I had such a bad day at work today. And it isn't the job, it is someone at work that hasn't been very nice to me ever since I started working there. I really love my job, and everyone else that I work with. But this person was so rude to me today that even my boss had a talk with me after everyone had left and told me that I am doing a good job. And he isn't one to hand out the compliments. I have been working more hours and I am not used to being gone for so long. So it is hard for me sometimes to be at work, but then to be treated like I was today makes it even harder.
And then to top off the day I got a call from the GI doctor's nurse saying that the doctor doesn't think Rick's itching is due to the PSC, but caused by some kind of allergic reaction. He hasn't changed anything; not soap, medications, food, nothing. I KNOW it is the PSC and not an allergic reaction to something. And Rick feels the same way. He is going for even more bloodwork tomorrow to prove the doctor wrong. This doctor always seems to pass off the PSC and tries to blame something else for any symptoms Rick may have. Whenever Rick has what we know to be a cholangitis attack the doctor always says it was probably just the flu. The problem is there is only one hepatologist in our area and he is impossible to get an appointment with. So we are forced to stay with his current doctor. This is the exact reason we went to The Mayo Clinic this past summer. And right now I am really wishing we could deal with that doctor, but it isn't that easy to just jump on a plane and go pay him a visit. Hopefully the benefit for Rick in March will raise enough money to get him on a plane this summer to go back for the yearly visit the Mayo doctor wants Rick to make.
Rick takes a medication for the PSC that doesn't control it, or really help it in any way. But it does keep his liver enzyme numbers looking normal. Ever since he started taking this medication those numbers have stayed normal. I think that may be part of the problem with his doctor not giving much attention to the PSC. Rick is considering not taking that medication anymore because it has already been proven to not really do anything but keep the numbers normal anyway. His Mayo doctor was one of the leading doctor's in the study of this medication and has drastically lowered most patients intake of the drug anyway. So Rick is contemplating whether to refill the prescription or not since it runs out this week.
I know I said before This Too Shall Pass, but sometimes it is so hard to stay in that frame of mind.
Until next time,
Jaime
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3 comments:
That doctor is unbelievable!!! He thinks Rick's itching is an allergy!!? Good grief. Everyone with PSC deals with itching at some point (Carl dealt with it for years). It's not the same type of itching that comes from allergy. It's, like, in the nerves and under the skin and you get NO relief no matter how much scratching you do. You know this, I know this, but obviously that doctor does not have a clue.
I'm sorry you had bad day at work, too. I empathize. I used to work with some really, really mean girls who always had to have someone to pick on. They decided to pick on me. It sucked. It was like 7th grade all over again.
Take care,
Dawn
Hi Kids,
Guess we need to win the lottery so Rick can go to Mayo when he needs PSC help. I am so sorry that the doc doesn't seem to get the picture. Tomorrow will be a better day at work. Just keep your chin up and keep connected to your other friends at work.
I love you,
Mom
I just had my Liver Transplant May 27, 08. I HAD PSC!! I am having the same trouble with my doctor but more my cooridnator. I complained for 1 month about soreness, pressure.. to my low abdomen, and all over my liver. My Coord. swore it was strained muscles from working out! I called 2 other times and finally, the 3rd time, demanded he talk to my dr. and order a test! I got to the hospital to pick up my script, and it was a CHEST X RAY!! I called him from lobby and he argued to say that's what I said, so I got an Ultra Sound that day... come to find out, I have fluid all around my liver! It probably wouldn't have gotten this bad if he would have done his job, and LISTENED to me the 1st time! So now I am in so much pain, and just have to wait on another Ultra Sound in a couple weeks! Then yesterday he called about my blood work on Jan 14th, and forgot to call and tell me then that I need to lower my Prograf!! (rejection med) So today... I am calling Patient Advocate and getting a new coordinator!
By the way~~ my name is Lynn Livingston! ha ha! I am going to take today and read a lot of your blog! I would love to keep in touch with you, and others that are helpful to you!! (I'm really a nice girl!!)
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