Weekend Well Worth it!

Friday was a critical day, I went into Kirklin Clinic at 7am to get labs drawn and left two hours later with approval from my nurse and the doctors to travel! Another bonus was that all my counts were in the normal range. After weeks of hearing this is too high, and this is too low and your levels are just off, NORMAL was the best thing I could have heard. I came home had a celebratory omelet and got my bag together to fly to Baltimore for Rae's bachelorette party.

Of course nothing can be easy and on Friday hurricane Bill was working it's way up the East coast. This fact became overwhelmingly clear about an hour into the flight when the plane started jerking, dropping and making noises that a plane simply should not make. So there were a few things going on at this point in my head. A) We are 40,000 feet up in the air, dropping and noises are no good. B) Steroids make me nauseous and probably should have gone without the omelet. C) my heart rate is extremely elevated and that can't be good for the platelets. While all this is going through my head I realize that less than a week ago I was in the hospital for a life threatening illness and dammit I am not going down in a plane crash! So I spent the rest of the flight concentrating on keeping my eggs down my staring at my toes. Which I might say were perfectly manicured in Basket Case Pink and are truly well proportioned. Needless to say I landed safely at BWI.

Rae picked me up from the airport and we heading back to Frederick where I got to hang out with my dad for a few hours. He made home made kielbasa and kraut for dinner, it was fabulous. I also got to meet Cinnabar, the new Australian puppy in the household. She is cute and fuzzy and a little on the unruly side, but precious none the less. Becky came over after dinner and hung out with me for a few hours so we could catch up on gossip.

I decided to go to Pilate's with my mom on Saturday morning. Now I enjoy high cardio activities and while I do enjoy Pilate's and yoga I have always regarded it as more of a light toning and stretching activity. This was also the first time I have 'worked out' in almost three to four weeks. And it kicked my ass. I'm still sore. Kinda sad really, doesn't look like I'll be in TBC shape anytime soon. Good news is the REC offers Pilate's, so I'll have to see if I can make it to some of those classes.

The rest of Saturday was all about Rae. I met her and her family at the Braddock Community Center for the bridal shower. Her mom, Mary, made fabulous food! And her aunt provided antique ring holders for everyone to choose from. I got two (there were some left over) one that's sterling silver in the shape of a swan and a wooden one with two white ducks painted on it. Now I've never been to a bridal shower, but I thought this one was top notch and HELLO PRESENTS! I really need to work on this getting married business.

From there Rae and I went back to her apartment in Ellicott City to unload the loot. And then the unthinkable happened. I took out my laptop to get directions to the hotel, after writing everything down I closed the top and heard a pop. Now that's not normal. So i reopened it and too my horror the screen was cracked like a spider web. I turned it on and turned it off and turned it on again, closed it opened it, because all those things were going to make the screen go back to normal. They didn't. And I came to the conclusion that August is just not my month.

Decided not to be a debbie downer I put that to the back of my mind and Rae and I heading off to Baltimore to get the party started! Katz called from the hotel to say they did not have our suite ready yet, which was ridiculous since it was after 5pm, and they were giving us free drinks at the bar. Once we got there and the room was ready Katz and Courtney went up to decorate while Rae and I waited on the rest of the party! In total there were nine of us.

The night started off with an entertaining lingerie shower a few pre-night out bachelorette themed gamed and then off to dinner at RUB in Federal Hill. Which if you are in the Baltimore area and you like BBQ, go there! They have awesome brisket and sweet potato french fries. They also gave us a private room which was smart and our waiter wished us on our way with a round of shots on the house.

From there we walked to the bar district of Federal Hill. But once again it was not my month. Half way there while admiring the brickwork of the condos lining the street I managed to trip, break my shoe and hit the pavement. The only one in the group with a low platelet count falls. What are the chances? Thankfully one of the other girls lived near by so I walked to her house and picked up a pair of flip flops, much safe than heels, checked for major damage, there was none, and we headed back out.

