One Autoimmune Mom’s ITP Story: Feeling Like a Four Engine Plane Running on One Engine

IMG_0437ITP, have you ever heard of it?  I bet you haven’t.  ITP  stands for Idiopathic or Immune Thrombocytopenia Purpura.

ITP is an autoimmune blood disorder characterized by an abnormal decrease in the number of platelets in the blood.  Platelets are cells in the blood that help stop bleeding.  A decrease in platelets can result in easy bruising, bleeding gums, and internal bleeding.  In my case I have Immune Thrombocytopenia Purpura, so my spleen was destroying my blood platelets.

ITP entered my family’s life in Spring of 2011.  We were living in Colorado.  Loving the mountains & everything about Colorado, going about our daily lives, keeping the kids busy — life was good.  When ITP entered our lives, the vision we had for our family life changed.

In my “pre-ITP” life I was somewhat active.  I enjoyed hiking, walking, swimming and skiing.  Before parenthood, I was a teacher, which required lots of energy to manage 30 kids.  I had a  positive outlook on life, everything was GREAT!  However, as life goes on, life can take unexpected turns for many of us.  These life detours can also hold life lessons to help us evolve into a stronger person.

In Winter 2010-2011, my children were constantly sick: strep, colds, croup etc.  I felt very tired — the way I explain how I felt was like a “four engine airplane running on one engine”.  I often dismissed my tiredness and crankiness on the stress that comes with parenting: the type of stress we all experience, in which tiredness is the norm.

However during that time, I had an internal feeling that something with my health was not right.   I went to several doctors explaining how I felt.  I was prescribed medications; I  felt like a guinea pig, doctor after doctor prescribing different medications to see if they worked.  In the midst of my “medical adventure,” I had unusually heavy periods, which was also not normal for me.  Again I blamed it on peri-menopause.  Finally, I went to my OB/Gyn who treated me through two pregnancies.  She could tell something was not right. She suggested before I tried hormone therapy, I do blood work.

Sure enough… I remember it like it was yesterday; my husband and I were out on a Friday night date.  My Ob/Gyn called my cell.  She was in the process of packing for her family for a spring break trip.  She told me that my blood platelets were low, 19,000 (normal range is 150,000-450,000).  She said I may have something called ITP.  I had never heard of ITP and had no idea how to even spell the medical terminology.  The doctor took the time to text me the exact spelling.  We went to a nearby bookstore, looked up ITP and that is the moment we finally knew what was wrong and life changed.

We had never heard of ITP, nor had my friends and family, it was very hard to explain.  That evening I had to get to an ER for blood work and the next morning I was on prednisone and then into a Cancer Center on Monday morning.  I think about my old OB/Gyn often.  She helped me deliver two healthy children, listened to my health concerns and pretty much saved me.  Had she not called me while she was preparing for her family trip, I am not sure what my platelet count could have dipped to before she returned from her vacation.  I thank her all the time.

In the months following, I went through months of weekly blood work and got very used to needles.  I took rounds of steroids.  My platelets would go up for a while and slowly drift back down.  Finally, after months of ups and downs, my husband and I had to make the decision about trying other types of medication given through infusions or a splenectomy.  I decided to do a splenectomy. Thankfully, my splenectomy worked.  I am now in remission, but NOT cured.  I am very fortunate; I have “ITP friends” whose splenectomies have not worked.  After my recovery, we relocated our family closer to extended family.  I have my energy back, I hike again and I am in a place where I use my ITP experience to spread awareness.

Well, as life takes those unexpected turns… we thought ITP was in our past.  However, last September during ITP awareness month, ITP reared its ugly head again.  This time ITP came back into our lives through my 10-year-old daughter.  I noticed she was tired, had unusual bruises on her shins and her gums were bleeding  longer than normal after losing a tooth.  I insisted on blood work and sure enough her platelets were at 64,000 and dipped to the lowest point of 44,000.  She is fortunate that her platelets were not at a critically low level which needed treatment.

We are once again on the ITP roller coaster of weekly blood tests, ups and downs of emotions and fatigue.  First thing my daughter asked was if she had to have her spleen removed.  Having ITP as an adult is stressful, but now we had to cope with ITP in the role of a parent of a child who has ITP.  My daughter continues on a “Wait and Watch” Program which is common practice for children with her platelet level, and she is in process of elimination blood testing.   Thankfully at her last doctor appointment in December, her platelet count was 211,000.  We let out a huge sigh of relief when we got the news.  My daughter’s ITP case could be acute, but for now we are not 100% positive.

Throughout our ordeal, we have connected with the Platelet Support Disorder Association.  I belong to a local support group.  We meet to talk, share ideas and support each other. I also have started a small project  in development called The Platelet Pal, a site to help patients & parents manage and journal about ITP.  To learn more about ITP, visit PDSA.org.  Our story is just one of thousands autoimmune stories.  I am on a ITP support group Facebook page.  Daily new adults and parents join the group in a panic looking for answers and support.  As life took this unexpected turn for our family, we have made connections with wonderful people and have learned from this new life experience and hope to support others going through the same struggles.

 

About the Author
Beckie Mostello writes about the struggles and triumphs of life as an adult with ITP and as a parent of a child with ITP.

Comments

  1. Hi Becky,
    My son had ITP and they gave him gamma globulin. He was cured. He developed it after the MMR shot. He was 16 months when he got the shot and 6 weeks later developed the disease. His platelet count dropped first to 15,000 and the later to 5000. In four days he was healed and it has never reared its head again. Thank God. I also have a disease called IgA Nephropathy or Berger’s disease which I am researching now. It is in the final stages as I have lost ALL kidney function and am facing dialysis and/or transplant. Still looking for answers with diet, lifestyle, earthing or grounding and energy frequency, (i’m not sure about what its called). Would love to see the body heal itself. would love your comments on your journey with diet, etc.

  2. Hi Sharon,
    I’m sorry for the delayed response. I am relieved to hear that your son’s ITP has healed and I hope that your health is on the mend. ITP in children is usually acute, meaning a one time life event and it will never occur again. There is a very good organization called the Platelet Disorder Support Association (pdsa.org) which has all sorts of information that can help. For my diet I try to eat as many greens as possible, cut out sugar, I walk/exercise daily, I try to keep a positive outlook by reading books & articles which guide me to make healthy, positive choices. Yoga/meditation can also help. I hope that you are ok now. So sorry for the delay.

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