ITP - on miracles and tender mercies

There are so many things that I learned and ways that I was blessed through what I've come to call "my ITP adventure", and while they are still fresh in my mind, and the experience is recent, I want to get some of them written down.



Miracle--that I was in a car accident while I had an abnormally and dangerously low platelet level, and that I emerged from that accident without even a scratch on me.



Miracle--that I spent a day skiing on a mountain, 40 minutes away from a hospital, also with a dangerously low platelet level, without having any kind of serious bleed, internal or otherwise.



Miracle--that while on the mountain, I did fall (I generally don't), and I did sustain a bruise that was serious enough to motivate me to get my blood checked out sooner rather than later.

Miracle--the Sunday afternoon nosebleed: I had been having nosebleeds for awhile, but I had attributed it to the dryness of the winter climate. But on Sunday, I got a nosebleed, and although it wasn't serious in terms of the amount of blood I was losing,  I just couldn't get it to stop. I tried every method I could think of, and then went on-line to try all the methods that were there as well. After 2-3 hours, I called one of my doctor-brothers in Cedar City, and following his advice (to get some Afrin, soak a cotton ball with it, and put that up in the nostril) we finally got it stopped.

Concerned, I asked Eric to call our home teacher, and that night he and Brother Bear anointed my head and gave me a Priesthood Blessing. It was one of the most tepid blessings I've experienced, I was promised that I would rest comfortably that night, and not much else. At the time, I found it not at all comforting, but although it was confusing at the time, in retrospect I'm beyond grateful that I wasn't given a promise that "all would be fine", because if that had been the case, I probably wouldn't have gone into the Instacare the next day, and if I hadn't done that when I did, my story might have had a very different and more difficult ending.

A note Eric wrote to himself to remind him of all the things he needed to bring me at the hospital.

Miracle--that when I arrived at Instacare, the nurse that triaged me was a friendly and familiar face. As the situation unfolded over the days and I found myself getting nervous about all that could go wrong, I would think about how she "just happened" to be the one who called me back to that room, and it would remind me that the Lord obviously knew all that was going on with me, and was directing it from the very beginning. That knowledge gave me courage and hope and so much faith. I later expressed this to her, and she confirmed that she too had felt the Lord's guidance in putting us together in that moment, that she had sensed it as she was triaging me.

Miracle--the parking lot phone call--As I left the Instacare to go to the Emergency Room, I was panicked. I sat in the car in the Instacare parking lot and tearfully called Eric, telling him what had happened, and arranging what he and I would do next. After that phone call, I called Mark (the doctor-brother that had helped me with the nosebleed the night before), and told him of my platelet number and what I was to do now. I could hear grave concern in Mark's voice as he reacted to my news, and I could tell that what was happening now was bad, really really bad. We ended the phone call and I made my way to the hospital, taking deep breaths, and trying not to let my tears overpower my vision and ability to drive.

I had just arrived at the hospital and was pulling into a parking space when my phone rang. It was Mark, telling me that he would be quick because he knew that I needed to get checked in. He said that he wished they had told me at Instacare what my white and red blood cell numbers were, because if they were fine and it was just my platelets that were low, then it probably meant that I had a condition called ITP, which was very treatable and not at all life-threatening if treated. I thanked him for the information, and went into the Emergency Department. They checked me in very quickly, having been warned by the Instacare Doctor that I was coming up. As I was led back to the room I tried (unsuccessfully) to hold back tears as the nurses and aids checked my blood pressure, drew blood for tests, covered me with warm blankets, etc. Eric arrived in the room, and asked how I was feeling. I replied that I was feeling fine, but that I was afraid of what was going on.

Shortly after that, the Emergency Room Doctor entered the room, introduced himself, and sat down at my side. Getting right down to the point, he said, "Your blood looks good. Your platelets are extremely low, but your white blood cells and red blood cells are normal. We think you have a condition called ITP." It was as if he was reading from a script that Mark had written fifteen minutes earlier. Upon hearing those words, my tears stopped, my fears were calmed, and my focus changed from "This is so scary, what is happening, how am I going to carry on?" to "Okay--where do we go from here and what do we do now?" I felt immediate peace, and I haven't been afraid from that moment to this.