Now another lovely steroid side effect is that I don't sleep. And I have been warned on several occasions about not drinking and taking Ambien, so I got about four hours of sleep. I got up on Sunday, picked up a bit then headed over to see Claire's apartment behind Camden Yards. Cute little place. On my mom's order she drove me back to the hotel afterwards, probably a good idea really.

We heading out of the hotel around noon to pick up lunch and Rae, Court and I spent the rest of a splendid afternoon re cooping pool side working on our tan. I made it to the airport with no problems and this flight was much better than the last. Smooth the whole way and the steward even told me he loved my hair. Jason and the dogs picked me up from the airport and I must have been feeling better because when we got home I swept the entire house. My nurse warned me about that.

I've decided that labs go quicker the earlier you get there. So I got to the clinic today at 7am again to get my blood drawn, then took a walk over to Starbucks in the North Pavilion. The barista remembered me and said I was looking so much better. I also stopped in the Blood Bank to say hi and Cindy my favorite pheresis tech was there. She was so happy to see that I was doing well and said she would tell everyone I said hi.

I headed back to the clinic to get my results. At that point I got a text from Jason that the Xterra wouldn't start. Seriously?! One more day until September. He was able to clean off the battery terminals enough to get it started while I was waiting on my results go, so that issue may have resolved its self. My nurse came out and apparently travel and drinking did have a slight negative effect on my levels. My platelet count is down to 186 and my RBC is at 10. But she said just to take it easy the rest of the week and they should rebound. So that's what I plan to do. I took my laptop to Apple and being the wonderful company they are they ordered me a new screen at no charge and will have it fixed back to new later this week. Finally good news!!

So now I'm working on my work website from home and heading to my MBA class this evening. Hopefully I can follow that up with the two episodes of Top Chef and Project Runway that I recorded last week. Apparently there are two chefs on there from Frederick, so root for them if you watch the show.

My dad is coming down to hang out with my on Thursday and COLLEGE FOOTBALL STARTS THIS WEEKEND! So once I make it to September it should be smooth sailing.

I Know Where People Who Don't Work Go!

TJ MAXX!! I went there today thinking, it's Thursday at 2pm in the afternoon this place will be empty I can get in and get out! Wrong! It was packed, there were tons of women with shopping carts blocking the aisles, guarding the various clearance sections. I was amazed. What do these people do for a job? Needless to say I was not dealing with the crowds or the check out line so I left and went to the mall instead. Which was as it should be that time of day empty and I was able to shop for a going out outfit and lingerie gift in relative peace.

Time Time Time

The saying goes "time flies when your having fun". While that may be true, I would also like to through in "time flies when you have nothing to do." My days are flying by and I really can't pin point anything that I have accomplished in the past few days.

It doesn't help that these silly steroids suck all the motivation out of me. The nurses said it could go either way, so I guess I should be happy that I'm not moving furniture and steam cleaning everything in sight. But today I have made myself a to do list! Which is not 100% since I already skipped the first task of making and eating breakfast, but minor details.

My friend is getting married on October 3! And I'm so happy to be the Maid of Honor in her wedding. This weekend is the bridal shower and bachelorette party and it's in Baltimore. I have convinced the doctors here that I am good to go and they have begrudgingly agreed. My platelet count went from 236 on Monday to 190 on Wednesday, so they are having me put in a contingency plan in place. Luck for me, we know people at Johns Hopkins! So my mom contacted a family friend who happens to be a hematologist and knows all about TTP, so if anything should go arye while I'm in Maryland for 72 hours, I can be admitted and treated at Johns Hopkins until I can get back to Birmingham. I would also like to point out while UAB is happy that I have made these plans, they are very fond of pointing out that they (UAB) rank higher than Johns Hopkins and just under Mayo, and would prefer if I received my care at UAB. Oh the ego.

