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Author Topic: I Am Now Needing to Address Hepatitis C that I Got in 1988  (Read 19859 times)

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Offline marshajane

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I Am Now Needing to Address Hepatitis C that I Got in 1988
« on: August 22, 2015, 06:13:15 pm »
In 1988 I was in an awful accident, hit as a pedestrian by a bus. I received 24 units of blood. I spent almost a year in physical therapy as I returned to work and then went back to college. I'd had migraines before the accident so when the headaches returned, I didn't think much but within the next few years, the headaches had become chronic daily, and the quality of my life changed. I canceled plans. I spent money on various therapies.

At some point I was tested for hepatitis, maybe 15 years ago, and had 3 million plus (whatever that number is). I am Genotype 2.  I have spent so many days, nights, weekends in bed and vomiting with migraines. I've really suffered so when the thought of utilizing cures for hepatitis that would make me violently ill, I wasn't interested. (BTW, 99 percent of my doctors think the headaches have been caused by taking a big smack in the head in the accident. I didn't have brain damage but my jaws, nose and cheek were broken, in addition to broken lower extremities, ie., ribs, legs and pelvis.) PTSD fits in there somewhere.

In the last couple of years since I got Medicare, I have a good internist who mentioned that there are good drugs for hepatitis that shouldn't make me suffer so much. The headaches have almost gone away but I'm having some other problems that I don't know if they're connected to HCV. My feet and lower legs have gradually gotten more swollen over the last 15 years.

Here's my big question. I have some swollen lymph nodes in various places. The visible ones are around my chin and jaw. Some others are in my chest and pelvic area that showed up in CT scans. We are in the process of diagnosing these. I've read that these can be from HCV. I've read they can be part of Lymphoma. I've also read that HCV makes one more vulnerable to lymphoma. They could be caused by cat scratch fever, mononucleosis, and other "like" diseases.

Unfortunately, I didn't go see the contagious diseases doctor last year when my doctor sent me. I also had my gall bladder out last year, and I've been exhausted; I have trouble focusing. So it isn't total disregard for my internist's recommendation that kept me from going. I also had Shingles this year.

Has anyone here had "issues" with enlarged lymph glands? Is this a part of hepatitis? Or is my life about to become even more complicated? BTW, all this time my liver enzymes have been normal so few doctors look past these. I recently read that it's possible to have advanced cirrhosis and normal liver enzymes.

I recently went to the ER because I've been very anxious with pressure on my chest. My spleen is enlarged. I have a few other things going on that require me to address the hepatitis now. My internist has sent my relevant info to the hep C doctor. Hopefully, I can speak to her next week. I am also having a lymph gland aspirated by needle next week.

I have no idea how much my liver itself has been damaged. Hopefully, I can find out soon. I don't drink. I have taken pain medication through the years. I tend to eat too much sugar.

Now that these chronic headaches are almost gone, I'd love to have SOME quality life before I meet all my cats and dogs at Rainbow Bridge.

Can anyone enlighten me about enlarged lymph nodes and hepatitis C? Is there a correlation?

Thank you sooooooo much.

Offline KimInTheForest

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #1 on: August 22, 2015, 06:51:37 pm »
Hi marshajane, and welcome to the forums!

Yes there does seem to be a correlation between chronic HCV and enlarged lymph nodes, although that does not mean everyone with chronic HCV will experience that.  I have experienced chronically enlarged lymph nodes for years.

There is also a special type of lymphoma (B-cell non-Hodgkin's Lymphoma) that is associated with chronic HCV. The good news is that it disappears when the HCV is eliminated from the body, which is now possible.

It is also possible to have chronically enlarged lymph nodes that are related to HCV but do not develop into lymphoma. I have seen more than one article identify HCV as being both hepatotropic (affinity for liver tissue) and lymphotropic (affinity for lymph tissue).

