new member intro

I am shadowcptn, it's been my online id for nearly a decade. Hello everyone, so very glad to have found you all and to be posting here from my home today.

The past 30 years have been full of "mystery illnesses" ranging from mild to severe. The past five months have kept me home from both work and college with multiple pathological rib fractures, umbilical hernia, SBO, multiple cases of polynephritis, odd nail issues, scarring facial rashes, spider angiomas, severe bone and liver pain, large kidney stones, an awful mental fog, u name it.

I thought that I had cancer, and am still worried about it, but in January will have my liver biopsied due to my new physicians finding Hep C two weeks ago.

My liver enzymes are between 250 and 300, and my Hep C level is well over 2 million. I await further blood test results, as they are trying to determine the extent of my Hep C pre-biopsy. This is all I know about my Hep C, except that it has never been treated (even when I jaundiced), and that it was contracted exactly 30 years ago at the age of 12.

I am very glad to finally have moderate pain relief and a diagnosis that helped me to make sense of the multitude of issues my body has been enduring over the past few years.

I am very frightened that my Hep C has advanced to either cirrocus or liver cancer, or that my bipolar will get into the way of curing/treating my Hep C.

My story is much longer than this brief introduction, but I am very ill, and feel that time is of the essence. So I wanted to do the introduction before I end up back in the hospital with another severe issue. I've been very silent about my health issues, and even waited to go into the hospital with a SBO until 3 hours after Thanksgiving ended, to ensure everybody elses' holiday was enjoyable and not solely encompassing what I felt was yet another "mystery illness."

Thank you for reading my post. I have a female liver doctor at a top-rated university research hospital on January 11th. Until then, I remain treated for bipolar and severe pain through the same hospital.

My new fiance` is currently my sole caregiver, and he doesn't know how to use a computer (oddly enough I'm in the I.T. field), so won't be posting here, but also needs support. He had to quit his job when I did five months ago, and we do not know where to turn anymore (besides humbling ourselves to family) for simple things like food and gas money.

I look very forward to reading your stories, and thanks again for reading mine.

shadowcptn

Welcome Shadowcptn , I myself was diagnosed with Cirrhosis a few years back . I'm sure one of the mods will be around soon , It being the weekend it gets kinda slow in here .


A. Ziffle

shadow,
Welcome! I got Hep C at 14, but didn't find out for 45 years. A couple of things; no alcohol and lower your intake of salt. Generally, try eating fresh fruit and vegetables to maintain your health.

Welcome Shadow,
So sorry you had to look for such a forum. You are in good hands with our moderators and all those with lots of experience with Hep C and caregiving for Hep C.

My hubby just went to our local nursing home for a month while I, as caregiver, take a rest. He has Hep C and end stage liver failure from cirrohsis.

Diet is important. Stop all red meat if possible and cut back on salt. Hope the biopsy turns out well for you. Welcome.
Angie1953

DGinSD: Yes, i meant the real nasty kidney infection pyelonephritis. Had two severe cases of it last year and the former hospital I went to for care did not bother to find out the underlying cause. I don't have a clue why my ribs keep breaking or why I keep getting this scarring facial rash, but my new primary physician is hypothesizing most of my issues are due to a severely damaged liver. So yes, you got it, thank you for understanding my incorrect spelling/medical terminology. Yup, they are running blood tests to check for everything they possibly can to either correlate these issues or separate and treat them individually. Thank you again for your understanding... I really don't know what is going on, I'm just listening to what these teams of specialists are telling me and it's very scary and confusing.

My liver doctor appointment is for January 11th, and my coordinating physician is helping to order every blood test that they will need before my visit, so that my wait won't be very long to get biopsied and treated once I am actually seen. Or something like that... Again, this is all very confusing to me, but the doctors are all saying that the probability of all these issues stemming from my 30-year long untreated Hep C is very high.

As I'm able, I am looking for online SSI programs to help me and my fiance` with simple transportation costs back and forth to this large university medical center (which by the way does do liver transplants). If it turns out that I need a transplant or do have liver cancer or anything worse then Hep C, I will ask my family to help with a fundraiser or will ask the university that I'm a patient at for programs that they are aware of to offer temporary help. I am simply not comfortable having anybody other than my fiance` to help me in my own home to do simple tasks of showering, cooking, etc.

Dany, thanks again for your post & for understanding what I was trying to say.

I sincerely appreciate *each* of you for posting and the time it took each of you to read and reply to me. I'm scared and don't yet have any real life support groups to turn to, except for my bipolar.