Yesterday I went to my office and picked up some work items so that I could work from home more this week and next. My cubical is a disaster. Nothing is where I left it, which sent me into an emotional melt down. But there are three people now operating out of my cube in my absence so I shouldn't be so surprised. Everyone was really encouraging and asked when I was coming back, which was uplifting, but once again emotionally taxing. Silly steroids. Yesterday was also the Grand Opening of Starbucks on campus which I had started planning. After being in the clinic for three hours, at my office and visiting on campus for two hours, I decided going to a Grand Opening may have been over doing it so I went home. To which I was met by an Edible Arrangement! I don't know who came up with this wonderful edible idea, but bless them! And thank you to the sisterhood (Grandma C, Aunt Charlene, Aunt Alice, Aunt Mary and Aunt Carolyn) for sending it to me!! It's delicious! And because I have zero motivation to make meals it has served as dinner and mid morning snack!

I did take some time to go hang out at the pool yesterday. That was nice. Met some friends of mine there and was able to just enjoy the late afternoon. I may have to take more advantage of pool time for the next few weeks and work on my tan!

One Step at a Time

Today I got to experience Kirklin Clinic for the first time. While it is very efficient, it was very confusing. First I went to hematology/oncology. They informed me that I was not in the system and needed to go to Infusion Therapy. From there I was put on hold because I was not in the system, thank goodness I had my little RX form from the hospital saying I was in fact supposed to be there. Eventually they sent to me a lab down the hall to get my blood drawn. At that point the nurses said i could go home, but the doctor in the hospital had specifically said wait. So I went back into the waiting room. An hour later the doctors nurse came out and went through all my levels, gave me appt cards for the next two weeks and some much needed info on TTP, blood levels and prednisone. All in all I was there for about three hours. Hopefully it won't take as long on Wednesday.

I'm starting the MBA program at UAB today. I'm taking one class a semester because I didn't want to over do it with class and a full time job. This semester I'm taking Strategic Marketing Concepts. The book so far has been interesting and I think I'll be able to get a lot out of the class that I can put back into my current position. The challenge today will be making it through the entire class. The smallest things are taking a lot of effort I'm finding. I went to see a movie yesterday, Inglourious Bastards, (if you like Terrintino films this is a must see!!! Mom - not for you) and even though that was just sitting I was wiped out after the movie and passed on dinner with my friends. One step at a time though.

Tomorrow I might take on the task of cleaning my house or pulling weeds in the garden. At least its nice weather for it.

Life on Pause

They finally released me at 2:30pm yesterday afternoon. After signing the discharge papers they didn't even bother calling a wheelchair for me and let me walk to the car on my own accord. As many times as I had walked Jason or my mom from my room to the parking lot I never realized how far it was. Time and distance are all relative when you have nothing but time on your hands I suppose. It took us at least 10 minutes to get from the room to the car. Once in the car I couldn't help but letting out a happy scream and opening the windows and sun roof for the 5 minute drive home. It was a perfect Alabama day, 80 degrees, blue skys nice breeze, no humidity, a perfect reminder to why we fell in love with Birmingham after moving here on a whim six years ago.

The dogs were so excited they didn't know what to do with themselves when I got home. I realized just how long two weeks actually was when I got home. Things looked the same, but seemed different at the same time. While time stood still for me in the hospital everything on the outside kept moving. In my household not as efficiently as they would have run if I was here, but running none the less. After taking a long over due nap with Bettis in my own bed I set out to jump start my daily activity. I sorted the mail, changed Joe's (beta fish) water, and made another mental note to call the plumber on Monday about our dripping faucet. Of course these were all things I told myself I needed to do when I got home from work on Monday, two weeks ago.

