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elephant
02-12-2010, 09:55 AM
Had a Hida scan done on my gallbladder. It is sluggish. I have been having arm muscle pain and upper abdominal pain and decreased appetite. So will see what my doctor says about the results hopefully Monday. It's always something! But I am counting my blessings!

Sangye
02-12-2010, 10:01 AM
Are the walls thickened? Any sign of infection? Any stones?

elephant
02-12-2010, 12:04 PM
The gallbladder scan was negative, but the Hida scan showed that my gallbladder was sluggish. They injected that radioactive dye in me and took pictures for one hour and the gallbladder did not show up. Then the guy wanted to give me morphine 3 mg and I said,"NO!" So I had to wait another two hour and get more pictures taken finally they saw my gallbladder. He said it was sluggish and could not give me any more info and to call me doctor for the info. So it will probably be Monday.

Sangye
02-12-2010, 12:12 PM
Why did he want to give you morphine? Is it a painful test? Maybe your gallbladder was playing Hida Go Seek?

moyan
02-12-2010, 12:59 PM
Hi, I don't know what to say so I am just sending a real bearhug!!

Sangye
02-12-2010, 01:43 PM
Oh, I didn't know morphine did that. Makes sense. It gives me terrible migraines, which are liver-based in me. The only time I took morphine was during a kidney stone.

jola57
02-12-2010, 03:52 PM
He he Sangye Hida and go seek. Mmm morphine, the last time they gave me some they also gave me tylenol 3 and I had terrible nightmares. I dreamt that I was chased by metal bolt people (I think I was one too) on a metal scaffolding on a skyscraper. Everytime I woke up and went back to sleap I dreamnt the same thing. It was awful. I have never since taken tylenol 3 or morphine.

moyan
02-13-2010, 04:58 AM
Hi, it is darkest before dawn!! This week I have been so down, not knowing what is going on in my foot. Sleeping poorly and thinking a lot. So.......
gp office just called and told they have an app with a plastic surgeon for me!! Hooray! I will finally get to know if all that callus that has been building up for a year is the cause of swelling and pain. Some days so bad I didn't feel safe driving. Time to smile moyan!

elephant
02-13-2010, 05:10 AM
That's great Moyan. Hope it all works out for you.

Sangye
02-13-2010, 11:59 AM
I'm really glad to hear about that Moyan.

Elephant, how are you feeling?

Sangye
02-13-2010, 01:59 PM
I think pred causes gallstones, but I'm not sure...

I'm just so worn down. I had to walk through 50 ft of knee-deep snow (with bare legs) this morning to get to my car. It was cold, of course, but also exhausting. I don't know how I made it through the day. I drove myself and just gritted my teeth to get through the day. I've been feeling really worn out the past 2-3 weeks, no matter how much I rest. The stomach bug this week put me over the edge.

I saw my therapist (whew) and my hematologist. The hematologist always runs really late. I expect it now, but it's still exhausting. I waited 2.5 hrs. It was a tough visit, because when I'm this worn out I feel emotionally spent, too. I expressed my frustration that my day-to-day function isn't really improving unless I compare by years. He said my test results are looking better so that shows I'm doing better. I wanted to whallop him with those results. Blood tests don't measure fatigue or even pain. They don't show that going grocery shopping one day means the next I'm completely worn out, unable to do anything at all. They don't measure not being able to work or the subsequent fallout.

He pointed out various signs/symptoms that have improved since the rtx in October-- no Wegs rashes, no bleeding lungs, etc... But many of the things we listed come right back if I lower the pred by 1/2 mg pred!

He said it takes years to recover and I should be patient. I don't want anyone telling me to be patient anymore. It's been 5 yrs since onset and almost 4 yrs since diagnosis. I've been plenty patient. Feeling lousy every single day for 5 yrs is not easy. He said it could be another year to get back on my feet. I told him not to repeat that, thank you very much. I just can't hear it.

My next appt with my Wegs doc is Mar 31 and we'd probably do a 2nd round of ritux in April. We both agreed that was too long to wait, so he emailed him to suggest that we do a round of rtx much sooner, and maybe do it every 3-4 months instead of every 6. That's not the typical Wegs protocol, so I have no idea if my doc will go for it.

I really like this doc but today I left in tears. I felt totally unvalidated and unheard. I had a 2hr drive to do and I pretty much fell into the house.

elephant
02-14-2010, 12:54 AM
Sorry to hear that Sangye. I think the most I felt real lousy was about a year, but not four years. I give you a lot of credit and "WOW". The stamina that you have is incredible even though it takes another day to recover. I think everyone here on this forum would agree with me, " Your amazing person!"
I think your doctor was trying to scientifically stating that you weren't getting any worse by showing you lab values and such.
Sangye, I feel the same way with most of my doctors, "Unvalidated and unheard!" Except for the Wegeners Specialist and my local Rheumy is pretty cool
You will get better. Really, you will. You are in my prayers every day! I also pray for the other people on this forum. :)

Sangye
02-14-2010, 02:09 AM
Thank you, Elephant. I really appreciate your kindness.

It was frustrating, because he couldn't see that we were comparing apples and oranges. He was comparing current signs/symptoms with pre-flare and saying they were better. But pre-flare I wasn't dependent on pred, which is definitely masking a lot of stuff. And pre-flare I didn't have nose involvement.

We did both agree that the Wegs has never been anywhere near remission, and that the constant smoldering is like a hot coal that has consumed so much of my energy (and tissue).

This doc isn't a Wegs specialist, so I'm not gonna let myself get more upset at what he said. He likes to be very involved in all aspects of his patients' care, even though he's "only" my hematologist to manage the blood clot issue. I like that about him and he does help me out when another doc in his shoes would just tell me to call my PCP or someone else.

JanW
02-14-2010, 02:27 AM
Sangye - I really feel for you and want you to know that I have thought about you everyday in the short time that I have "known" you. Your situation must be incredibly frustrating and I can't imagine what it would feel like to hear that you may be looking at a long period of time before you get well. It is pretty amazing that you could even get out and do all of that stuff -- are all of your doctors at JHU? Do they always make their patients wait so long (I understand its a specialty and "worth it" but still).

Sangye
02-14-2010, 02:37 AM
I get myself to JHU (driving, in/out of campus shuttles, etc...) out of sheer will. I've always had a strong inner constitution, even when my physical constitution is on leave.

All my docs except PCP and dermatologist are at JHU. The waiting times depend on the docs. My Wegs doc runs right on time. Ironically, I wouldn't mind waiting long for him. It's the most comfortable waiting room--small and cozy, just for the Vasculitis center. All the patients are immune-compromised so I don't have to hyper-protect myself. If I were in there longer maybe I could also talk to another Weggie. They also have a computer for patients' use and I can hang out on the internet.

At this point I know which docs run really late and can prepare for it. It's still exhausting, but it isn't stressful.

Doug
02-14-2010, 02:40 AM
Sick and tired of being sick and tired; impatient with being patient ~ I know that feeling, Sangye, but it has more to do with the aftermath of the shingles two+ years ago. Postherpetic neuralgia. More patience to us, though I know saying it won't bring it on!

Terri
02-14-2010, 01:19 PM
Ah Sangye, I'm so sorry to hear you are having such a hard time. You have been so helpful to us all when we have a problem, I just wish I could help you in some way.
I hear your pain and frustration. This winter hasn't been easy on any of us in the east(US) either. I've shoveled more snow this year then I ever did when I was healthy.
If I make it to April without a flare, I will have gone a year without but my Doc wouldn't let me go any lower then 7.5 on my pred. Previously I had went to 5mg. but also was under more stress.
So it is hard to figure out.
I've recently been doing the WI Fit. I try to do at least 30 min. at least 3 times a week. I'm not losing any weight but I've noticed I am getting stronger in areas that I lost such as balance. It also helps to relieve stress for me. I hope I'm not hurting myself by trying to keep active. I hope my body will warn me if I am doing too much.

Sangye
02-14-2010, 02:01 PM
You guys help me a lot. Just being able to express my frustration to people who understand it is worth tons. I appreciate every one of you. :)

Sangye
02-20-2010, 09:33 AM
Elephant, how are you feeling these days? What's going on with your gallbladder?

Sangye
02-20-2010, 09:47 AM
I'm so sorry to hear that! I hope the antibiotic works quickly to clear it up. Please try to get a lot of rest if you can. :)

moyan
02-20-2010, 11:01 AM
We all suffer when you dont feel good, elephant and sangye. And the next day you are peppy as ever and cheering us all on!! Love this site! :)

elephant
02-20-2010, 12:56 PM
Thanks Moyan for the kind words. How are you doing ?

Sangye
02-20-2010, 01:10 PM
Thank you, Moyan. I always feel better when I can help. Takes my mind off of me.

Elephant, I'm glad to hear your plan. If anything worsens over the weekend, head for the ER. They can do the CT. I know you know this-- just doing my duty as a nag. :)

jola57
02-20-2010, 05:29 PM
Elephant watch the omnicef. A couple of years before the onset of Wegs, I had surgery where during the operation I was given ancef (same family) aparently I brike out in hives right away. I have never been allergic to anything before. I often wondered it this was the starting point or cause of my Wegs.

moyan
02-21-2010, 12:50 AM
Hi elephant, I have a feeling you enjoy any good news, be it you or anybody else! And this is good! Yesterday we took a q-tip and softly swept the toehole and it seems all the callus is out and there is only a red spot. Must mean it is healed!! After 2 years. Wonderful. :)

Sangye
02-21-2010, 01:03 AM
Wow, Moyan that's fantastic news. You must be so relieved! I'm still cringing that you have a "toehole" but at least it's not an infected one. :D

Jack
02-21-2010, 01:16 AM
Great news Moyan. It's always good to hear that someone is getting better rather than worse. ;)

I'm now almost over the cold and sore throat that I've had for the past week, but still have the pain low down on my left side. Not sure how long I'll leave it before investigating further (please don't nag me Sangye! ;) ). I can't be that bad because I'm now decorating the bathroom. It is pushing me to my limits and I'm only doing a small bit at a time, but it is something I had almost given up on.

Sangye
02-21-2010, 01:18 AM
LOL-- you know me so well, Jack. I was ramping up for a good nag. Glad you're doing something you enjoy. :)

moyan
02-21-2010, 02:22 AM
Jack, that must feel terrific to get it done and I bet you can't wait to see the result!

elephant
02-21-2010, 02:28 AM
Great news Moyan! So glad it is healing. That should make your day and week. Jack so gald you are doing the bathroom. You will be proud of it when your done. You might just spend way too much time in there enjoying the new bathroom.
Jack wish you get better too. Little nag....so tiny nag......

Sangye
02-21-2010, 02:37 AM
Little nag....so tiny nag......
LOL... So tiny you could almost miss it. :D

jola57
02-21-2010, 01:23 PM
nag, nag, oh it is too beautiful to nag. Vancouver is showing its best side to the world, I was down town and the sea of people was unbelievable. Jack, no nagging but do watch it just so that it doesnt develop into a lung problem

moyan
02-24-2010, 12:12 PM
Oh Elephant. I hope you are satisfied with that decision and are hoping you will feel better. I think you trust that doc and that is good. I really don\t have anything to say but to wish you the best!!!

Sangye
02-24-2010, 01:11 PM
I hope it helps you, Elephant. I don't know if they mentioned it, but a smoldering gallbladder could be wreaking havoc with your Wegs. It keeps the immune system on high alert and wears you down. I don't know if MDs recognize that, or if it's just something holistic docs know. So there's reason to think you might be feeling better Wegs-wise once it's out.

elephant
02-24-2010, 10:29 PM
Thanks Sangye , I am glad to hear that. I didn't want to wait till it burst or have other issues. It is not working properly and is so inflamed. So the best thing is to get surgery. My in-laws are coming in for a week to help out.

Sangye
02-25-2010, 02:10 AM
Elephant, what better day to have a green organ removed than St Patrick's Day? :D

elephant
02-25-2010, 02:38 AM
Sangye I knew you would think like that. Giggle, giggle...maybe some good lucky charms with that gallbladder. :)

Sangye
02-25-2010, 10:39 AM
Have you seen the reports about staying safe in hospitals, where they discuss how to make sure surgeons operate on the correct side, etc...? They tell people to write "Cut here" and things like that. I think you should draw a big green 4-leaf clover on your upper right abdomen before your surgery. Wouldn't the surgeon have a good chuckle? :D

moyan
02-25-2010, 10:44 AM
Haha, and it goes for luck also.

jola57
02-25-2010, 06:08 PM
elephant what an idea - do it - and then let us know how it went. just bring a pair of scrubs for the change

elephant
03-17-2010, 11:15 AM
I am off tomorrow to have my gallbladder out. Wish me luck! I am happy and scared at the same time! I will be thinking of you all!

JanW
03-17-2010, 11:44 AM
Good luck, tomorrow, elephant. Keep us posted.

Sangye
03-17-2010, 11:50 AM
I was just thinking about you, Elephant, remembering tomorrow is the big day. I hope it goes well and you get relief. Let us know how it goes! :)

DEE
03-17-2010, 05:26 PM
hope everthing goes well elephant , DEEx

Sangye
03-19-2010, 02:24 AM
How are you feeling, Elephant?

Sangye
03-19-2010, 02:38 AM
Wow, I had no idea they'd let you out so fast after surgery! (And they would've let you out yesterday??)

I hope it was just the anaesthesia that made you sick and you'll feel better as the day goes on today. :)

I'm doing okay-- as long as I don't do much of anything I'm alright.

elephant
03-19-2010, 06:26 AM
Like the nurses told me if your not feeling better every day you need to call the doctor.
Gallbladder surgery is quite fast, I think they do so many that they had to learn a better way of doing them. So it is considered a "outpatient surgery."

Sangye
03-19-2010, 06:34 AM
I had no idea~

DEE
03-19-2010, 07:51 AM
hi elephant and sangye glad to hear you are both going on ok take care
now you BOTH have to kisten to your own advice and do as you are told
take care DEEx

elephant
03-19-2010, 10:14 PM
I am taking pain killer for the pain. I noticed that my nose is more bloody, I am assuming it must be from the pain killers. I have a decrease sense of taste too. I don't like that...I love to taste my food!

moyan
03-19-2010, 11:37 PM
Hey, hey , hey. You had a major operation, give it a couple of weeks. And don't forget the docs said to call if worried. Besides that, we are glad you are back and I am sure your family is also.

Sangye
03-20-2010, 12:25 AM
Elephant, like Moyan said, it's still a major operation. Even if they like to send people home faster than before, they still removed an organ! It's not like you had a zit popped. :D Get some rest and I hope your taste buds wake up today. That would drive me nuts.

pberggren1
03-20-2010, 10:38 PM
I can attest to being nuts. I haven't been able to taste or smell for months now.

elephant
03-21-2010, 03:11 AM
I can taste a little better today. Having no taste or smell is really relate to inflammation or sinus infection. Phil you must still have active WG going on and you probably already know this. Not being able to taste even 60% really sucks!!! Talk about nuts, I even sniff my food while I eat it to try to get the full effect.....then I think WOW! I really am desperate to taste my food 100%. Hopefully Phil you will taste and smell real soon!

pberggren1
03-21-2010, 01:56 PM
Thanks elephant. I am wondering too if the Wegs is creeping up again.

Jack
03-21-2010, 06:55 PM
I went through a period of many years when I had no sense of smell at all - I could not even smell a pot of menthol rub. However, I was in full remission at the time and had no other Wegener's symptoms so I put it down to all the damage and operations on my sinuses that I had previously. Eventually, it just got better and I have no idea why.

This is very typical of my experiences with Wegener's. I get random symptoms that stay with me for a while (sometimes a very long while!) and then go away again.

Sangye
03-21-2010, 11:53 PM
Phil, I think the Wegs has been creeping up on you for a few months. Didn't your docs decide that was the case?

Sangye
03-22-2010, 03:15 AM
Oh Elephant, I'm sorry you're not getting the rest OR help you definitely need! I'm worried that you're in a house with pneumonia, too.... Sending you lots of hugs for your strength and vitality. We'll prop you up with hugs until your body is stronger. :)

moyan
03-22-2010, 03:18 AM
When the going gets tuff, the tuff get going, but.......Only one thing to do, elephant: Borrow a boat, bring the kids and go fishing in a quiet laguna or stormy sea if that's your choice. ( I see the dawn, when it gets lighter for you)

DEE
03-22-2010, 03:23 AM
elephant sorry to hear that things not working out you deserve all the help you can get after al the help you give us
thinking of you hope things get easier soon DEEx

Lola
03-22-2010, 11:57 AM
Oh, so sorry, Elephant! That is so very unfair to you! YOU are the sick one, for pete's sake. Why do you not get to be the patient? Did they come to visit or to "help take care of you"?

pberggren1
03-22-2010, 03:51 PM
Actually Sangye my Rheumy said it is not a flare and just infections.

I sometimes get a rapid and strong hearbeat - I have one right now. It usually takes hours to go away. Maybe I have to go back on the Ramipril for high blood pressure. My BP the other day was 144/90.

Jack
03-22-2010, 05:54 PM
Atenolol will lower your blood pressure and regulate your heartbeat. I can't manage without it - heart goes crazy and I think my time is up! ;)
I was taking Ramapril too until recently, but my pressure was getting too low.

DEE
03-22-2010, 06:13 PM
im taking Atenolol and Perindopril which has helped with bp and heartrate too.
i no longer feel as if heart going to burst out of chest or no longer scare hubby !! nearly ended at er in the begginning as we did not know what was happening it was during the night !!
a call to consult and it was sorted
DEE x

Sangye
03-22-2010, 11:58 PM
Actually Sangye my Rheumy said it is not a flare and just infections.

Several symptoms you've been experiencing lately sound like Wegs and not repeated infections. (I don't know where that thread is or I'd list them!) You've mentioned a few times that you wonder if it's Wegs. To me, that's usually a good indicator that your intuition knows what's going on but the brain doesn't want to believe it. And the rheumy talks you out of it.

Maybe it's not, but that's been my own experience and something I've seen happen to others on here over and over.

A year ago I felt the Wegs creeping up. My Wegs doc said no, it's the result of being out of condition and the damage from the drugs, etc.... So I let myself be talked into it. The symptoms increased. Then I got "pneumonia" without even having a cold first. They said it's infection. I let myself believe that, too. The symptoms increased. The "pneumonia" was persistent, even through multiple IV antibiotics and a month of mulitple oral antibiotics. They said it's taking longer to resolve because of being immune-compromised. I was beginning to wonder. I started coughing up blood. Still they said it's infection--not enough blood. I coughed up a lot of blood. Nope, can't be Wegs. Besides, all my labs were fine.

I knew it all along and I allowed my fear of going through it again drown out my always-reliable intuition. I hope it's not Wegs causing trouble for you, Phil, but I don't want you losing treatment time if it's a flare going untreated.

JanW
03-23-2010, 12:07 AM
This raises a good question for me, Sangye -- how did the docs make a determination that it was just an infection? Couldn't they have cultured something to know for sure? Sounds like they were going on clinical presentation, which wasn't good enough.

Sangye
03-23-2010, 12:36 AM
It was tough. I can't blame my Wegs doc for missing it. I wasn't coughing up anything, so no sputum sample. My chest x-ray showed "atypical pneumonia"-- always a confusion-maker. (We're more susceptible to atypical pneumonia, but alveolar hemorrhage also looks like AP) My CT was bad but didn't differentiate between AP or Wegs. I had fevers, chills and sweats-- Wegs does that, infection does that. Extreme fatigue-- same thing. It really was impossible to tell until I started coughing up blood. Even then it wasn't a sure thing because it stopped while on IV antibiotics!

The only way it was finally diagnosed was that the pile of "could be Wegs" symptoms got too big to ignore. My Wegs doc said in a Weggie who's prone to alveolar hemorrhage, ANY blood in the lungs is Wegs.

Jack
03-23-2010, 12:45 AM
Much as it pains me to say it, but I can understand misdiagnosis of Wegs. The body simply presents the symptoms of being attacked by an infection and infections are very common whereas Wegs is very rare. It is only when someone starts to show multiple, unrelated "infections" that I would expect a doctor to start asking more questions.

Sangye
03-23-2010, 12:51 AM
I'm the same way, Jack. Whenever I see attempts at educating doctors to recognize and diagnose Wegs better, I think how on earth? Unless someone comes in with sinus, lungs and kidneys involved, the signs/symptoms can look like many other conditions. If a patient presents with alveolar hemorrhage, there are only a handful of conditions that can cause it. I was lucky to present with that (after a year of excruciating joint pain that would have gone undiagnosed for sure).

Sangye
03-23-2010, 12:57 AM
Some things are clearly NOT Wegs :

http://icanhascheezburger.files.wordpress.com/2009/10/funny-pictures-kitten-is-a-doctor.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)
s (http://icanhascheezburger.com/)

JanW
03-23-2010, 01:27 AM
I often say that the best thing to happen with my WG was the saddle nose. Only a handful of conditions can cause it, and it is dramatically noticeable to doctors (for me, not so much for the general public -- I've got freckles and dreadlocks and have a lot going on with my face/head). Vs. something like windpipe obstruction, it really can't be mistaken for much other than an AI disease, primarily WG, sarc or relasping polychrondtritis -- and of those three, only sarc is more common than wegs.

Even with that, I read about a case on the VF website where a cocaine abuser was misdiagnosed as having WG because of his collasped nose--so you never know!

Sangye
03-26-2010, 08:44 AM
Oh Elephant... big hugs coming to you. I'm a little flimsy, but I think I could fling my arms around you! :)

Lightwarrior
03-26-2010, 09:05 AM
Elephant,
Wish I could send you my oldest daughter who lives with me, she is obsesive about keeping our house clean. I'll send you light and energy instead, knowing you really need a housekeeper and a few days of respite for yourself.

moyan
03-26-2010, 09:15 AM
Oh elephant, this is so dramatic, I can't even try to make you smile! Is there any way you can get help? Up here we can call health authorities and I am sure you would be considered an emergency! Not like when you do it yourself but a very good help. Out of hugs at the moment, shared them with my neighbour angel who came over to get a hornet out before the cats eat it and get stung in the throat, but already reloading so.....

Sangye
03-26-2010, 09:33 AM
What are health authorities, Moyan?

moyan
03-26-2010, 09:40 AM
Hi Sangye, hope you feel a bit better now, that would be the right trend.
Now I am in deep water, but it is the government/city office that organises home support, handidart, some eonomic support. That is all I know, never nee ded anything until WG and the hospital and home nurses (they too are under health) arranged everything for me. Maybe another name in US

elephant
03-26-2010, 10:14 AM
I told my inlaws that their 44 year old daughter ( no children) can help out. I already told her that she is going to take her father back and forth to the hospital and basically said, " I have two kids to take care of." I see my surgeon tomorrow and ask him about my activities and what I have done. blah , blah...I will stay strong and that's all I can do. :)
Thanks so much for all of your support, it means the world to me!

Sangye
03-26-2010, 10:35 AM
I'm proud of you for standing up for yourself! I hope you haven't hurt yourself with all this activity.

moyan
03-27-2010, 01:52 AM
Hi elephant, maybe today is the day you can sit back and read a book, watch TV, order a pizza and eat a strawberry/vanilla donut

elephant
03-27-2010, 05:26 AM
Oh how I wish Moyan. My sister in law missed your flight and then it got delayed. So she decided not to come. So I have been running around all day and need to go to the hospital to see her. Hoping tomorrow is better!

