Anorexia

I have to say, I've had enough of this! I am NOT anorexic and anyone who knows me and truly knows what I've been going through can back me up on this. It is beyond my understanding how a doctor can sit in the room with me and talk to me about how my new treatment will cause vomiting and severe nausea and in the next breath threaten to send me to a nutritionist if I don't gain weight?!?! Are you kidding me? My weight is the least of my worries right now! At least it's stable now and I'm not losing any more. Geez, I think I have enough to deal with without having my doctors threaten me. Way to add some more stress to my life MDs!

More time

I know I get frustrated with my body. I want to recover immediately and just get back to normal. I have to admit that as slow as my progress has been, I am noticing progress. For example, I am stronger in the mornings now. I actually have a little stamina to do a few things in the morning before I start getting dizzy and feel completely drained for the day. That ~ I am calling a win!! Put it in the victory column. I'm taking what I can get for now! I'm finally wrapping my head around what I've been through this round. I guess it makes sense I'm having a tougher time with the ole bounce back. I'm starting to see the light though, and that helps. That really helps.

I just returned from my appointment and it wasn't great, but it wasn't terrible. The good news is that Dr. Raghavan actually talked to Dr. Olson while I was there! Yay for another victory! Why was that so hard? They are on the same page now and we have a plan! My H&H is slowing creeping up. I'm in the double digits now at 10. My INR was a low 1.4 (it should be around 2.5). She increased my coumadin dosage but cautioned me to be extra careful since I seem to be a bleeder at lower levels. They also decided to go ahead and start my Churg Strauss treatment. It's the chemo drug we've been waiting & waiting to start. I'm not allowed to go back to work for two more weeks. After that I'll be trying half days and easing back in to the routine. Both doctors thought this is the perfect time to go ahead and test the side effects and impact of this drug before I'm back at work. They also agreed that it's crucial to get me off the steroids as soon as possible too. This treatment will hopefully replace steroids! Whoo hoo! Sooo, tomorrow, with Zofran (nausea meds) on hand, I am starting my new treatment. Let's see what this body is ready to handle?! I know this medicine is going to be the ultimate answer ~ my body just needs to find the strength to handle it...

still hanging on

Yesterday I basically went through the motions of the day. I still felt the same as before, but was relieved to be home. I tried to get an appointment with Dr. Raghavan, but there were no openings. I had to settle for waiting until today. I actually thought that could be a good thing because it would give her time to talk with Dr. Olson so she'd be prepared to see me today.

I arrived at the appointment feeling very unsteady, most likely from the activity of bustling about. I was there from 9:30-12:50. Most of the time was spent waiting. Sadly, it was a very frustrating visit. Dr. Olson had called her, but she had not taken the time to call her back yet so she didn't have a plan for me. My H&H level was still very low and she didn't check my INR level. She said she wasn't sure why they hadn't given me a transfusion in the hospital, but that's all she said about it?? She ordered labs which took the nurses seven painful tries to find success. She also told me to go ahead and start the coumadin again on my regular dosage and return Tuesday for more labs. She said she'd call Dr. Olson as soon as these labs were back. Before I left, she told me I could go back to work by mid next week if my labs were good and I showed a great deal of improvement.

I left the appointment in a state of confusion. I want to go back to work more than anyone, but WHAT?? I'm in worst shape now than I was ten days ago when they said my immune system wouldn't be able to handle fighting the slightest bug. Is she just throwing her hands in the air and giving in? I felt like everything she did today was just a blind motion. And, as far as the coumadin goes, her advice was the exact opposite of Dr. Olson's. It's like she didn't even look at the whole picture of me and everything that's going on for my well being. I refuse to take a chance at repeating last weekend and I trust Dr. Olson's advice lightyears more. So, I'm going to hold off on the coumadin until Sunday night. My H&H level is too low to start it today. I'm also going to insist that Dr. Raghavan call her at my appointment Tuesday if she hasn't yet. This just can't continue. If she is going to be my doctor, she is going to have to take care of me and be invested in my treatment. I can't do this on my on much longer. I need help getting better. I deserve to be better.