We went to Wal-Mart to fill my multiple prescriptions and pick up school supplies since I start my first MBA class on Monday. Since it was such a nice day we took the dogs with us and left them in the car with the windows rolled down. I will go ahead and say that we do this all the time because they would rather come with us and sit in the car then be left alone in the house. After dropping off the prescriptions and picking up stuffs around Wal-Mart I was throughly exhausted and actually appreciate the benches they have scattered around the aisles. Before I found them to be plain ridiculous, who can't walk around Wal-Mart without having to sit down and take a break?! Now I know. While sitting Jason heard an announcement asking for the Penn State alumni with the black Volkswagen to please come to customer service. He went to check on everything while I waited on my prescriptions. Two women were at our car feeding the dogs ice chips and told Jason they had called the police because our dogs were overheating in the car. They tried to goad him into an argument even saying they were going to lock him in a hot car, but he wasn't biting and they finally walked away. Apparently they couldn't tell that we have two of the most spoiled dogs in Alabama and were unaware that is was an unseasonably cool day at 80 degrees. I'm sure Maggie and Bettis appreciated the ice chips, but I really wish they would have put their efforts into rescuing dogs that truly need the help, because there are plenty of them.

Speaking of spoiled dogs, we are going to take them for a walk to Avondale park. My first walk! Taking it slow and steady.

Free at Last!

It's official, I'm being released!! They took out my central line last night, so I am completely unhooked. This morning my platelets actually went up to a whopping 253,000 and the are letting me go home. The doctors came by and said everything looks good. On Monday I have to start going into the hematology clinic twice a week to get my blood levels checked. So the only thing I'm waiting on now is a list of names and numbers to call in case anything arises and a list of my prescriptions I have to get filled. Jason's already here taking all my stuff to the car. I think if we empty the room out they will get the hint and let me go!

Abby and Liz are cooking us dinner tonight and we are going to dine on Abby and Josh's patio under the stars with one minimal glass of vino to celebrate life! I can't wait!

Stop and Smell the Flowers

It's always good to take some time out to stop and smell the flowers. Luckily my room is full of them! Here's my favorite picture from Liz's photos from last night:

Light at the End of the Tunnel

I'm so close I can almost see myself at home hanging out in my hammock rather than this hospital room! My numbers are holding steady, platelets at 240,000ish, and they are telling me that I can go home tomorrow. They are planning on taking the central line out of my neck today. Woohoo! I'm still trying to convince the doctor that I should be able to go home today, but I'm just happy that there is an end in site.

Liz came over last night and gave me a hair cut in the hospital, that is fantastic service right there! And did my make up and took pictures, crazy lady. A good night all around though. Kelly also stopped by to hang out with me and her husband Andrew who happens to work on my floor and she brought brownies. Nothing against hospital food, but oh how I heart chocolate.

I met the other woman on the floor who was admitted with TTP and we did a few short strolls up and down the hallway. I think she will be in here longer than I was because she's not as active and has other medical issues. It made me think that two weeks for a disease like this really isn't too bad. Still it's hard when I can see my street from my hospital window and just think home is 20 blocks away.

I'm Told Patience is a Virtue

Yesterday was a hard day. Not physically. Physically my body is responding well to the treatment. I did not have a pheresis treatment yesterday and my platelet levels continued to hold steady in the 240,000 range which is right where they need to be. All my bruises are finally starting to fade and go away and overall I'm not as tired. I can walk laps around the floor and the hospitals and not feel so tired like I did a week ago. Still no marathon training any time soon.

Yesterday was a hard day emotionally and mentally. I have always been very independent and this has been a very humbling experience. I'm having to rely on people more than ever and not only have they been there, it was suport without question. My mom flew home yesterday which was really hard because she has been here from the beginning and having her here made me not feel so alone. She was also able to explain all the medical mumbo jumbo the doctors have been throwing at me so I could actually understand what was going on. I enjoyed her company and will miss having her here for the rest of this journey.

Dealing with work is always going to be mentally and emotionally stressful. It is a fact that work makes my blood pressure go up significantly. While working on a webpage and hooked up to pheresis, Cindy could tell when I was having issues or reading an aggrivating email because my blood pressure would rise. I talked to my boss and my HR Director yesterday about working part time from home and it was decided that I will go on Intermittent FMLA. This will allow me to work from home and still receive a paycheck for the next month, since I also found out that I do not have short term disability. I was afraid the doctor was not going to be as generous to my plight, but as always he was very understanding and agreed that I would do okay working from home starting next week, no more then 20-25 hours.

