Woo-hoo (on one hand)...I've cleared screening and am approved to start tx. The nurse said the dr would like me to start asap and that enrollment is now closed. In setting a time to come in and start I mentioned I was scheduled to have an endoscope for varices with my regular (insurance paid) gastro due to chronic low platelets (low 80's now). I really wanted to do that given the risks of untreated varices and I currently have the insurance; however, the doctor running my trial felt it was optional/unnecessary at this time given numbers, other test results, history and lack of symptoms. He is leaving it up to me to do or not to do at this time, mainly for my own personal comfort level of "need to know". He was going to start tx without a thought to doing that at this time, and I can have it done after tx is in progress.
The issue is that waiting for the procedure and having the anesthetic will delay the start of tx and I want to start, esp since the initial phone call started with, "I just spoke with Dr. xxx and he wants you to start as soon as possible."
My trial dr's profile/reputation is in the world renowned class of HCV health care, treatment, research and studies, and I'm tending to want to skip the endoscope right now.
Any thoughts? Thanks.
Could you tell me what your condition was like prior to the burst (e.g, platelet count, cirrhosis stage if any, symptoms, or other indications)? Did you know you were vulnerable to a burst?
Must have been horrible! Knowing this possibility is why I opted to arrange the scope, but if the hep specialist is saying not necessary at this time I'd like to start my tx.
I was also thinking once I start tx and my counts get worse, change, and they would want to do one then. I don't know how many my insurance company will pay for that close together. The dr ordering it is not involved in my HCV care/trial.
My hepatlogist wanted me to get one when I had decompensated cirrhosis.
I refused, not sure why other than some intuitive belief.
My platelets were low~ 96.
As it is despite almost dying, I never had varicies, but many, many cirrhotic patients have them and some land up in bleeding in the ER.
I had an endoscopy before my surgery, no big deal.
Your point is relevant, Will, and that is the doctor's point, I have none of the things such as those you mention other than low platelet count (low 80s). I had a complete "work up", bp, clotting, EKG, abdominal cat scan, liver ultrasound, even an eye health exam, etc. I don't have any outward symptoms normally associated with low platelets (bleeding, easy bruising, etc.) either and my normal blood pressure is always on the lower side (80s/60s).
The nurse said the risk is usually in much lower counts, less than 40, but more often less than 10.
I'm really thinking of going with the specialist's recommendation, since as you say, he has the credentials. :) He's been conducting trials for years and I think he knows the risk factors; I don't think he'd put himself at risk of an iffy decision in lieu of his reputation. If he had any qualms they'd go on to the next person (of many) trying to get in the trial.
I just want to get going on this w/o delay, and I can always have it done later if tests and symptoms raise red flags.
Thanks for your input. I know it's not a question anyone can really answer for me, I have to make the call and I guess I'll go with the doc.
Hmmm. thinking about this one. No expert, but I landed in ER n was diagnosed by ascites n MRI. Grade 4/ stage 4. Bruised easily for years.
GP insisted on endo n I'm glad since they found asymptomatic varices and I was working out a lot. I'm on Nadolol 20 mg. I wasn't considered treatable so I didn't have your timeline to deal with. With hep, you'll end up making some tough calls. Advice here is helpful - and always positive twist.
I swear I rode my bike outside in triple digit weather n didn't even know I was sick.. Ascites drain at admittance was a couple of quarts? Liters? Don't remember. Just my experience if it helps.
The good news is I'm almost finished w tx and remain UND. So happy you get to treat. My best to you. This tx has worked for so many! Karen :)
Karen, thanks for your input. You point out another condition, ascites, which I was also screened for (I think that was partially what the abdominal cat scan was for?) and they said I was negative for that. I didn't even know what that was. I guess we learn a lot as we go through this, I didn't know about varices either. I just kept my fingers crossed as they checked for all of those things. I don't know my grade/stage yet, but I was told I my condition was not "advanced", whatever that means for sure.
Given my tests, I think I understand why the doc is not concerned about me getting the scope. As I said, he said if you want to, go ahead.
I really want to end my anxiety about what tx will really be like and just jump in!
What a blessing for your tx results! That is such good news. If you have time, let me know what your tx was, how long, how you felt through it, etc. BTW, what is the Nadolol for? The varices? Thanks and stay healthy!
That was explained to me at testing time....just happy to know I don't have it. What other things are there besides ascites and varices?!? Probably a whole list of things I've never heard of....and I'll just have to learn as I go. Good to know we can come to this site and find someone who can relate to almost every condition that results from HCV.
I have cirrhosis and the platelets, while I don't remember exactly, we're probably running around 100k. The bleed was 3 years ago. I get an EGD every six months now and there hasn't been any further indication of bleeding.
If you do not have decompensated cirrhosis you do not need to be concerned about things like ascites. Your doctor may have been extra careful.
You'll do the treatment, succeed and never have to learn about all the things that can happen when you have ESLD.
I had 2 massive esophageal bleeds in 1995. The second one was 2 months after the first and the reason for that bleed was absolute medical malpractice.
After the doctor got my varices under control by sclerosing them I went 5 years without incident. I did not have ascites, edema, red palms, spider nevi or extreme fatigue. I did have a low platelet count (can't remember how low) and I had a big spleen but I was feeling alright. In fact, had the transplant team not seen a lesion that they suspected was cancer, I wouldn't have gotten a liver - at least not when I did. Honestly, I was riding my motorcycle 2 days before I was transplanted with a vibrating beeper tucked down the front of my pants so I wasn't your regular decompensated patient. But I did lose 4 units of blood on 2 separate occasions 5 years previous to my surgery so it can happen without all of the typical attendant symptoms.
If I was in Faith's position I would get an endoscopic examination whenever I could just to get a look. Endoscopic exams are really not that big of a deal - I must have had at least 20 endoscopies. And they might just see something while they're looking around down there. I would think this procedure could be done while treating but I'm not real familiar with the contraindications to the newer treatments.
How did it come to light that you had ascites? Were there outward/tell tale symptoms or was it just randomly detected through another test of some sort?
Thanks for sharing your experience. That is one consideration that has crossed my mind, that a scope or other tests could be negative now (pre tx), but tx may rapidly or eventually change that status (i.e., conditions could develop due to tx).
Ascites was obvious - I blew up like a balloon and felt painfully bloated. I went to the hepatologist where they drained 3 liters of fluid. With the diuretics I haven't had a repeat incident in the last 12 weeks.
Seeing that tx can cause all kinds of odd reactions including increased enzymes, I guess it's not surprising that it could cause ascites. I'd never heard of it out side cirrhosis but there's tons of things I've never heard of.
Out of curiosity, what condition was your liver in when you began tx ?
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