Author Topic: My problem with my doctor. (Read 13751 times)

patsy · « **on:** July 14, 2014, 10:03:08 pm »

I am sorry that this is so long and you may not want to read it but here goes anyway.

I have 2 1/2 days left of my Sovaldi/Ribovarin/Pegasus treatment. Actually I am done with the interferon. Last week I was called by the doctor's nurse practitioner to come in today for a followup visit. I agreed but as I got to thinking about it decided to cancel because the treatment was almost over (except for the blood work) and I had good reason to think my doctor was not keeping informed of my status anyway. It just seemed like a waste of time and I thought that the doctor was most interested in smoothing things over with me. This would have been only the second visit during my whole treatment. I tried to cancel the appointment for today and they got quite insistent that I come in. So I did.

The first followup visit was a disaster. It was about 4 or 5 weeks into treatment. I had had a few blood tests by this time and received results by mail usually with one sentence pertaining to the recomendations for me highlighted at the end saying it was electronically signed by the doctor. I had already been in to her office for an instruction with a Solvaldi representative about how to take the meds and give myself the injections. Also, the specialized pharmacy told me that they had faxed the doctor saying that I had received my medication. The first followup visit happened about a few weeks after the class. I proceeded to take all the medication exactly as instructed and continued to get the blood work done on a schedule that was given me by the nurse. When the doctor came into the treatment room she didn't seem to know why I was there. I told her. Her reaction was surprise that I had decided to start the treatment. I was flabbergasted. She walked out of the room holding out her index finger to indicate she'd be right back. She didn't come back after about 10 or 15 minutes so I left. I thought it was really unprofessional of her not to even know what her patients were doing medically or at the very least to find out the reason for my visit so I was quietly upset and didn't respond to some of the voicemails left me that afternoon. Eventually I did talk to the nurse after the office closed for the day. She told me that the doctor wanted to talk to me and that they were going to lower my dosage on 2 of the meds and that they has asked the pharmacy to send new ones of those, Pegasus and Ribovarin. This was because my white count was low. At first they had said that it was because my hemoglobin was low but it wasn't they had mispoke themselves. I could see that in the numbers on my copy of the blood test results. Well, I never did talk to the doctor after that until they insisted I come in today. But I continued to get the blood work done and started taking the lower dosage meds as instructed.

Today when the doctor walked into the room she started asking me why I left last time and I told her. She began to lecture me on my not handling this treatment properly and that patients need to have good communication with their doctors and that it wasn't her fault that her nurse didn't communicate all I had done so far as to the treatment. She refused to take any blame for it. I did get angry but not hysterical or anything like that and continued to defend my position on why I hadn't responded to her "letters." She considers letters those little highlighted things at the bottom of the blood test results. She said my platelets were low and I should be referred to a hematologist. Being as the treatment is almost over I refused that. Then she had the nerve to suggest that I go to a psychiatrist because I wasn't "handling the treatment" properly in her opinion. That was the last straw. I didn't want to continue this ridiculous conversation another minute so I let her feel my belly and throat and the nurse came in and got my vitals which were fine and I told her I would make followup appointment when I saw that in the "letters." Maybe two more times and would continue to follow the blood work schedule and keep my fingers crossed as to my results of a cure.

Now, does this sound like I didn't handle this right or does it sound like she didn't? My experience with this doctor seems way over the top as to unprofessionalism to me and, really, the treatment is almost over and I wondered if she was just worried that I might get sick or sue her or something which I would never do because I think too many people do that and that it's partly why doctors charge so much. I just decided to try and avoid her instead. I was not getting much treatment from her anyway.

This is the last thing I have needed during this difficult time for me mentally anyway. There was never a moment that I've been in her presence that should have made her think I needed a psychiatrist. She knows I have a history of depression and I did have to be cleared by a psychiatrist to take these meds. I think that she prejudged me. I have handled this whole thing quite well. I simply defended my position and was assertive about why I got upset that day. I may have raised my voice a bit (not that much) and she could probably see that I was nervous but I maintained control of myself. It did bother me a lot though, and that is why I came on here to tell this story. Thanks for listening/reading to those who did.