Coming out of this the hardest part is going to be slowing down, in every aspect of my life. I have always been highly active and with high activity comes high stress. If I don't slow down, my body won't get better, and then I could wind back up in the hospital with a relapse. I'll get a good dose of slow down over the next two weeks while I'm on home rest.

A comfort through this entire process has been the doctors and nurses at UAB. They are truly wonderful people and have been uplifting the entire time I have been here. When we moved to Birmingham being near a world class hospital was not on my list of musts, but I lucked out. I can never thank them enough for everything they have done and for getting me through this episode in my life.

On one of my walks yesterday I went to the other side of the floor where I was the first night they brought me into the hospital. The nurse that attended to me that night was on the floor and I stopped to say hello. She couldn't believe I was still there, but was glad to see that I was doing much better. After my mom left my rounding nurse came in and talked with me for a while and we compared dog stories and pictures. Nothing makes you feel better than gloating and sharing pictures of your dogs.

Jason brought me China Moon, comfort Wonton Soup, last night to brighten my day and my friend Liz stopped by on her way home from the gym to say hi. She has decided that A) the vitamins they are giving me have made my hair grow out of control and it must be trimmed immediately :) (it's nice when your hair stylist is also your friend and makes hospital calls) and B) that this whole ordeal should be capped off with an in hospital photo shoot. Not sure how I feel about the latter, but will post the pictures regardless.

And So it Goes...

Tuesday has been a flurry of activity compared to the hum drum of Monday. The pheresis team came up first thing this morning and we got my treatment going at 8am. They would have started sooner, but the Calcium wasn't ordered and the pharmacy had to mix up a bag for me. Once that got here things went along smoothly. No tingling or pauses at all.

Apparently TTP comes to the hospital in groups and another woman was transferred in yesterday from Montgomery. She wasn't as low on platelets as I was when she came in, but has severe allergies so is reacting badly to the treatment. I guess I never thought about what you eat goes into your blood and plasma, so those traits carry over to the donor. I'm going to go down and say Hi later.

Jason stopped by for lunch today and we walked our loop through the hospital walk ways and he told my mom and I about his company donating older scopes to the Birmingham Zoo. One of his co-workers got to go to the zoo this morning and see an otter get a colonoscopy. While I'm sure it was not exactly comfortable for the otter, the good news is that they had new equipment, previous they used the same scope for the otter that they did for the rhinoceros... ouch.

While walking we saw these signs around the hospital saying call this number and tell us how we are doing. Easy. We called. Not so easy. We wanted to let the hospital know how great their blood bank and pathology people have been, they said they would send up a form that we could fill out and then turn in at a certain office somewhere. I suppose if they put that on their signs no one would call.

I contacted the university today about getting set up on VPN access so I can start working a little more from the hospital and home starting this weekend. They haven't gotten back with me yet, but it's busy so hopefully sooner than later. Even though I can't be in the office I'm still trying to stay on top of everything I can before it starts boiling over.

The pheresis team says that I am doing great and look great. They rarely pheresis people once they have hit the 200,000 mark and really think the doctor should let me go home. We like them a lot. Here's me being pheres'd with the lovely machine of the day and our tech Cindy. She's been great! I'm making my own platelets and red blood cells now so possibly one more treatment on Thursday or Friday and then I'm out of here!

The unease sets in

It's officially been a week. I have not run, rode my bike, done kickboxing, went to ab lab or had any type of major physical exercise in a week. Also today I spoke with the temp person who was brought in to help work with my load, he is recently graduated and sounds overwhelmed, but hopeful. It's frustrating to be stuck in a place you don't really want to be when I feel fine and I'm pretty positive that I could go back and get right back in the groove. 

I guess that's why they are keeping me in here though, because getting back in the groove could cause a major relapse and set me right back here in the hospital. So this extended stay is for my own good and I appreciate the concern even if my mood does not reciprocate that appreciation. 

