Hep C Discussion Forum

Tig · Admin

RE: I'm tired of all the BS!

Zlikster · Guru

Congrats Tig! ;)

put UND 12w in your forum signature :D

JoAnneh · Guru

Tig, I hope you have stopped throwing up;
I can't imagine anything worse.
I had nausea that was satisfied with eating
Lots of crackers. I actually gained weight on
Treatment. The Invicek started it and then I
Used food to comfort me too.
My thyroid was slightly abnormal at
The end of treatment (11th month).
My NP told me to wait and see if
Thyroid improved on my blood work 12w +EOT.
If it didn't I was to see a specialist.
Any symptom that acted up too much, she
Would suggest a specialist in that field of
Medicine. THANKFULLY, my thyroid straighten up
On its own since I was finished w tx.
You are having a tough time and like me
You are discovering the blessings of this
Forum.
I missed why you are going to the dentist.
I decided not to go until EOT, my gums were
Too sore and I didn't want to risk bleeding
With anemic nor risk infection.
I truly believe if you could get rid of the throwing up
Life will become more tolerant. Hope you are better.
Xxoo

-- Edited by JoAnneh on Monday 26th of August 2013 12:31:55 AM

Biggyb · Guru

Good Job Tig, Hang in there!!

Tig · Admin

Big Amen on that one! Thanks for the best wishes, it means a lot to have the support of people here. You're so right that most people don't understand what we're going through. Even the ones that are supposed to only know enough to get by! I've seen the troubles you're having right now and hope you know you're not alone, even when it feels that way. Don't let the nerves get to you. The stress generated by worry is terrible all by itself. Don't add problems on top of problems. You know it doesn't help, and I know it doesn't help! So try hard to leave those thoughts behind and concentrate on YOU! That's the first step toward getting better. Be good and say a prayer for yourself and I'ill do the same. We're all in this together! xxoo

daddysgirl · Member

Hi Tig, Congrats on the UND! And I'm sorry about the docs, they have no idea what this is like, I'm sure there are some good ones out there, but just like lawyers you pretty much have to do their job for them while they get paid LoL! Love and Prayers

Tig · Admin

Thanks for the great advice and understanding! It helps to know how the rest of you see things. Very often we overlook easier solutions because we're so overwhelmed with our current situation. That's what makes this forum great! smile

Kellie · Senior Member

Hi Tig, Congrats on you awesome UND. I'm sorry about the boneheaded medical folks you have. Yes, you have all the right to switch. Look at the dr. reviews online. They are helpful. Sometimes there are glitches in our journey and we have to do more footwork. It doesn't seem fair or right, but you may get a great hepdoc soon. Don't let the boneheads get you down friend. xox

Tig · Admin

Thanks Sandy for sharing your story with me. I'm so sorry you had to go through that! That was negligent on your doctor's part. I applaud you for the strength you showed handling that. That would've made many go postal! I've got perhaps the last appt with one doctor coming next week and depending on his explanation and answers ill be following your lead. I'm disappointed above all because these offices apparently have little real concern about us after we leave their building. I was lead to believe differently and did. Discovering that my ability to trust people has again been proven faulty just shows me I've got some work to do.

Thanks for the UND wishes! It's a real accomplishment and not easy by any stretch. 13 weeks down and God knows how many to go! Together we can do it (our doctors are another story)!! Good luck friends!

Matt Chris · Guru

Hello Tig

Congrats on acheiving UND, it's a day you will never forget. It also means your body is responding to the Meds.

Dealing with treatments issues correctly can be a challenge , it take a commitment from you and a skilled compassionate Hepatologist . From what I have observed you are not lacking commitment and have what could be described as "true grit" so indeed find a Doctor that cares and knows the limits that you can take.

Doctors are like the rest of us, some communicate better than others and some show outwardly more compassion and some really keep on top of there patients numbers and needs some don't.

In my opinion we can tend to expect to much from all Doctors thinking they know everything we don't. They can have the same dailys stresses and life's concerns as the rest of us. So though we pay a large sum for their expertise we don't alway receive due compensation in return.

It's like Malcolm said most regular MD's are way out of there league dealing with HCV. We should have a skilled up to date Hepatologist treating our issues.

Tig I feel kindred spirits with you about the frustration that can occure regarding treatment, so hang in there it's worth the trouble when you achieve SVR

Matt

-- Edited by Matt Chris on Saturday 24th of August 2013 05:47:12 PM

tonib · Senior Member

What did you say???? UNDETECTED!!! WOOT HOO!!! YAHOO!! SNOOPY DANCE!! biggrin So happy for you!!

ucbgal · Senior Member

tig,

well congrats on und!!!! you should be so proud of yourself for having to deal w/tons of sx,anemia,and uncaring dr.

i urge you to make an appt. w/ another heptologist. also start reading patient reviews online. finally, i always fax any ?'s,concerns and requests to ensure proper documentation,along with a voice message.

currently i'm in a similiar dilemmna as well. the icing on the cake for me was when on 7/26 my hemo was 6.8 and dr. had my cbcs and didn't call!

i wound up in hospital on 7/30 w/ a 6.0 hemo! i have lost all respect&faith for my dr. furthermore i wrote 2 reviews of my dr. online detailing everything. he knows i wrote them,but won't discuss it for he recently perforated a patient's colon this summer. there were 2 reviews regarding that!now he calls w/in 48 hrs and even faxes the cbc's to me.

on 9/5/13 is my appt. w a younger dr. affililiated w/a hospital that has an outpatient center for transfusions!!!! also he's highly rated online and voted as nj's #1heptologists. take a risk and call another dr!

stay strong&be well.

sandy,ucbgal

Tig · Admin

How difficult have those of you that needed to change treatment doctors found that process to be? I may have an office that thinks the first and only choice when your test numbers start to fluctuate is to stop treatment. I finally reached UND! I'll be damned if I'm going to quit. Anyone that has some thoughts on this, they are appreciated.

