transfusion confusion

This is one of the many times that my own medical degree would truly be beneficial. Needing several specialists comes with the problem of dealing with their differing opinions. What's okay... what's not so okay? What can we blow off for now? What should we really worry about and act on immediately? I'm left in the middle trying to decipher the medical lingo and make the best decision for myself. Lately, I find myself confused and wondering who to trust.

This transfusion situation has become a perfect example. I don't know what to think anymore. I rushed back to town for labs and my appointment with Dr. Neal on Tuesday. He voiced serious concern about my H&H levels and stated he will not feel comfortable reinstating the treatments until my hemoglobin is stable at 11. When I left his office, the PA, Sarah, from Dr. Raghavan's office called. (Dr. Raghavan was on vacation). She said my lab results were in and my hemoglobin was 8.4. She was calling the infusion center to schedule my transfusion for Wednesday morning.

When she hung up, I sat in the parking lot frozen for a moment. A transfusion... a rush came over me. I felt lost, overwhelmed, and completely alone. Is this something I could do alone? I wasn't sure. I would have to though. And it seemed like the right answer...finally. Maybe it would give my body what it's been needing to recover. Maybe I would finally start to feel stronger ~ not so dizzy. Somehow from there, I put the keys in the ignition and moved on with my day as if nothing was different. Sometimes you just pick yourself up and move forward... alone or not.

It turned out, being alone didn't matter. My hemoglobin was a tad lower this morning. When they touched base with Dr. Raghavan before starting the transfusion, she cancelled it. Yes, that's what I said, cancelled it. The tech was befuddled and so was I. She said she'd decided to have me try iron tablets instead. At this point, I don't know what else to do but just move forward. I can't change a doctor's orders. Maybe the iron tablets will be the silver bullet - who knows?

Well, I guess they won't. I just left Walgreens where the pharmacist told me I should take iron at the same time I take coumadin because it will bond with it. It will also interact with some of my other meds. He highly recommended that I NOT take the iron tablets, but that I talk with my doctor immediately.

Seriously? That was enough for me. No thanks! I'm over it. I'm not calling another doctor's office to beg someone to listen to me relay crucial information about my health. Forget it. I'm just not going to do anything. Surely one day soon, one of my doctors will figure out the right way to help me. Until then, I'm out.

more news

I'm getting to the point where I'm starting to worry about myself a little. Looking back, I can see that I've been disconnecting in a way, little by little over the past few months. I guess it's been my way of dealing. I've been trying this and that for any type of escape. I've been numb to emotions yet feel like my heart is constantly crumbling at the same time. I think I could easily spiral out of control. I don't know how much more I can handle and I'm not sure if I really believe anymore. I want to & I think I still can...I'm just not sure.

Dr. Neal's nurse called Tuesday about my labs that were drawn Monday. My H&H level is down to 8.4. He is extremely concerned. He said I needed to get into my PCP immediately to have it addressed.

Well, I called Dr. Raghavan & saw her today. She was more baffled by the labs. She seemed to be at a loss for what to do. She kept asking me what Dr. Olson would do. Well, I don't know because this has never happened before when I've been with Dr. Olson! She did diagnose me with bronchitis & a sinus infection, but couldn't figure out what to do about the mysterious blood loss. I finally told her I needed to be somewhere and she said to just return next week to have the levels checked again. If they are still low, she wants to do a transfusion.

I can't begin to recount the thoughts that flooded my head as I drove away. Talk about being baffled! Just then, the phone rang and it was Kaci, calling for Dr. Olson. She had also received a copy of the labs and was quite concerned. I told her what my doctors were doing (or not doing). She insisted I stop taking my treatment medicine because it could be the source of the problem. She said she would call my PCP and share her thoughts. I am supposed to go back on Tuesday for more labs.

I don't want to process all the what ifs of this situation. I just know that this treatment was supposed to be my answer. At the time, there wasn't another option. I don't want to face the thought of not being able to have this treatment...

and then the phone rang

Today was kind of a tough day because I didn't feel well. I seemed to worsen as the day went on with aches and chills. By mid afternoon I had a full blown 102 degree fever. Nice timing ~ just two more days until winter break and I wasn't going to make it. My body has such a way of making me feel like a complete failure over and over again. I just want to go to work and do my job....it sounds so simple, but I'm having such a hard time with it this year. :( 

I was fighting the fever with Tylenol and rest when the phone rang. It was my scheduler Jennifer from National Jewish. She surprised me by saying Dr. Olson wants me back in Denver in January. I was feeling a bit out of it so I asked her to clarify ~ I was hearing her correctly. Dr. Olson has been concerned about my labs & the direction of my care and wants me back at National Jewish for a follow up with all seven of my specialists. The scheduling of that many doctors was a challenge for Jennifer, so the trip isn't actually going to happen until the week of February 20th.

I just hung up the phone moments ago and I feel frozen....numb....paralyzed even. I'm not ready to deal with the decisions that accompany a medical trip again so soon. I think I'm going to deal with it by not dealing with it for now. I'm just going to keep this phone call to myself for a while. I don't want to lie to anyone, but I just can't deal with travel drama right now...

I'm alright...

That's my new default answer. People were getting upset with "I'm fine" so I had to find a new line..."I'm alright" seems to be my new go to phrase. The thing is, it's actually true sometimes, so I don't feel so bad saying it. The funny thing is that most people think I'm doing GREAT because I can totally pull off the "look" no longer than I'm at work. That's a good thing because people have worried about me way too much.

Tomorrow will mark the fourth week of my Churg Strauss treatment. My dosage has been doubled once already. Hopefully it won't need to be increased again. I'm due for labs mid week to make sure my body is tolerating it "properly". The side effects haven't exactly been fun. It seems to average out that I spend every other day throwing up ~ so I suppose I should be thankful it's not every single day.

The treatment is completely destroying my INR level as expected. My doctor has continued to increase my coumadin dosage but my INR still isn't stable. I'm having it checked again tomorrow. It seems like it is higher now because I smashed my finger today and it bled endlessly from beneath the nail. It sounds crazy, but I hope that is a sign that my level is closer 2.5!

Finally, I guess I should talk about strength & work. :( I wasn't cleared to go back to work full time, so I'm still working half days. Today was the first day of my third week back. I've tried to pretend like I'm loving it. I thought it would get better. I'm hoping the problem is that I'm just working mornings and sharing my job with a sub. It's time to be honest with myself though, I'm hating it. I'm absolutely hating it. I've never hated my job so much. I feel completely lost ~ out of the loop. I have no idea what's going on after I'm gone. I missed so much while I was gone. I don't feel part of things at all anymore. I feel completely disconnected. I missed too much and I can't get it back. I can't make it up. I also don't feel good half the time I'm at work. I am so sick of pretending that I feel great. I'm exhausted by 9:00 a.m. Some days are certainly better than others but I can't go on like this. I want to love my job again.

I'm just tired and ready for the fight to be over. I want my life back.

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.

I get the prize :-/

I know I'm a stubborn person. I like to think it's a quality that has helped me survive in some ways. I know it can also be a bad quality though. Sometimes when doctors say things to me, it takes a while for it to hit home. Sometimes it's so overwhelming, I don't even know how to process it. Dr. Huie slammed me today with a pretty severe statement...

"I am the worst (most severe) asthmatic he, Dr. Olson, & National Jewish have ever treated."

...this from the top lung doctors in the nation's top lung institute.

...this is an overwhelming thing to hear, especially for someone who likes to pretend everything is "okay"...

Okay, whoa, okay, but, whoa...

Thursday was a slow day, but overall good. My lungs started improving again. Dr. Cosgrove felt confident about staying on course with the steroid taper. I was still reactive and sensitive, but he expected that. My INR blood level dropped a tad, but he felt like an increase in the coumadin and one Lovenox shot would get it back on course. There was a chance I could be released Friday.

During the night, I started feeling more pain and irritation from my IV site. It had become infected. :(  It made me sick to think I had to go through getting yet another new IV.

Dr. Cosgrove spent a lot of time with us today. He cancelled the laryngoscopy because he was concerned my airways are still too sensitive. He said they can order it in a few weeks if my doctors back home feel it is necessary. The good news... no awesome news is that he said he is ready to release me tomorrow morning. He said it is the right time to send me back home and transfer care outside of the hospital. The, eh, other, news is that my INR level dropped even more. I need more Lovenox shots and a higher dose of coumadin to be in the "safe" zone. That means my parents are going to need to administer the shots over the course of the weekend drive home. OMG!! Dr. Cosgrove's concern was that the nurses have been having trouble safely administering the shot to me due to malnutrition. My parents will be trained in the morning by one of the best nurses. Dr. Cosgrove is also prescribing some numbing cream that is typically used for ports in cancer patients. He said it should make a difference in the pain. (Oh I hope so). I will need to get to the doctor in Lexington, Monday morning for an INR level to decide the next step.