My platelet count today is up again to 247,000 and is starting to level out. My baseline is 280,000 so it won't go much over that. No pheresis today, the goal in mind being that my body continues to make more platelets with out the help of plasma exchange. I'll have another pheresis treatment tomorrow then they will either hold off until Thursday or Friday. 

Mari stopped by with a book of puzzles that is sure to keep me busy for the next few restless days. And my mom and I played Trivial Pursuit today, I won, but it was a close match. Jason also got me a pedometer and we walked 2,627 steps. If I can't measure my distance in miles I might as well start off at something small.

My mom and Jason went to Surin last night, one of my favorite Thai restaurants, and brought me back Coconut Tofu Soup and Chicken Panang. Not as excellent as the Chicken Noodle Bowl they only serve for lunch, but still fantastic. I was actually able to eat the entire thing, which is HUGE considering my appetite has been lacking and slow to improve. Tonight I think we are going to ditch dietary services and all three of us are going to go eat in the North Pavilion. Jason is even bring me jeans and a polo for the occasion. It's going to be nice to wear real clothes again.

So in recap. Today was a good day, my levels that need to go up went up, my levels that need to go down went down and they took off my heart monitor. So I'm on the road to recovery covered in sticky tape residue! 

Thrombotic Thrombocytopenic Purpura

I did some research on the interwebs today on what exactly TTP is. Most of the sites I found including wikipedia were extremely technical and when you have absolutely no medical knowledge like myself it's nice to find an information site that breaks it down. 

http://www.ouhsc.edu/platelets/TTP/what%20is%20ttp.html

This is pretty much what the doctors have been telling me all week, but the good news is that I am responding very well to treatment. The pheresis nurse said today they have had people in the hospital for 10 weeks, thank goodness that will not be me. 

I would like to encourage everyone out there to go donate to your local red cross. They pull both red blood cells and plasma from donated blood. When you donate blood they take about one unit, I'm going through 14 plus units per treatment, so you can see how far one donation can go. I've always tried to donate whenever I can. I haven't been able to donate since last September when I was diagnosed with West Nile via the Red Cross and now with the transfusions I won't be able to donate for at least another year. So I'm passing the buck so to speak and hope that everyone out there will go donate for a good cause. You never know who will need it. 

Sunday, Sunday

Today they came in and my numbers have exploded to 216,000. Which is not only in the normal level, but almost to my baseline of 280,000. The resident came in and told us the good news and is pleased that I am responding so well to treatment. Because my levels are continuing to rise they are going to hold off on the pheresis tomorrow, do another treatment on Tuesday then either wait until Thursday or Friday to do another treatment. If all goes well and my levels maintain off the pheresis HOPEFULLY I can leave the hospital as early as Friday. 

My mom and I have been walking around the hospital so I can keep my strength up. Unfortunately the doctors are saying no TBC (Total Body Conditioning) or Kickboxing  classes at the REC Center for a while. But they did say I could do low impact activities like walking, yoga, biking, swimming, etc. Probably won't be running any marathons any time soon though. Today however we are going venturing out to the Yellow Concourse and venture into the Kirklin Clinic. We think it's about a mile walk round trip, so watch out. 

My Lovely Neck IV

As I mentioned the other day they moved the main line they have been doing all the pheresis treatments through from my groin to my neck. So everyone can experience the loveliness here's a picture of me and my neck IV in my lovely hospital room. On a good note I tend to sleep on my left side anyway so I haven't had to many issues sleeping. It's getting more tolerable by the day, but I won't lie and say I don't notice it.

They did another blood transfusion this afternoon to help boost my hemoglobin levels which dipped slightly this morning. Doctors are continuing to watch all my blood levels are are doing a D-dimer test to look for blood clotting ability. Whatever will get me out of here sooner, I'll take it! 

On my way to Normal

At 7am this morning the attending resident who has been walking me through this process from the beginning came in and informed me that my platelet count is now at 167,000! That's right people, I'm officially in the normal platelet range! Yeah! 

