Hematology

The Post-Treatment Blood Draw

Hematology, Remission
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My IVIG treatments finished on Monday, June 27th and my one-week blood draw was this past Tuesday, July 5th. I called my hematologist’s office yesterday morning and they had the results of the CBC from LabCorp already. To my surprise, my hemoglobin went up to 11.6! Even though my Prednisone was decreased to 75mg, my hemoglobin went up…? Can that really be true?! Ecstatic doesn’t even begin to cover it. The hemolytic anemia was, originally, the worse of the two problems. It was the AIHA that caused my jaundice and elevated bilirubin and landed me in the hospital in May. I am VERY excited that the AIHA is essentially in remission at this point. It will still need to be monitored as I continue to taper off the steroids, but I am no longer worried about it.

My platelets, on the other hand, plummeted again. My last platelet count was 159, which was great considering 150-450 is considered the normal range. Fast forward to this week and my platelet count was 62. In case you don’t feel like doing the math, my platelets dropped 97,000 in eight days. That’s not ideal. I had read that the problem with IVIG is that it is often a quick fix, but a lot of times doesn’t work long term. The infusions are meant to give you a large boost in platelet count, but then it is up to your body to continue producing platelets and to know not to kill off the good ones. I think if there was an underlying cause to my low platelets, such as alcohol consumption, drugs, etc., IVIG and abstaining from the problem substance would have been enough to fix it. Take away the problem – take away the destruction. Then it simply would have been a matter of infusing the platelets and PRESTO! Since my problem is ITP, which, by definition, is an autoimmune disease focused on platelet destruction with no underlying cause, my treatment options are more trial and error. The infusions worked to boost my platelets, but my antibodies are still latching on to these platelets and marking them for destruction. Until/unless my immune system can begin to recognize its own healthy platelets again, I’m not super confident my numbers will ever be under control. It seems ITP is going to require constant maintenance.

The thing that I find really frustrating is that, of the two autoimmune diseases that comprise Evan’s Syndrome, ITP is the one that is harder to recognize or diagnose. With AIHA, I felt sick and miserable and tired and weak. With ITP, I just bruise easily. I don’t feel sick, I don’t feel broken or weak, and yet, I’m undergoing long treatments and being kept home from work. I know I’ve said it before, but it is so hard to grasp the concept that I’m sick but don’t feel sick. The idea that my body is destroying itself without any indication is frightening. How am I ever going to know if my platelets are low without a blood draw? I won’t. At least with AIHA, there is a chance I will be able to notice when something is wrong (to some extent). I’m afraid with ITP that I’ll never know there’s a problem until it’s too late.

When I see the doctor Monday I find out what comes next. He’s probably going to recommend a bone marrow biopsy (no, thank you) or another round of IVIG infusions (not loving that idea either). Hopefully he doesn’t immediately jump to Rituxan (the chemo-like treatment). If I had to guess, I’d say it’s likely that there is more IVIG in my near future, but maybe he’ll try a different route considering the reaction/side effects I had by the final treatment. Maybe he’ll say 62 is a safe enough number and he will hold off on any additional treatments and let me wait it out to see if the number holds!  Either way, at least half of the ES is under control and responding to treatment the way it should be. One down, one to go!

The Paranoid vs The Cautious

Hematology, Side Effects
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This morning my husband and I had to drive into Saratoga so that I could have a blood draw. We had to drive 50 minutes there and 50 minutes back all for a three minute blood draw, but otherwise it went well. I’m not sure how long it will take to get the results. I am much more likely to hear my numbers from the doctor than from the lab. LabCorp said they are going to mail me a copy of the results, but it could take 7-10 business days to receive. I’ll already have my next blood draw (and results) by then, rendering today’s results useless. I’m hoping my hematology center gets the results by Thursday and I can call them and ask for my hemoglobin and platelets. I’m not worried about the platelets, but I’m a little nervous about my hemoglobin. Since the RBCs were responding to the steroids, I’m afraid the taper will have negatively impacted them. I would love to at least be able to maintain a double digit hemoglobin number and triple digit platelets.

