Saturday, February 27, 2016

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


itp photo IMG_0248.jpg

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





 photo IMG_4231.jpg


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

 photo IMG_0287.jpg










No comments:

Related Posts Plugin for WordPress, Blogger...