Posts Tagged with hematologist

The Two-Week Platelet Check

Treatment
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This morning I had a 10AM appointment with the hematologist. As per usual, the nurse began by drawing blood – two vials – and putting me in an exam room to wait for my turn with the doctor. The doctor started by saying that he intends to disregard the LabCorp results from last week. He said blood should be tested as quickly as possible otherwise it has time to pool and clot, which depletes the platelet count. Since the LabCorp in Saratoga had to send the vial to NJ for testing, the sample was likely compromised.

Today’s hemoglobin held steady at 11.5 and the hematologist said he considers my RBC problem resolved and in remission! Obviously the number will still be monitored as I taper off the steroids but he seems very confident that it will stay at 11.0 or higher and that will be my version of “normal”. The hematologist said that, unfortunately, until I’m off the Prednisone, he won’t know what my “normal” platelet count will be. My guess is somewhere between 60 & 80, but I honestly have no idea. People with ITP are known to have a lower platelet count than the average human, but where exactly that count falls is different in each individual. Some people hover around 20 as their version of normal, but I’m hoping my normal will be a higher, safer number. Time will tell!

Today’s count was 96, so if we ignore last week’s skewed results and look at the bigger picture, my count Monday the 27th after 3 days of IVIG was 159 and my count two weeks later on the 11th was 96. My count only dropped 63,000 over two weeks – I don’t think that’s too bad! Going forward, as long as it drops at a slower rate or stabilizes completely, I should be fine! I have a good feeling about this! Maybe I’ll be completely off the Prednisone by the end of the summer and I won’t require any further treatment! That would be ideal!

The doctor’s plan is to taper the Prednisone about 20% at a time. That means the taper that starts tomorrow should technically be 60 mg but they don’t make pills in that dosage so he’s tapering me to 50 mg. Here’s to hoping for little to no side effects.  Since the first taper and the IVIG occured simultaneously, it was hard to tell which side effects were due to the treatment and which were due to the lower dose of steroids.

When I was asking the doctor my questions today I happened to mention my frequent heart palpitations, shortness of breath, and inability to exert myself (walk up the stairs, shower, put on pants, etc.). Originally, a few weeks back, when I expressed this same concern, he said it was due to the Prednisone, which can make patients feel anxious and jittery. When he found out today that my frequency of episodes had increased to daily or twice a day, despite the decreased dose of steroids, he became a little concerned. He said that shouldn’t be happening – the episodes shouldn’t be that frequent and they should have decreased when the dose did. As a precaution, he is sending me for an echocardiogram (an ultrasound of my heart). I know it’s just to double check that everything is okay with my heart, but I’m still a little nervous – not for the procedure, but for the results.

The only thing that has been keeping me sane these last six weeks is knowing that my condition had nothing to do with my weight. It’s unrelated to my bad eating habits, my lack of exercise, or the extra pounds I’m carrying around. Knowing that Evan’s Syndrome has literally nothing to do with outside forces and is completely random and unable to be prevented would probably worry and terrify most people. But me? It makes me feel relieved – relieved knowing that I couldn’t have done anything to stop this from happening. I couldn’t have prevented Evan’s Syndrome by eating more vegetables or running or weight lifting. I would much rather “fate” be to blame. That gives me peace of mind in a twisted way.

That is also why this ultrasound is so terrifying. It reopens the possibility that I am the enemy. I am petrified they will find something wrong – a murmur, heart disease, heart failure, etc. – and will determine the cause to be weight-related. I was fine with these episodes happening when I could chalk it up to the Prednisone, but if suddenly I have to face the reality that my habits and way of life caused these symptoms, I might lose my mind.

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 Game Plan

Treatment
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I spoke too soon… treatment will begin tomorrow (Wednesday) at 10:00 AM.  I will be at the hematology center for 5-6 hours a day Wednesday, Thursday, Friday, & Monday.  On Friday the doctor will check my platelet count to make sure the treatment is working.  From what I understand, the IVIG is meant to give a quick boost to my platelets and my numbers should skyrocket.

When I called the hematology office this morning to see if I would be starting treatment today, I was sure to describe my spontaneous bruising.  The doctor had his staff call  me around 1:00 to come in for blood work.  My hemoglobin was up to 11.1!  The steroids definitely seem to be working for the RBCs!  My platelets, however, were down to 22,000.  They dropped 9,000 in five days.  Once I noticed the spontaneous bruising, I had a feeling they had dropped, so I’m not all that surprised. The doctor said that since I’m starting IVIG in less than 24 hours he’s not concerned about the drop, but that if any of the following occur I should go straight to the ER:

  • A large unexplained bruise
  • Bleeding from the gums
  • Nose bleed

After IVIG ends on Monday, the doctor is likely to schedule an appointment with me for Tuesday or Wednesday to check my counts and start tapering me off the steroids.  I am a little nervous about my numbers dropping once I start tapering off the Prednisone, but the side effects are becoming a nuisance and I can’t stay on the medication long-term. The best case scenario here would be a very successful IVIG treatment, 2-3 weeks of tapering off the steroids and getting regular blood draws, and then remission!  If my numbers hold steady as I taper off, I should definitely be set for a while!   Maybe then blood draws will only be once a week or once a month!  Say a prayer that this course of treatment is going to do the trick!

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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