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Chronic Pain
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Posted 8/26/2012 8:33 PM (GMT 0)
You guys totally get how each day can go downhill fast. Last week I spent a few days inpatient. I had some pretty major vomiting episodes-probably from the Cytoxan. Managed to use enough force to have the gj tube fall out, even with the balloon inserted.m ended up shoving it back in 3x before I saw an er dr. They tried to place a new one in IR but it ended up failing. Thought is that with the steroids and Cytoxan, the whole in the stomach won't heal enough to hold the tube. Saw my Gi outpatient and we removed it or good. Both he and his nurse said they would pray for me-love them.

So- thought that would be the end of the medical fun. Nope. As I was getting ready to leave I got crazy dizzy. Checked pulse and it was 157. Dr wanted to call EMS but his office is super close the hospital. I know it was very stupid, but I drove myself. Gi was not pleased. He called ahead to the er with what was going on. He had consults to do at the hospital so I knew he was going to check up on me. So, got as far as the front desk and was taken to a room right away. Got the evil eye from many people. Pulse was between 145-160. I was admitted on Fri and here I sit. Drs think its a combo of pericarditis and pain. I've said before- pain does way more than just hurt.

Hospitalist has been great. Right now I'm alternating between iv morphine and the 15mg of oxycodone I take normally at home. My pain dr will be by in the am. Both are holding off on major med changes until the cardio puts a plan together. I had a stress test yesterday that was good. Since I can't use the treadmill, they injected the med that speeds up the heart. Dr was waiting for some reaction and asked if I felt the increase. Turns out the pulse was so high to begin with, I never really felt the change. So, that was not good, but no blockages.

Steroids will be increased again tonight. Not happy about this. Anytime I get below 40mg, everything acts up. I was down to 35mg. Hate the cycle.

Not sure what will be done pain wise. In a way it's nice to have "proof" that I hurt. Scans and surgeries provide visible proof and the tachycardia just backs it all up. Pain dr and I have worked so hard to decrease the pain meds. I really don't want to add more, but I can't pass out with a pulse in the 145-160's.

Do you guys have the funky pulse?
Posted 8/27/2012 12:57 AM (GMT 0)
Oh my, that's just horrible to read, I hope you get out of there soon and they get your heart problems taken care of. Looks like you have your smart phone or something to keep you company lol, I'll be doing the same thing when I go in for my fusion next week, seems like hospitals are getting less picky about that kind of stuff around all the heart monitors and other equipment. Well, I hope your not having to rough of nurses and they're treating you well. Take care, and keep us posted.
Posted 8/28/2012 12:55 AM (GMT 0)
Today was crazy. Cardiologist scheduled a ct of my heart. I've been monitored 24/7 since being admitted. He went back over the last few nights and said I was in the 160's quite a few times. To do the scan, pulse needed to be in the low 70's. Dr decided to use Lopressor. After 6 doses pulse only made it to 91. So, no scan. Dr wants to avoid a cath since I'm so young and there are risks involved. Tomorrow my pulmonolgist is being pulled in. I'm having lots of pain across the back of my ribs. Feels very similar to pleurisy which I've had in the past. Really hoping to be discharged soon. This is my son's last week of summer. We are supposed to be hanging out in the pool and thn driving to KY to see my best friend and her family. Instead we'll be hanging out at home. At least I want to spend it at home.
Posted 8/28/2012 1:00 AM (GMT 0)
Hi Rocc

Wow you have a lot of serious stuff going on for your young age. I sure hope they get you on the right medications and soon. At least you are in the right place with such high heartrates. It's best to be there and be monitored.

Keep posting with us and let us know how you are doing.

Hope you are able to get some good rest while in the hospital.

Take care

Suzane

Posted 8/28/2012 9:43 AM (GMT 0)
Hi there

Just wanted to say how sorry I am. I hope they manage to set out a plan for to soon. I agree with Suzanne, you are most definitely in the right place. Home is not the right place for a pulse rate like that.

My problem is usually the opposite, low BP and low pulse. I can't imagine what it feels llike to have that 24/7! Must be painful any worrying. You have to have it all dealt with soon.

Take good care

Jane
Posted 9/2/2012 9:09 PM (GMT 0)
Finally home.

Crazy inpatient stay. Nobody can figure out why the pulse is so high. When discharged it was in the low 100's. Not ideal, but better than 150-160. I'll stay on the Lorpressor and see the cardio this week for a followup.

