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View Full Version : Help! Pretty concerned about this one...



serand4
11-06-2010, 04:09 PM
I've had Lupus since June. Since July I've been in the hospital or ER too many times to even count. I've had blood clots, thrown up blood, huge breathing issues. I'm now on breathing treatments and have meds that help me so most things are closer to getting under control.

My current issue is that I am having SEVER pain that essentially wraps around my abdomen not far under the breast line. It's terrible on the right side. The center of my back is just this sharp, horrible pain like someone hit me across the back with a stick. I don't know if this is kidney related or if others have had something like this. If you've suffered this or heard of it. I also have lung and heart issues so I guess it could related to that. I see a pulminary doctor on Monday who will test me and then give me feedback. After that I may see a cornary specialist to make sure my heart is okay. And of course I will call my doctor on Monday but I bet you guys know plenty right here.

Please give me feedback as soon as you can. I deeply appreciate it!!!

bunnie
11-06-2010, 06:41 PM
Hi serand4,
I hope you are feeling better now.. If not, please consider being seen sooner than later. If you have a fever or are vomiting, be seen right away. It could be gallbladder related, or appendicitis... appendicitis can radiate up with pain. Listen to your body, you know what is normal for you. (even with this crazy illness) God Bless, and keep us updated! Deb

tgal
11-06-2010, 08:56 PM
Hi Serand,

Since there are so many things that it could be you need to make sure and listen to Deb. If you do not get to feeling better quickly you might want to consider going back to the ER. You don't want to allow whatever this is to make things worse by not having it taken care of. Keep us posted

serand4
11-06-2010, 10:01 PM
In all honesty, if this wasn't the first sleep over my son has had in months and months (with several cancelled due to my illness in between), I'd have a call into my doctor all ready. My breathing treatments just aren't helping tonight and I'm counting my pain meds to know exactly how many I can use to curb the pain. Yep, another scary night. But experience tells me that a good night's sleep will help. If not, it's 911 and and a few phone calls. Wish me luck guys and thanks for your wonderful support!

Nonna
11-06-2010, 10:48 PM
Serand
I agree with Deb and Tgal. You need to be seen. I had a gall stone and it felt like your description. Check in the am if not sooner. If it is something else it's still important to be seen

nonna

serand4
11-07-2010, 06:56 PM
I made it through the night and you're right, it does feel like gallbladder problems but I had that out many years ago. I'm concerned it's my liver since I take so many meds. I see my lung doctor tomorrow so that will be one thing answered and I will be calling my rheum tomorrow about the sever pain under my breast line. I want to stop panicking, but honestly, every time I go to the ER, something really is wrong. I just worry about blood clots though I'm on blood thinners so I should be in the safe zone. I will keep you posted. Thanks for your support - you guys are the best!

SandyR
11-08-2010, 08:03 AM
serand4,

I am just seeing this and was wondering how you are feeling today? Did you go back to the ER or wait until today's appointment?

Sandy

serand4
11-08-2010, 04:35 PM
Well, I made it to the lung doctor today and I'm pretty bummed. I have what is called "Shrinking Lung Disease". Essentially the Lupus is causing my lungs to function less and less and therefore less and less oxygen is getting into my blood. This condition doesn't show up on CAT scans or XRAYs so ER doctors definitely tend to look at you like you're faking it or having a panic attack. It was pretty scary when my doctor asked if I had my rheum doctor's phone number handy because he wanted to call her right that moment. The line was busy (her line is always busy on Mondays) but before I was home to try to call her again, he had already called. Naturally the lady who fields the calls was in her usual bitchy mood and asked me was the lung doctor told me to do. I said he wanted to talk to her first. She got snotty and I was proud of myself as I didn't lose it but instead said, "look, I'm scared and I want to start the treatment as soon as possible. I need to know what Dr. Hoffman and Dr. Ranes want to do. Please have someone call me as soon as possible."