My head is spinning with information, hesitation, excitement, uncertainty, exhaustion...  I can't wait to be home. I want to see my home, my friends, my dog, my bed, my yard, my little classroom, my students, my family.  I wish I could blink myself there - avoid the added exhaustion of the 1300 mile drive. I can't though. Once again, I must take my victory and run with it. I am going to go to sleep on this last night at Rose Medical Center, so thankful for all they have done, and let go of the things I cannot change. Tomorrow morning Dr. Huie will be back to fill in the rest of the blanks about my immediate plan. The plan that is All for Good...

Stand By Me

All for Good ~ I really do believe that. It wouldn't be the title of the blog if I didn't. One good that has come from this tough month is that I think I've had a chance to learn more about myself. I've also learned more about my friends and family.  I've really never been the type of person to expect things from people, but certainly am appreciative. I also don't thrive on attention, but like anyone, I need support. My eyes have been opened by the friends who have stood by me this month. I am truly blessed and know that I wouldn't have made it through without their endless encouragement. I am better because of these new wonderful people in my life!

Baby Steps

If there is one thing for sure, I can say that the professionals that work here at Rose Medical Center and National Jewish are true professionals in their fields. They are concerned about my COMPLETE well being not just the aspect that is most critical at the moment. This is just another reason I know I'm in the right place. With everything that is going on, dealing with food seems like another impossible mountain to climb. Yesterday was a good day though, for the first time in ages, I actually craved something! It was rice, which is too low calorie according to my nutritionist, but nonetheless ~ I wanted it and ate it! Yay for positives ~ let's add one to the victory column!

Dr. Cosgrove tapered my solu-medrol back to 12 hour doses last night. Another victory! The basic plan was that if my system held strong, he would switch to oral steroids by Thursday and I could be released by Friday. Mom and Dad were giddy with the idea of hitting the road. They immediately began dialing numbers to spread the news when the doctor left the room. With this plan in place, I didn't get my 6:00 p.m. treatment and my family left the hospital with high hopes of heading home soon.

Overnight, I could feel my newfound "ease" to breathe was slipping away a little. I rested on my bed watching the beautiful snow fall just praying my lungs would rally. All day I knew I was a bit worse, but it was minimal enough that I was able to play it off. I'm so tired of being a disappointment to my family. They are so ready to go home. I'm trying so hard to stay positive and focused but it's so hard when I'm not the only one being impacted.

Anyhow, when Dr. Cosgrove visited today, I was very quiet. I assured him that I was okay. He agreed to taper the solu-medrol again but with a big warning. He said that he and Dr. Olson spoke today. They both believe that my health is in such a reactive and critical state that if I spiral again soon, the outcome will be much worse than this time. To top it off, he also noted that my INR labwork dropped and if an increase in the coumadin doesn't get it back on course, I'll need to go back on the Lovenox shots. Deep breath, (well, mentally anyway).

About an hour after Dr. Cosgrove left, Dad and I decided to go for a walk around the hospital to look at the snow out the windows. As I was walking, an outside door opened and the cold air snatched my breath away. We turned down a long hallway with an odd smell. It happened so quickly there was nothing I could do. I could barely breathe. I had a lost a weeks worth of progress. I was calm of course, trying not to let Dad know how bad it was, but he could tell. Dr. Cosgrove has cautiously decided to monitor me through the night on the current plan to see if I might improve without increasing the treatment again. At last check my O2 was down to 93% on room air. It's been holding strong at 97% for a week now.

I guess this is truly what you'd call baby steps in progress. I'm surprised to admit that I'm not feeling defeated right now. It's odd. Honestly, I feel a bit numb tonight. And maybe that in itself is a gift.

A Silver Lining

Here are a few day brighteners and random pics from my stay at Rose Medical Center...

Happiness from Jackson (yes, Jackson via Bub & Melodie!)

Sunrise from my hospital window.

Dusk from my hospital window.

Posters sending love from 2nd grade!

More posters & cards adorning my beautiful room.

Even more cards, posters, and love sent from home!

Gorgeous and aromatic flowers from amazing friends from school!



Midday view from my room.







A gift from Denver to me ~ S N O W !!!!

 









A Sincere Consultation

This was a very long Monday. Debbie and Melodie were winding down to fly home and Mom and Dad were clearly hitting a wall of stress and exhaustion. So much was in the air but not being said.

The good news was that I actually had some air movement in my lungs, but I was having a harder time fighting the effects of the treatments. I fell asleep for part of the late morning while my visitors patiently watched time pass.