The site where the gj was placed began to cause a ton of problems. According to the GI, the hole where the tube was placed should have closed after 2 days. A week later, it was still there and actually larger. Tons of stomach acid was leaking and killing the skin. Plus, anything I take it, comes right out of the site. Kinda like a keg :) Very very painful... Hospitalist asked for a gi consult. I was glad that it was a dr I had had in the past. He told me he had never encountered this problem before. On thurs he did an upper endoscopy. First off, this is very painful for me. My opening is teeny due to the tmj replacements. I managed to open wide enough for a pediatric bite block-but just barely. In recovery he told me that he found a 5-6mm hole in my stomach wall. This explains the crazy amount of acid and fluid coming out of the site(gross, I know!). To repair the stomach would require another surgery. Since I don't heal, we don't want another surgery. So, he placed a nj tube. This goes thru the nose and totally bypasses the stomach. The hope is that by letting the stomach rest for a few weeks, it will heal itself. I'll get formula thru the tube at night for nutrients. I really really hate the nj. I hate anything that makes illness obvious. Yesterday a good friend of mine came and took me to a movie. She knew I was embarrassed about being out in public, so the sooner I faced it the better.

Obviously, my stomach really really hurts. Love my pain dr. On Friday, after discharge, he told me to come straight to the clinic. He stayed late on Friday to make sure I would be as comfortable as possible. He switched up some prescriptions and sent me home with a huge hug. I wish I could clone him for you guys.


Now it's a waiting game. I see the gi and the wound specialist this week. I'm supposed to go to Duke Thurs for another infusion. Not sure if that will happen. If I get crazy pain in the stomach I'm to go back to the ER. Today and tomorrow will be spent doing absolutely nothing. My son will come back home tomorrow night. First day of school in Tuesday. I miss him like crazy, but I also need to recharge. Can't wait to have him back home.
Posted 9/2/2012 9:56 PM (GMT 0)
Hello Rocckyd!

…what a horrible ordeal for you! I just hope the procedure will heal as planned. I have read most all of your post concerning the jaw TMJ problem, and it sounds like a major deal with many complications. I suffer from tmj, but not to the point that I have had to have it treated. It is a worry though, and have had a flair a few times,….and as you well know that is miserable. I don't' know how you do it!

Were grateful that you have a caring PM there to treat you, and were you able to enjoy the movie?

Take care, and thanks for the update.

SE wink
Posted 9/3/2012 3:16 AM (GMT 0)
Hey Rocckyd,

Sorry to hear about all these things going on for you! But I'm glad you are home... and hoping you will continue to feel better.

I have something called POTS - which is postural orthostatic tachycardia syndrome. My "resting" heart rate is 100bpm... and that's on 200mg of Atenolol (a beta blocker). If I do any activity - meaning anything...from climbing stairs to even walking briskly - my heart rate is in the 150's to 160's. When I'm really sick - pulse usually spikes to the 190's to 200's.

Anyway - just something to ask the cardio about.... let us know how that appointment goes.

I'm sure you do miss your son like crazy.... whenever I have a hospital stay - my heart aches for my kiddos. But right now - the best thing you can do is just rest as much as possible, considering all you've been through. But I'm sure you'll be excited about giving him a huge hug tomorrow night!

Anyway... thanks for the update and I really hope you feel better w/ everything. Update us when you can.

-Tina
Posted 9/5/2012 1:54 AM (GMT 0)
Thanks for all your kind words and support.

Home health came by today to check on the old gj site. Still looks awful and is crazy crazy painful. The nj tube has helped since now my stomach is empty. Much less acid is being produced so there is less to leak on the skin. But, there is still some and it kills. I drank about 8oz of water this evening to see if there had been any healing and, nope, water came right out about a min later. OUCH! I see the GI tomorrow. Pain dr called me this morning to see how things went over the 3 day weekend. He stayed late for me on Friday so I could see him after I was discharged. Told him it was rough, but I'm doing ok.

Heart rate was high again today. The thought is that it is due to inflammation. Percarditis was not visible on the echo, but dr thinks it's still there. My sed rate was slightly elevated even with the steroids and immunosuppressents. I see the cardio next week unless he wants me sooner. I'm to call Thurs. with pulse/bp.

Tomorrow I drive down to Duke for an early morning infusion on Thursday. It'll be a long day. Then I have a 7:30am appointment Friday with the rheumy. He's totally booked but wants to lay eyes on me after these last few weeks.

THanks again for the support. I've hurt pretty much every day of my life since I was a kid when all this began. But, this stomach mess is a level of pain I haven't ever had to deal with before. Seriously, who walks around with a hole in their stomach?

I've made it a point to get out and about these last few days. I hate obvious signs of illness. I've become a master at hiding things. I know we all have. Can't hide the stupid nj tube. My son asked me what should he tell his friends. I told him to say this his mom's stomach is sick so she can't eat for a while. When I picked him up for daycare, he said his friends thought it was cool since I don't have to eat vegetables. My son then told me he thought it was cool since he can eat all the ice cream and not have to share. The things that make an 8yr old happy.

Hope you are all having as painfree a day as possible. So many are having hard times.
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