Lately I have this thing where I get a date in my head and it gets stuck. I convince myself that an appointment I have scheduled (for instance) is on "xyz" date...even when it isn't. I can't tell you how annoying this is. I did this with my appt. for Dr. B (the Alpha-1 pulmo). I was certain it was on Feb. 4th, but when his office called two weeks ago to request that I send them some more info, I asked when my appt. was just to be sure. Feb. 1st...8:40 a.m. Whew, good thing I asked! So I put it into my Thunderbird mail calendar thingamabob and added a reminder to it. Days passed, new stuff cropped up, and I slipped back into thinking the appt. was on the 4th. When I didn't get a reminder phone call for Fri. I thought nothing of it. Friday came and went (with a phone call from Dr. S...more on that later), Saturday was half over and I started questioning when I was supposed to see Dr. B. I pulled up the calendar and there was nothing listed for the 4th...or the 1st...or anywhere for that matter. Everything was GONE. I went into the living room and asked Ryan to check the calendar on the laptop and sure enough, there was nothing listed. After some checking it appeared as if a software glitch ate all of our entries, including my appointment w/Dr. B which was (obviously) on the 1st, not the 4th. I cried. I had been waiting for this appt. for over 4 months and because of a glitch, both from the computer and from the clinic not calling to remind me, I missed it. Don't get me wrong, I should have written it down as well. Lesson learned.
Today I called and explained what had happened. The receptionist was extremely kind and did her best. She got ahold of Dr. B and asked if he would come into the clinic for an extra appt., yet he wouldn't. He's also booked out until May. Yep...May. So I'll be waiting forever once again. I'm on the cancellation list just in case, although Dr. B is rarely in clinic so I doubt anyone else will be as stupid as me and not show up. Needless to say I am tattooing the date for this appt. on my forehead instead of trusting my computer. Sigh...
One good thing did take place on Fri., though. Dr. S called me back after I left another message for her and we went over the recent findings. She spoke with a bone specialist/radiologist (something like that) again regarding my SI joints. He told her that what I have is degenerative, not related to the cysts/lesions in my pelvis, maybe caused by childbirth (??), and that he wants to see my MRI from last year. I told her I'd have them send it up so he can look it over and we'll go from there I guess. Dr. S also put in an order for me to schedule an u/s for my liver, spleen, veins, et al--which I did today and will be going under the Doppler this Thurs. In addition to all of that I got a referral back to the gastro docs. I specifically requested NOT to see Dr. N again, however. When I called the gasto folks today to get scheduled they put me in w/Dr. Z who I was originally supposed to see way back when. But...like Dr. B, Dr. Z is a busy man. So busy in fact that his earliest appt. is in JUNE! Once again I was put on the cancellation list and the gal I spoke with said she would also speak to the doctor to see if he can get me in earlier. If not I'm seeing someone else. Both Dr. S and the doc I saw at the Immediate Care clinic were quite adamant I be seen a.s.a.p. The person I talked to said they hadn't received a referral from Dr. S yet, so maybe when she sends it that will speed things along. I'm also going to pick up my records from the Immediate Care place and send them on to Dr. Z so that he knows what's going on. Fingers crossed that I can see him by next week.
The pain on the left side (spleen) isn't as bad as it was the weekend before last, or maybe I'm getting used to it, but it's still pretty painful. My right side (liver) is really uncomfortable. I'm still battling the nausea and fatigue. Fatigue is better, nausea is too, yet they're there. I think I've lost weight, though...bonus!
Lung-wise my Peak Flow Meter readings are holding around 350-400. I'm no longer feeling the effects of the corticosteroids from the Advair, thankfully. I go back to Dr. J (the pulmo) in another week or so. More updates when that happens.
More petechiae have appeared on my arms and now on my legs. Dr. S was at a loss as to why they are showing up when my platelets are okay. Who knows with me! :o/ I'm just glad I didn't need a transfusion...knock on wood.
Showing posts with label Petechiae. Show all posts
Showing posts with label Petechiae. Show all posts
Monday, February 4, 2008
Tuesday, January 29, 2008
When it rains it pours...
So true that statement is. Where to start? Lungs...we'll hit that first. I stopped the Advair and spoke with Dr. J's nurse and she said to stay off of the Advair, continue with the Peak Flow tracking, and Dr. J would go over things at my next visit. I have been told Spiriva might be a good option for me so I'll ask about it when I see Dr. J.