I think about that now. In this whole dramatic event, I was only truly inconsolably afraid for the twenty-five minutes between the time I learned about the low platelets and the time I heard the doctor say that I probably had ITP.  Now, those twenty-five minutes were rough, really really rough, don't get me wrong--but they were only twenty-five minutes. I firmly believe that the Lord inspired Mark to call me again, a mere 5-10 minutes after he'd just spoken to me, so that he could give me the experience of complete and total relief that came when the Emergency Doctor told me in the exact same phrasing the words that would mean that everything was going to be okay.



Miracle--the Friday Flowers--As I returned home from the hospital, I told myself that I was going to need to be patient, that my body had been through a lot, and would be continuing to go through a lot as I managed medications and whatnot. I told myself to take it day by day and week by week, and listen to my body while gradually (and that was a key word--gradually) taking on the pre-hospital/pre-steroid responsibilities that I had been shouldering before. By and large I did well with this, and my body recovered a little bit every day, and so every day was, on average, a little bit better than the day before.

I came home on Thursday, February 18. On Friday, February 26, I'd been through a week of semi-regular life, and although it had gone well, for some reason on that particular day, I let the fact that my energy was still low and my abilities weren't yet back to normal really get to me. I was down about it all, and by the time the afternoon hit, I found myself sitting on the couch in discouragement, trying to fend of an attack of gold old fashioned wallowing.

Just as I was about to dive headfirst into tears and sadness, I saw a van pull up to our front door. A man jumped out with a beautiful bouquet of roses and lilies, and rang our doorbell. One of my beloved aunts had taken the time and spent the money to send me a little miracle, and it had arrived at the precise moment when I was most in the need of a miracle. The tears of frustration that were welling up behind my eyes turned to tears of gratitude and joy, and the day was saved.




The miracle that once I had received the initial terrible news that my platelet level was 2, every other piece of news that I encountered was encouraging and hopeful.
-That my body was responding to the steroids
-That all my other organs were normal
-That I was testing negative for Lupus and other auto-immune diseases
-That my body was tolerating the steroids well and that I was not having blood sugar issues
-That I could begin to taper off the steroids and see what happens now


The miracle of the love of our friends and neighbors and family members--As I wrote in one of my update letters, I have been absolutely amazed at the ways that our loved ones galvanized together to support and care for us during this experience. First and foremost, family after family after friend after friend texted, called, e-mailed, and in other ways let me know that they were praying for me and for our family, and I felt those prayers again and again. I'll write more on that separately.

In addition to the prayers though, we received more tangible services and care than I had ever expected.

