Unidentified No More - A New Diagnosis (Post #31)

 

Remember how I bemoaned having 13 vials of blood drawn? Ha! 13 is for beginners! This time they took 18!

Hubby and I had a rather early "date" on Thursday; it was to get my blood drawn. How romantic, right? Well, considering that it was raining proverbial cats and dogs and I was as pleasant as she-bear just out of hibernation...no. It wasn't. 😖 (I'm solar-powered, remember? 😎)

I had an appointment to have my blood drawn at the Edmonton Kay Clinic for several special tests requested by Dr. Sun, my hematologist, as the Edmonton Kaye Clinic Lab is the only lab in the city that runs them. (I was also booked to have blood drawn an hour before my oncology appointment at the Cross on Friday, but I called them and they were kind enough to fax over the requisition so I could have these tests done a day early and only need one poke in 24 hours, not two. As someone who bruises very easily, the fewer the number of pokes, the happier I am!)

I apologize if you're squeamish; I do NOT watch this process. 😊

Thankfully they use something called a "butterfly" and attach the vials to that, 

so you don't get jostled when they switch the vials.

These specific tests are only run every Thursday, with a maximum of 3 patients on that day. (They examine your blood under an electron microscope!) During our phone appointment, Dr. Sun told me that she would arrange to have a couple more tests done, but they "probably wouldn't provide any more information" and I'd remain "unidentified" in terms of my bleeding disorder. Well, well, well, guess who has a diagnosis now? Yup. Me! 😊 I'm no longer a UBD patient. (Unidentified Bleeding Disorder patient.) Now, unfortunately, in the usual Heather style, I have an extremely rare disorder called Platelet Delta Storage Pool Deficiency. It sounds scarier than it is. (Not sure I'll write that only my medi-alert bracelet; I wouldn't want people Googling what it is when they should be saving me! 😄 I couldn't even find the incidence of this disorder in the general population, so yeah, pretty uncommon. Yay me. 😑)

Here is a fantastic description of the specifics from the St.Jude's Childrens Hospital website, and your science lesson for the week!  (https://www.stjude.org/treatment/patient-resources/caregiver-resources/patient-family-education-sheets/hematology/platelet-storage-pool-deficiencies.html)

Storage pool deficiencies are a group of bleeding disorders caused by problems with platelet granules. Granules are little sacs inside the platelet where proteins and other chemicals are stored.

Platelets are used by our bodies to create something like an internal bandage (a temporary patch) to stop bleeding. This is called a platelet plug. During the process of making a platelet plug, the platelets change shape. Chemicals inside the granules are pushed out into the bloodstream. These chemicals signal other platelets to come and help. The chemicals also allow the platelets to stick together and stick to the blood vessel to repair it and hold the platelet plug in place. If this doesn’t happen, a good platelet plug cannot form and the body could bleed too much. The chemicals inside the granules also cause injured blood vessels to constrict (tighten) to help stop bleeding.

There are two types of granules: dense granules and alpha granules. The most common deficiencies are caused when platelets fail to empty the contents of the granules into the bloodstream. But, some storage pool deficiencies are caused by a lack of granules.

Delta storage pool deficiency is caused by a lack of dense granules and the chemicals normally stored inside them. Without these chemicals, platelets are not activated properly and the injured blood vessel does not constrict to help stop bleeding. Most people with storage pool deficiencies only need treatment during surgical procedures (including dental work) and after injury or trauma.

Now you have to understand that I married a very smart man. (I would hope so, he went to school for an extra 11 years!) In the past, when I've asked him questions related to anything medical, he usually immediately had an answer or could provide a thorough explanation after a few minutes in conference with Dr. Google. Well, after 27+ years of marriage, I am happy to report that this time, it took at least 5-10 minutes of Googling! 

So now I have visions of my body having lazy cheerleaders that are supposed to be "mustering up the troops" and are laying on the sofa, eating bonbons instead! Too much Magic School Bus, perhaps? 😁 Also, can you believe how amazing the human body is created?! My mind was officially blown when I began to understand the intricacies of platelet operation. The more I learn about the human body, the more my faith is strengthened.