Around Wed. of last week I noticed several spots on my arms that looked like pin pricks. I have seen a couple of these here and there over the past month or so, yet never this many. I had read something about petechiae on the Alpha-1 liver email list and on Fri. decided to research about it. Unfortunately all I could find picture-wise, for the most part anyway, were purpura which are much larger and more abundant. I snapped a pic of my arm as best I could and emailed it to my dad to see what he thought. Although it was tough to tell he thought it might be petechiae. Finally my rheumy called me after I left about 4 messages in 3 days for her MA. I'm not sure if the MA gave my rheumy my messages until that 4th one as she never called back to just say, "Got your message and will be passing it along to Dr. S." Nothing. No return phone call at all. Blah. When I spoke with Dr. S I brought up the petechiae and she wanted me to be checked right away. Because it was Fri. late, late afternoon the lab at OHSU was closing and wouldn't re-open to outpatient folks until Mon. She set up an order for me to have some blood drawn first thing that Mon. but told me to try and find a lab that could do it this weekend. I did check around yet was unable to find one that could get the results back any sooner than she could on Mon. In addition to all of this Dr. S prescribed Vicoden and another anti-inflammatory to try out. I was instructed to wait on the anti-inflammatory until we got my platelet count back.
Saturday I had a hard time waking up. The nausea I had been battling for about 4 days or so was back and my left side hurt. At first I thought I might have a kidney infection and I did my best to ignore it given I am tired of having something new crop up...and feeling like a hypochondriac. I slept most of the day away as I had zero energy. Around 6:30 p.m. I stopped ignoring the pain and ran down to the Immediate Care for what I thought would be a quick piss in a cup and some antibiotics to go. Got checked in quickly, brought back to the room, given the cup to pee in, and did so dutifully. The doctor came in and went over my symptoms and health history. He told me that while I didn't have any bacteria in my urine, I did have a little bit of protein and bilirubin. Bad news bears on that last part. During the exam the pain on my left side seemed to be under my ribs. The doc asked if I had fallen or strained my side--which I hadn't. More talking. More thinking. I mentioned the petechiae, which he looked at, and immediately said that it was definitely petechiae. hmmmm... I ask if my spleen is on the left side...it is. This time he has me lay on my right side and he gently probes under my ribs on the left. "Your spleen is enlarged." Aha! Wait...that's not good, right? Blood is drawn and I am told to call back the following day for the results and to see my doctor on Mon. FOR SURE! I go home...not knowing what it all means, yet scared nonetheless. I read. I don't like what I read. So I play with the kids and Ryan. Anything to get my mind off of things. I sleep. That night my heart races, probably from the cappuccino I had at 8 p.m. Bad idea. I have a hard time falling back to sleep. My heart skips a beat here and there making me feel like everything is draining out of me all in a brief second...then it's back. Very much like my gallbladder attacks. I'm also fighting bile diarrhea again. Dumping syndrome. I hate that.
I sleep most of the day on Sun. too. I just can't get enough rest. In between I read some more. Still no good answers. I call the Immediate Care center...nothing. Wait. Call later. Nothing. About 24 hrs. later the results are in. My platelets are holding for the moment. Good news. My liver enzymes are back up, yet not sky high. Not good news, but could be worse. I sleep some more. The pain on my left side is still yelling at me, thankfully not shouting, or screaming, so I can handle it. Vicoden helps take the edge off enough so that I can bend, every so slowly, at the waist. I hate the extra grogginess it adds.
Mon. I call and ask to speak to Dr. S. The receptionist informs me that Dr. S isn't in the office on Mon. or Tues. but that Dr. S's MA can get her information at ANY time. I get put through to the MA's voicemail and leave a message detailing what has happened and how Dr. S wanted to know what was going on lab wise for me. Please call me, or have her call me. The day passes and nothing. Surprised? Not me. Annoyed? Hell yes. Nausea subsides a bit and I'm able to eat small meals. I do take advantage of this as it's been awhile since I've wanted to eat. The spleen pain seems a tad less today but maybe it's because I took half a Vicoden in the morning as my bones and joints were hurting pretty bad, and the other half in the early evening. I also feel less tired and am able to stave off my cat naps for the whole day.