Patsy

yag1064 · « **Reply #1 on:** July 14, 2014, 11:03:35 pm »

I am sorry you had such a bad experience with your doctor. I agree the doctor should be fully informed. Were you ever told that the virus was undetectable? Are you planning to have the blood work after 12wks and the final one three months later? These should be done to confirm you are still undetectable. No reinfection. It make it harder with no doctor. I am on the same 3 as you. I was told that my virus was undetectable after the 2nd blood work. I finish on the 24th of July and take the 12wk test on the 25th. If everything is good the final test is in Oct.
I would follow through with the treatment plan as best I can and not skip any tests. Maybe you can find a doctor you have more confidence in before too long and take the tests.
Whatever works out, I'm in your corner.

Blessings,

yag1064

patsy · « **Reply #2 on:** July 14, 2014, 11:25:21 pm »

Hi yag1064!
Thanks for reading my long complaining post! It helps to know someone is listening. I agreed to have a test this coming Thursday, 30 days after and I think 3 months after AND 1 year after. I also agreed to make appointments to follow up with her if she indicated for me to make an appointment in her "letters." It's just so funny that she calls those her letters. She said you never answered any of my letters! And since she didn't even know I was on the medication after the first 2 or 3 blood tests how could they be HER letters? Haha! But, yes, after the 4th week my tests did say Hep C Undetectable. I was pretty happy to hear that! The doctor saying at the appointment today that you aren't considered cured until after a year is the first I heard that though! I thought they considered you cured if it came back undetectable after 3 months. I get different stories. Actually Sovaldi sent me an email saying that it was the 3 month test that told the story. So I don't know where my doctor gets her information! Good luck to you! Sounds like we are almost on an identical schedule. Have you had bad side effects? Mine has been mostly emotional/mental but when you are in a bad place to begin with I guess that's where you are the weakest. Right? My home situation is pretty bad and I had to put one of my cats down in June. June was awful, I also got summoned for jury duty and never got to go. They postponed it the entire month and then released my group but I had to turn down scheduling work because I never knew when they would call me until the night before I was supposed to show up. Yikes! Been a little too much. I hope you are having better luck through all this. Thanks for responding. It means a lot!

yag1064 · « **Reply #3 on:** July 15, 2014, 09:07:22 am »

Hi Patsy,
you're post was fine. Everyone needs to vent. As long as you are careful not to believe everything you think you should be fine. Sounds like a good plan to follow the tests and leave treatment with confidence. If you were undetectable you should be the same way after 12wk. That the way it normally works but there are things that could go wrong. That why testing is always proper.
Well, congratulations on completing the treatment. We will both move past this. Things that seemed important during treatment will slowly dissolve into nothing.

May good days follow you.

Blessings,

yag1064

patsy · « **Reply #4 on:** July 15, 2014, 11:51:47 am »

Quote

As long as you are careful not to believe everything you think you should be fine.

I didn't embellish the story at all though. I know my mental state isn't 100% but I have found that during this treatment I have been more assertive with people and have had to suffer the consequences. I should have been like that with some people my whole life anyway (always been a doormat). The whole Hep C experience has made me take a look at my mortality and you only live once. I am 65 and have been in an extremely unhappy marriage for 44 years and once I get back to myself again, might have to do something about that. I know better than to make any important decisions like that right now though. I don't mean aggressive, just assertive enough to not let people walk on me and blame me for stuff that wasn't my fault. I called her on a mistake she made and she couldn't handle it. Maybe she needs to see a psychiatrist!

Patsy

yag1064 · « **Reply #5 on:** July 15, 2014, 02:58:37 pm »

Well Done,
Hope to hear more from you.

Blessings,

yag1064

trapper · « **Reply #6 on:** July 15, 2014, 03:48:20 pm »

patsy. sorry to hear about your problems with your doctor. Im having problems with my dr. and his assistant. 1st they said they sent in request for meds (sof/sim). They said they were denied. Asked for denial letter from ins. co. which they couldn't produce. finally they said they did not submit for drugs because they said they knew they would be denied. I told them that if your condition is bad enough (f3 or f4) and you meet certain criteria they will approve. 2nd, I told them to submit it and they did. 3rd Got a denial letter from ins. co. saying denied because the drug combo was for f3-f4 liver fib. Your dr has to call to talk to dr who made decision on info sent in. My dr called and they wanted a liver biopsy. got a biopsy which showed f3.Previously had a fibrospect ll test done which showed f2-f4, with index score of 86 (which is f3-f4) which wasn't good enough for ins. co. or they didn't send fibrospect ll to ins co. went round and round with assistant on getting initial request in.She didn't want to do it. After biopsy dr called and went over test and was going to resubmit it. I asked if I could go to office and make sure they did it right. He said "sure you can". went up there and assistant said she did the appeals in a nasty way and they didn't have the biopsy test in paper form yet. I let it go just to try to get my meds and get rid of this parasite. If they screw up I will be pissed. going to another dr takes to much time and don't want to wait any longer. Im going somewhere else soon or if I get my meds. trapper