Tig · Admin

Thanks Dr. M! The nurse said I should set up an appt. with an endocrinologist and I told her that I won't go to anyone that isn't familiar with our treatment and the meds being used. Every time you see a new doctor, that's the first thing they question and admit they don't know enough about it. Now that's frustrating! I'm hopefully going to see my Hepatologist next week and i guess I'm going to have to ask some serious questions. How difficult is it to switch practices when you're in the middle of treatment? I fear making my current doctor mad and then having problems with records and insurance. It irritates the hell out of me that we have to deal with medical professionals that only perform half of their duties and then act surprised when you call them out on it! Don't allow your doctors or nurses to forget that you're a living, breathing individual. Stay educated on your treatment, it really bothers them when you know just as much as they do. It really shouldn't, but when you present them with the facts, they have no option but to realize you're educated on the illness and the treatment. I'd like to see our doctors and nurses as concerned about our progress as we are. If yours is, considered yourself fortunate!

mallani · Guru

Hi Tig,

Congrats on the Undet. That's the big one. Your Hb and platelets are low which is to be expected on the Victrelis triple. Your TSH is mildly elevated suggesting a degree of hypothyroidism. I wouldn't let anyone treat it unless my TSH got to 10! It's probably due to Interferon- just another wonderful side-effect! Carry on, mate, you'll be fine. Cheers.

Tig · Admin

Well I persisted and finally got through to the nurse again and had to sit her down and get very specific (I thought I had). Turns out she wasn't looking for the most current report, but I'm curious how she had some of those numbers she originally referred to. Oh well, as Alan mentioned, it's all part of the game and I'm going to win that game!

That said, I finally got the 12 Week results:

Abnormal's only:

Glucose: 108. (Fasting)

Hemoglobin A1c: 5.8 (pre-diabetic)

TSH: 5.33

WBC: 2.3

RBC: 3.42

Hemoglobin: 10.4

HCT: 31.6

Platelets: 99

Ab Neutrophils: 697

Ab Monocytes: 138

The promising report:

HCV RNA QUANT <43 NOT DETECTED. <43 IU/mL

HCV RNA QUANT <1.63 NOT DETECTED. <1.63 Log IU/mL

WOOT!!!! Finally some good news biggrin

mallani · Guru

Hi Tig,

Don't let it get to you. Your Rx sounds less than average, and I agree that most non-Hepatologists are useless when you try to discuss Rx issues. Thankfully we do not have Rx nurses or NP's over here. If your doc is away, he should arrange for another Hepatologist to look after any problems you may have. It would drive me nuts to deal with the crap you've put up with. Struggle on, the thyroid will sort itself out. It's not meant to be easy, but the end result is worth it. Good luck!!

news · Guru

Sounds like a normal treatment to me smile . The good thing is, not every week will be like this one. I went 36 weeks (12 on Incivek triple, 24 more on Peg/Riba), and although my care was almost always great, there were times when I would have been unhappy no matter what. Unable to take a hot bath because of the itching, unable to comfortably go to the bathroom because of the Incivek fire-in-the-hole, nauseated, weak, no appetite, particularly for 20g of fat three times a day. It is a pitiful existence. Add a rough ride from the medical pro's and you approach intolerable.

But this is a moment in a long process, and in fact most of it will be tolerable. I would sink into despair, then laugh at myself when things improved in a day or two. I only missed three days of work in 36 weeks, aside from a planned vacation. What I did that made the most difference was to continue my exercise, even on bad days, try to eat a decent diet, get lots of sleep, and get up every day and go to work. When I stayed home I ended up in bed all day.

Just keep in mind that not all weeks will be the same, and be sure to recognize the good ones.

Alan

Tig · Admin

Dart 14. I'm sick, throwing up daily, nausea the rest of the time. I've got all the symptoms and then some! I had to call my doctor about some dental concerns and got his nurse. Well my doc is on his third freaking vacation of the summer, so his nurse called his fill in for help. I got a call today and was told that the replacement doc wasn't sure, so HIS NURSE said I should tell my dentist to (get this) BE CAREFUL AND DON'T LET IT BLEED TOO MUCH! Is that one of those DUH moments or what? Then I'm told that since my Thyroid is out of whack (quote), that I should find an Endocrinologist to take care of it. I thought the Hepa doc was supposed to handle the treatment and any problems that developed. Am I wrong? Seems like everytime I see a different doctor, they don't know how to handle my care because of all the medication complications and refer to my hepa doc, who isn't available this summer! I went ahead and requested my hepa nurse to send my latest labs which are my 8/15-12 Week results. They should include my VL load, LFT's, CBC w/ Diff, TSH. She sent the labs that were drawn on 7/15 and all I got was the old CBC. Then she sent them twice! So now I had to leave a voicemail to straighten that out!! Am I being unreasonable to expect better treatment or is this just something we have to put up with? My Riba rage is really starting to fester...

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