Monday, January 04, 2010

Health Update

I saw the hematologist again on Thursday, the 31st.  I left even more confused than the previous week.  

To start the appointment, I went to the lab at the beginning.  Last week I went to the lab after the appointment, then never heard what those results were.  So that was frustrating.  At least this week I went to the lab first, so would hear the results right away.  

Ok, remember last week before Christmas when he said, "Since you're feeling fine..." and I thought I misunderstood him?  Well, this time he walked in the door and literally said without stopping, "Hello Stephanie, how are you today?  Your numbers are a little better, so I'm sure you're fine, especially since you were feeling fine last week."  I was shocked, stunned, taken aback.  I said, "Actually I'm exhausted.  I can't DO anything."  What I should have said was how WEAK I feel.  Maybe exhaustion is not a medical condition.  

Also last week as I went over my family history of spherocytosis, he downplayed everything.  For example, my grandmother had her spleen removed because they could not cure her anemia.  But MY anemia is "fine" because I bounce back just fine (that was when he was looking at all the times I was anemic when I went into the hospital to deliver babies).  My uncle had his spleen removed because it was the size of a football, but he countered MY spleen is "fine" because it's not really all that large.  10-13 cm is on the "large side of normal".  Mine is 13 cm.  Oh, and I lost 3.4 lbs.  It's not the diet program I recommend, but my larger than normal spleen pushes on my stomach and makes me feel full (satiated) I stop eating sooner, and also snack less.

This week my hemoglobin had improved a whopping 2 tenths of a point.  From 8.4 up to 8.6.  It should be 12.  My white blood cell count is also improved, but is still low.  My platelets have improved and are now in a normal range.  My iron stores are good (so my anemia is not caused by iron deficiency).  He didn't tell me other numbers from the lab results (like reticulocyte counts that my Mom is dying to know...I forgot to ask).

So then he abruptly turns to me and says, "You're anemic.  It's time to take your spleen out."  I was just stunned.  He said, "You need to pick a good if there is a good have the surgery.  Do you know any surgeons you would prefer to have?"  I had a difficult time shifting my brain from his laid-back wait-and-see approach from the week before to now let's just rip that organ out of your body.  Last week my anemia was normal and not all that bad, and this week it needs to be dealt with???  I named two surgeons that I know through church, but apparently that was a faux he referred me to a group where neither of those guys are.  Hmph.  Then he said that normally the surgery is laparoscopic, but since my spleen is so large (???) he is not sure if they'll be able to do it that way.  It will be up to the surgeon. 

Now, I agree with the decision to do a splenectomy.  In fact, that was what I was prepared for from the beginning.  But he just seems to contradict himself so much.  I feel like he gave me no explanation for WHY he think it is now time.  I get very intimidated around doctors and have a hard time standing up for myself, asking questions, etc.  What I want to do next is call and ask for my labs and records.  I need to know exactly what he wrote in my reports (as in, did he document that I'm feeling "fine"?).  I also want to give my regular doctor a call.  I would hate for her to have no say in this and I would love to know her opinion.  But sometimes just navigating all of that is difficult and intimidating for me.  Yes, even phone calls.  :)  Those are my goals for today.  I meet with the surgeon on Wednesday and I hope to have a list of questions for him (written down so I don't forget).  The surgeon has a great name...Dr. Mitchell.   

Also the hematologist keeps calling this virus that started it all parvovirus.  That is fifth disease and if ya'll will remember I tested immune for that last year in February.  Now, Kristin pointed out that I could have caught it a second time, but here's the deal--I don't have any symptoms that are the same as that, and you would also think some of the daycare babies or children who were not exposed at that time would certainly have it now.  I think my doctor was more on when she said it is a virus that acts like mono.  On the virus grounds, I think it is moving on.  I'm not having the fevers now, thankfully.  It went on for two straight weeks!  I'm also not as achy.  So that's a relief.  Now I'm just weak/tired.  That may improve now, or it may not improve until my spleen is out.  But that's where I'm at!


  1. Oh how frusterating. Where did he get the "fine" from... when he greeted you when he came in the door??!! I know I've had GI doctors that are that way. You get to see them once a year and then they "behave" like that.

    I'm glad your getting your regular doctor to review it. I really like my primary doctor because I can TALK to her and not feel intimidated. Some people have said some doctors are "better" than her, but I think she is just fine - besides being able to be unintimidated and having a patient doctor with good bedside manner more than makes up for it. (I know she is considering what I have to say before making her diagnosis!)

    I will do my best keep you and your family in my prayers in the days to come

  2. That's so frustrating! Is it possible to go for a second opinion somewhere? I agree that seeing your records might help to clear some things up, but YIKES! That Doc sounds more than a little confusing :(

  3. You just need to take me with you next time. I think I still owe you one from my visit to the hospital when I was pg with Jericho. ")

    Glad the fevers are gone and you truly are starting to feel a little better.


  4. Katie Phifer1/04/2010 10:12 AM

    What a mess! I definitely agree that you need a second opinion! Maybe ask your reg. doctor to refer you to a different hematologist? I know it is very, very hard to be assertive, but now is as good of a time as any to put yourself out there. Just think, if it were one of your kids you would make sure you understood everything before putting them through deserve no less! I'll be praying for you! I also will reiterate my offer, that if you ever get to the point of wanting more alternative options, let me know, I have some good resources.

  5. Thanks Ladies, I don't really need a second opinion...a splenectomy is really the right thing to do, and I should have talked about that. My bone marrow makes these spherocytes, which are red blood cells that are missing an important protein in the cell wall. It is a genetic defect and no way to stop it from happening. As the cells pass through my spleen, they cannot survive and are destroyed prematurely. This creates an anemia. The cure is to remove my spleen, which at this point in life is not doing anything to help me anyways. Once my spleen is removed, the spherocytes will have a normal life span and the anemia will be cured. It's really not all that that's why I am in favor of doing the surgery. I just wish the guy wasn't such a dork!

  6. You continue to be in my P&PT.

  7. ktorborg@hotmail.com1/29/2010 2:32 PM

    I'm 30 years old had my spleen taken out when I was 5 and my brother had his out when he was 3 and we are both healthy and living life with no troubles. I play sports have fun and I don't get sicker then anyone else around me, acutally I'm more healthy then most of my friends...

    My family has had this HS for 3 generations and everyone is doing werid how some doctors make it into such a big deal.