Today is DAY +24… Almost a quarter of the way to the DAY +100 milestone! For updated blood counts, please click…. OH THAT’S RIGHT, we don’t have any updated blood counts because we don’t know them because the BMT Clinic seems to think that Kevin doesn’t need to know them until he sees the doctor a WEEK later. LOL
Yes. I am still not happy about the blood counts. I did send a second email to the BMT Clinic to address a few more reasons why Kevin should know his CBC Blood counts before he leaves his BMT Clinic visit. We did receive a response to the second email. It was a quick, “we will address this with you at Kevin’s next appointment”. I was hoping for the CBC numbers, but that would have taken too much time…. obviously. LOL At least they acknowledged our contact and I didn’t need to contact Patient Advocacy, yet. We will see what they have to say on Tuesday.
Our request is simple and very reasonable as far as I’m concerned. We want Kevin to get his blood drawn an hour or so before his appointment so his CBC blood lab results are available during the BMT Clinic visit. Then, if there is any intervention that needs to be done, such as a transfusion, we do it all before we leave. This is how it was done in Kingston, since Kevin’s CML diagnosis, and it is also how it was done when Kevin was a BMT Outpatient. Basically, we would like it to continue to be done this way for these three MAIN reasons:
1. As Kevin puts it, blood cancer and a bone marrow transplant are “numbers games”. In a bone marrow transplant, the numbers show how well the engraftment is coming along, how strong his immunity is and how many red cells (hemoglobin) and platelets (blood clotting factor) are forming. Just knowing what these numbers are is a huge deal for a patient. Even if the numbers aren’t great, knowing is better than not knowing. Kevin is already has a high heart rate, high blood pressure (both caused by the BMT) and struggles with terrible anxiety that he takes medication for. Do you think he needs ONE MORE thing to worry about? No. Absolutely not. These lab tests are ordered STAT because there is always a possibility that the patients may need intervention. Therefore, they should be available and relayed to the patient on the same day, during the same hospital visit, if possible. It should not be an inconvenience whatsoever. We would totally understand if there were extenuating circumstances that prevented that from happening, such as a shortage of staff.
2. IF there is an issue with the blood counts and the patient must return to the hospital for a transfusion or any other reason, then that means that they must pay for parking at the hospital TWICE in the same day. Many BMT patients, especially out-of-town patients are already dealing with financial hardship.
3. IF there is an issue with the blood counts and the patient is from out-of-town, like we are, are we expected to wait around Ottawa for an entire day just in case we get a phone call? How does this make any sense? It doesn’t and basically, that is what they expect us to do.
So hopefully we can come to a resolution about all of this *excuse my language* bullshit. Because we really should not have to even deal with this. I really don’t get how it’s even okay for them to run their BMT program this way. It doesn’t seem right. I will stop whining about that for now.
Not too much has changed with Kevin. His home care nurse visited today. His vitals are pretty good, but his heart rate is still fast. He does have some new heartburn, which we are assuming is mild Graft Versus Host Disease (GVHD) since he has never had heartburn before this. His energy level is still extremely low, but he’s still doing as much as he can. Other than that, everything is going pretty well. So that is great. He just really wishes that he knew his numbers.
In other news, Kevin’s father had a back surgery that he has been waiting for months and it was a success. We are so happy that it’s finally done because the poor guy was in so much pain! He should be walking better than ever and back to doing way more than he should in no time!
On the same day as Kevin’s father’s surgery, my son and daughter-in-love had their gender revealing ultrasound! IT’S A BOY!!! We cannot wait to meet our precious little grandson in August!!
In the meantime, we are hanging in there and doing the best we can to stay positive! I will update again soon! Thanks so much for stopping by! This week inspired this quote… an important message: