Yesterday’s hematology appointment went great!  My platelets were at 106 and my hemoglobin was at 12.5. Because of this, he dropped my 5mg a day dose to 5mg Monday, Wednesday, Friday!

I have another appointment in two weeks (January 4th) with a different doctor at the center. If my numbers are still good he will drop me to just Tuesday, Thursday. Two weeks after that I can potentially be off the steroids completely!

With that being said, today is officially my first day not taking Prednisone in almost seven months – 207 days to be exact!  Best Christmas present ever!!!

Thursday started out a normal day. I woke up and hopped in the shower. Towards the end of my shower, my foot slipped and my head slammed into the wall. To my knowledge, I didn’t lose consciousness and I definitely didn’t fall over, but that, unfortunately, is because my head caught my fall. I quickly finished up my shower and then sat down on the bed. My head was pounding and the left side, which hit the wall, was starting to form a bump.

When the average human bumps their head they need to watch for signs of a concussion. I am not the “average” human. Anytime I hit my head I have been instructed by my hematologist to get it looked at. It is far too easy with ITP to develop a brain bleed. Granted, this is generally only a concern when your platelets are dangerously low, which mine aren’t, but I spoke with my mother and her and my husband agreed it wasn’t worth risking it. My husband said he’d rather take me to the Emergency Room and find out nothing is wrong than have something happen and find out later that there were things he could have done to prevent it.

There were a few strange side effects that caused his concern to grow exponentially. For one, when I tried to stand up to get dressed, my legs were shaking so much that I wasn’t able to steady myself enough to take a step. Luckily the second time I stood up to try I was able to move. Another thing that was cause for concern – I ate a bowl of the cereal I eat every morning and it tasted strange. It didn’t really taste like anything. Just crunchy.

When we got to the ER I saw a nurse in triage who handed me a green laminated piece of paper reading “FASTTRACK”.  I was sent down a hallway and told to follow the Fast Track signs. When I arrived at the Fast Track room, the nurse immediately handed me a cup and asked for a urine sample. Within five minutes of providing the sample a nurse walked me over to radiology and told to sit and wait outside the CT room. A couple of minutes later, the door opened and two technicians brought me in to the CT machine. I laid down on the table and one of the technicians adjusted it to the right height before heading into the control room with the other gentleman. They took multiple scans of my head over the next ten minutes and then sent me back to the Fast Track waiting room, which is where my husband had been waiting for me. I was told to remain in the waiting room until a radiologist could look over my scans.

About a half hour later, the nurse that had walked me over to radiology returned with discharge papers. She said my scans looked great – no intracranial bleeding!  On the discharge papers were symptoms/signs to look out for. She said I needed to be watched over the next 24-48 hours and if any of the symptoms should appear, I was instructed to return to the ER.

Luckily, I’ve hit the 48 hour mark and no overwhelmingly strange symptoms have occurred. I did have a weird tingling in my hands for about five minutes on Friday and some carrots I ate earlier tasted like sweet potatoes, but I think I’m just being paranoid. Crisis averted!

My CT scan was yesterday at 1:00 at a radiology center on the East side owned and operated by NYU Hospital. I was asked to arrive an hour early so I could prepare and drink the oral contrast. My husband and I drove into the city and parked nearby. Around 11:45 I signed in and they took me back a few minutes later.

In the back was a second waiting room for patients only. The movie The Last Holiday starring Queen Latifah was playing and technicians and patients in gowns kept shuffling around. A nurse brought me over two 16 oz containers of Barium around noon and said I had a half hour to finish one and a half of the bottles (approximately 24 oz). For anyone who hasn’t had the true pleasure of drinking Barium, you’re missing out (note the sarcasm). The only way to drink that crap is to pretty much close your eyes, plug your nose, & chug. I don’t want to sound overdramatic, but I am honestly shuddering just thinking about it. It somehow has both a slimy and chalky consistency and looks like milky, cloudy water. I was under the impression that there would be flavors to choose from, but that was not the case. I’m not really sure if the Barium I was handed was flavored at all, but if it was, I wouldn’t recommend the flavor. I could spend another twenty minutes writing about the Barium and all of the different ways it disgusted me, but I’m going to move on.