So, going to the ER on Saturday wouldn't have gotten me anywhere anyway though my chest pains remain terrible. I guess it's the lungs struggling to get the air they need or I still need to see the heart doctor. I'll probably see him -- see I'm running 100% on everything I've feared!

Keep me in your prayers -- I keep all of you in mine!

magistramarla
11-08-2010, 07:28 PM
Hi Serand,
I'm coming to this thread really late, but I'm sure glad that you've gotten some answers. It sounds like your pulmonologist knows what he's talking about. Hopefully, there will be some treatment that can improve your lung function, like the treatments that they have for asthma.
Hang in there and good luck!
Gentle Hugs,
Marla

SandyR
11-09-2010, 07:47 AM
Well, I made it to the lung doctor today and I'm pretty bummed. I have what is called "Shrinking Lung Disease". Essentially the Lupus is causing my lungs to function less and less and therefore less and less oxygen is getting into my blood. This condition doesn't show up on CAT scans or XRAYs so ER doctors definitely tend to look at you like you're faking it or having a panic attack. It was pretty scary when my doctor asked if I had my rheum doctor's phone number handy because he wanted to call her right that moment. The line was busy (her line is always busy on Mondays) but before I was home to try to call her again, he had already called. Naturally the lady who fields the calls was in her usual bitchy mood and asked me was the lung doctor told me to do. I said he wanted to talk to her first. She got snotty and I was proud of myself as I didn't lose it but instead said, "look, I'm scared and I want to start the treatment as soon as possible. I need to know what Dr. Hoffman and Dr. Ranes want to do. Please have someone call me as soon as possible."

So, going to the ER on Saturday wouldn't have gotten me anywhere anyway though my chest pains remain terrible. I guess it's the lungs struggling to get the air they need or I still need to see the heart doctor. I'll probably see him -- see I'm running 100% on everything I've feared!

Keep me in your prayers -- I keep all of you in mine!

I had to look up Shrinking Lung Syndrome and it sounds like it would be very scary to have. I have lung disease too and I think it's great that your pulmo and rheumy actually talk to each other! I almost fell of my chair when I read that. My pulmo sends letters to my rheumy and PCP but I don't think he's ever actually picked up the phone to discuss treatments. They both ask me what the other plans to do and I often feel like the kid in a divorce going between mom and dad with messages when they do this to me. In all the information available about SLS steriods seem to be commonly perscribed. Have you been given a new steriod and is it helping?

Sandy

SandyR
11-09-2010, 07:51 AM
Well, I made it to the lung doctor today and I'm pretty bummed. I have what is called "Shrinking Lung Disease". Essentially the Lupus is causing my lungs to function less and less and therefore less and less oxygen is getting into my blood. This condition doesn't show up on CAT scans or XRAYs so ER doctors definitely tend to look at you like you're faking it or having a panic attack. It was pretty scary when my doctor asked if I had my rheum doctor's phone number handy because he wanted to call her right that moment. The line was busy (her line is always busy on Mondays) but before I was home to try to call her again, he had already called. Naturally the lady who fields the calls was in her usual bitchy mood and asked me was the lung doctor told me to do. I said he wanted to talk to her first. She got snotty and I was proud of myself as I didn't lose it but instead said, "look, I'm scared and I want to start the treatment as soon as possible. I need to know what Dr. Hoffman and Dr. Ranes want to do. Please have someone call me as soon as possible."

So, going to the ER on Saturday wouldn't have gotten me anywhere anyway though my chest pains remain terrible. I guess it's the lungs struggling to get the air they need or I still need to see the heart doctor. I'll probably see him -- see I'm running 100% on everything I've feared!

Keep me in your prayers -- I keep all of you in mine!

Here's a good thread discussing SLS and Lupus on the LFA website
http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=3&threadid=8217&messid=73143&parentid=0&FTVAR_FORUMVIEWTMP=Single