Blood results refused....

After just dicovering this site today I am reading through some of your postings and questioning what is going on with my treatment! I asked for my blood results early in the piece for in Australia my Dr would simply give me a copy. Here is London they were refused point blank....specialist nurse said they do not give them out and I didn't see my Dr again until week 14 to be told treatment not working! But can stay on for up to 2 years with miniscule chance of clearing virus!
I would only be told my platelete count and have been on a low dose and bloods done each week!....surely this is not acceptable from what I am gathering of some of your comprehensive details you have?

[APKhaos]

I'm a transplanted Aussie, so I have not sympathy given you have subjected yourself to British medical care:-)

Patients rights are a reality here. Sure, there are some drs that fail to communicate, but things like labs are always provided to the patient [or at least that's been my experience].

Have you asked your dr for a copy of the complete labs? It may be a case of can't = don't want with the nurses??

[fishdoc]

in the states, at the Drs office you have to ask in writing... here I find it easiest to just go to my labs, they know who pays the bill, and I see them a heck of lot more often than the Dr. ..good luck..

[GrandOak]

I've never had any problems getting labs on this side of the pond.  They don't always offer them, but when I ask for them, I've always gotten them without any hassle.

[Sweetie6852]

I as a matter of fact asked today - my first blood work since I start Tx - not sure what it all means except - Nurse practitioner says significant anemia - on 4th week. Pegintron and Ribavirun 1200 mg

the red blood cell count was 3.34 yesterday, hemoglobin 10.1 and hematocrit 29.9. They were ordering Procrit from my insurance company - is there an easy place to understand what these mean?

[worrywartwife]

We are in the U.S. We are lucky to be well insured, paying customers, and my husband's doctor has a phone line dedicated to requesting lab results, which they have always called with the same day it was requested. In addition, when My husband does have an office visit, the office staff has been happy to xerox copies of all his lab on request. He was diagnosed in March and I already have a big fat folder of them. It is a great health care system, IF you can afford it. Our daughters are both in their 20's, and neither have insurance at work. I shudder to think how different their experience would be if it was one of them with HCV.
.

[APKhaos]

http://www.labtestsonline.org/understanding/index.html is a good resource to understand the basics of common test panels, adn some more advanced tests. Hope this helps!

[Pauly Boy]

It's too bad you are being put thru this type of stress, especially when it in no way will help your health or well- being, as I see it. In the USA it is our right to have the results of those tests, and it should be your right to know regardless of where you sleep at night: London or New York!!!
First off, how are you feeling? Any bad sx now that need attention? Or are you just trying to get results too keep in tune with what's going on with your tx?
If you are having bad sx, I'd get to the doc and demand help right away! During that meeting I'd resolve this issue with him directly.
Either way, I'd spend some time the next time you see the doc and raise this question and get it straightened out. I certainly hope that you get the proper tx and part of that tx is too feel at ease with what is being done for you during this process. Years ago many docs in this country had an arrogant type of attitude that cried: " I'm the doctor, you just have to trust me". Those days are gone. You deserve to know what's going on with your body, and if I had someone try to hide that info from me, they'd lose my trust, quickly...Wishing you success & good fortune in your journey. Stay strong!!!    Pauly

[CitizenSmith]

Hi, something not right here, which Liver Department do you attend? The normal way it works is they write to your GP and send a copy to you (unless you specifically said you don't want a copy) that obviously takes a week or two. In my case if there is any concern with bloods (Hb in my case) I had the blood drawn one day and they rang me at 2pm the next with the result.I do know they don't want everyone ringing them for no reason e.g. their bloods have been normal for weeks but if I want a print out of my full bloods they do it promptly no problem.One possible problem is some of the centres in London are working on a industrial scale so if you don't ask they won't offer (you'd be surprised how many people don't care about their lab results) so be proactive.I have personal experience of UK,Oz and NZ health systems and I know which I would prefer.Best wishes with your journey.

[tipiwoman]

Thanks for all your experiences and I am being seen at the Chealsea and Westminster Hospital, citizensmith the Gastro dept.I asked initially for results and my nurse cut me off saying that isn't done here and they give them to no-one at all, according to her! I was shocked and felt untrusting from that point on.She has fobbed me off saying patients don't need to know results for they fluctuate during first weeks and would make no sense anyway! I am really feeling pissed off with my treatment after reading everyone's info in the forum and will demand I am supplied with them now! This has not happened to me in years for my Dr in Oz was up front and shared her knowledge...didn't play God!!!! Thanks heaps for your experiences and the best of luck, love and laughter to you all!

Someone recently said to me that everyone wishes for their health the most...well I would be in aggreeance....then he said but what about humour, for oneday we may all lose our health but if we have no humour it would be really dire! Made me think ya know. Been using laughter therapy to get myself through....watch'n Billy Connelly tapes!