Today I am back to being tired but I'm ignoring it well thus far. It's noon and no word from the MA or Dr S. I would call the gastro I saw before however I have no trust in that man. I would prefer to find a new one. How sad is that? With all that is going on and as serious as this is I can't stomach putting my faith and care into that man's hands. Sad. This time I'm quite scared...but not as scared as I am driving up this big ass hill we live at the bottom of. Ice and steep roads do not mix. :oO Priorities, priorities. ;o)
Around Wed. of last week I noticed several spots on my arms that looked like pin pricks. I have seen a couple of these here and there over the past month or so, yet never this many. I had read something about petechiae on the Alpha-1 liver email list and on Fri. decided to research about it. Unfortunately all I could find picture-wise, for the most part anyway, were purpura which are much larger and more abundant. I snapped a pic of my arm as best I could and emailed it to my dad to see what he thought. Although it was tough to tell he thought it might be petechiae. Finally my rheumy called me after I left about 4 messages in 3 days for her MA. I'm not sure if the MA gave my rheumy my messages until that 4th one as she never called back to just say, "Got your message and will be passing it along to Dr. S." Nothing. No return phone call at all. Blah. When I spoke with Dr. S I brought up the petechiae and she wanted me to be checked right away. Because it was Fri. late, late afternoon the lab at OHSU was closing and wouldn't re-open to outpatient folks until Mon. She set up an order for me to have some blood drawn first thing that Mon. but told me to try and find a lab that could do it this weekend. I did check around yet was unable to find one that could get the results back any sooner than she could on Mon. In addition to all of this Dr. S prescribed Vicoden and another anti-inflammatory to try out. I was instructed to wait on the anti-inflammatory until we got my platelet count back.
Saturday I had a hard time waking up. The nausea I had been battling for about 4 days or so was back and my left side hurt. At first I thought I might have a kidney infection and I did my best to ignore it given I am tired of having something new crop up...and feeling like a hypochondriac. I slept most of the day away as I had zero energy. Around 6:30 p.m. I stopped ignoring the pain and ran down to the Immediate Care for what I thought would be a quick piss in a cup and some antibiotics to go. Got checked in quickly, brought back to the room, given the cup to pee in, and did so dutifully. The doctor came in and went over my symptoms and health history. He told me that while I didn't have any bacteria in my urine, I did have a little bit of protein and bilirubin. Bad news bears on that last part. During the exam the pain on my left side seemed to be under my ribs. The doc asked if I had fallen or strained my side--which I hadn't. More talking. More thinking. I mentioned the petechiae, which he looked at, and immediately said that it was definitely petechiae. hmmmm... I ask if my spleen is on the left side...it is. This time he has me lay on my right side and he gently probes under my ribs on the left. "Your spleen is enlarged." Aha! Wait...that's not good, right? Blood is drawn and I am told to call back the following day for the results and to see my doctor on Mon. FOR SURE! I go home...not knowing what it all means, yet scared nonetheless. I read. I don't like what I read. So I play with the kids and Ryan. Anything to get my mind off of things. I sleep. That night my heart races, probably from the cappuccino I had at 8 p.m. Bad idea. I have a hard time falling back to sleep. My heart skips a beat here and there making me feel like everything is draining out of me all in a brief second...then it's back. Very much like my gallbladder attacks. I'm also fighting bile diarrhea again. Dumping syndrome. I hate that.
I sleep most of the day on Sun. too. I just can't get enough rest. In between I read some more. Still no good answers. I call the Immediate Care center...nothing. Wait. Call later. Nothing. About 24 hrs. later the results are in. My platelets are holding for the moment. Good news. My liver enzymes are back up, yet not sky high. Not good news, but could be worse. I sleep some more. The pain on my left side is still yelling at me, thankfully not shouting, or screaming, so I can handle it. Vicoden helps take the edge off enough so that I can bend, every so slowly, at the waist. I hate the extra grogginess it adds.
Mon. I call and ask to speak to Dr. S. The receptionist informs me that Dr. S isn't in the office on Mon. or Tues. but that Dr. S's MA can get her information at ANY time. I get put through to the MA's voicemail and leave a message detailing what has happened and how Dr. S wanted to know what was going on lab wise for me. Please call me, or have her call me. The day passes and nothing. Surprised? Not me. Annoyed? Hell yes. Nausea subsides a bit and I'm able to eat small meals. I do take advantage of this as it's been awhile since I've wanted to eat. The spleen pain seems a tad less today but maybe it's because I took half a Vicoden in the morning as my bones and joints were hurting pretty bad, and the other half in the early evening. I also feel less tired and am able to stave off my cat naps for the whole day.
Today I am back to being tired but I'm ignoring it well thus far. It's noon and no word from the MA or Dr S. I would call the gastro I saw before however I have no trust in that man. I would prefer to find a new one. How sad is that? With all that is going on and as serious as this is I can't stomach putting my faith and care into that man's hands. Sad. This time I'm quite scared...but not as scared as I am driving up this big ass hill we live at the bottom of. Ice and steep roads do not mix. :oO Priorities, priorities. ;o)
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