Obviously you want to talk to your doctor about these things. But if it were me, I would try to resolve/cure the Hep C first and then see if there are still lymph node issues. But that's just my approach to things. I am not a doctor.

Keep us posted. :)

kim



Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline marshajane

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #2 on: August 23, 2015, 03:12:40 am »
Thanks, Kim.

I know that we can't predict the exact future but your comments make sense. I hope to get more feedback that is similar, if, in fact, someone has has similar experience.

I need to begin working with a HCV doctor right away so that I can avoid getting sent on a potential wild goose chase.

marsha

Offline KimInTheForest

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #3 on: August 23, 2015, 02:18:42 pm »
I need to begin working with a HCV doctor right away so that I can avoid getting sent on a potential wild goose chase.

Exactly, marsha. That's the problem with going to a doctor about lymph nodes and other HCV-related issues before treating the HCV. There could be a wild goose chase that may even involve unnecessary interventionist procedures or drugs. I have also found that most doctors have no knowledge at all about extra-hepatic manifestations of HCV and don't believe the things are related. Here is a list of such conditions/manifestations:

http://hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline marshajane

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #4 on: August 23, 2015, 06:49:12 pm »
Kim, thanks for the additional info. A couple things happened recently that made it necessary for me to take a proactive approach with the hepatitis. I'd been lagging because I do not have a large trust in doctors. I say this after suffering with headaches for 20 years. I would now say that there were several reasons for the headaches and that if I fixed four out of five things, I was still going to be sick. Some of this was outgrowing too much estrogen, etc. It was very difficult for me to address other things as long as I had head pain.

Last year I had my gall bladder removed. Now, I see that I could have had a liver biopsy at the same time. Bummer. Oh, well. Recently, I'd been bogged down by anxiety and chest pressure. I went to the ER to have an EKG and a chest x-ray. I've had swollen feet for many years, so the doctors did a d-dimer test on me to make sure there was no blood clot issue. The result of the d-dimer test showed that there was (or might be) a blood clot somewhere, and the ER staff scared the hell out of me by changing the direction of my visit to the ER entirely.

After doing my Google homework, I was sure my internist was going to put me on blood thinners when my platelets are almost nonexistent. Fortunately, my doctor is smart, and he said, "We're not putting you on blood thinners. You have an infection somewhere." I have some visible swollen lymph nodes on my chin/cheek and more swollen lymph nodes that show in my CT scans. My doctor sent me to an ENT doctor to get one of the neck nodes aspirated. Instead, the ENT doc sent me to have a CT scan of my neck and this week I'll have the lymph node aspirated.

When my Internist's office called to check the status of things, I requested that his office send my info to the hep c (contagious disease) doctor so that we could get that ball rolling. Plus, I didn't want someone telling me I have lymphoma without some kind of a cushion to fall back on.

I'm not fond of the ENT doctor, the one who is aspirating the lymph node on my chin. He isn't sensitive. Nor is he kind. He is condescending.  Hopefully, I can cut him out of the loop.

Here's some good news; lol. I thought these little swollen glands were the start of a double chin. I don't know if they will shrink eventually; I hope so.

I have been feeling extremely tired and crappy. On days that I feel better, I'll spend more time reading about the experiences of others here on this forum. It is really time for me to get away from my thoughts about MYSELF; LOL.

Thanks, again, Kim in the Forest

Offline marshajane

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #5 on: August 25, 2015, 05:42:58 pm »
Hi Kim,

I got a look at the test results from last week's CT scan of the lymph nodes on my chin. The outcome says, "Suspicious of lymphoma."

Tomorrow I see the ENT doctor who isn't a person who encourages me. He will probably do a needle biopsy (although I've read it's better to take more than an aspiration).  When it comes to my face, I want to be careful of the nerves and movement of the muscles.

I called my future HCV doctor today and left her a message. I haven't met her yet. My internist was supposed to send her my info. I'm sure a liver biopsy is coming down the road any day. I hope and pray that this new doctor has a full understanding of hep C and lymphoma.

Hopefully, my doctors know what they're doing. My internist is a fantastic diagnostitian. He is kind, but he goes straight by the book. I'm bummed at these test results.  :'(

Offline KimInTheForest

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #6 on: August 25, 2015, 06:16:27 pm »
Sorry to hear about the ''suspicious of lymphoma" outcome. But I have had doctors interpret MRIs and ultrasounds as being "suspicious" of all kinds of possible cancer for things that always turned out to be an enlarged lymph node in my case. Also, even if it is lymphoma, it may be a type that resolves itself once HCV is eliminated from the body, like B-cell non-Hodgkins lymphoma.

Ironically, just an hour ago I was talking to a friend who was telling me a woman came to her for help with a "tumour" (turned out to be lymphoma). And my friend,  who used to have a medical marijuana dispensary, gave her a home-made cannabis paste. The woman is applying it externally and taking a small amount orally each day. And the tumour is almost gone. At least that's what I was told. Given my own experience with chronically enlarged lymph nodes related to HCV, I know they can change size a lot. And they aren't tumours. So whether this woman had a medically diagnosed lymphoma tumour or simply an enlarged lymph node she was mistaking for a tumour, I don't know. But if I were told I had lymphoma, I would certain be trying MM for it first.

Do keep us posted on what you learn, Marsha. And good luck! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline marshajane

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #7 on: August 25, 2015, 10:47:24 pm »
 This sounds like a good idea except that MM makes me paranoid. And I don't need anything to add to my negativity right now.  :-\

 However, maybe there is something else I can use to shrink these. I  still have internal ones that showed up first but they are probably all caused by the same thing.

I'm still open to more suggestions.

Offline Tess1971

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #8 on: August 27, 2015, 10:43:02 pm »
I have enlarged lymph nodes as well as glands on my neck.  They are only now VERY gradually getting smaller since treatment.  It is a slow process it seems.  I also have always had liver functions tests in the normal range and had my gallbladder removed a few years ago.  I did not want a biopsy and to this day have never had one.  I acquired hepc in 1971 when it was nonAnonB.

Offline marshajane

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #9 on: August 27, 2015, 10:54:18 pm »
Thanks, Tess. Your feedback is helpful.

My doctors are freaking out about these swollen lymph nodes. They don't see a correlation between HVC and swollen lymph nodes. I don't think they'll want to wait it out. They'll want to treat the lymph nodes first.

What kind of stand did your doctors take, Tess and Kim?

Offline KimInTheForest

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #10 on: August 27, 2015, 11:49:50 pm »
What kind of stand did your doctors take, Tess and Kim?

My doctors actually never seemed too concerned about any of my enlarged lymph nodes once a radiologist confirmed in each case that it was a lymph node not something else run amok. However, they might have been more concerned if they knew or believed there was a link between HCV and lymphoma.

I was reading about lymph node aspiration and how that is not particularly useful for diagnosing lymphoma. And I would not want a lymph node biopsied at this stage. But that's because I believe I should give my body and lymphatic system a chance to adapt to life post-HCV (assuming I am lucky enough to achieve that status) and see if my lymph nodes go back to normal on their own. Not all cases of lymph node swelling are lymphoma. In fact most aren't.

I have also read that chronically enlarged lymph nodes, whatever the original reason for their enlargement, may always remain enlarged even when the reason has been eliminated.

Maybe ask your doctors what tests they could do to look for (or rule out) lymphoma short of an actual biopsy.

kim
« Last Edit: August 28, 2015, 01:31:34 am by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Tess1971

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #11 on: August 28, 2015, 11:28:47 am »
Sometimes I think lumps and bumps etc can also be just a part of aging……..lol
Our bodies take longer to correct and/or bounce back from even some little things as it ages - just a part of life, ha!

