Sooooooo....things aren't looking so good in the transplant department for one apparently "too healthy" person...yes, me. And sometimes it's incredibly difficult for me to organize my thoughts, so bear with me if I'm ramble-y and sounding confused (well, that might be because I probably AM confused, but I digress).
I called the clinical trial coordinator today to report to her a potentially adverse effect, being that I've had my period for 3 solid weeks now, and am heavily clotting (gross, and probably too much info, but too bad, it's my blog :). This has happened once before, which the clinical trial coordinator mentioned. She also noted that I wasn't on the drug at that time, in other words "not my problem". Ugh. My doctor was also in the room with her, and they put me on speakerphone (which is a wonderful yet incredibly annoying invention, don't you think?) and I told Dr. Fervenza what was going on. He wanted me to change my warfarin dosage because that's what he thinks it is, and started rattling off some dosages. Do doctors seriously not understand that it's not easy to change dosages??? That I can't take a 3mg pill and make it 1mg???????? FOR THE LOVE OF GOD AND ALL THAT IS HOLY WHY THE HELL CAN'T ANYTHING JUST BE EASY AND FUCKING NORMAL?????????????????????????????????????????????
Whew! Sorry about that...had to get that out.
Anyway, I told him about my severe swelling (I'm up about 15 pounds from last week...I'm seriously at the heaviest I've ever been), and about the fact that I can hardly sit and breathe because of all of the water pressure on my stomach and chest. I've had training the last 2 days, and a sales meeting the day before that, and it's absolutely wrecked me. I wore my compression stockings today just so my feet didn't explode, but it made my size 10 pants feel like leggings because all the water just moved up. Awesome, right? So he told me to double my dose of diuretics tonight and tomorrow morning, and then to give him a call back to tell him how much I'm peeing. I bet no one else gets to call their doctor and talk as much about peeing as I do...jealous, aren't you? I'm all sarcastic and tongue-in-cheek tonight because I just have to be for fear of losing one of the last little threads of sanity that I feel like I have right now.
Dr. Fervenza ALSO mentioned that he spoke to Dr. Matas (transplant surgeon at the U) and let me paraphrase here when I say that they both think I'm nuts. Essentially, what I heard was that both of them agree that it's not a good idea to give me a transplant. And Dr. Fervenza mentioned something about the fact that he's keeping me in mind because he's talking to another company that has a potential new drug. Now while I appreciate the fact that he's "keeping me in mind", I'm done being a guinea pig. No more drugs...no more "let's see if this will work"...I'm done. D.O.N.E. I don't want to hear about another drug because, let's face it, it's hopeless. 4 years of spilling this much protein with no changes for the better, albumin constantly going lower, swelling always worsening (have I mentioned the fact that I'm too healthy to transplant?????).
So, hopes crushed unofficially. I'll officially let you all know I'm crushed when I'm officially told "no".
I called and made an appointment with my PCP today because I need a refill on my crazy pills, plus I need to talk to her about the cyst on my hip (did I mention that anytime??? oh yes, I've got a cyst on my left hip that was discovered during my MRI....great, right?), as well as the bleeding. I called the coumadin clinic that manages my INR, and they don't think that there's any correlation between my INR and the bleeding (and I trust them more than my nephrologist on this one), but I'll go in and get it checked again on Friday when I go to see my PCP. She'll probably send me back to a useless OB/GYN who will see that I'm coumadin and then blame it on that.
Do you all see the constant battle that this is? Do you understand how hard it is for people that are chronically ill that have multiple symptoms/issues...who the hell do I go to for an issue? My nephrologist, my PCP, my OB, a surgeon, the coumadin clinic????? Somebody tell me who, please.
I've got kidneys that suck but I'm apparently I'm not sick enough for anyone to take me seriously, and the fact that my quality of life is at a big fat zero is of no concern to anyone. Anyone. I have a cyst on my hip that was discovered during an MRI, but my nephrologist doesn't "think" that they'll do anything about it, so he's not going to either, meanwhile I'm always in pain. I'm bleeding, constantly, for 3 weeks, clotting, and probably becoming even MORE anemic, but my OB blames it on my coumadin because she's too damn lazy/scared/not skilled in chronic issues to think it could be anything else.
For fuck's sake...I give up. I'm fed up...fucking fed up with the system, fucking fed up with these kidneys and how fucking hard it is to do anything, and how fucking much energy and time it takes to try. I am the best advocate I have, and I'm pretty damn good at it, but I'm so tired of fighting...soooo sooooo tired.
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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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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... -
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...
Jenn, this is quite aggravating to read, much less experience no doubt! I am so sorry that this is happening to you and I honestly wish I could take the pain away, make you pee tons so you can get the water weight off and you would feel so much better. Being in Rockwell meetings for two days cannot make much in the way of relief either for you and I don't know what to say but please keep your strength and don't give up. Your mind is still defiant and that is a good sign for what lies ahead. Rest if you can and sink into great warmth of being in someone's arms. (Husband, children, Lemmy's)
ReplyDeleteHello Jenn. I feel your pain and feel so bad for your situation. I can relate to what you write and wish I could say I did not. I found this interesting link that I want to share with you. It won't exactly fix your situation, but it is nice to actually have a doctor admit their short-comings. I do not agree with all that he says, as I think these doctors need to place a little value in our knowledge after years and years of our own research in desperation to feel even just a little better, and even more so that we actually DO know our bodies best. I have multiple chronic diseases (2 of which currently have no cure)and trying to get these doctors to even acknowledge each other is sometimes more difficult than an act of congress! Grrrrrrr.....
ReplyDeleteA Letter to Patients With Chronic Disease
http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/
Hang in there. I am Praying for you and your family.
Terrie
How did I miss this earlier? This really really really really... x 1,000,000 SUCKS a big one. I just don't get it. I don't understand why quality of life isn't more important. I don't blame you for the being done and all the profanity. The the only thing I can offer right now is that with every frustration, with every call to the doctor, with every pound of water & with every exhausted day, you are inspiring others. Look what you have done for our community. I've got to have faith in God that the karma will come back to you in the best way possible... soon... very very soon.
ReplyDeleteDat's some bullshit. Hoping that now that it's been a while you have some of the non-kidney stuff closer to figured out.
ReplyDelete