But they are still not letting me out of here. They are still nervous that I will go into remission and my platelet level will drop again, so they are going to continue doing the pheresis today (sitting through it now) and again tomorrow morning. They are going to see how things look on Monday and I may be able to skip one on Monday or Tuesday. I'm hopeful that means I will be out on Wednesday or Thursday. So keep your fingers crossed. 

I was able to take a longer walk today through the various connected hospital buildings and even went as far as to venture outside on a hospital patio. It was nice to take a few breaths of fresh air. I pointed out all the different hospitals to my mom and told her how to get to my office from where we were. 

Today is Freshman move in day. So while I did try to convince my doctor that since I am doing so well today that they should let me go to the Pepper Place Farmers Market for an hour (that got a good laugh) I realized that even if I wasn't in the hospital I would be working today. We are having $1 day with burgers, hot dogs, chips and drinks at the Diner outside the main Freshman dorms, so very busy day. I've been advertising the event, so I'm hoping that in my absence everything is going smoothly. I'm sure it is, but my mom is going to walk up there later just to see how things are going, why not it's an inexpensive meal.

Fun Friday

So today let me put on pants and actually walk off the hospital floor I have been cooped up in all week. My mom and I took our first walk down to the North Pavilion dining area which is also run by Sodexo. I tried to get us an employee discount at checkout but to no avail. 

My mom swears no one was staring, but I would catch people checking out the multiple IV lines coming out of my neck and then looking down at the floor. My mom took a picture of it this morning,  it's not that pretty and I really thought it was going to be a little more discrete but what can you do. 

I could tell how odd I looked when we were walking through one of the market lines and a toddler who was hanging out over his dad's shoulder had been laughing and bouncing around stopped moving and just stared at me. I tried to wave and make cute faces, but he wasn't having it, I walked away and tried not to scar him for life. 

The phoresus people were terrific again. Today's tech was originally from Ohio so had to give me a hard time about my Penn State sweat pants. But then her and mom were able to talk about Michigan and the UP which was fun. The machine decided to putter out half way through the process today, so they had to bring a whole new machine up and restart the process. So took a little longer than usual today. Next treatment is scheduled for tomorrow morning around 9-10am. Jason is going fishing so he can get some fresh air since he's been spending all his time out of work in the hospital with me. And i scheduled my mom for a massage in Homewood for tomorrow afternoon, because these chairs are not comfortable and she needs to get out too. 

My neighbors Abby and Josh came to visit tonight. They brought their world famous (at least Avondale famous) Chicken Tortilla soup. It was fantastic as was the company. Time just kind of passes in here, so it's nice to have visitors. I'm staying positive that I will be out of here in no time and picking up all sorts of new home rest hobbies like knitting, who wants a scarf? 

Not how I saw my week going

So I'm posting this from my hospital room at UAB Hospital in the Spain Wallace building. I've been admitted to the hematology floor and so far am on day five of my stay. Let me start from the beginning. 

Last Thursday (8/6) I started noticing bruising on my legs and arms. I pointed them out to Jason and we both figured that I had bumped into something or when I was wrestling with the dogs I had just gotten a few scraps, no big deal. That evening after my New Student Orientation sessions I just felt really tired, which also was nothing unusual. On Friday I noticed more bruises and was dragging through my work day. I had plans to go out with friends that evening and had to go home and take a nap before meeting friends for dinner. At dinner I was exhausted and couldn't finish my dinner. Instead of going out for another friends birthday I went home and climbed into bed. 

Saturday morning I tried to go biking, but popped a tire, so ended up going home picking up the dogs and taking them to the farmers market. After one loop around the market I had to take the dogs home and blamed it on the heat. I spent the rest of the day in bed and really didn't have any energy to get up and do anything. 

On Sunday morning I felt bad that I had been so lazy the day before and decided that my laziness was contributing to my headache and overall fatigue. So I got up and met a friend and we biked about 4 miles before I said I had to turn around and head back, so an 8 mile ride overall. I was a bit tired, but felt okay, so I cleaned the house and did laundry, then collapsed for the rest of the day. At this point I had posted something on facebook about feeling tired and more bruises were still showing up so my mother sent me a text saying to call her and let her know how I was feeling. After telling her about the bruising and the exhaustion and the headache she told me to make an appointment with my doctor first thing Monday morning. 

I called my doctors office as instructed first thing monday. My doctor did not have an open appointment until Wednesday so I took the first available physician. I showed up early at 8:30am and after talking to a fourth year resident and then the doctor they decided that if i hadn't been in any cat fights or fallen down a flight of stairs in a drunken stupor that I needed to have blood work done and sent me across the hall. An hour later they came back in and said I needed to head down the hill to the UAB ER. 

At this point I was told I had a platelet count of 11,000 which was extremely low and was highly unusual when compared with my previous years annual blood work that had me at a platelet count of 280,000. I was able to drive myself to the ER and called my mother, Jason and work in the process. 

Once arriving at the ER they knew I was coming, which was nice, and had me back in a room answering questions and explaining my symptoms within ten minutes. A very nice no-nonsense doctor came in and explained what they thought was going on, what the possible causes and treatments were and then whisked me off for a cat scan to make sure the chronic headache I was having was not due to blood on the brain which apparently is possible at a platelet count that low. Thankfully the scan was clean. At this point they had drawn blood at the ER and done their own test and had reported a platelet level of 6,000.

My mom cancelled her patients for the week and flew down on Southwest and Jason took the day off work to hang out with me in the ER. Around 3pm they moved me into a hospital bed in the Spain side of the Spain Wallace Tower. I had a resident and two interns talk to me about what they thought was going on and then inform me that they needed to insert a "Central Line" into one of my larger veins, their vein of choice that evening was the femoral vein in my groin. While this was terrifying to me the two doe-eyed interns assured me that their resident had done this plenty of times before and there was nothing to worry about. They were wrong. An hour and a half later and three missed attempts they brought Jason back in to comfort me and left to go find someone a little more experienced.

Two hours later the A-team from hematology arrived with an ultra sound machine and morphine and were able to get the line in without any pain in the first try. They are officially my heros of this entire endeavor thus far.

After the central line was in I started a treatment called Plasma Phoresis, which basically hooks me up to a machine and sucks out my blood, filters out the anti-bodies and plasma then mixes it with new donated plasma and recirculates it into my body. It takes about three hours and the first night did not go so well. But the attending for pathology, the administering tech and the resident all stayed with me until almost 11pm. 

Day two was much better, and I was moved to the Wallace side of the Spain Wallace Tower and am still residing in room W942. The nurses have been fantastic and have been taking my blood pressure, vitals and blood samples religiously. There was an attending doctor on the floor who we were not fond of, and for fun we will call him Dr. Gloom and Doom. He rotated off the floor yesterday and we like the new doctor a lot better. Dr. G&D needs to work on his bedside manner and learn how to talk with people instead of at people. 

Yesterday they decided that I needed the central line in my neck instead of my groin. Once again not a very pleasant experience, but it's much more comfortable then having this three pronged IV hanging between my legs.  So now I'm in the middle of my fifth treatment and things are going smoothly. 

The doctor came in the morning and told me that I was responding extremely well, but not to get my hopes up on leaving the hospital until next weekend. They have had several TTP patients that respond well, leave too soon and then relapse. So they don't want that to happen to me. They want me to stay here probably through next weekend, then house rest through Labor day. No exercise or anything too high activity through October, which really stinks, but whatever I need to do to get better. 

So in the hospital I remain. I'll try to keep everything updated on here. But I'm in room W942 at UAB hospital and I'm allowed to have visitors, so if your in the vicinity please feel free to come visit me. Friends are the best therapy... :) 

Thanks for all the emails and phone calls. I'll be back to normal in no time. See you all on the outside soon! 

-LC