Hep C Discussion Forum

DJ · Senior Member

RE: So discouraged

Judy S · Senior Member

DJ, similar thing with me. Originally, my dr used every excuse to prevent my tx from getting started. (They even lost my EKG from one Kaiser dept to another; I had to have another.) I couldn't afford another biopsy, esophagogastroduodenoscopy, and other things they wanted to do, first. It took a favor.....my aunt's friend got me a free visit with her boyfriend who is a Transplant Hepatologist, and he called my GI dr at Kaiser. Turns out, they were colleagues years ago. Well, he talked my GI into getting me straight into tx, without the bx and EGD. The GI got me an appt with dr in Infectious Disease dept to treat the Hep C. Then......that dr wanted to remove me from tx immediately after my first PegIntron injection, as it landed me into hospital. I had to fight and get another dr--the dept Chief--so that I could continue tx!

The point of this is it proved once again, that all things happen in their own time for good reasons. Like you, I had Everything planned; I'm very organized and don't like change. But certain things happened to me between late last year and tx start in March 2012 that completely changed my life and circumstances. I see now, it was necessary in order to treat. And new plans came out of nowhere, very shortly after I stopped tx. One was a suprise 8-day visit from my brother out of state, whom I hadn't seen in over 20 years. Another was a Vegas trip with my daughter. The timing with both of those was just pure, dumb luck but never would have happened if the previous events from last year hadn't happened. (Too long to explain details.) Just trust that things must happen in their own time. I wish you the best and please keep us updated. Sending you a big hug. smile

DJ · Senior Member

Well I have an appointment with a new doctor next Friday. I am hopefully things will start to look up after I see her. Thanks everyone for the encouragement. Onward and forward......

Bills · Guru

DJ wrote:
Bills wrote:

-- Edited by Bills on Friday 14th of December 2012 01:41:33 AM

Thanks. I don't have a folder started, but they have never given me anything to put in a folder. I primary care doctor gives me copies of tests, but the specialist I was seeing never did.

You can just start now and forward. It will work out don't let it get under your skin I think your still unsure of your next step? I believe Doctor's are obligated to give results he ordered or has copy of and share them with whoever is going to treat you. My sister has X rays and all kind of stuff she gets done. If you decide to move on and don't have a doctor lined up. Some dr's offices charge a fee for the copies. I don't have everything either I've kept the most blood and anything else since July, Disability and leave I took. Some other stuff from my failed trial last year It's not complete but better than nothing. Hope it works out soon and you get started soon

BillS

-- Edited by Bills on Saturday 15th of December 2012 01:42:17 AM

DJ · Senior Member

Bills wrote:

All I can say is It's not surprising to be depressed. There is a lot of success here and also as some real hard times. and every case is hard to handle But this form has a lot of encouragement. Maybe timing and Doc isn't right As Phil said your records should be transferable All my initial testing qualified me when I changed doc's They should give you everything from day one See if you can get all the reports / written results on the ekg and have that doc add one on their findings. and make a binder yourself or file ( don't know were you been going however) My opinion I see a big difference in a teaching hospital that specializes in liver and hematology / hepatology as opposed to smaller practices The Hospitals & liver guys have more resources and consults and see more livers in all stages than private practice. It's a long road so try to keep walking it You will get there
BillS

-- Edited by Bills on Friday 14th of December 2012 01:41:33 AM

Thanks. I don't have a folder started, but they have never given me anything to put in a folder. I primary care doctor gives me copies of tests, but the specialist I was seeing never did.

DJ · Senior Member

Mary Jane wrote:
hang in there DJ I believe that all " things" happen for a reason... hopefully with our baby boomers voices to be heard the push to make treatment easier, cost effective, and less symptomatic as far as side effects are just down the road..( like 6 months to a year) your time is coming ... just breath... peace and love MJ

Thanks!

Mary Jane · Guru

hang in there DJ I believe that all " things" happen for a reason... hopefully with our baby boomers voices to be heard the push to make treatment easier, cost effective, and less symptomatic as far as side effects are just down the road..( like 6 months to a year) your time is coming ... just breath... peace and love MJ

DJ · Senior Member

gatekeep wrote:
I don't mean to down play your situation. You'll be on treatment soon I hope. I also had hopes for a easy Tx. I waited 20 yrs for better Rx. I almost made it to the one happy pill that's on the horizon but I just could not wait any longer. Keep smiling there's hope.

Oh won't it be nice when they come out with an eaiser treatment. Wish that time was NOW! I am trying to get into a new clinic, just waiting for paperwork for referrals.

Bills · Guru

All I can say is It's not surprising to be depressed. There is a lot of success here and also as some real hard times. and every case is hard to handle But this form has a lot of encouragement. Maybe timing and Doc isn't right As Phil said your records should be transferable All my initial testing qualified me when I changed doc's They should give you everything from day one See if you can get all the reports / written results on the ekg and have that doc add one on their findings. and make a binder yourself or file ( don't know were you been going however) My opinion I see a big difference in a teaching hospital that specializes in liver and hematology / hepatology as opposed to smaller practices The Hospitals & liver guys have more resources and consults and see more livers in all stages than private practice. It's a long road so try to keep walking it You will get there

BillS

-- Edited by Bills on Friday 14th of December 2012 01:41:33 AM

2willy · Senior Member

one day at a time, you can plan how to attack this treatment but not the outcome. I look at it that maybe you with treatment will go to your future grand daughters wedding

Bill and family

gatekeep · Senior Member

I don't mean to down play your situation. You'll be on treatment soon I hope. I also had hopes for a easy Tx. I waited 20 yrs for better Rx. I almost made it to the one happy pill that's on the horizon but I just could not wait any longer. Keep smiling there's hope.

DJ · Senior Member

gatekeep wrote:
I can't help at times to think back what the first MD told me30 yrs ago. " this Is a big $ disease and, a lot of people are making a lot of $ off it"

Well we have spent a lot of money on all kinds of tests already. I don't understand why I can't just start treatment. I mean, if I had breast cancer would they be putting me through all of these test waiting for every little thing to be absolutely perfect before starting treatment! No! They would treat the cancer. I sure hope the next doctor will treat me. I am so mad over the time I wasted up until now. I mean, seriously, I am one of those types that do everything the doctor tells me, I follow the 'rules'. I just need to start the treatment. Oh well.

Sure wish they had the all pill treatment out now, with no shots. I would love to just do that and if I could, I would love to be in a study for that instead. Seems like it will all be simplier then. But it is what it is (that is from the sermon at church last Sunday, and it has become my new motto.....It is what it is.....).

gatekeep · Senior Member

I can't help at times to think back what the first MD told me30 yrs ago. " this Is a big $ disease and, a lot of people are making a lot of $ off it"

DJ · Senior Member

news wrote:
I wish I could remember all the plans I cancelled to complete my treatment. Weddings, funerals, reunions, birthday parties. But I did complete my treatment. I agree that you will enjoy many more planned events in the future. The few upcoming events will simply have to go by the wayside. You need to rid yourself of this virus so you can plan and execute the rest of your life. Alan

Thank you. You guys are right. I just had it all worked out so 'perfectly' and had cleared 7 months of my life of events so I could just get this done. But every year will have new events and new family moments. I was just on Facebook and a friend posted pictures of her and her grandson. I don't have grandchildren yet, my daughters are in college, and it made me think of all the things I have to look forward to if I can just beat this thing and rid my body of it for good. And I may miss my neice's wedding (which is far away, if it were local I would probably still be able to attend whlie on treatment).....but I have two daughters who will most likely marry one day and I want to bet around to see those more than my niece's wedding this summer. Thanks again for the 'pep' talk. Sometimes you just need to have a little "self sorrow' before moving on :)

news · Guru

I wish I could remember all the plans I cancelled to complete my treatment. Weddings, funerals, reunions, birthday parties. But I did complete my treatment. I agree that you will enjoy many more planned events in the future. The few upcoming events will simply have to go by the wayside. You need to rid yourself of this virus so you can plan and execute the rest of your life. Alan

Mary Jane · Guru

I understand about plans, it may all work out, it will depend on how you deal with the drugs.. some do better than others, and yes the glass is half full.. many more weddings and vacations on the horizon.. all the best MJ

DJ · Senior Member

Mary Jane wrote:
hang in there I had a similar experience, it took about a month and a few days to get it all together to start trx and I had to sign some paperwork and have my medical records sent to my doc. It was the insurance co that drug thier feet.. all the best MJ

Thanks. I am just so upset because I had gotten everything in order and if I had started by the end of the month like I was suppose to everything would time out right. Now I will probably miss my only niece's wedding and will have to cancel a family vacation (both scheduled for next summer). But if I can succesfully complete treatment I will hopefully have many more life events ahead.

Mary Jane · Guru

hang in there I had a similar experience, it took about a month and a few days to get it all together to start trx and I had to sign some paperwork and have my medical records sent to my doc. It was the insurance co that drug thier feet.. all the best MJ

DJ · Senior Member

2willy wrote:
Best of luck with new doctor, I went through something like that but a little crazier nurse wanted to take me off treatment because I was cranky towards her screw ups. I have had stops and starts and just have to remember that you have not come this far to be denied the chance of recovery
Bill and Family

Thanks. This illness is so frustrating, and I always did feel like the nurse practiioner was not taking it very serious anyway. Hopefully the new doctor be better.

2willy · Senior Member

Best of luck with new doctor, I went through something like that but a little crazier nurse wanted to take me off treatment because I was cranky towards her screw ups. I have had stops and starts and just have to remember that you have not come this far to be denied the chance of recovery

Bill and Family

DJ · Senior Member

Phil G wrote:
If you've already had all the required tests and exams thru your first doctor, that information can and should be transferrable to your new doctor. That's professional courtesy if not a legal requirement. In theory, it should take a very shot time for your new doctor to review the info and press on. Best of luck.

Thanks, I hope that is how it works. My primary care doctor has already referred me to another clinic in the next town and this time I should be with a real doctor (the one she sent me to before was a nurse practitioner and she was quite young, from the photos on the website of the doctors at the new clinic they appear to be quite a bit more mature). So hopefully I will have better luck with one of them.

Phil G · Senior Member

If you've already had all the required tests and exams thru your first doctor, that information can and should be transferrable to your new doctor. That's professional courtesy if not a legal requirement. In theory, it should take a very shot time for your new doctor to review the info and press on. Best of luck.

DJ · Senior Member

I found out 6 months ago I have Hep C and have been doing everything the doctor has told me to prepare for treatment. Last week I thought I was ready to go and today she called and said she can't start because of something she saw on my EKG (even though at the hospital when I took it they told me it was fine!).

Every month when I go to see her she comes up with a new reason for me not to start. Today I told her that I was done. That since she won't treat me if my body isn't perfect, and it is never going to be perfect, there is no reason to continue.

I am So discourged! I just contacted my primary care doctor for a new referral. Looks like I will be starting with a new doctor. I wonder how long it will take before they will approve me. I hate this because I have to drive to another town and start all over with another doctor.

I am just so upset right now.

-- Edited by DJ on Tuesday 11th of December 2012 09:38:39 PM

Hep C Discussion Forum

Legal Disclaimer: