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Thread: Sorry I have written...I was hospitalized

  1. #1
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    Default Sorry I have written...I was hospitalized

    Hey everyone! Sorry I haven't posted in the last few days. I had been having some calf pain and some weird scalloping discoloration to my left leg over the weekend and concerned it was a blood clot (which I am at risk for because of all the protein I'm spilling) I went to the emergency room for evlauation. I tried to go see my primary but all the docs were booked. So I went to the ED the ultrasound of the leg was negative and was discharged home with a phlebitis (inflammation of the superficial blood vessel). I was walking back to my office to get my lunch bag and my boss saw me in the hall and heard that I was short of breath. She asked me how long I have been like that. I told her for a few days when I exert myself. She was concerned because I just walked down the hall and because I didn't tell them I was short of breath nor did they ask or do a chest x-ray on me. Her concern and then my family's prompted me to return to the ED and be re-evlauted for a blood clot in the lungs.

    Of course this time they did lab work too in addition to a chest x-ray and VQ scan (CT but without the contrast- they use a radioactive isotope you breath and inject into the veins that are safe for renal patients). The scans came back negative for blood clots but my cardiac enzymes were up, my sodium was low and I was having periods of sinus tachycardia (normal heart rhythm but beating fast). So they admitted me. I got one tablet of sodium chloride which may or may not have worked but my sodium came back to normal. My echocardiogram just showed mild mitral valve prolapse which I have always had. They felt it was just the lupus and the diuretics that caused my cardic enzymes to go up some. I have to follow up in a few months and have a stress test though.

    My Nephrology group agreed that we should not delay treatment by trying to reschedule the treatment as an outpatient because I was scheduled to have the treatment this past Tuesday. So they kept me for another day and scheduled the Rituxan in the hospital and then I was discharged last evening after it was finished. I did well with the treatment with no reactions!

    I felt really stupid going to the ER twice but I know if I didn't these things wouldn't have been found and I would not have had piece of mind. I still have the discorloration to my leg with no explanation why. I have just come to the determination.....it's the lupus. It's always the lupus! I sometimes I feel I am becoming a hypochondric with this flare and becoming concerned with every little thing. Now that I have had the treatment I'm looking to a positive direction that this treatment will work and I wll be better soon. I think if I focus on that I will calm down and stop focusing on every little detail.
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    oh wow butterfly,

    what a week you have had. I know what you mean about everything that is happening in your body and worrying you and those who care for you. I was in a really bad flare last fall, and i was in and out of the er, all kinds of specialists checking everything, and i came away with "it must be your lupus." So incredibly frustrating, but at the same time, relief that there is not something critical going on. Hopefully your flare will subside and you will be given some time to get your body back in synch....

    what type of discoloration are you experiencing in your leg? I know this had to really frighten you.

    take care, i am glad you are at home and can sleep in your own bed....there is nothing like our bed.
    Phyllis

    share a smile today

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    oh butterfly! Sorry to hear how unwell you have been feeling. Your symptoms sound a lot like mine. I have breathing issues too. Standing up can take my breathe without warning. Did they look to see if your lymph nodes were enlarged? I had a lot of your symptoms, fatigue, shortness of breathe, chest pain, leg pain in the calf also discoloration and swelling. The ER did a chest Xray - showed nothing. The 1st rheumy did nothing with the chest but the 2nd did another chest xray (6 weeks after the ER) and it showed enlarged lymph nodes in my lungs. Sent me to the lung guy, did a contrast CT Scan & confirmed the enlargement. I go tomorrow to schedule an appointment with the Thoracic sugeon for a lung biopsy. The PCP also ran extra bloods specific to sarcoids. Since you are a nurse, maybe you know a radiologist who can read your films for you to be sure that you don't have sarcoids too. Alot of the sarco symptoms are shared with Lupus & I don't think you are crazy or a hypochondriac to worry about a wierd new symptom. Lord knows. if we aren't proactive with our healths, no one else will be for us either!
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    I'm glad you both don't think I'm crazy....LOL!

    Mountaindreamer- the discoloration in my leg would turn a dark purple that had a weird scalloping shaping that goes up my half my thigh. I actually still have it especially after a hot shower. It appears that the discoloration is happening to my other leg now too. I'm sure it's just one of the meds now or the lupus itself. I have an appointment with my nephrologist next week so we'll see what he says.

    Sandy- thanks for the thoughts on sarco. I did have a VQ scan which is a CT scan of the lungs but they use a safe radioactive isotope for renal patients since I can't have contrast. It did not show anything concerning. I have had issues with enlarged lymph nodes in my next over the past year which I had one removed last summer and well of course it's just the lupus causing a reactive node...no worries. But I will always keep that in the back of my mind.
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    Default hi

    Sorry to hear you have been in hopsital but glad they have helped you.The leg colours...i have 2 legs like that n blue feet so sexy in a dress I tell my doc....he yawns lol. But glad you are back home.You rest and know we all care.

    love Amanda.xx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Hi Butterflyrn,

    Im so glad you went to the er and got help. Rituxan, is that like Cytoxan? I had Iv cytoxan a couple of years ago, Im glad to hear that you are feeling better.

    Chriss
    Live, love, and most importantly be grateful!!

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    Oh my goodness...what a scary time for you. Glad they admitted you and took care of things while you were there.

    One of the hardest things for me to figure out throughout my years with Lupus, has been when is the right time to go to the ER. It's a really hard call, if it's not exactly serious....like breathing issues, or heart problems, or something affecting your vision, or debilitating pain, etc., I remember it being very difficult to make that decision. And then the more I used ER's and became familiar with the routine and how long they made you wait, and how long it could take while they were actually treating you, I began to NOT want to use the ER, unless it was a major emergency. My husband can testify to the fact that I would always wait until the last possible moment, before making the choice that I had to go there.

    And I'll still drag my feet a bit today, because I've spent soooo much time in ER's, but I've learned over the years that there are times when you do have to do it for your own peace of mind. Because sometimes I've put it off, thinking I was being a hypochonriac and just looking at every little thing as a symptom, and then waited too long and whatever it was became so serious I had to be admitted for weeks. I began to learn that sometimes you just have to make that decision and get in there because if it is something that needs treatment, the sooner I'd get started, the quicker the overall healing process ususally was.

    With Lupus, there are so many strange things that happen with our bodies, so I've learned if I'm ever in doubt about what should be treated immediately, I'll always call my doc's office and get their advice and if they say go to the ER, that's where I head. Oftentimes, they've cut down or eliminated my need for lengthy inpatient stays.

    I'm glad they were able to help and you're back home now recuperating.

    Stay well....

    Lori

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    I too have the discoloration I get it on my ARMS and LEGS. Its not very sexy to have splochy skin to go along with the bruises all over me as well! CONNECT the DOTS anyone? Lets just say i wear pants and capris alot more than i used to!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Chriss- Rituxan is not like cytoxan. Rituxan is considered a biotherapy where Cytoxan is a chemotherapy. Rituxan does not have the harsh long term side effects that can arise down the road as Cytoxan can. But there are still side effects none the less. You have more of a chance of reacting to Rituxan because it is actually made with mouse proteins...ha ha sounds funny right. You have to be premedicated with tylenol, benadryl and this time I got IV steroids too to help prevent a reaction. Some people dispite those pre-meds still react with chills, fever, difficulty breathing, swelling of the throat, tounge. Some individuals just can't use it. I have been lucky. I had 4 doses of Rituxan along with 6 doses of Cytoxan with my last nephritis flare 3 years ago. I won't lie and say I am partial to getting cytoxan because I know it has worked. But I've also had a lot of dose of cytoxan as a young child when I had my first flare and with the second round of it to my nephrologists were not too excited to give me any more. They feel the Rituxan (which will kill off the B lymphocytes) is the safest way to go with less side effects. Also the Rituxan doesn't make your hair thin out of make you sick afterwards. That's a plus!

    Today I'm feeling a little blah and weak. My swelling in my legs and feet have increased dramatically since they had me hospitalized and took me off the lasix for 3 days. It's such a hard balancing act right now because I can't have too many fluids, can't have too much salt and have to watch the protein. But then I am trying to get rid of this fluid which can deplete my sodium levels and it's just a roller coaster ride! I'm trying to stay calm and not get anxious but it's also hard to do when you are on 60mg of prednisone every day and you get short of breath climbing stairs and then your heart rate increases! I'm just ready for this flare to be over so I can get back to some normalcy((?spelling).
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    Default hi

    Thinking of you and hope you get some relief soon and your legs deflate and the breathlessness eases up too.

    Love Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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