• Neighbors stepped up to get my little girl to school, from tumbling and other activities, and to care for her during times when it was inconvenient for Eric or I to do so. Other neighbors gave (and still extend) standing invitations for us to call them when we found that we needed more of this, and we have taken them up on their offers to find that they were more than willing to "put their money where their mouth was" so to speak.
• As soon as she heard that I was in the hospital, my mother offered to come up and be with us to help out. We ended up asking her to come when I got out of the hospital, and she dropped everything and made the drive to be with us. During the time that she stayed, she cleaned our home (which was invaluable to me), played never-ending amounts of board games with the little miss, and just generally gave me the kind of peace that you can only get when your momma is around to take care of you. It was just what I needed, and I knowing that she was happy to provide it made it all the more easy to accept and enjoy.
• I was able to access all my medical records and lab reports on the IHC website, and as I would email them daily to my father and two doctor brothers, they would look them over, consult together, and tell me in regular language what was happening with my body, what it all meant, and what to expect next. They did this willingly, cheerfully, and without any ego or competition as to who was getting more calls from me at any given time. Having this blessing was huge. As I would explain the situation to the nurses and others taking charge in my care, time and time I again I was told how unique my situation was, and how fortunate I was to have this kind of access to medical professionals that I knew and trusted. 
• One of my cousins called while I was in the hospital, checking in on me and seeing what I could use. Knowing that she had ties to Arizona, and being in a teasing mood, I told her that what I needed more than anything else was a bag of Arizona grapefruit, delivered to my door. Little did I know, at that precise moment, her parents were visiting Arizona. The grapefruit was delivered to me in person, just over a week later.
• Another cousin who I hadn't seen in quite a while stopped by with her husband while she was in town for other reasons, leaving me with vanilla scented lotion (my favorite) and lots of love.
• While I was in the hospital, I received numerous visits from ward members and friends, and would have received more if I didn't beg off on the day when I hadn't slept well the night before. As I heard some of the sounds from the other patient rooms, I realized that not everyone necessarily receives this blessing, and doing so helped me to recognize just how fortunate I have been to have this kind of support.
• Many relatives and friends who were unable to visit due to distance or other constraints sent flowers, text messages, electronic video well-wishes, and heartfelt cards. By the end of my second day in the hospital, I had quite a pretty collection of plants and flowers crowding out the computer monitor that the nurses would use to track my care. Looking at all of those lightened my heart and gave me peace while I waited for my body to work its way through all that was going on with my blood. The cards and flowers continued into the weeks after I returned home as well, which was a heartwarming and welcome surprise.
• My visiting teacher went to the library and picked up several books, both audio and print, as well as videos with me in mind, then brought them to the hospital so I could choose the ones I wanted to try. During the time that I was going through all of this, she was in the midst of setting up her own health challenges--one week after I came home, she had a successful gallbladder removal surgery. 
• I've been the recipient of bath bombs, muffins (because one mother mentioned that when she feels lousy, getting everyone off for the morning can be the hardest part of the day), a chocolate peanut butter cup shake (my favorite), and a front door filled with construction paper hearts labeled with good wishes and love. A friend arranged for Heather and Eric to have comp tickets to see our community theatre production of Chitty Chitty Bang Bang, which they both enjoyed thoroughly.
•  Finally, and most constantly, we've been fed. From my first day in the hospital, there has been a steady stream of chicken and pork and vegetables and lasagna and salad and beef and rolls and cookies coming through our front door and landing on our kitchen table. Every giver has been gracious and concerned and loving. No one has made me feel "less than" for not trying to take it all on by myself, no one has implied that helping us has been a burden on them, though having been on that side of the coin, I know that it isn't always convenient to come to the rescue like they have done for us. I am grateful.

The miracle of the power of prayer--I remember when my father was treating his cancer diagnosis, reading a letter that my mother had written to our extended family, saying that he could feel the prayers that were being said  on his behalf. Since then, and every time I've head something like that expressed, I've wondered exactly how one can "feel" prayers that are said on their behalf. Now that I've experienced an army of pray-ers focusing at least a portion of their efforts on me, I feel that I know a little more about that now. 

For me, having prayers said on my behalf means that I have peace. It means that things that ordinarily might send me for a tailspin don't really impact me all that much, mentally or emotionally. It means that I can trust my Father in Heaven with ease, knowing that He has all power and all love, and all wisdom, and that I can depend on Him to work his work in my life and in the lives of my family as well. It means that all the other miracles that I've described here came to pass. It means that I know I'm not alone, not today, not ever. Having prayers said on my behalf has lightened my burdens considerably, even to the point that, as it says in the scriptures, "Even [I] could not feel them on [my] back." (Mosiah 24:14). I don't know how long I'll be able to be the recipient of such a wall of faithful prayers, but I hope that I'm learning what I need to learn and growing as I need to grow while I have them, so that when the prayers need to go to others in trouble, that I'll be able to remember these things and use them.

My daughter performs as part of a school assembly that I was able to attend on the day I was released from the hospital.

The miracle of appreciating what I have--Like many of us, I struggle sometimes with focus--in that I focus on what I want, often to the exclusion of focusing in gratitude on what I have. This experience has given me the opportunity to shift that focus, and it has been undeniably sweet to be able to enter back into regular life again. From having the luxury of sleeping in the same home with the two people I love best, to being able to brush my daughter's hair and give Eric a sneaky kiss on the back of the neck, to turning up the peppy tunes and dancing around the kitchen while putting away the dishes from yet another friend-made supper; life at home has felt more enjoyable than I think I ever remember being the case. And if that weren't enough, as I've gone into work for the hours that my energy allows, I've been reminded how much I truly enjoy my job, how fulfilling it is to me to shuffle numbers around, organizing them into areas where they can be used to tell stories, to pay accounts, to gain interest. I've  reveled in listening to music on my pandora stations, feeling the calm of a gentle harp or the excitement of a good beat.

