The ITP Diagnosis.

No, that’s not an episode title for the Big Bang Theory. This was our week.

Oh, where to begin with this one. How about from the beginning? I’ll jump right in. (Buckle in, this will be a long one…)

*NOTE: I am not a medical professional and I might get something wrong. If so, please correct me!

On Monday morning before Ivor left for work, he mentioned that earlier that morning (like, middle of the night early) he had a weird taste in his mouth and some gum bleeding (which is unusual for him because he’s one of those people who flosses regularly lol). Weird, but we kind of brushed that off and went about our day.

Then he got to work and looked down at his arms and hands and noticed a rash. He sent me these pics:

Ok, that’s also weird. We’ve never seen a rash like that before. He then went to get a shower (because had just biked 26 miles into work), and discovered that the rash was all over his body. Cue immediate call to the doctor. We got him an appointment for a few hours later. We had no idea what it could be, but thought maybe it was just a contact reaction to something, nothing serious.

Apparently as soon as the doctor saw the rash, he looked very concerned and ordered blood work for him ASAP. The doc said it looked like it  was a “low platelet issue”  He went downstairs, got to cut the line at the lab and have it done right away. That sense of urgency was a little disconcerting….

Then we waited for the phone call with the results.

The call, of course, came while I was picking up the kids from preschool. Ivor was at home when he got the call, “your platelet count is extremely low, go to the ER now.” So I get the phone call from Ivor in the middle of the kid’s classroom while I’m picking them up, “Meet me at the ER, I’ll be at Good Sam.” (the hospital, Good Samaritan). And that’s all the information I had.

I did my best to keep my crap together in front of the kids, immediately called a friend who lived close by and asked if I could drop my kids off  at her house so I could be with Ivor in the ER. My friend, being the absolute rockstar and saint that she is, said “yes, absolutely” and took in my 3 kids for the night. So I dropped them off, and drove with a purpose (meaning I probably broke the speed limit a few times) to the hospital.

Ivor was already being seen by the time I got there (also disconcerting but good, that he was able to be seen immediately). They wanted to re-take the blood test in-house just to confirm, because they were shocked that his count was so dangerously low but he looked and acted totally fine. He literally had no other symptoms except for the rash and the gum bleeding earlier. Anyway, it wasn’t too long of a wait before we got those results back. It was confirmed. His platelet count was 4,000. To give you an idea of how low that is, normal counts are between 150,000 and 450,000. 

Thankfully, all other aspects of his blood work were normal (red and white blood cell count, etc.). So the ER doctor believed it to be an isolated platelet issue/ITP (Idiopathic thrombocytopenic purpura) from the start. But a hematologist would need to take it from there and run other tests to confirm that by ruling out a bunch of other things.

In the meantime though, because his count was so low, they moved him to the ICU and began a platelet transfusion right away (donor blood, stripped of all the other things except for platelets. It kinda looked like a bag of pee. Platelets are yellow-ish…ya learn something new every day!)

Anyway. It was at this point that I think reality set in for me. The adrenaline/blur of the preceding events wore off,  my emotions caught up with me and I realized where we were. And where we weren’t. We weren’t at home together with our kids having dinner like we should’ve been, dealing with our usual chaos before bedtime. In an “instant” (a quick phone call), regular life stopped. Our kids were whisked off to a friend’s house immediately after school, and there we were in the hospital dealing with the unknown. It happened so fast.

I had googled “low platelet count” earlier in the day and knew all the serious possibilities (you know you’d do it too!) So my mind jumped to the worst case scenario, naturally, and thoughts of losing my husband, and my kids losing their daddy, filled my mind. And I was sick to my stomach. I’d love to say that “I was so strong and held it together like a boss”, but let’s be real………..I threw up in the middle of the ICU. It happened. I apologized to everyone around me, like they had never seen anything like that before (insert eye roll).

Moving on….

He got a room pretty quickly (because of the transfusion situation he definitely had to be admitted) and once he was settled in for the night and a friend brought me some Dramamine, my nausea wore off and I DID get my crap together after that. I ate some hospital jello.

He received 4 bags of platelets (unsure of exact amount) throughout the night. Not sure either one of us slept longer than 20 mins at a time that night…

There were more blood draws over the next few days, re-counting his numbers to check for improvement or any changes. The platelet transfusion helped a little at first, but his count eventually went back down to where it started. All the while other tests were being run to rule other things out. ITP is a “diagnosis of exclusion” which means they rule out all other possible causes (diseases, cancers, disorders, etc. etc.) and settle on ITP if all those tests are negative….it’s essentially a diagnosis that says “we have no idea what caused this.”

After what seemed like way too long, we finally got MOST of the other tests results back, which were negative, and ITP was the official diagnosis they were going to start treating. The first treatment was called Intravenous Immunoglobulin Thereapy (IVIG), which would only be a temporary fix but if it worked, it would support the diagnosis as the correct one. It did, and his platelet count went up significantly. So then they started him on a high-dose, 4-day steroid treatment called Dexamethasone, which should work fairly rapidly in getting his platelet level back to normal.

Since his levels were on the rise after beginning treatment, he was allowed to be discharged (yesterday just before lunchtime, and was back on his bike shortly thereafter 🙂 )

He has a follow-up appointment with the hematologist in a week and they will do another CBC (complete blood count) that day in the office to make sure everything still looks good.

The prognosis for ITP is a good one. It was definitely the best-case scenario in this situation, as opposed to all the other possibilities. It’s just kind of frustrating to be diagnosed with something that begins with “Idiopathic” -of unknown cause. No one likes the unknown. And Ivor lives an extremely healthy/active lifestyle and is only 37 years old. So it sort of threw us for a loop to have any sort of health problem at all.

Thankfully, it doesn’t look like it will change his lifestyle at all. I was so worried he might not be allowed to ride his bike, but he just can’t play contact sports like football. Which he doesn’t do anymore anyway. With the platelet issue he could have a much higher risk of bleeding (because platelets are what causes your blood to clot and stop bleeding). We are so thankful that he didn’t experience any major bleeding at all while his platelet count was so low, which can be a possibility even without injury.

Throughout this whole thing there was no pain or suffering involved (physically anyway). Like I mentioned before, he felt totally fine and normal the whole time, no other symptoms. The last time he was hospitalized (because he apparently likes to make a habit of this:-P ), he had been in an accident and was in a LOT of physical pain and the aftermath of that (the recovery) was very difficult. THAT situation was draining in a whole other way. Thankfully, that is not the case this time.

So …..that was our week, how was yours?? 😀

I want to thank all of our AMAZING friends who stepped in to help us out while he was in the hospital. With childcare, meals, keeping Ivor company while I was with the kids at night, etc. If you’re on facebook, you’ll be tagged 🙂 It is so great to have friends who will drop everything to help you when stuff like this happens, especially when you don’t have family in the area. We love you all!!!

And thank you LORD that this was not more serious and that my husband is now out of that dang hospital! (another story for another time…but let’s just say, there were mistakes made by a nurse that THANKFULLY did not have any negative effect on him, but could have and we worry for her other patients who are not as alert and knowledgeable as my husband). Le sigh.

 

 

 

 

 

 

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