Steve_v3

My wife & daughter stumbled into some cleaning up in our yard. they needed to go on steroids to finally clear it up. Nasty stuff.

My last procedure is looking like it’s not going to work. Going for a CT scan and liver biopsy this week. As long they don’t see anything different, I’m most likely headed to major surgery. The surgery involves a resection of the liver and creating a new connection between the liver and small bowel. It’s a 8 hour surgery with a incision about the same as my transplant scars. needless to say I’m anxious and nervous about doing this.

I’m in the hospital and waiting to get my latest procedure. This will hopefully help get rid of my drains. Unfortunately My luck with roommates has continued. I had a private room on Monday night because they were waiting for my COVID test to come back. Once it was negative I was moved. My first roommate was clearly altered and got worse as the day progressed. So they moved me to another room. It was around 11:00 so I tried to get some sleep. At 12:30 my roommate decided it was a good time to watch Rambo 2. I finally feel asleep around 1:00. Only to wake up at 3:30 with his light on and tv blaring again. Plus the heat was turned up to 80. So I’ve been up since then. But now he’s sleeping with his tv off. Sleeping is tough enough in a hospital, but yikes.

First and last pair of shoulders I have. Bauer Flak. I got them in 1989, when I first started skating in a rink. They're so comfortable that I can't imagine using anything different. My Mother in law is my personal equipment manager. She's sewed up holes and changed the straps multiple times.

Not fun. My wife has been diagnosed with it too. Very frustrating.

Glad to hear you caught it early.

It’s a great time. My first time spending the weekend with everyone was awesome. Highly recommend going for the weekend. Hoping my health can finally get in the right direction so I can come back, even if just to hang out with everyone.

Unfortunately I’ll be out again. Health hasn’t been very cooperative lately and likely will be dealing with stuff for a while. Hopefully everyone has a great time.

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

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.

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.

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.

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.

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.

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.

Tough situation. I would’ve thought there would be opportunities to play.

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.

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.

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.

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.

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.

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.

I almost asked for earplugs. 😉

And he’s snoring........🤬

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.