A few weeks ago, when I was reeling from the accident that totaled our Veracruz, I dusted off my old gratitude journal with the resolve to get back into the habit of making a short daily entry there. In the beginning it was a little bit difficult to find areas that merited gratitude, particularly in the evenings, when I was tired and careworn from the day's struggles. Gradually though, it became easier and easier. And then this all happened. Now, time that used to be spent searching for something to write is spent mentally sifting through blessing after blessing, trying to determine which is the most worthy, and thus, which will be written down in the book.

I don't think I'm naive enough to think that life can go on like this forever. Sooner or later, I won't need to be carried on the wings of prayer as I surely am now, and real life will encroach and I'll probably go back to being annoyed by incessant questions from my kid, and first-grade humor, and some of Eric's little habits will cease to be endearing and go back to being more on the frustrating side than otherwise. My job will have stressful days, and the laundry will pile up, and I'll get overwhelmed and worried about finances and safety. But, even when that happens, and it surely will, I think and I hope that I'll take a piece of this experience with me throughout the rest of my life. I think that this has changed me, for the better, and forever. I think I've learned some valuable lessons throughout all of this, and I think I'm a better person for it all. And for that, I'm grateful.

Home from the hospital, having energy, and dancing in the kitchen.

My adventure with Immune Thrombocytopenia (ITP)

So, it's been kind of eventful around here. To sum up, just under two weeks ago, I went into our Instacare Clinic for what I assumed was some kind of anemia or middle-age-related malady, and didn't come home until three days later.

I wrote out much of the story as it was happening, in order to keep my siblings and friends updated. So, I think I'll let those letters tell most of the story now.

Monday, February 15, 2016

So, some of you have heard some of this but not other parts, and some of you have heard all of this, and some of you have heard none of it, but I now I have access to a device so I don't have to type everything out on my phone, so I thought it would be easier to keep track of who knows what if I just wrote out what was happening and sent it to you all.

So--here's the situation:

I'm in the Hospital.

I've been having some issues with bruising lately, and I made an appointment for a physical with my doctor for the end of next month. Then, on Friday I went skiing. I fell once, not a huge fall, but later that night, I noticed that I had a huge goose egg and purple bruise on my hip. That was concerning, and I decided that once the weekend was over, I'd see if I could get into my doctor sooner to see what the deal was with all the bruises.

Sunday I got a nosebleed that took several hours (and two calls to Mark (my brother who happens to be a general practitioner)) to get stopped, so today I called my doctor to see if I could go in. They couldn't see me, and I knew I'd just worry about it until I knew that I didn't have leukemia, so I went into the instacare. 

They took my blood at instacare and found that my platelet level was 2 (150 is normal). They told me to go immediately to the emergency room, and told me that "I might want to have some emotional support" there as well. Naturally, I panicked, picturing everything turning out the worst it possibly could, etc, etc. Eric took our girl to his parents house and met me in the ER.

In the ER they told me that my blood cells were good, that it was just my platelets that were low, which was a really good sign as far as cancer and the scary stuff like that goes. They ran a few more tests, and they diagnosed me with an auto-immune  disease called ITP--its a disease where the immune system attacks the blood and destroys the platelets for some unknown reason. Apparently it's a common, and treatable condition, so that's encouraging. Way better than leukemia.

So, they put me on iv steroids in hopes that that will calm down my immune system. I feel fine, but they can't send me home because my platelets are so low that I'm at a very high risk for an internal bleed. In fact, my doctor told me that someone must be looking out for me because I really should not have gotten off the ski mountain with something as simple as a big ugly bruise. So, I'm feeling very fortunate and blessed.

Game plan for now is for me to stay in the hospital until they get my platelets up, the hospital doctor says probably 2-3 days. If the steroids don't work, they will look at transferring me to another hospital about 90 minutes south of here, where there is a hematologist on staff, but we'll cross that bridge when we come to it.

So, not the best day or best news I've ever had, but I'm really grateful that what I have is most certainly treatable and not terminal. I'm also really glad that I didn't have some kind of awful bleed out in some kind of inconvenient or dangerous place. Of course I will welcome any prayers you might say on my behalf, and I'll keep you posted as news develops.

Love (and thanks) to you all,

Charlotte




Tuesday, February 16, 2016

Met with my hospital doctor, the steroids are apparently working, because my platelets are up to 11 (from 2 yesterday). He's pleased with that level of progress.I had an ultrasound of all my abdominal organs yesterday, and they all look completely normal, so more good news there. I'm getting another dose of steroids as I write this, apparently the plan is for me to get this dose today, another dose tomorrow morning, and if my platelets keep responding as they have, then he'll send me home tomorrow afternoon/evening with oral steroids. I was kind of hoping for an earlier release than that, but there's been no more talk of being transferred to the other hospital or anything like that, which is nice. 

Love to you all,

Charlotte

Wednesday, February 17, 2016

Good morning, all!

Platelets are up again today, this time to 19. For reference, 150 is the low end of the normal range, but apparently as long as the level is 50, you generally don't treat the issue. My doctor is pleased with the improvement in my level, but says I need to stay here another night, do another round of IV steroids this morning, and then start oral steroids tomorrow. If my labs continue to improve, he said that I should be able to leave tomorrow. I'm disappointed that I'm not leaving today, but I kind of had a feeling that this might happen, so I consciously tried yesterday to keep my hopes and expectations on the medium side, rather than on the high side. So, I'm feeling okay about it I guess. Not thrilled, but not crushed either. 

I slept MUCH better last night, only waking when people came in to check my vitals and take my blood. They let me have benadryl before bed, and it worked like a dream. It's always amazing to me just what a difference a good night's sleep can make.

It's probably a good thing that I'm not sleep deprived, because the relief that I don't have Leukemia is starting to recede, and now my thoughts are turning to concerns about what I actually do have, and how it's possible (and even maybe likely) that this is something that I'll need to deal with for the rest of my life. That's kind of dangerous mental territory for me right now, because it will be quite a while before I have a clear picture of what my prognosis is, and so to worry about it today is definitely counter-productive. From what I've researched and gathered from conversations with my team, there are all different kinds of levels of ITP. A small percentage of adults have one episode, and then it goes away and they never deal with it for the rest of their lives. A larger percentage have it more often, sometimes it will go into remission for awhile and then crop back up, some people deal with it for 6 months to a year, some deal with it all their lives, getting periodic blood tests, and treatment as their levels dictate. I don't know which group I'm in, and I won't know for awhile. 

The first-line (i.e. least invasive) treatment that is used is Prednisone, and while taking Prednisone is definitely preferable to walking around being a ticking time bomb of internal bleeding possibilities, it's not exactly a side-effect free medicine. On the inconvenient side, it causes water retention, and weight gain; where I've spent spent the last year diligently losing 35 pounds, I'm not terribly excited about that prospect. On a more serious side, when used long-term, it raises blood sugar levels and and can cause Type 2 Diabetes--something I'd just as soon avoid. And then there's the fatigue and emotional and mental side effects, which don't sound fun either. 

But again, I'm not at that bridge at this point. So, I'm trying to focus on the good in my situation, and have faith that all will work out according to the Lord's plan for me and for our family. 

Having had some time to reflect recently, I can see how the Lord prepared me spiritually for this experience. When we crashed our car (two weeks ago yesterday--it seems like a year ago now), I had quite a bit of anxiety about that, and as can be a problem for me, I started down the mental road of letting the anxiety of that situation spiral into anxiety about a million other situations that I could conceive. That's dangerous territory for me, and I know where that road can take me, and I don't like the destination. So, I made a concerted and conscious effort to turn to faith and hope and gratitude the scriptures and prayer, and in doing that, I received answer after answer and guidance after guidance pointing me to choose faith and trust in the Lord, who is all powerful and all loving and all understanding and a worker of miracles. That's the place where I was when this new and more difficult journey cropped up, and while my first inclination when it all happened was to think, "Really??? This on top of all the rest?? Why??", I can now see how the  previous struggles have been an opportunity to grow spiritual muscles and skills, and the beginnings of what I hope are habits--muscles, skills, and habits that are proving to be invaluable to me today.

