It’s DAY +28 of Kevin’s bone marrow transplant. We are now over the 1/4 mark to the DAY +100 milestone!! For semi-updated blood counts, please CLICK HERE.
Tuesday, March 24th was Kevin’s last appointment at the BMT Clinic. The day before the appointment I received an email reply regarding our request for Kevin to have his blood drawn before his clinic appointments from the doctor himself! The gist of his email was…sorry, but you are going to have to get used to your husband’s labs getting done the way that we do them because we don’t have time to call every patient to tell them that there is nothing for us to do… The rest of his email pretty much implied that I was being the big bad caregiver who was insisting on getting these blood counts, not Kevin. I guess he thought I had a hidden agenda or something. lol
I showed the email to Kevin and he was really discouraged. He was ready to give up the fight.
At first I thought to myself….
Then I thought to myself… “Nope… Not today doctor. Not today!”
Then I grew a set of balls and sent him the following reply:
“Thank you for your response. However, you are mistaken because this is not about me at all. Not once in my emails did I say I wanted anything from you. It’s about your patient, my husband, Kevin. He is the person who is upset about not being informed. I am his caregiver and advocate and fully agree with him about the fact that keeping a patient informed about the good as well as the bad should be part of the BMT programme at a hospital that prides itself in “providing each patient with the world-class care, exceptional service and compassion we would want for our own loved ones”, not an inconvenience. I will say that while Kevin was an out/in-patient, he received this care without question. In fact, the care he received from the 5th floor staff was outstanding. Now that he is back in BMT Clinic, he feels as if he is not entitled to know exactly how he is progressing and that’s not fair.
We don’t understand why Kevin cannot choose to have his blood drawn an hour or so prior to his appointment so he can be informed of his numbers during the Clinic appointment and any intervention can be taken care of, if required. This is how it was done for all of his clinic visits in Kingston since his CML diagnosis. Doing this avoids additional parking fees, us having to stick around Ottawa waiting to see IF we get a phone call and most important, it avoids extra stress and anxiety for Kevin. I’m sure you agree that knowing is better than not knowing, especially when it concerns your health.
We are members of BMT support groups that consist of patients from the USA and Canada. So far, Ottawa is the only BMT programme that does not provide CBC numbers to the patient when they are available, on the same day. Perhaps there is a way for us to get things transitioned to Kingston sooner than later, since Kevin seems to be doing so well and only needs to be seen in clinic once a week, so he can be better informed. Kevin can discuss this further with you during his clinic appointment.”
About 30 minutes after I sent that email, a very nice person from the Ottawa Hospital Patient Advocacy called us. I explained our situation, told her that we were totally willing to make sure his blood was drawn at least 1 hour before his appointments to accommodate our request and she completely agreed that there should not be a problem with that.
Sooooo you can imagine how we felt walking into THAT appointment on Tuesday! It started off pretty hostile and feisty! The nurse was not pleasant, to the point that when Kevin asked her a question about why the lab couldn’t use his Hickman line to draw blood, she pretty much shoved the thermometer in his mouth and said “hospital policy”. It took everything in me not to lose my ever-loving mind right then and there.
Then the doctor walked in and didn’t even look at me. OH GREAT, I thought to myself. He immediately asked Kevin why he is “so anxious” about this numbers and then basically told him that doing the labs before the appointment is not an option. So I asked the doctor, “What are we supposed to do when we are okay to go back to Kingston? Do you expect us to stick around Ottawa just in case we DON’T get a phone call? How does that make sense?” And he looked at me and said, “I think you are just trying to be difficult.” So then I kinda laughed like an insane person and asked him how he thought I was being difficult and I RE-explained all of the reasons Kevin should be informed about HIS CBC numbers. My blood pressure exploded and when it does that, my chest and neck get extremely blotchy. lol Then the doctor stopped arguing and said he would write standing orders so Kevin could have his blood drawn before his appointments. He left the room to get some forms and then he came back in and apologized for being “a bastard”. You bet my eyebrow raised! But I wasn’t questioning a thing! I was just thankful the fight was over.
So Kevin is still doing well. We are hoping to move back to Kingston as early as next week and commute to Ottawa weekly for his appointments. We have agreed to do the same if he develops symptoms that require medical attention. If he is re-admitted into OUT-patient, we will just stay in the Rotel. If he is re-admitted to IN-patient, I should be okay to stay in his hospital room. If for some reason that is not possible, I can stay at the Rotel. Kevin will still need to be pretty much isolated at home and he will need to keep following his post-transplant precautions. However, being at home is WAY better than being away from home and I think it will do him some good. We are only a couple of hours away from the hospital and most of the stuff that is a danger at his point wouldn’t be life threatening immediately.
So yeah… the next chapter of this journey is about to start and we are ready for anything! Thanks again for all the support and thanks for stopping by!