad from 2:00 AM on Thanksgiving to late that night. I took my sleeping meds and by Friday evening I felt better. then I decided to change up to go to bed and managed to catch one of my drains on my pants and pulled it out over half way. So now it’s 4:00 AM on Saturday and I’m in the ER. My whole right side is killing me. Because it’s the weekend I have no idea what there going to do. 2019 has sucked. I’m just hoping I’m not in the hospital for too long this time.
  5. Had my drain upsized and they believe that the old drain was leaking into me. That’s what was causing my pain. So hopefully in a few days I will get back to be my normal. Now I need to keep progressing to getting these drains out.
  6. It’s just after midnight and I’m sitting in my hospital bed feeling awake. I’m still having significant pain at my newer drain site and the pain meds are only helping so much. Plus they make me itch. I’m getting the drain upsized in the morning and hopefully I’ll be in the home stretch of having the drains. this is supposed to be the last time they upsize the drain. So if everything goes right I could possibly be drain free by the end of the year. I hope so. This isn’t a fun way to exist.
  7. That’s so true. And I can understand that when you get playing time at first you need to play good because if not they’ll see you that way. You could try and find a league closer and then whoever is running the league can maybe let you know if there’s a team that needs players. When I played a lot there were always teams that were short guys constantly.
  8. Tough situation. I would’ve thought there would be opportunities to play.
  9. Well, I had the first drain capped on Monday and was excited that I was finally making progress. This afternoon I started having pain around the second drain site & it's not really improving. Looks like I'll have to get seen in the morning. I'm hoping it's nothing major. I just really want to be done with these drains.
  10. Coming from the job that I had for over 25 years with Vacation, holiday, & sick time it's truly mind-blowing she doesn't get that. What's even worse she gets holidays off, but only gets paid if she uses her own time.
  11. My wife started her job in May. 6 months until she can accrue it. Sadly some employers still don’t have it. she’s still looking for another job.
  12. I remember one year my employer sent out a letter during a bad flu season that they wanted people who were sick to not come back to work until they didn’t have a fever and were symptom free. Then after getting sick and being out for a week I get asked why I was out. Sometimes it amazes how clueless people can be.
  13. Well nothing in my life, medically anyways, has been easy. So this morning I woke up with a 102.3 fever and went to the ER foolishly thinking I would be home by the afternoon. Well they decided to admit me almost immediately and after 12 hours in the ER I got to a room. I’ve gotten 2 rounds of IV antibiotics and have a third running now. Of course it has to be run over 4 hours. So I’m laying in my hospital bed trying to get comfortable with an IV running and trying not to pull either biliary drain. so the doctors aren’t sure if it’s a systemic infection like I had in the spring or a minor one. The site of my drain is infected. A resident from interventional radiology removed the sutures holding the drain in place because of the infection. It was very painful to just touch it never mind cutting and pulling the suture through the infected skin. He then decided not once, not twice but three times to squeeze the area to force any infectious material out. It didn’t work Tomorrow they will need to open the area and clean it. At least it won’t be as painful So I haven’t had a fever since I got here at 7:00 am this morning. I don’t feel that bad. Just wishing I was at home sleeping. Nothing worse than feeling totally out of control of what’s going to go on day to day in your life.
  14. My doctors are keeping both drains open for now. My labs haven’t come down as far as they would like. So for now I have to drag around 2 bags. Getting labs on Thursday. Hopefully they are a lot better and can get at least one drain capped. Still pretty sore. I was really hoping to get the first drain out by November. Now I’m not sure. It’s such a nuisance carrying around these 2 drain bags. Hoping for better lab results Thursday.
  15. Check that. Roommate just showed up. Which is fine. Until his IV pump’s alarm is going off every minute for the last 20 minutes. Nurse can’t figure it out. sleep is going to be hard to come by tonight.
  16. A little update. I had a second biliary drain placed today. Not as painful as I feared. The placed it under my sternum near the top of my transplant scar. So no major muscle or cartilage to cut through. I was admitted to make sure I don’t spike a fever. If my labs are better in the morning then they’ll cap the older drain. For the moment it looks like the drain was placed correctly and is draining. hopefully I should be heading home tomorrow afternoon. It would be nice if things went like they should and be drain free by New Year’s Day. P.S. no roommate so far. That’s two thumbs up.
  17. Having been through many surgeries and procedures I feel for you. Especially when you get yourself ready to deal with what’s ahead and then the insurance screws with it. Just adds to the stress of the situation to begin with. good luck
  18. Thanks. I’ll strictly enforce a no cereal policy.
  19. Well it looks like I’m not going to be skating anytime soon. I’m not only not getting my drain taken out, but I’ll be getting an additional drain. My current drain only addresses one side of my liver. The new drain will be for the other side. The potential devastating news I got today is that if the additional drain isn’t successful then I would need surgery to attempt to open my bile ducts. It’s a major operation that could damage the major artery and cause the need for a transplant very soon afterwards. This wasn’t the information I was planning on getting today.
  20. Well to add to the kick ass summer I’ve had, while eating tonight I somehow break one of my front teeth. Not a little chip mind you, but 3/4 of it broke off. The hits keep coming.
  21. Hop everyone has a good time in Chicago!!
  22. I'm really not looking forward to the day I begin my recovery from a potential third transplant. The last time I was out of my tree with all the steroids and other meds you're on the first few days after a transplant. I thought the walls had bugs crawling all over them. I thought they had a brothel operating in the hospital. I pulled my IV out twice because I thought someone was trying to hurt me. Not fun for that time.
  23. Not surprised. The fact he didn’t skate in the third and players said he couldn’t talk. It’ll be interesting to see who Cassidy decides to put in the lineup.
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