[CitizenSmith]

Hi, that's bad, the Chelsea and Westminister has a reasonable reputation. First off I'd think seriously about changing your nurse if you can't work with or trust her/him your entitled to.Consider speaking to Patient Advice and Liaison Services (PALS) they may help sort things out.Be a pain in the arse,they'll take notice if you make enough noise.Just a personal view but in your position I'd get referred to Prof Dusheiko at the Royal Free or Prof Foster at Barts & London they have lots of  experience with difficult cases.You may have to push hard as your already on Tx.Dusheiko and Foster are the top bods in the UK (although I'm under Harrison at Kings),best of luck and don't take no for an answer.

[sfbaygirl]

Your Hgb is pretty low, how fast did it drop to 10? What was your base to start? You probably want to get your dr. to order procrit for you as it takes time to get and for it to work. I would do that ASAP.

The other important one to look at is absolute neutrofil count. If it is below 1. you need to talk to the dr. about Neupogen.

[Sweetie6852]

I don't know the neutrofil count but this is what she said
he red blood cell count was 3.34 yesterday and was 4.47 in march, hemoglobin 10.1 and 13.7 in march, hematocrit 29.9 and 40.2 in march. i hope this helps. i am in the process of dealing with aetna now, have made two calls already, about to make number 3, ordering procrit - you are significantly anemic.

[Sweetie6852]

The March test was the last one taken but I've just taken my 4th shot so it's been since Sept 1.  Procrit showing up on Monday or Tuesday - and yes I feel like a everything is climbing Mt Everest - Dr also prescribed prozac probably due to the dr visit long crying jag in the office.

[sfbaygirl]

Yes, you are anemic. Get the procrit. Your ANC is part of your WBC (white blood count). It should be on your CBC. Are you getting copies of all your labs? You should have them send them to you and keep track.

Since your Hgb took from March to Sept. to drop from 13+ to 10+ you  most likely haven't felt too droopy! I would get the procrit, you certainly don't want it to go any lower, if possible.

[sfbaygirl]

Ahhh! I don't remember when everyone starts etc. Dropping Hgb feels the worse when you drop so fast. Dr's who don't normally give Procrit until below 10 or 11, do so when you have a 2 pt. drop quickly. So you most likely had over a 2+ drop in Hgb in a couple of weeks. This sounds more like what happens during tx. I dropped 5 pts in the first couple weeks and felt like a zombie. You feeling like you are climbing Mt. Everest is how it feels when you are anemic. Get that procrit ASAP! My dr. gives me the shots, so I don't have to wait for scrips. When is yours coming? Your Hgb can continue going down while you wait, besides once you get it, it takes a few weeks to begin working. I would ask the dr. to give you weekly CBC's to watch these counts.

Take it easy (like you can do anything else!) the sx of anemia can be scary and really wear you out. Hope you get that Procrit soon!!!

[Sweetie6852]

Hi
supposed to be here this week - I will contact the Doctor if they don't come through soon - yes took another shot last night -feeling pretty weak right now.  thanks for the support.  Kyle

[sfbaygirl]

I always call the day after my shot, shot day cuz' that's when I get the effects.

That's good you are getting the procrit this week. If you feel any worse, chest pains, passing out etc. Go to the ER and get your CBC again to find out if it has dropped again. Hope you will make it okay. I did, but it wasn't pleasant, especially since it is the beginning of tx and you think it will always feel this way. It won't. Anemia is one of the worst sx, you will feel a lot better when those counts go up.

[tipiwoman]

Thankyou for the info and your great attitude, feel fortified by your words! Best of luck with your treatment!

[outofgas]

I live near philly when I go and give blood I fill out a form and they send me a copy within four days, never refused. I know when my doctor knows,if not it takes six weeks to find out results. demand them. (squeekie wheel gets oil) good luck

[FlGuy]

Thanks Jim!

[jmjm530]

Maybe they still have some leftovers.

http://www.hepatitisneighborhood.com/boards/ShowPost.aspx?PostID=78315

[jmjm530]

I didn't want to post this above, but like I said, NiceGuy is just following your insturctions :)-- See post C14.
http://www.medhelp.org/forums/hepatitis/messages/42943.html

BTW thanks for the nice words in PepiMacho's "Return of the Dragon" thread. Now only he's stop talking about the new drugs and post tx side effects. LOL.

Be well.

-- Jim

[jmjm530]

Good observation. Didn't realize that about the 2003 and 2002 archives. As a batch, I think they're better deleted than kept with question only and no responses. Seems to have no purpose that way. You seem to know MH better than I, maybe you should tell them to get rid of them, unless they can keep the responses intact.

Looks like we got another "drinking" thread going today :)

-- Jim

[cuteus]

you know, this morning I remembered something that happens in the archives here in MH. If you look at some of the threads in 2003 and all 2002, the only thing saved in those, is the firts post, none of the responses are there. So, a few yrs from now, someone will go to archives, maybe directed by a google search or on their own, see the title, open it, and all that is saved there is the concern and none of our responses. See what I mean? maybe she is right and the whole thing should banish from cyberspace?  I did not want to post this up there and make her feel worse. geesh!  I hate for it to remain, though.

[cuteus]

that's an idea!  why keep only the  questions?  
But the last time I contacted MH for threads related things was last yr, but this might be of benefit.  I will consider it, but knowing how I tend to procrastinate...