After I finished the container and a half of Barium it was about 12:30.  The technician wasn’t ready for me yet. She finally called my name around 1:00 and I followed her to a changing area. Since I had on leggings, rather than jeans or anything with a metal button or zipper, I was able to stay in my clothes. All I had to do was take off my bra because of the metal clasp. She gave me a gown to put on so I wouldn’t feel so exposed and told me when I was done to go back to the waiting room. By this time, the movie had finished and was about to auto-restart. When I had originally sat down in the back waiting room, the movie was about ten or fifteen minutes in. It wasn’t until it was about twenty minutes in (the second time around) that the technician finally brought me into the room with the CT machine. I set down my coat and bag on a table and the technician explained to me that the bottle and a half of Barium had likely made its way down to my intestines by now (since I had finished an hour prior) and it was time to drink the final 8 oz to be sure the Barium was where it needed to be. My GI had told me that the Barium is used to coat the lining of the stomach and intestines in order to better view my organs and check for inflammation. She said it works almost like a balloon – expanding the areas that need to be examined.

I laid down on the table and the technician placed an IV in my right arm. She then adjusted the table height and left the room to take a few scans without the iodine contrast. Once she had what she needed, she returned and began the saline flush and then the iodine. If you recall my earlier post from when I was in the hospital ER in May, this wasn’t my first time having IV contrast. The technician seemed fairly relieved knowing I’d had it before and wasn’t allergic. The side effects were the same – I felt warm and flushed, my mouth tasted like I was licking metal, and then it felt like I was peeing myself. I think I hated the contrast even more this time than last time – probably because I had more energy this time. Back in May I was pretty weak.

The technician took the rest of the scans she needed and then removed the IV. Despite the fact that I told her about my ITP/platelet condition, she removed the IV and applied very little pressure. She took away the gauze to place a bandaid and seemed genuinely shocked that the wound continued to bleed. I tried to warn you, lady!!  This gauze, bandaid dance happened about three more times before she finally applied the necessary pressure to stop the bleed.

I grabbed my stuff off the table, redressed myself, and left. The technician said my GI would be sent a copy of the scans and the radiologist’s report within 24 hours. The iodine gave me a bit of a headache the rest of the evening, but it wasn’t too bad. I had left the apartment around 10:30 yesterday morning and returned at 3:30, so the whole process only took about five hours. Hopefully the results are all negative!

Yesterday’s appointment went well. After a month on 10mg he’s finally tapering me to 5! My hemoglobin was 11.9 and my platelets had risen from 100 to 110.

I spoke to my hematologist about the Protonix. Since it is on a short term basis, he was fine with me increasing to 40mg.

In regards to Tuesday’s fainting spell, the most likely scenario is a simple vasovagal syncope, which is a sudden drop in heart rate and blood pressure leading to fainting, often in reaction to a stressful trigger. The doctor said there is no reason to worry or investigate further unless it happens again. If it recurs, we will need to involve a cardiologist and run a handful of tests, such as a tilt table test.

My next appointment is Monday the 19th. He’s hoping that my numbers hold and he’ll be able to switch me to 5mg every other day at that point, which honestly sounds amazing!

I also called today to schedule my CT Enterography and they want to take me on Monday. CT Enterography is a special type of imaging performed with intravenous contrast material (after the ingestion of liquid) that helps produce high resolution images of the small intestine in addition to the other structures in the abdomen and pelvis.

I didn’t expect my appointment to be so soon but I’d rather get it over with. Luckily, my GI isn’t expecting to find anything. Since my inflammatory markers were high, though, and I’ve been having some troubles, she wants to rule out IBD. Again, very unlikely that I have it. All signs indicate that my symptoms are a result of the prednisone but it’s better to be sure that it’s not something more serious. According to the doctor, the most likely IBD diagnosis for me would be colitis.

Colitis is an inflammation of the large intestine. There are many causes of colitis including infections and poor blood supply, but the most common is an autoimmune reaction. The GI warned me that once you have one autoimmune disease it is easy and common to contract another. I think that is the main reason she wants to be sure it’s not IBD before proceeding forward with treatment suggestions. Fingers crossed that it’s not colitis because my hematologist told me that the most common treatment for that is steroids. Steroids?! REALLY?!? Not an option.

This morning was terrifying. I got out of the shower and felt really overheated so I sat down for a little bit. When I eventually stood up, I got dizzy and lightheaded. The next thing I remember is sitting on the floor with my husband hovering over me asking if I was okay. Apparently I was looking for clothes to get dressed for work and I fainted. I have no memory of the incident. My husband said I flopped onto the bed and then slid off, hitting my leg on a TV table on the way down. I was slumped over on the floor when I regained consciousness. I have never, in my 26 years, fainted before. I was pretty freaked out and so was my husband.

I called the hematologist to get his thoughts and make sure it wasn’t a sign of anything more serious. He called back around lunch time and reassured me that it wasn’t uncommon. He said if it happens again or if I start having any other weird symptoms to go to the ER. Hopefully when I see him on Thursday he can provide some insight. I also need to remember to talk to him about the Protonix. Fingers crossed that it was a one time ordeal.

Six months ago today I woke up in a hospital bed in Upstate New York with jaundice and dangerously low hemoglobin listening to the nurses talk about whether or not to move me to the ICU.  Fast-forward to present day and I’m really thankful to be alive.  I don’t think I realized the true magnitude of how sick I was until recently.  I always assumed people were exaggerating when using the phrase “I almost died”, but in my case, it’s true.

For my own reference, I have been documenting my appointments, medications, and treatments these last six months.  I compiled a fairly comprehensive list of what my illness has entailed thus far.  For those of you who want to stay updated on my progress or are simply curious, but don’t have the time to read the whole blog, below is a cheat sheet.

The tests and procedures:

• EKG
• Chest X-Ray
• CT Scans: chest, abdomen (with contrast), pelvis
• Blood Transfusions
• Platelet Transfusion
• IVIG Infusions
• Echocardiogram
• Bone Marrow Biopsy
• Antidepressant Withdrawal
• Colonoscopy
• Prednisone Taper
• Bacterial Infection in the Small Intestine

The facts and figures:

• 36 Blood Draws
• 3 Different Hospitals/Hospital Visits
• 8 IVs
• 20 Hematology Appointments
• 4.2-13.4 Hemoglobin Range (Normal: 12.0-16.0)
• 13-114 Platelet Range (Normal: 150-450)
• 8,010mg Prednisone (as of this morning)
• 1 Unit of Platelets
• 4 Units of Blood
• 15 Units of IVIG
• 3 GI Bleeds
• 27+ Bloody Noses (I lost count after that)
• 4 Nights in a Hospital Bed

I saw the hematologist on November 17th and, unfortunately, my platelets dropped from 114 to 100 so he decided not to taper the prednisone down to 5mg. He said he would get a manual platelet count and if that was higher he would approve the taper. His office was supposed to call either way, regardless of whether the results were different than the CBC but they never called. I’m assuming that meant the results weren’t significantly different enough to warrant a taper. Luckily, my protein clotting factors all came back normal and I haven’t had a bloody nose since the beginning of the month. My hemoglobin has been a fairly steady 12.0 all month (ever since July, really).

The last few weeks I have been having more GI issues than hematological ones. I finished the two week antibiotic for the infection in my small intestine and, unfortunately, nothing improved. I started having painful stomach aches and abdominal pain that mimicked the feeling of hunger. The pain would temporarily subside as I was eating but would then steadily return. It felt like a painful and achy hollow feeling in the pit of my stomach. This combined with the fact that I had another GI bleed (single incident this time, not a 24 or 36-hour bleed) made me nervous. When I saw my GI on Monday, November 21st she had a few ideas:

1. Up my Protonix to 40mg daily, instead of 20, which is fine on a short term basis. Protonix is meant to be preventative. I think she wishes I had been on a higher Protonix dose when I first began the 100mg of Prednisone. Hopefully the Prednisone hasn’t caused any irreversible damage
2. Test for a wider range of infections and parasites
3. Take a few vials of blood to look at my thyroid levels and celiac levels
4. Send me to NYU Hospital for a CT scan to check for inflammation in my intestines (it would involve fasting for four hours, drinking some gritty liquid, and getting an IV of contrast)

The day before Thanksgiving she called and emailed me to let me know my blood results were back. Two of my nonspecific inflammation markers, ESR (erythrocyte sedimentation rate) and CRP (C-Reactive Protein), were both elevated, meaning there is inflammation somewhere in my body/system. She asked me to please move forward with the CT Enterography. My followup with her is scheduled for Wednesday, December 21st. I’m hoping to have my CT soon so I’ll have results by then.

I haven’t posted an update on here in what feels like forever, but Thanksgiving seemed as good a time as any to relish in what’s going well.

I’m thankful for the never-ending support of my family and friends, for the late-night phone calls, for the FaceTime rants and the visits. I’m thankful for the pep talks and for the endless supply of hugs. It is extremely comforting and humbling knowing how many people in this world I have made an impact on and how many people have reached out to show their love and support.