Dr. Sidderi, my allergist, also ordered some tests best done at the Kaye Clinic which came back as normal...I think 🤔, so we're no further ahead in that area. I'm beginning to suspect that my crumping post-surgery was simply caused by aspiration. And I followed all the rules! Note to self: fast for 12 hours and do not drink for 8 prior to any future surgeries. Also, request general anesthetic, not conscious sedation. 😬

The best news? My test results for Dr. Zhu, the oncologist, came back good enough to continue my chemo with my next infusion which is booked for Monday afternoon. I approach it with mixed emotions, as this week marks the halfway point in this part of my treatment; I've completed three infusions and have three left. However, if you've been reading my blog for a while, you know that the infusion itself isn't that problematic, it's the week to 10 days following that are tough. 

So back to my lovely Thursday morning, after taking 18 vials, yes, you read that right, 18 vials of blood, hubby and I were wracking our brains as to how we could erase the horror. Well, handily enough, the Italian Center is on our way home. So yes, we went to the bakery again. (They didn't give me a cookie at the lab, so I had to buy my own!) You'd think I'd know better by now, but no, I always think that a rolling basket will suffice, only to end up pulling the rolling basket while madly juggling extra items that won't fit. Unfortunately, this outing will be our last until I've completed treatment, as on Friday, Dr. Zhu informed us that the colds and cases of flu (influenza, not gastritis) are exceptionally nasty this year, and contracting any illness could jeopardize my scheduled plan of treatment. (Which would leave me feeling very yucky at Christmas, something I'd really like to avoid!) He went so far as to recommend that my son not attend his Christmas party out of an abundance of caution. Now, I've received my flu shot and Covid boosters, but I'm not about to test their efficacy by roaming through the malls. Am I scared? Is my faith too weak to believe that God could protect me from illness? Nope. He saved my life, remember? I have full trust in the capabilities of my Savior; been there, done that. However, when your WBC count (white blood cells = infection fighters) are half of what they were before starting treatment, (but still in the normal range, hallelujah!) you become very cautious. I don't think He saved my life only to have me risk it with a trip to Winners! 😁

Also...

In a couple of minutes, I'll take my second dose of Decadron (Dexamethasone) and then spend the rest of the day trying to remember that it's a day of rest. Maybe I should just give up and swap these pre-chemo, steroid-driven Sundays for the following Thursday when I can't move even if I want to, let alone work! 😏

Chemo infusion weeks are always met with some trepidation, as no amount of planning can really prepare me for what's to come, but if there's one thing I've learned, it's that God will never let me go. He is there, even when I'm so "chemo-brained" that reading the Bible is not an option, when bowel complaints keep me restricted to a single (small) room in the house, when the pain is too much and I long for sleep, but can't. In these dark hours, He calms my soul with the "peace that passes understanding" and reminds me that this is a season; it didn't come to stay, "it came to pass." (A phrase found 398 times in the Old Testament and 65 times in the New Testament! 😊)

God gifted me this song just in time for the coming week. I hope it blesses you as much as it did me. 

I speak Jesus, by Charity Gayle

I just wanna speak the name of Jesus

Over every heart and every mind

'Cause I know there is peace within Your presence

I speak Jesus

I just wanna speak the name of Jesus

'Til every dark addiction starts to break

Declaring there is hope and there is freedom

I speak Jesus

I just wanna speak the name of Jesus

Over fear and all anxiety

To every soul held captive by depression

I speak Jesus

Shout Jesus from the mountains

Jesus in the streets

Jesus in the darkness over every enemy

Jesus for my family

I speak the holy name

Jesus

'Cause Your name is power

Your name is healing

Your name is life

Break every stronghold

Shine through the shadows

Burn like a fire

I just wanna speak the name of Jesus

Over every heart and every mind

'Cause I know there is peace within Your presence

I speak Jesus