On a somewhat related note, it's been really amazing and humbling to me how so many small things have come together to make this whole experience easier for me. Starting from the random selection of my Instacare nurse on that first day--she "happened" to be a member of my stake, and was the Stake Primary Music Specialist when I was primary chorister, so we got to be friendly with one another. Having her there when I got the scary news of a "2" platelet count (I later found it it was the lowest platelet count she'd ever seen in 20 years of nursing) was so comforting, and she came by my room to visit me yesterday, sharing in my relief that my diagnosis wasn't more serious, and laughing (and crying) with me while telling me the story of praying for me in her family prayer that night, and how her kids wanted to know who I was and what was happening, and her not being able to tell them because of HIPPAA, but just telling them to trust her, that I needed their prayers right now. That was just the beginning, of the help I've received--if we took advantage of all the offers of meals we've received, I probably wouldn't have to cook until Easter or later. I've been AMAZED at the sheer force of the goodness of people, how they have rallied around me and our little family through all this. I've always known I had a great circle of support, but truly, I had no idea people were so good.

Speaking of my little family, they are doing well. I think being the mom and the dad and the husband of the invalid has been a bit of an adjustment to Eric--he was remarking yesterday about how he spent pretty much the whole day in the car, attending to my needs and our daughter's needs, but he does it all with his trademark good humor, which is such a blessing to me. One of my co-workers brought dinner to the two of them last night, and he raved and raved about her food, telling me that she made "the best chicken breast he'd ever eaten". I'm trying not to get offended by that, but I know that making moist flavorful chicken breast isn't my forte, so maybe when things settle down a bit I'll see if she can't give me a lesson or two. Now, if she had brought him tamales or another of my "specialties" and he had raved about those, he might have ended up in the doghouse--but for chicken breast, I'm okay. :)

And I think that's enough for this message. I've got a big day planned, and I better get started on it. That Netflix isn't going to watch itself you know!!

I love you all, and am so grateful for your love, your support, and your prayers. Thank you.

Love,

Charlotte

Thursday, February 18, 2016

My platelets are 49 today. Hooray!

The doctor says I can come home. I have to finish my IV steroids, and he has to do all the paperwork and stuff, and then they'll send me on my way.

I'll need to follow up with my Family Physician on Tuesday, take 70 mg of Prednisone orally until my level rises to 100, then taper off and see how things go. 

He's recommending that I do a consult with a hematologist as well, just to make sure that nothing is being missed, but my hospital doctor says that my body responded to the steroids extremely well and extremely quickly, which is awesome. Pathology reports and other reports are coming back encouragingly clean as well. 

So, things are looking good. :)

Love you all,

Charlotte

 

Celebrating being home together again

Tuesday, February 23, 2016

Just got updated labs this morning--my platelets are at 361. Normal levels are 150-400.

YIPPEE!!!

I won't be able to see my physician until tomorrow afternoon, but my "real" doctors (Jacob, Mark and Dad) say that this looks great, that my doctor will probably start easing me off the Prednisone tomorrow. 

In other good news, my blood sugars were normal, which indicates that my body has been tolerating the Prednisone well.

Physically I'm doing pretty well.  I'm still low on energy, taking it easy, spending a lot of time on the couch. Our ward has arranged for meals for us this whole week, and honestly, it's been really nice not to worry about that.  I've been going into work and catching up on some things there, but only pushing it as hard as my energy allows. 

As always, always, always, thank you for the prayers and the help and the love. I've often wondered what people meant when they've said that they can "feel the prayers" said on their behalf. Now I know. For me, it means that I feel calm in the midst of change, confidence instead of fear, and that a burden that could be heavy and really should be heavy is actually quite light. 

It also means miracles--miracles as my body responded to the medicine effectively, miracles as I have encountered only minimal side effects, miracles as I recognize just how perfect and sweet and uniquely ideal my life is, just as it is right now. So, thank you for those prayers.

With love,

Charlotte