patsy · « **Reply #7 on:** July 15, 2014, 04:01:19 pm »

trapper,
That sounds nightmarish! You are as persistent as a person should be expected to be. When I had that argument with my dr. yesterday I actually went in to other stories of people I know who have had mistakes made and refused to listen to reason from patients that I had heard of. Trying to say it's the whole medical community, not just her but that I had a legitimate complaint and she should listen. In one case the person was in the hospital and refused to hear family members tell them that the patient wasn't getting medication they were used to taking and that patient got psychotic and they still wouldn't listen. They just relied on a piece os paper that was sent in the ambulance from another hospital. They finally did listen but only just before his release from the hospital. He could have sued but he doesn't even remember the events at all and isn't concerned. But I am against doing that (suing) except in extreme cases. I know it's hard these days to be a doctor but I think they have to know that going in and listen to their patients and not be so arrogant. It's also hard to be a patient these days!! I hope you get your meds trapper. That is one part of my "adventure" that went without a hitch. The pharmacy was stellar in their professionalism and customer service.

Keep us posted.

Patsy

trapper · « **Reply #8 on:** July 15, 2014, 04:40:14 pm »

patsy; I don't like to sue either, I just want my meds. to get rid of this beast. My dcoctor at GI clinic I go to said they have 300 patients waiting for cheaper meds. I think they are just warehousing everyone to get customers. they are specialists and get big bucks to see patients. Its different when they are honest about everything, but to blantly lie about sending in for drugs, its a different ballgame. I don't understand why they would do that other than to see more patients.. Its very frustrating. they don't act like they are up to date on treatment. trapper

patsy · « **Reply #9 on:** July 15, 2014, 04:55:33 pm »

Trapper, try not to give up. The specialized pharmacy that provides my meds signed me up for a foundation that is paying my co-pays. But, in your situation, the insurance has to agree to pay the other part. I think more and more insurance companies are getting on board. When I first tried to get mine, Medicare and Champva weren't paying for this ridiculously expensive medicine. Now they are. I actually feel a little guilty when I look at those statements. I really do. That is just too much money. But what can you do?

Patsy

amocuatli · « **Reply #10 on:** July 16, 2014, 09:09:18 pm »

Actually what both Gilead (sofosbuvir) and Jansen (simeprivir) all i needed was an insurance company denial and a denied appeal they just want to make sure your insurance won't budge.
Go to the website SupportPath and idk what the name of the one for Janssen is -- if you need it I'll look at the paperwork I still have a copy of it.
I haven't had a great time with my doctor--first of all he tried to talk me into doing the interferon because he didn't know anything about the simeprivir/sofosbuvir TX I know this because I tried to talk to him about it and he was fudging trying to act like he knew like he called simiprevir another name (no OLYSIO)and he kept talking about the testing as if it were impossible to get the new drugs and talking about time frames that were all wrong--and didn't know about the study cosmos, nothing. Which I wouldn't have minded I mean he's a gastroenterologist he treats lots of different stuff but the cover up! and when I suggested he go to the easl guidelines or the aasld guidelines he got downright snippity.the first visit I told him I would wait until simiprevir was approved by the FDA the second he told me I shouldn't wait and that interferon was only for 12 weeks and it wasn't that bad and it had a high cure rate--again not realizing the numbers that were coming out of the cosmos study and hat simiprevir HAD already been approved for off label use.mWell, that kinda got me upset-- like, my doctor is supposed to take care of me!, not try to talk me into doing what he feels is the best treatment without looking into all available options you know?)
Then they got REALLY upset when they found out I went to the head of the dept at the University (100 miles or so away)and that was where I was checking my information to make sure it was right and then they were exposed as the uninformed self interested and probably, to be fair, completely inundated by all the new info people they are-- which like I say I would not like-- but if they were honest about it I could use their knowledge to understand things I don't understand like how to read a blood test ect. but No! They have to get all uppity and controlling and close minded so I couldn't ask them anything without getting an attitude in return. they didn't want me to have my blood test results I had to ask for them.
And then the np was acting like you have to do everything my way and she didn't know anything about the internet insisted that I do everything from faxed copies sent to her by the specialty pharmacy SHE want ed me to go through and I couldn't go to the hospital to get my blood taken noo I had to go to the place she wanted me to go to like they didn't know how to do but one set of pprwk and didn't want to learn or do anything new! and when my insurance denied my first application (The np totally complained about "this paperwork will take me two to three hours" she sent me the pprwk and it was about five minutes of stuff she had filled in --and when Support Path said we would have to do an appeal she did it again like, rolling her eyes (not really but that was the attitude)' and I don't want to tell you how long I waited between each phase for her to get around to the next step-- you know I finally said look I can do this stuff myself it's on line and she said No that s my job!!! (what? Really? then how about doing it and cut the attitude and the complaints this is my life here and if you can't help me step out of the way and let me get this done.) we had a little confrontation in the office where she accused me of not doing things her way and I said she was controlling. Really that's as far as it got the rest are just my feelings. So at least I did get the meds anyway I'm really grateful for that. I have ADHD I'm a teacher, too. When people read my ADHD diagnosis they think I'm stupid or flighty and they think sometimes that I'm not capable of doing things. The reality is that I have a fantastic education and I can think just fine my trouble is that I think a lot about a lot of different things and people don't do that. Also I have had trouble with numbers as of late I think because of the Hep C
If I treated the students in my care with the same kind of attitude we'd still be writing on stone tablets!!!
hey I guess I have been mad about this I just want to advise you to be informed and stand up for yourself even if you are wrong -- you'll find out if you're wrong and people will understand that you are someone not just some thing they can lead around by the nose now, that being said-- you also have to listen carefully do your homework as best you can ask questions and be open to being wrong. This is your body and you will have to suffer the consequences your heart will let you know the right path listen to it.
Wish you the best, whoever you are and if you can use this please do and if you can't please know I mean no offense to the reader.
Best Regards Fight the Good Fight
amo

patsy · « **Reply #11 on:** July 16, 2014, 10:37:55 pm »

Amo, good for you! For the most part I just accepted my doctors recommendation and went the interferon route, but people like you who are so informed should be listened to. Egos shouldn't get in the way of a patient wanting to have their doctor research a new drug/idea. It is probably just a power struggle but I can't help wondering if there are kickbacks involved. I think I've heard that word tossed around when it comes to medical professionals networking and sharing referrals etc. I've seen it myself. People are getting wise to these things now and should question their treatment. By the way, I am amazed how many Hep C treatment combinations and new drugs there are suddenly. I sure hope I'm on one that works! I just took my very last pill. I don't think I would do this all over again.

Patsy

rainbowray · « **Reply #12 on:** July 18, 2014, 11:48:11 am »

amocuatli, good for you.
I like your attitude. As for getting blood work labs, they are yours cause you pay for them in reality via insurance or whatever.
I think it is against the law for anyone to deny you your labwork, They may charge a copy fee, but it has to be minimal. I actually 'fired" five gastros in my search for Drs.
They all wanted to "treat' me and said I had to do it. Only if a succumb to their
arrogance. I asked one would you take the treatment if it were you. He did not respond. (figures)

DesertGuy · « **Reply #13 on:** July 19, 2014, 06:40:46 pm »

I went in for my first blood draw on the 17th--I have to travel to Dr. so blood is drawn at local hosp------they set me up with an online account so I can view my labs---sitting here waiting because they won't be posted until 18 hours before I see Dr on Monday----

amocuatli · « **Reply #14 on:** July 19, 2014, 07:36:26 pm »

Gosh that sounds like a great system DesertGuy what's the name of the lab?
It's a long wait, huh? My mother always told me a watched kettle never boils meaning go do something else until the water boils to take your mind off it maybe you would benefit from her advice?

Let us know...
Peace and Love
amo

badbradley · « **Reply #15 on:** October 29, 2014, 02:15:47 am »

Hello,
I want to thank all who posted on this thread- especially amocuatli. Your post on July 16 inspired me to take charge of my HCV treatment. Four wks after reading these posts I was swallowing my first dose of S/O! amocuati - you are TENACIOUS!
Just wanted to say Thank You
Brad

lporterrn · « **Reply #16 on:** October 29, 2014, 12:29:04 pm »

Good for you Brad! May your journey be easy and end with a cure.

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Author Topic: My problem with my doctor. (Read 13751 times)