Sangye
03-27-2010, 08:43 AM
Elephant, if you don't get some rest tomorrow I'm coming over with duct tape. I'll put all this pred weight to use and sit on you while I tape you to a chair. So there! :D

moyan
03-27-2010, 08:57 AM
I am coming too! Or you move your family to Vancouver. You can visit and I yell at trhe kids and Sangye might do the housework. See, all planned!

elephant
03-27-2010, 10:24 AM
Thanks guys, but I have bad news my mother in law is in intesive care right now. They are trying to see if she has a PE or heart attack. I will keep you guys posted.

Sangye
03-27-2010, 10:29 AM
Oh, no.... Hoping it's easily corrected. She must be wiped out-- pneumonia and now this? Please take care of yourself, Elephant. I don't know how you're doing it.

elephant
03-27-2010, 01:40 PM
I am pretty tired but handling it pretty good. I guess her heart rate was 190 and they had to give meds to bring it down, it is taking awhile for them to get the heart rate down. They want to do the CT scan with they dye to check for blood clots, but they have to wait till the heart rate is 100. Two days ago I had a feeling that she had a PE too. I hope I am wrong. But she has all the symptoms, coughing up a little blood, left lower lobe hurts...enough for her to take alot of pain pills, and short of breath. She never told me all the symptoms...she was in denial and kept telling all of us she is getting better when actually she was getting worse. I am praying she comes out alive!

Sangye
03-27-2010, 01:43 PM
So they don't think she had pneumonia also?

moyan
03-27-2010, 11:22 PM
This string of bads will end and life go back to new normal, elephant. Think and find a thread to hang on to!

elephant
03-28-2010, 12:43 AM
I think she has pneumonia, they did rule out PE last night. She is still in intensive care unit to control her heart rate. They think she might have cancer, the found that her glands/lymph nodes very swollen.. That could possibly mean overwhelming infection or cancer or something else. She doesn't want alot of test done cause she want to go back to Illinois where she lives. She wants the doctors there to see her. But of course she can't leave the ICU or she will die. I told her while she is there that she should have as many tests done as possible and have them transferred to her doctors in Illinois. She will do what she wants, I have no control.
Thanks Moyan and Sangye, I am so mentally out of it!

Sangye
03-28-2010, 12:58 AM
It sounds like she's pretty stubborn! You're giving her good advice but she's got her mind made up. How on earth does she plan on getting back to Illinois?

I'm glad you're backing off from it, Elephant. You can't wear yourself out trying to take care of someone who won't listen to common sense.

Jack
03-28-2010, 02:45 AM
Sometimes your own self protection has to kick in and you have to take a step back from the trouble around you. It does not mean that you don't care.

elephant
03-28-2010, 09:36 AM
Thanks Sangye and Jack, saw her today for three hours in ICU and still on IV meds to reduce and stablize her blood pressure and pulse. The pulmonologist thinks that the large lymph nodes are from the infection, the just need to see and wait. They want to treat the infection first, because it is so bad it affected her heart. I guess my sister in law wants them to fly back and have someone in Illinois come here and pick up their car. They don't want to fly. So anyways...I don't know. I am taking it one day at a time. I just got done eating 6 Hershey's milk chocolate eggs.

Lightwarrior
03-28-2010, 12:08 PM
I think she has pneumonia, they did rule out PE last night. She is still in intensive care unit to control her heart rate. They think she might have cancer, the found that her glands/lymph nodes very swollen.. That could possibly mean overwhelming infection or cancer or something else. She doesn't want alot of test done cause she want to go back to Illinois where she lives. She wants the doctors there to see her. But of course she can't leave the ICU or she will die. I told her while she is there that she should have as many tests done as possible and have them transferred to her doctors in Illinois. She will do what she wants, I have no control.
Thanks Moyan and Sangye, I am so mentally out of it!

She could be septic, sounds like there are multiple problems converging at once. Take advantage of her being in ICU and try to get some rest for yourself. Although being the nurse in the family that may not be possible. My heart is with you, is it a family centered ICU?? Ours is, do they have a pallative care team?? They can come in and help her to set goals that family may not be able to approach with her. Let your fellow nurses know your needs, I have always found that I got great care at the bedside when my Mom and Grandma were in the hospital,of course it is the hospital that I work in. My thoughts and prayers are with you, hanging out at a bedside is much more draining than working at one. If she can get back to Illinois it might give you some peace and relieve some of your stress.

Lightwarrior
03-28-2010, 12:14 PM
Thanks Sangye and Jack, saw her today for three hours in ICU and still on IV meds to reduce and stablize her blood pressure and pulse. The pulmonologist thinks that the large lymph nodes are from the infection, the just need to see and wait. They want to treat the infection first, because it is so bad it affected her heart. I guess my sister in law wants them to fly back and have someone in Illinois come here and pick up their car. They don't want to fly. So anyways...I don't know. I am taking it one day at a time. I just got done eating 6 Hershey's milk chocolate eggs.

Agree with Jack step back, let your sister in law handle getting her back. I like your plan...eat more choclate eggs.

elephant
03-28-2010, 11:21 PM
Thanks Lightwarrior, I am letting my sister in law handle this. I agree, when it is safe for her to leave the hospital she should go back to ILLinois. It would be best for her peace too!

Sangye
03-28-2010, 11:29 PM
LOL-- Elephant, did you mean to write ILLinois or was it a Freudian slip? It's perfect either way. :D

elephant
03-29-2010, 09:43 AM
It was a Freudian slip! I went to visit her today and she is doing better, still in ICU but they are going to move her to a tele unit to monitor her heart. She is worried that she has cancer. So that doctor told her it could be a possibility because of the large lymph nodes. Geez, that poor woman. I have not stop moving today. I am sitting in bed and having a cup of tea.
I do count my blessing. Roof over my head, eat, breathe, pee, poops, walk, insurance, have food to eat, and I could go on...

Doug
03-29-2010, 12:25 PM
Yep! =( ^ + ^ )=

pberggren1
03-29-2010, 11:37 PM
Are you feeling alright Doug?

elephant
03-30-2010, 01:03 AM
Doug is that a smiling cat?

Doug
04-01-2010, 12:12 AM
Nope/yep!

I feel a bit stiff and sore from knees down. My feet (right foot, anyway) has a numbness business going on primarily from sitting too long at my computer (sciatic nerve over calcium ridge from where I broke my pelvis as a child). Pain medication isn't working well on my facial pain caused by shingles in 2007. Other than that, call me "Lucky"! [Years ago, there was a joke "Lost Dog" poster going around when the dog is described as missing an ear, is blind in one eye, is neutered, and a bunch of other things. "Answers to the name Lucky," was the last line.]

Yes, that is a cat, smiling or just implying so!

Lightwarrior
04-11-2010, 10:31 AM
It has been about 3 weeks since my Gallbladder surgery. I am in less pain, just a little sore in the belly button area. Remember I have been busy taking care of in laws. They finally left today. I will survive...Hey...Hey....


I have new hope for you elephant, problems in the rear 1/2 the size, in-laws gone, gallbladder surgery healing. My wish for you is this...tonight and tomorrow you get to lay around and be taken care of. I will worry less tonight.http://www.wegeners-granulomatosis.com/forum/images/icons/icon7.gif

moyan
04-11-2010, 10:44 AM
A veggie, not weggie, pizza! A cup of hot something, like tea. On bed, reading a story to the kids or let them read to you. Tug of war and ballthrowing for the dogs. Enjoy!!

Sangye
04-11-2010, 11:54 AM
I'm glad you're doing better, Elephant. I bet next week at this time you'll be even stronger. :)

elephant
04-11-2010, 12:31 PM
Thanks you all! Tomorrow will be lazy day!

DEE
04-11-2010, 03:36 PM
hope you get alittle time for you forget the pizza go for the triple chocolate muffin it works everytime for me take care off u elephant :) DEE x

elephant
04-11-2010, 09:37 PM
Thanks Dee, the work chocolate just energizes me! I am going grocery shopping this morning and I am getting a Treat for me. YUMMMY TREAT!

DEE
04-12-2010, 02:46 AM
good for you enjoy :) DEEx