I had a lot of trouble with the hot flashes today. It was 80 outside and humid. Being indoors wasn’t enough to beat the heat. I had the fan directly in front of my face and was still dripping sweat. I had to go into the lake to cool down, which did work, but then when I got back up to the cottage my oxygen saturation was at 93 and my heart rate was at 164.

In addition to the heart fluttering and profuse sweating and shortness of breath (only when my heart is racing) I’ve been feeling lately, my stomach hurt earlier. This is the part I hate. The first time my hemoglobin was low I didn’t recognize any of the symptoms as a cause for concern. At the hospital, the nurses and doctors kept saying “at least next time you’ll recognize the symptoms”, but that’s not necessarily true. The reason the symptoms didn’t concern me the first time isn’t because I didn’t notice them happening – it’s because they are such common symptoms. They can be caused by anything. My stomach ache could be because I ate too much or too fast. Back pain could be related to an injury or stressor. These aren’t things that are going to set off any bells in my head. Right now it has the opposite effect though and ALL of these things are setting off bells. My brain keeps thinking any one of these common symptoms could be the sign I’m supposed to recognize or be looking for in terms of a relapse or drop in my numbers.  Am I paranoid or simply being cautious?

Also, the fact that exertion of any kind, no matter how small, completely knocks me on my ass isn’t going to be good. Walking up about 20 stairs from the dock to the cottage caused my heart to beat like crazy. Imagine how my commute to/from work is going to be everyday. That is 52 stairs in the morning and a fairly lengthy walk uphill in the evening. It wasn’t easy or pleasant before and now it’s going to be even worse. Essentially, any time I have an “episode” where my heart starts racing, I have to sit down, relax, drink some water, sit in front of a fan or apply ice packs to my face and neck, and take deep breaths until my heart rate returns to a safe level. That’s going to get old FAST in the mornings. But I’ve already been out of work for nearly six weeks. I’ve been working from home as much as possible, but the last couple of weeks were useless between treatment and the nasty side effects of treatment. I feel guilty because my hematologist keeps pushing back the date in which I will be able to return to work.  At the same time, though, I trust his professional opinion.  The earliest I will be back in the office is Tuesday, July 12th, pending the results of my July 11th appointment and blood work.

I’m not even sure what the game plan for Monday’s appointment is. I’m assuming the discussion will be largely based on my blood counts. I figure if my counts are good, he will taper the Prednisone again and set up an appointment for the following week to check my progress. If my counts dropped, I’m not sure what happens next. I doubt they will have dropped low enough to warrant any kind of immediate action, but he may bump the steroids back up to 100 mg. I highly doubt he will increase the dose because he wants me off the Prednisone as much as I want to be off of it, but there’s always a chance he will choose that option. Regardless of my counts, I’m sure I’ll have weekly blood draws and appointments until I am off of the steroids completely.

Once I’m off the Prednisone, the doctor and I will be able to focus on what caused the sudden AIHA & ITP (ES) and how we are going to treat it long term. In the meantime, things are all still up in the air:

How did this first 25 mg taper affect my numbers? Is it going to affect my platelets too or just my hemoglobin? If my numbers didn’t drop does that mean my immune system fixed itself? Is it possible that this has gone away and will never be a problem again? Will the next taper be more drastic or would we expect to see the same type of results? At what point during the tapering process is relapse most common?

There are so many things I wish I could know before it’s too late. I don’t want to find things out the hard way this time.

The Crazy Lab Charge

Hematology
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My insurance company mails me a paper copy of each claim or service rendered once a decision has been made. It always shows the amount/breakdown of what the provider charged, how much of it insurance paid for, and how much I owe. Usually these show up in the mail and I can throw them away because I have already paid the copay in-office and/or I don’t owe anything. I happened to open yesterday’s and it was for the lab work I had done at the original hematologist’s office – the lab work I never even saw, the lab work that was taken by the lady who didn’t wear gloves. Despite the fact that I made it abundantly clear to the hematologist that my vials needed to be sent out to either Quest or LabCorp, she sent them for testing at some random, local lab that isn’t covered by insurance. As a result, the paperwork I got from the insurance company shows they covered none of the cost and I owe almost $4,500!  For lab work?!  She only took five vials of blood!  What in the hell costs $4,500 to test?!  Did she combine my blood with liquid gold?  I don’t understand.

The insurance paperwork says on it “this is not a bill”, but I know that means the bill from the lab is on its way. This could get interesting because there is no way in hell I’m paying a cent of it. I told the hematologist flat out that the blood needed to be sent to Quest or LabCorp because those are the only two labs my insurance covers AND they cover them in full – I shouldn’t even owe a copay for lab work. Somehow, this crazy lady took it upon herself to completely ignore my instructions and send the vials wherever she damn well pleased. I’m not paying $4,500 for lab results I didn’t even receive just because she was too lazy to follow directions. Quest & LabCorp are probably the two largest diagnostic lab chains in the nation – it should have been a very simple request. I’m not sure what happens when I get the bill – do I fight it out with the old hematologist, the laboratory, or insurance?  Do I get my company’s HR Director involved?  I’m already getting anxiety and the bill hasn’t even come yet. I don’t need this added stress right now. UGH.

The Haunting of the Platelets

Hematology
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My low platelet count is starting to haunt me.  It is affecting more and more things in my daily life.  First, the problem was that I couldn’t commute into the office anymore and had to work from home.  Then, I had to start using a soft toothbrush and electric razor.  This past week I found out I cannot drink any alcohol until further notice, which is basically all people my age do in social settings.  I’m nervous to ask when the alcohol ban will be lifted.  I know my health is most important and I truly believe that, but I hate being told I can’t do something, especially with July Fourth and summer right around the corner.  Today presented a couple of new challenges.  To celebrate Father’s Day, my in-laws and husband and I went to Stony Creek Brewery in CT for a tour and tasting.  I had to sit back and watch as everyone around me drank.  Luckily, I don’t like beer anyways, otherwise it would have been hard to resist.

When my husband and I got back to NJ tonight I noticed a couple of bruises on my body that weren’t there earlier.  I have a purple bruise on my chest and two brown/yellow bruises on my arm.  It literally feels like they appeared out of nowhere.  I didn’t run into anything or bump myself at all.  I tried researching what could have caused the mystery bruises, but the internet told me what I already knew – my low platelets (ITP) caused the bruising. I’m not used to being considered “fragile”.  This just proves, though, that even if I am extremely careful and I don’t bump into anything, I am not immune to bruising.

The Platelet Check

Hematology
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Today the doctor’s office called a little after noon and asked me to come in for a CBC blood panel to check my platelet count resulting from Tuesday’s transfusion.  Within ten minutes I had grabbed an Uber and was on my way to the office.  They took two vials of blood and then I met with the doctor.  My hemoglobin went up to 10.7 (half a point increase), but my antibodies test came back positive, which means antibodies are still latching on to my healthy RBCs and destroying them.  This was further solidified by the fact that the doctor said I’m still in hemolysis.  I am hoping the IVIG will still be just as effective while in active hemolysis.  I would hate to know what my hemoglobin would be at without the Prednisone.  Somehow, with the Prednisone, it does seem to be going up!

My platelet count from today was up to 31,000, which makes perfect sense.  The doctor predicted with the one unit of platelets that my count would rise from 13 to around 30.

