Really not impressed this time. As of yesterday morning Dr. Louie still hadn't gotten in touch with me regarding any prep work for the procedure, like the receptionist told me he would. I sent another email asking what exactly was going to go down, and he actually called me back right away.
He was under the impression I was just coming in to have my C.Diff treated further. When we met all the way back in May it was all about crohn's. Keep in mind all the contact I have had since then has been through his receptionist. She told me the reason this got postponed from the original date of August 26th was because I was a special case he needed to take some extra time to prepare for. How could he not know that I was seeing him for my crohn's?? This poor communication has been extremely frustrating.
I thought it was strange that he had me booked to come this Wednesday without having done any prep work. At least he actually responded to my email for once. Anyways, to treat my crohn's he needs to put me on a special drug for THREE WEEKS before I can even start the fecal therapy. He needs special approval from health Canada to even get the drug, which he asked for yesterday. If denied, which is very likely, we will need to travel to Minot to pick up a prescription. I would need to take that stuff for 3 weeks, and then finally start in Calgary.
I just don't know how much more I can take. Could he not have taken 10 minutes out of his day to explain this all to me in July? All the contact I have ever had is his receptionist booking dates for "the procedure" and then bumping them back. No information on the procedure itself let alone ever getting to speak with the Doctor. I have sent him plenty of emails that he simply never returned.
The reason we decided to do the fundraiser and try this in the first place was because I was in critical condition and needed to do something about it, fast. That was July. Since then I've been simply living a life of self-preservation. Constantly running from pain and trying everything possible just to put together a good day. This past month has been exceptionally brutal, catching C.Diff and becoming bedridden, the only thing getting me by was knowing that I only have a couple more weeks to endure. Before knowing I had C Diff and few weeks ago I was ready to admit myself and get surgery. It was so excruciatingly painful and I really believed my body was quitting on me. The drugs got me almost back to my baseline, but I really feel like I lost another month of my life, and I'm really not satisfied with my baseline anyways.
I can't live this half life anymore. I'm sick and tired of a good day being one where I left the house for an hour, or one where I handled solid food instead of just smoothies. I'm ready to have surgery and move on with my life. The pain is one thing, but I'm mentally worn out. I know I'm tough, but I'm tired of NEEDING to be tough. It's too mentally exhausting trying to stay strong during a losing fight. It's especially scary knowing this the therapy might not even work. The other scary thing is because of the treatment, for this next month, I can't take any medications even if my health takes a turn for the worse.
I decided to book a consultation with the surgeon just to have a back up plan in place. Sure enough, I can't even get a consultation until the 26th of November. So either way, I'm left to struggle for another month. I'll know by the end of the week if the drugs get approved by Health Canada, and either start them asap, or begin planning a trip down to Minot. I'll follow Dr. Louie's plan and keep toughing it out for now because like I said, I can't get the surgery until next month anyways so I might as well. Will keep everyone posted.
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