Offline KimInTheForest

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #12 on: August 28, 2015, 12:48:19 pm »
I have enlarged lymph nodes as well as glands on my neck.  They are only now VERY gradually getting smaller since treatment.  It is a slow process it seems. 

How long did that take, Tess, for your lymph nodes to begin getting smaller? You're now 6 months post-tx, right?

best,
kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Tess1971

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #13 on: August 28, 2015, 08:05:15 pm »
Closer to 10 months post treatment.  I finished treatment 11/15/14 and I am only now seeing my skin getting back to normal and the itching and rashes resolving.  Same for the nodes.  I am not a doctor person so I tend to try and allow things to resolve themselves and seek medical only if they do not or worsen.  I live in a medical town so I am guarded not to let the medical establishment overly poke and prod at me……..I am considered a tough patient, lol.  I have had pages of blood work though testing for every thing you can think of prior to treatment and post treatment and all is good.  I got though treatment without getting anemia and I do eat extremely healthy (mostly organic and NO red meat or port).

Offline KimInTheForest

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #14 on: August 28, 2015, 08:15:13 pm »
Helps me to know this, Tess. I won't be so impatient with my own 'slow' recovery, since I am not even 5 weeks post-tx yet.

kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Tess1971

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #15 on: August 28, 2015, 08:34:44 pm »
It has been really rough at times.  1 month post treatment I was feeling great and itching and rashes were getting better, but, then it would start again.  It was like for every time I started really feeling good I would start feeling crummy again.  Up and down, on and off, it has been that way ongoing.  Super sensitivity to everything outside this summer especially my skin and the heat.  Even foods I have always ate started to bother me etc.  Told doctor and he did not seem to be surprised and his response was "at least you did not get anemic"  Yowsers!!  lol   so I guess that means that the meds were well tolerated in his eyes.  Histamines going wild is what it is and I am a person who did not have any of this prior.  I still on occasion take 10 mg H2 blocker if my stomach gets sensitive (which it did towards end of treatment) and it even helped the itching.  They just tell me to take antihistamines when the hives keep coming back so I got tired of that since the Atarax was debilitating so I found a homeopathic topical that worked well and still use it on and off.

Offline marshajane

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #16 on: September 11, 2015, 06:00:45 am »
Tess, I tend to feel pressured by my doctors about treatments I don't want. Everyone who looks at my file wants me taking heavy-duty shots for osteoporosis. I think they're scary. Plus, once I can quit being sick, I can move around a lot.

I think it's funny that a doctor will label a treatment EASY when he isn't the one who is taking it. I had Shingles last year and the antiviral meds for Shingles are horrible. I stopped the meds and used some colloidal silver and some other things. The pharmacist had also told me that the shingles antiviral was an easy ride.

I had my gall bladder out last year also. I think that was a mistake but I will never know for sure.

My dad (may he rest in peace) and I have tried to remember this saying: Two steps forward, one step back, one step forward, two steps back. Recovery is rarely in a straight line. When you're feeling like you're going backwards, you are not.

How are you feeling?


Offline Tess1971

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Re: I Am Now Needing to Address Hepatitis C that I Got in 1988
« Reply #17 on: September 12, 2015, 10:30:45 pm »
I am feeling better as the weather changes also……….hot weather has become something I dread now.  I have gone back to eating even less meat and drinking one of my protein shakes a few times a week also and really feel better.  Only medication I take is half a diuretic in morning to keep blood pressure down.
I tried a number of years ago taking something for bones that gyn pushed and it was awful after a few months so I stopped.  Now I find out it can cause thigh bone fractures, gheeeeeeee!  I am one of those that avoids drs and wellness visits. LOL  Sometimes I think some doctors have so many patients that they move them along by just following their guidelines and medicating and move to the next. 
As for post treatment it is a slow road back but I do feel better and better. Rashes subsided and are minor now.  I think the vitamins I have been doing last three months are helping along with my shakes.

 


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