Just Let Me Go Then

I had a lot of time through the night to think things through. I needed to fight to be treated. The night before I had talked Dr. Phillips into stopping the fluids because of the swelling. She just did it!?!? It really bothers me when my doctor allows me to be the doctor. The ENT didn't even show up to check on me like he'd promised. I also still hadn't heard a thing from Dr. Olson which made no sense if Dr. Raghavan had truly called her. So that was it, I had to fight for myself.

I called National Jewish and talked with a nurse as soon as they opened. She was very concerned about my situation. She said she'd expedite the message and try to get Dr. Olson or Dr. Fenster to call me as soon as possible.

About an hour later, Dr. Phillips' PA entered the room. She mentioned that my BP had dropped significantly since yesterday. She asked me if they sent me home, did I think I could be careful and not pass out or get back to the hospital if I did. I just stared at her. She asked if I wanted to go home. I said yes and she bounced away. Seriously....

I wasn't feeling so good, so I rested and distracted myself with texts from friends until Dr. Phillips entered the room. She said, "I heard you're a 2nd grade teacher! How awesome! I have three third graders. You're such a good patient, sooooo, I'm just gonna send ya on home. I just need to find out what the ENT is going to do. Okay!" I just stared at her. I couldn't form the words to fight for myself. She's a total dingbat. Just then the PA popped in the door and said the ENT would see me in his office in the morning to remove the packing. Dr. Phillips looked at me and said, "Super! Bye then." and bopped out of the room. Are you kidding me? I just sat for minutes in shock and then crawled back under the covers.

I decided tomorrow wasn't acceptable for an ENT visit. He had said Wednesday and I was determined to hold at least one doctor accountable. I called the office and after much perseverence I finally won a battle. The triage nurse said he would come to my room to see me before I left the hospital.

In the midst of fighting for the ENT to visit, National Jewish called back. I was hoping to answer to the sound of Dr. Olson's voice, but it was Marsha, the nurse. She said Dr. Olson was very concerned and wanted my doctor's phone number so she could talk to her as soon as possible to help me. (insert near meltdown here) I tried to explain to her that my doctor is a hospitalist and was gone. She had just left an hour before to start the discharge paperwork. There was no phone number or way to contact her (I learned that 1st hand trying to contact Dr. Woody earlier this year). I asked Marsha what advice Dr. Olson had for me and she had no clue. I was so close to help yet it was completely out of reach. I reluctantly hung up the phone.

The ENT removed the packing which did cause some slow bleeding again. He didn't seem to notice (because he didn't even check). I signed my paperwork and left. Back home, still dizzy with blood trickling from my nose, I sat on the couch trying to figure out what had happened. My phone rang and it was Dr. Olson. In a nutshell, no doctor had contacted her. She was extremely concerned. She gave me her pager number and insisted I give it to doctors for now on so they have no excuse for contacting her. She wanted me back at the hospital if the bleeding didn't stop within the hour (but it has). She's going to call Dr. Raghavan herself tomorrow to help her with the detailed plan for me.

Stacey is staying over tonight just in case something happens. All I want to do now is crawl into my bed and believe that change is around the corner.

dangling

Today I'm really starting to second guess everything. What am I doing here if these doctors aren't going to treat me? Why won't they treat me? What's going on? Why haven't I heard from Dr. Olson or Dr. Raghavan? Why are the nurses the only ones who seem concerned about me getting better & not just surviving? My gosh this is simply unbelievable!

My H&H level has dropped a tiny bit again. Today it is 8.0. I guess I'm officially surviving on half the amount of blood that should be pumping through my veins right now. That should explain why I feel so crummy. I've also started swelling even more than yesterday, actually a lot more. My hands and arms are now at least twice their normal size. The nurse said it's from the high rate that they're pushing the fluids. She's keeping a close watch on my lungs to make sure it doesn't lead to other problems.

I'm at the point now where I just want out of here. If they're not going to help me get better, then I'd so much rather be home. The thing is, I've started thinking about the long term effects of this setback. If they don't give me the transfusion I need to get me back on my feet and help my body to recuperate, how much harder will it be for me to get back on my own. I mean, let's face it, it's not like I was on the fast track to recovery before this bump. My body is struggling to fight. I don't need any additional obstacles. I want to work in December. If treating me now would make that possible, I need to fight for it. The thing is, I'm exhausted.... and feeling so defeated. It's clear that these doctors are clueless and apparently scared or unwilling to do more than bandaid me. I need help and I don't know how to get it. I am here, in the hospital, just trying to hold on. How do I fight through this.

still here, still losing blood

Sunday was another rough day. Dr. Phillips let me know that the ENT would not be checking in on me until Monday. I was getting an overwhelming vibe from her that she had no clue or confidence in how to treat me. Actually, it seemed like she was almost scared of treating me. I started feeling like I was just dangling in the hospital...just hanging on by a thread. So much pressure was building in my head from the blood. My ears had even started hurting. My blood pressure had continued to drop so they had started a bolus of fluids which means pumping the IV fluids at a very fast rate in back to back bags. I was feeling even more detached and nauseaous. The room was spinning constantly. What was going on with my body? How was this going to get better?

Today, I found out that my H&H level has dropped to 8.1. The nurse said she was almost positive I would need a blood transfusion today. That's huge. A blood transfusion? You can't just blow that off. Why is this happening? Why can't I fight anymore? It's not like I'm not trying...not doing all I can to will myself better. I was planning to call Dr. Olson for help because something had to be done. When Debbie came by to visit though, she confessed to calling Dr. Raghavan on her own. I have to admit I was ...... a bit annoyed and frustrated, but it was already done. I know she did it because she cares, but I honestly felt like she overstepped & felt powerless. She told me Dr. Raghavan was going to call Dr. Olson today so I felt like I could not call her myself. I didn't want multiple messages flowing into Dr. Olson today confusing my already complicated care. I didn't really know what Debbie and Dr. Raghavan had discussed so I didn't want to further confuse things. I decided to wait and let Dr. Raghavan call. Dr. Olson is so good, I knew I'd probably hear from her tonight or tomorrow after the two doctors talk.

That night, the ENT finally came and removed the Rhino Rockets. It was a very painful procedure. He discussed the options and I finally gave in to another form of packing to replace the Rhino Rocket. I was still bleeding and losing blood so something had to be done. He said he would check on me Tuesday and remove the new packing on Wednesday. I have decided that Dr. Phillips is useless. She refuses to make any decisions at all. She asked me if I want a blood transfusion. I was shocked. I told her I couldn't make that decision and she said "okay then we'll see what your level is tomorrow. It's dangerously low, but we'll keep pumping you with fluids for now to keep your BP from dropping too low."

Oh my gosh!

a bloody freak show

I had a very restless night of sleep (which isn't unusual). At four a.m. I felt blood begin to rush from my nose again. I sprinted to the bathroom. Thankfully it stopped after about three minutes. I felt so relieved. My head was still throbbing and I felt a bit nauseous. I climbed back in bed. Within minutes, the bleeding started again. This time it took about ten minutes to stop, but it stopped. I went back to bed with a towel and elevated my pillows hoping to prevent more bleeding. Just as I started to relax, thinking it was over, the blood started gushing like an absolute freak show. I rushed back to the bathroom where I remained for the rest of the morning. Nothing I tried would stop the bleeding. At seven a.m., I called Dr. Raghavan's service and the on-call doctor insisted I have someone drive me to the ER immediately to have my INR checked. I knew Stacey would be awake so I texted her for a ride.

The bleeding was still gushing non-stop at 9 a.m. when we headed to Baptist Urgent Care in Brannon. At that point, I knew things weren't good. What was wrong with my body? Why can't I just get back to normal?

The kind nurse tried and tried to check my INR with the finger prick, but ironically couldn't get enough blood from my fingers. Ha! She finally got a reading of 2.1. It made no sense! My INR is not off the charts for being too thin and I'm bleeding out like this? This is not how it's supposed to happen according to the official coumadin side effects!!! She also checked my H&H level which is your hemoglobin or the amount of blood in your body. It should be between 14 & 16. Mine was reading at 13.6 so bloodloss was not a huge concern yet.