I’m thankful for my husband who has gone above and beyond any preconceived notion I had of what a husband should be. I know I’ve said it a million times but a million isn’t enough – he is my rock. Without him, I’d be lost. He has been such a trooper these last six months – taking me to and from appointments and procedures, grocery shopping, picking up my prescriptions, cleaning, cooking, and doing laundry.  Beyond all of the errands and chores he still finds time to be there for me emotionally. Any time I start to breakdown or panic, whether it be about my health or my homework, he’s there to listen. I love you!

I’m thankful for my job. I’m thankful that I work for a company that puts my needs first; a company that understands my many doctors appointments and is willing to work my schedule around them; a company that is full of such genuine and hardworking individuals. I thank my lucky stars I ended up where I did.

Finally, as cliche as it may sound, I am thankful to be alive. At this time last year I had no clue what was to come. I’d love to say I’ve battled through the worst of this illness, but there is no way to know. But here is what I do know – my hemoglobin is at 12.0, which is completely normal, and my platelets, though they aren’t quite high enough yet to be considered normal, are well on their way!  I’m thankful that the AIHA is under control and that the ITP is improving. I’m thankful that I found a hematologist who I feel comfortable with, a hematologist who makes me feel safe and cared for. He never stops fighting for my continued improvement and he is extremely attentive and responsive each week when I rattle off new symptoms/side-effects. Also, I’m thankful for the amazing medical team at Saratoga Hospital who worked so diligently to save my life and properly diagnose me back in May!

P.S.- A huge thank you to everyone who reads my blog.  Whether we know each other or not, just knowing someone is out there following along provides me with a great level of comfort and satisfaction.

My October 19th blood counts were essentially the same as they were on the 5th so the hematologist tapered my Prednisone down to 15mg.

I saw him again yesterday, November 3rd, and he tapered me down to 10mg!  I’m now on a TENTH of what I started on!  My platelet count yesterday had shot up from the high 80s to 114!  114?!  How is that possible?!!  He said at this point he expects my platelets to be going up each week despite the taper. I don’t really understand how that makes any logical sense, but I’m inclined to believe him!

Since 114 is the highest my platelets have been in months, you would think I was excited, but I was not. As the title of this post alludes, my reaction to the news was very public and very emotional.  Unfortunately, that emotion was frustration and the method of public display was tears.

Let me explain:

In the two weeks leading up to this appointment I have had half a dozen bloody noses.  One was so bad that my coworkers got nervous and helped me find a way to elevate my feet in hopes of slowing down the bleeding.  That bloody nose ended up lasting 19 minutes – almost an entire episode of The Office, which is what I was watching at the time.  How is it that my platelets skyrocketed but my bloody noses returned?

Well, that is exactly what I asked the doctor. He had the nurse come into the room and take four additional vials of blood. He sent them to the lab to check my protein clotting levels.  Aside from that, he has no other possible explanation for the bloody noses and said that, if they persist, I should see an ENT.

The cause of my tears wasn’t a bloody nose or even the combined six bloody noses – it was realizing that I still have no clue, even after five months, how to identify the symptoms of this disease.  Do you know how infuriating it is to be told what symptoms to look for, look for them, recognize them, and then have them turn out to be nothing?  Bloody noses are generally a sign of low platelets, yet every time I get one, my platelets seem to go up.  It makes zero logical sense and it’s so frustrating.  I can’t even trust my own body to correctly identify symptoms.  Down the line, once I’m completely off the Prednisone, and only seeing the hematologist once every three months or twice a year, how the hell am I going to recognize a relapse?!  What if I don’t recognize it until it’s too late?  Every time I identify a symptom it’s wrong.  I feel like the girl who cried wolf.  I’m not worried about recognizing the AIHA because the anemia symptoms were all very physical and noticeable, but recognizing an ITP relapse??  Impossible.  The disease is invisible and unpredictable and I’m constantly reminded that I have zero control over it. That is what had me in tears.

I met with my GI on Friday, October 14th to obtain my biopsy results. Everything was completely normal!  The procedure was annoying and time-consuming, but at least I can sleep peacefully knowing certain illnesses/problems have been ruled out. Luckily, the bleeding hasn’t happened since early September so the GI said, unless it happens again, not to worry about it.

While in her office, I explained some other stomach issues I had been having and she said it could be one of two things: a problem with my pancreas or a bacterial infection in my small intestine. She ran some tests and discovered that my pancreatic enzyme levels were completely normal – thank goodness!  Today she started me on a two-week, three-times-a-day antibiotic to clear up the infection. Hopefully the antibiotic does the trick!