The plan at this point is to stay on the steroids and hope that insurance approves the IVIG treatment late today or early tomorrow.  Not sure when the tapering off will begin so I am trying not to worry about it.  The doctor and his staff keep repeatedly calling my insurance company for approval, which is nice.  It’s nice not having to do that myself.  Assuming it is approved by end of day tomorrow, the office will call me and set up a time for me to come in on Monday for my first dose.  Treatment will likely be Monday-Thursday, 9:00-2:00.  I won’t know until the end of the first treatment if I am going to be able to work from home in the afternoons.  The doctor said that 40-60% of patients, the majority, experience painful headaches following the treatments and spend the afternoon and evening lying in bed on prescription painkillers that he prescribes to help manage the pain.  Here’s to hoping the pain isn’t too bad and that I am able to work for at least a few hours a day. 

Also I asked the doctor a few of my questions:

Can I still fly to Chicago next weekend?
No.  Because of the IVIG and the probable headaches, he doesn’t think it’s a good idea to be too far away or to take a plane.  

If the IVIG doesn’t work, do we need to resort to Rituxan?  If so, how soon will that be?
Since Rituxan can cause reproductive problems, it might not necessarily be the next step.  He said he often tries IVIG a second time first, but that it isn’t worth talking about unless we need to take that step. 

Was the large platelet drop due to my alcohol intake this past weekend?
Unfortunately, the answer to this was yes.  He thinks the drinks I had at the wedding and the night before definitely were the cause of my platelet drop from 44 to 13.  It sucks knowing I did this to myself, but at the same time, I thought maybe there was a small chance the alcohol would react with the Prednisone – I had NO idea that the alcohol would thin my blood and drop my platelets.  I can’t beat myself up over an honest mistake.

The New Hematologist

Hematology, Treatment
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I decided on Thursday evening, after my rude encounter with the staff at the hematology office, that I needed to find a new hematologist.  I know I am going to need to see this specialist for a very long time and I refuse to settle.  I want a doctor I can trust.  Thankfully, I found that today.

I called the old doctor’s office this morning around 10:30 hoping to get my numbers from last week so I could share them with the new doctor. The receptionist said “oh. Nobody called you?!” and then proceeded to tell me the results were finalized yesterday and I needed to come in right away because my platelets weren’t responding to the steroids. At this point I was fed up so I said I’d call back to schedule an appointment. My hemoglobin was up to 10.4 from 8.7, but my platelets had only gone from 41 to 44. These results were a week old at this point and I was just finding out about them. This only served to solidify my decision to switch hematologists. 

I worked from home today because I had an appointment with my new hematologist at 11:30.  The office was easy to find and spacious. I filled out some paperwork and was taken in the back around 11:50 to have my blood drawn and my vitals recorded. The nurse took three vials of blood and immediately ran one through a machine that spit out a reading in less than five minutes!  Do you know how amazing it was after the fiasco with my original doctor to know my numbers before leaving the office?    

By the time the doctor met with me, he already had my counts.  My hemoglobin dropped ever so slightly to 10.2. This drop wasn’t that worrisome or significant, but the steroids should have at least kept my numbers stable. He then explained my condition to me and discussed that yes, figuring out a treatment plan is important, but so is taking ten steps back to figure out why this condition started in the first place. Until we know what caused it, it’s very hard to stop it. He then got very serious and said “you might want to conference in your husband for this part”. He proceeded to tell me that my platelet count was at 13. 13?!  How did it drop by 31,000 in one week?  Seven days?!  The thing that REALLY concerned him and, in turn, frightened me is that the number was able to drop so much and so low while on high dose steroids that were meant to do the exact opposite. 

Because of my dangerously low count – at 10 and under some people start spontaneously bleeding internally without any cause or underlying injury – he said the first step was to send me to Jersey City Medical Center for an immediate outpatient platelet transfusion. By the time the hospital finished registering me it was past 3:00. The infusion center drew my blood to send to the lab for cross matching. I couldn’t get platelets until I had been matched. Matching takes the lab about an hour and then the transfusion takes about an hour as well. Unfortunately, the infusion center closes at 4:00. The nurses called the doctor to ask if I could do the transfusion tomorrow morning at 8:00 instead and he said that it can’t wait. He told them that if they can’t do it today I would need to be admitted. Getting admitted would suck for two reasons – it would mean staying overnight even though I just needed a quick one hour transfusion & it would mean another $500 admission fee.

Luckily, the lab was able to rush match the blood and had the platelets to the nurses by about 3:45. One of the nurses graciously offered to stay past her shift to administer the transfusion, even though she doesn’t get paid overtime. The platelet bag finished around 4:30 and I was able to head home.

Here is the plan put in place by the new hematologist:

  1. Look at my blood smear under a microscope to see if there were any Giant Platelets the machine weeded out and didn’t count.
  2. The platelet transfusion – Check!
  3. Begin IVIG (pending insurance approval, which takes 24-48 hours). He wants to have me do IVIG four days in a row (excluding weekends). He said it takes about five hours each time and it involves being hooked up to an IV for those five hours. 
  4. See how the IVIG works. If it works, I can begin tapering off the steroids, but he will have to closely monitor my hemoglobin to see if it starts dropping. If the IVIG doesn’t work, he wants to do a bone marrow biopsy to see if my bone marrow has stopped producing platelets for some reason.

He has me out of work until after IVIG is complete. I can work from home, but he doesn’t want me commuting into the city on the train. All I would need is for one person to accidentally elbow me and I could very likely start bleeding internally. Unfortunately, there aren’t usually any visible signs of internal bleeding until it’s too late.

The Wait for Results

Hematology
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I called the hematologist early this morning because I was anxious for my results. The staff said the blood work was still pending and I was being impatient. They had caller ID and knew it was me before I even said a word. They said not to call again – the doctor would call me that afternoon once she had finalized the results.

The Hematology Consult

Hematology, Treatment
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The meeting with the hematologist did not go well.  Her silent, awkward assistant, who I am not entirely sure spoke any English or understood a word I said, drew three vials of blood from my right arm.  Upon pulling out the needle, she didn’t apply any pressure to the entry point and blood started running down my arm.  She also didn’t have any gloves on, which was unsanitary for both her and me.  In addition, she took a half-assed patient history and had me write down my current prescriptions and medications on what appeared to be a piece of scrap paper.  The whole experience was wildly unprofessional.  

When the doctor met with my husband and I in her private office she rotated between moments of clarity and completely quirky and inappropriate rants and tirades.  Also, my appointment was cut short because the next patient was ready.  The doctor’s assistant knocked on the door during our conversation about treatment options and told her my time was up.  I’ve never seen a doctor that actually sticks to assigned appointment times or schedules because it often means getting less time with the patients who need a little more.    

Here are some things I took away from our brief conversation:

  • After being on the steroids for 2-3 weeks, my numbers should be back to normal.
    • Hemoglobin: 12-16
    • Platelets: 150-450
  • Steroids are an effective treatment method for approximately 90% of patients.
  • Upon tapering off of the steroids, 35% of patients relapse fairly immediately.   Another large percentage of patients relapse 5-10 years down the line.  A small percentage never relapse at all.
  • She would like me to get weekly blood draws at Quest Diagnostics to monitor my RBC & platelet counts both on the steroids and as I taper off of them
  • By next week’s blood draw she should know if the steroids have worked or not
  • Before I left I made it very clear that I wanted to know all of my results. She had the receptionist take down my phone number and she said she would call me or text me the next day with the results.

Here are some useless things I took away from my appointment:  

  • Yoga and proper deep breathing can fix everything
  • Once I learn how to properly breathe and exhale, everything else will fix itself
  • My body is like a tree and all of my blood vessels and capillaries are limbs coming off the heart.  If the trunk of the tree (heart) isn’t receiving proper oxygen it cannot disperse it to the limbs, so they begin dying off.
  • My blood vessels work like broken sprinklers.  They can only spread blood and oxygen to the little area of grass around them and the ends of the vessels never get any of the oxygen.  The sprinkler doesn’t water out that far.
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