The doctor explained that the only option was to insert something called Rhino Rockets into my nose to stop the bleeding. The process was wretched. As soon as they were inserted the blood poured more heavily from my mouth. Seconds later it had saturated the Rhino Rocket and was bleeding through it. While the doctor was trying to decide what to do with me, I nearly passed out. I completely passed out minutes later. When I came to, I could see the fear in Stacey's eyes. I knew things were pretty bad and hated putting her through this. The doctor had decided that with my dropping blood pressure, and all other things combined, she had to send me on to the ER by ambulance. I was devastated.

By the time I arrived at the hospital, the bleeding had slowed. I was feeling pretty rough...almost detached from myself actually. It was like I was watching everything in a fog or slow motion. They kept me in the ER for a long time on fluids watching my BP before Dr. Spanier finally decided it was too dangerous to let me go home. He admitted me to the care of Dr. Phillips, one of the hospitalists.

I was up in a room on fifth main by five o'clock that evening. I was still bleeding and in quite a bit of pain. They offered an assortment of pain meds but I declined. I just couldn't deal with the extreme itching reaction I have to pain meds on top of how I was feeling. I could get through this. Dr. Spanier had said I would just need to stay overnight for observation, see the ENT, and I would be on my way home. Dr. Phillips stopped in to introduce herself. She seemed a bit flighty and uncertain about a plan for my treatment. I am sure she just hasn't had a chance to review my chart. She said she'll return tomorrow and isn't certain when the ENT will see me.

Oh, I am so confused and tired and just can't deal with doctors that don't know me now. I'm going to believe that today was just a really rough day and tomorrow it will all be better.

I think I hate eating

I really thought the whole nutrition thing was improving...and I guess it is, but it's just a tough process. I am finally starting to get an appetite for actual food, not just snacks, but food. The problem is that I still feel sick every time I eat. I'm following orders and trying to eat regardless of how it makes me feel.

Today, my body retaliated. After eating only a few bites I stopped because I was feeling sick. Moments later I was in the bathroom throwing up. I suppose my body thought that wasn't enough because in the midst of that sickness blood started gushing from my nose and mouth. I've never had a nose bleed in my life. My stomach finally settled, but the gushing blood did not. It bled non-stop for fifty minutes (post stomach upset). I don't know much about nose bleeds, but I do know this isn't exactly normal. Now that it has stopped my head is hurting terribly. I feel like this could/must be related to my coumadin and INR level. Of course now it's Friday evening and the doctor's office is closed. I'm feeling kind of weak and tired so I'm just going to take it easy and hope this was a one time thing. All I can say for now is that I hate eating!

Bummed in Lexington

I had my follow up appointment with Dr. Raghavan today (my PCP).  I feel confident that she is a great doctor and truly wants what is best for me. She seems more than willing to work with Dr. Olson as well as the other specialists here in Lexington. I feel good about her taking the lead with my care here.

When she entered the room, she let me know she spent the previous night updating herself with my case and was very concerned about me. She reviewed her plan for stabilizing my coumadin level and explained the complications specific to my health conditions. Her hope is that eventually I'll be able to reduce the INR testing to bi-weekly, but she said for now it will likely need to be every three days.

When I asked her about getting back to work, she was very hesitant. She had me walk around the office on a pulse ox machine. My O2 dropped to 91% & my HR spiked. She said this combined with my weak system, and unstable coumadin level & nutrition just made it too dangerous for me to return to work yet. She said I need to stay out all next week too and return to her on Friday for more tests. She explained that if I even catch something as simple as a cold now, my body simply won't be capable of fighting it at all. I have to admit, I was crushed. I really feel better and stronger. I'm ready for things to get back to normal.

In the end, she let me know she would be calling Dr. Olson again to talk more in depth about her plan for me. She also told me that my focus for the next ten days is to be on nutrition. She said she wants me to let her worry about everything else medical and me to focus on trying to eat and rest so my body will begin to rebuild strength.

So, here I am, back home in Lexington, completely bummed. I almost feel farther from friends and family now than I did in the hospital. I'm so happy to be home, but I just want things to get back to normal. It's like it is just out of my reach and there is nothing I can do. I'm so tired of having no control over this frustrating body of mine.