I'll admit that I went to my appointment in a fighting mood about the metolazone, so maybe that started it off bad. I told my neph that I wanted to talk about our last interaction because it left me a bit uncomfortable. I felt as though he didn't think I was capable of taking care of myself while taking the metolazone. And after experiencing the wonderful outcome of this drug (at least for me) I was angry that he hadn't given to me sooner.
I could go into a great amount of detail, but I've got to process it all a bit more first. He aid things like he didn't know I was moving to Minnesota, and that he didn't know I was taking Humira. Clearly, he's wrong, because we had conversations about both.
He was behaving as if somehow I'd hurt is pride...about the clinical trial maybe (again, total crap because I actually printed out the study and gave it to him LAST SUMMER to read...he did nothing, so I had to take matters into my own hands). The way he said things led me to believe that he's pissed that some other doctor is providing me information..I guess that's how I'll break it down. At this moment, I feel it's all total crap. At the end of the day, isn't my HEALTH and WELL-BEING the most important??? Sadly, that's not how I felt when I left that appointment. I left in tears....crying, sobbing in my car...clearly disappointed by the discussion. I feel as though, since he knows that he can't do anything drug-wise to change the course of my disease, that he pretty much poo-poos anything that I bring up.
I don't understand what it is about some doctors, but clearly there are some issues. He did something similar when I went to the Cleveland Clinic (only not as bad) which really threw me off because he actually suggested that I go for a second opinion....kept saying he was fine with it. In all actuality, I don't think he WAS fine with it. He probably would've been fine if I had followed his suggestion to go to Ohio State where he did his training, but I didn't think that was going to do me much good. I wanted a brand new set of eyes on my health, and he told me several times that he had already consulted with Ohio State. Why on earth would I waste my time if they already agreed with everything he said? It didn't make sense to me, which is why I pursued Cleveland Clinic. Looking back now, I feel he almost got some pleasure when I was pissed about how that whole thing went.
And now that I'm working with Cincinatti Children's Hospital and Dr. Goebel, and HAPPY with how it's going, he's not OK with it. He was like, "I don't who this Goebel guy is". Again, crap, because I told him several times who he is (btw..he's the Medical and Clinical Director of Kidney Transplantation).
When I mentioned Minnesota, he mentioned something about Mayo (which I already planned pursuing). When it came up again about having another child, he made some snarky comment about how maybe my fancy doctors at Mayo would tell me something different.
Ok, as a doctor, I feel that this was TOTALLY inappropriate. I truly don't feel like I'm reading anything more into this than what is truly happening. Why wouldn't he be happy that I'm in a clinical trial and doing what I can to a) help myself and b) help others? Why isn't he happy that I'll have a opportunity to be seen at Mayo Clinic, which has one of the WORLD'S largest group of nephrologists? I just don't understand. I'm confused, shattered, and so sad.
I feel like I just lost someone working for my side. I'm glad I got a prescription for metolazone, but the victory feels pretty empty.
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Transplant / Living Donor Info for me (edited)
I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I&#...
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I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well My first blood press...
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So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well. HOWEVER....if you're blood type is NOT O+, there...
Oh, boy. I have been through this...with more than one nephrologist. Some of them are really intimidated by you consulting with other physicians. And yes, you would think that would be happy when you take the initiative regarding your health and seek out clinical trials and other information. I'm lucky now that my nephrologist knows about and respect the researcher I have a relationship with at UCSF-- but most of the nephs in the trenches aren't like that, unfortunately.
ReplyDeleteI have been through this too... I had a local neph who resented the fact that I went to Mayo. Luckily my new neph is accepting and encouraging but I think that may be just because he doesn't know what else to do with me. :)
ReplyDeleteYikes, sorry. Sounds disappointing at best and hurtful at worst. Maybe good timing to be moving on from this doc? In any event, I am sorry you had this negative encounter.
ReplyDeleteSo sorry about this strange interaction. I, too, had a very similar interaction with my neph almost two years ago when I went to Mayo. In the end I just explained to her that I trust her but just wanted to see what a "research" facility had to say about this. She understood and even took the advice that they had given regarding treatment. Hang in there! I did not know you were moving to Minnesota but maybe Mayo can be your new docs!! I saw a Dr. Erickson...although kind of nerdy, very smart!
ReplyDeleteGah - that would piss me off to no end, and I'm hard to rattle. I think that is why I have put off going since my move.
ReplyDeleteIs that the last visit with this one before your move? Probably not. Is there another doc in the practice you could see? That's so frustrating.