Dr. Cosgrove entered the room around 3:00 and stayed to talk with us for an inordinate amount of time. He was thorough, sincere, and resolved. He explained once again the serious nature of my condition and how they are dedicated to me and only what is best for me specifically, regardless of what it talks. He discussed the complexity of my rare conditions and why that has made treatment, diagnosis, care and improvement so difficult. He immediately made it clear that I am no challenge they are ever going to walk away from. He wants me to believe that even though it will be tough, he and Dr. Olson are determined to help me to better days. A lot will need to change. He relayed that it will be more difficult for (even me) to push through. I will also be on a very intense schedule with the doctor to monitor everything about every treatment and how they are interacting with one another. It will be a long road, but they believe there is hope. Right now, the things that are working against me are all things he and Dr. Olson are trying to find alternatives for so I can regain strength .... and fight again.

This has been a lot to take in, and of course I'm recounting it all in a vague overview. It's just so blurry, so hard to absorb. I am believing that things were revealed here all in part of God's great plan of good for me. He had to know that this is where true action would be taken and His plan would follow course. So once again, as tough and painful as things are now, more than ever I have to find a way to focus on the ultimate good of His plan.

Speaking of ill effects and the way my body is reacting to the treatments, this evening was pretty rough. My veins are taking a true beating from the IV meds and unfortunately they weren't the strongest blood pumpers in the first place. My IV site gave out this afternoon and had to be changed before my next treatment. It didn't go near as smoothly as last time. It took eight tries, three specialists, and a vein ultrasound to finally get a successful new IV started. With each careful try, the vein would blow with more intense pain than the one before. With a disappointed look, the IV nurse told Mom after landing the "successful" site that it would not likely last long. It has made it through the first few treatments, but constantly aches. Once again, I have to shift my focus, I have to look at what is good and what is coming. I can handle this, I am stronger than this pain. I am alive and I am on course for better days.

Watching the sands pass through the hour glass

Little has really changed since I wrote Thursday evening. My overall well-being has diminished to some extent each day because of the toll the powerful treatments are taking on my weak system. It's all been making me feel pretty rough overall. I barely have a voice and feel quite weak and achy. I've still been fighting to breathe, but the huge increase in solu-medrol is making a big difference. I guess the worse part, besides how I'm feeling is the pain from the Lovenox shots. The full dose is significantly more painful than the minimal dose I've been on. They say it will only be a few more days though...I can push through for that...I can.

Friday afternoon, Dr. Olson stopped in to visit me. It was unlike any encournter we've had. She was so serious and resolved. She explained that my health in a pretty serious condition and she won't allow me to leave her care until I am in a much safer state. She's on vacation beginning this weekend, but said that she'd still be in town for the first part of next week. If I am out of the hospital by then, she said she'd come in to see me again before I head home, if it's not until later in the week, she would leave all the information for Dr. Cosgrove, her ILD partner to meet with me. Right now, she and Dr. Katial are working on the plan for my course of treatment. The immediate concern is to get the treatment for the pulmonary embolism on track. After that it would be imperative to follow suit with aspirin desensitization, treatment for Churg Strauss and everything else.

She also made it clear that Dr. Thompson is not the safe way to go any longer for my "go to" doctor. He just isn't available or reliable enough. She recommended that she speak with Dr. Raghavan and get her on board with the treatment plan. My immediate needs will require visiting the doctor bi-weekly for labwork, well checks, and weigh ins. As far as work, she said that would depend on how my body fights and handles all the combined treatments in connection to the germy school environment. That's something I just won't allow myself to process for now...

So, for the time being, I've been fighting with everything in me to stay strong, as strong as I can. Because this is harder than anything I honestly ever thought I was going to face on this trip to Denver. I am so blessed though, because, Melodie, Debbie, and Katie just popped in like sunbeams this weekend. They decorated my hospital room with cards from school and their bright smiles. They filled the silence with hilarious stories even when I couldn't laugh. Katie read blurbs from the paper and they brought nutty stories from the hallway when my walking privileges were taken away because I was getting worse. It was a gift I'll never be able to repay or explain, but I will NEVER forget a second of the time they gave to me.

The high doses have begun to pay off. My breathing is finally improving again. Dr. Wells dropped by today and said they are dropping the solu-medrol again to see how I react. He even gave me permission to spend a little time outside on a bench in the beautiful Denver sunshine! What a treat after this long week inside! My ECHO is now scheduled for tomorrow morning to check for eosinophils in my heart. The other big focus as I mentioned is nutrition. They are attacking me with every supplement and calorie possible at this point. It's practically humorous how often the nutrition people come into my room now to bring trays of this or that. I'm doing all I can to try to eat, but it feels like such a monstrous mission.

Anyhow, the weekend is coming to a close and it's almost time for another round of treatments. I don't know what tomorrow will bring as far as how I'll feel, or test results, or even a new outline for my week. All I know is that this is where I am now, and I am making it ~ I really am making it.  More than just making it, I am going to beat this!