Fortunate for me, the one liver doctor who told me they occasionally will not treat Hep C in bipolars actually came back to the hospital and apologized to me, explaining that the risk of suicide is high with Hep C treatment in bipolars. I assured him that I'm a fighter and not a quitter, and that I have an excellent psychiatrist that can and will verify my plight to live.

Thank you for you forum, guys. I've nowhere to turn while I await treatment and I'm grateful for the time each of you have given to me thus far.

~peace~

shadowcptn

Connie:

You are more than likely correct. The university hospital that I'm a patient at is giving me free care because I'm low income, disabled and on both federal and state insurance.

They are actually checking for lymph node cancer and just as soon as I give the word, will be checking for rib/bone cancer. I'm in excruciating pain and my ribs keep pathologically breaking within the same ribs, but various places within. I've also got a lung nodule that a pulmonologist will see me for on Thursday. However, my primary care doctor is assuming that they won't biopsy it due to its small size (5 mm) and the primary concern being my HCV.

The last time I had to go to the ER there is when I re-broke 4 ribs vomiting from a SBO (small bowel obstruction); this is when they found my chronic HCV (just after Thanksgiving). They broke initially back in late June from a simple cough, and I've just been sent for a bone density test. I'm too scared to be referred to a bone doctor, but if there is no rheumatoid osteoporosis, I will have no choice. I go see my hematologist in a few weeks to get the results of some blood work, checking for lymph node cancer without a biopsy.

The urologist I just saw wont even remove my large (1 cm), painful kidney stone or even look at the kidney cyst (also 1 cm) right now, sending me to a nephrologist instead... None of these doctors want to do any surgeries (lymph node biopsy, etc.) until the liver doctor can clear me for general anesthesia. It doesn't quite seem right to me that these other teams wont help me surgically unless an emergency arises (kidney stone blocks ureter, etc.) *until* the hepatologist figures out where I am at with my HCV, if it's advanced beyond that, etc.

Meanwhile, I can barely shower or walk. I've been like this for nearly 6 months, and am very tired. I thank God that I realized the local hospital wasn't helping me at all, and that I decided to become a patient at a large university research hospital that cares and actually seem to enjoy figuring out patients like me with multitudes of severe issues. The other local hospital was literally killing me with tylenol-based pain meds, and zero answers. I was actually beginning to believe that I was a hopeless, narcotic-seeking hypochondriac. I am so very grateful that I realized that my situation was bad enough for me to find and utilize this highly accredited medical facility. I'm very sick.

Connie, yes... You are correct. This isn't all based on HCV alone. However, it is my main issue and it seems like the rest of my body/life is "on hold" until I see my hepatologist on January 11th. Refusing a pain clinic until I have an official diagnosis(s), my primary care physician finally stepped in and is taking full charge of my pain control with merciful morphines (extended & immediate acting). She is fully aware of every issue that is going on, and knows that my HCV is being considered my primary issue until the hepatologist states otherwise.

Thanks to you guys, I am having my fiance` apply for LHEAP and SSI for now, until an official treatment starts and I'm in "official" need of an in-home caretaker (Assuming that multiple pathological rib fractures isn't reason enough, I assume that I need a diagnosis and/or to be under treatment for a disease other than pain control). He will start the process of applying for these things TODAY. I really appreciate the advice the few of you have given to me.

I feel like a moron, I should have not waited this long for quality medical care when we weren't getting anywhere after having to quit our jobs and my undergraduate studies (I'm an adult changing careers). I also should have known to apply for welfare, but I've never been poor (nor this sick) before, so this is all new to me.

So thanks again for the bits of advice and insight that you guys have provided to me as a newbie. This place is all I have for physical health issue support (for now) and I am so glad for the interaction, you have no idea.

God Bless,

shadowcptn

Shadow, you are very welcome. Don't beat yourself up for what you didn't do or know. You're on the right track now. I got help from LIHEAP once. You can only get it once every 13 mos. (at least here in FL) and usually have to have a double bill, though I didn't when I got it. Due to funds being stretched to the max with all service programs right now, there is less help available. But by all means apply for everything you can.

I, too, wasted 9 mos. (at Shands Jax.) after my initial diagnosis of liver cancer. The GI doc said there was nothing he could do and referred me to Oncology. I never did get an oncology appt. Had I waited any longer, I would not have been here to tell the tale. Instead, I went to Mayo and they saved my life (and now twice.) So I'm very glad that you are now in a place that will give you the care you need.

I can think of a couple of reasons why they don't want to address other issues until more is known about your HCV: Patients with hep C often have bleeding/clotting issues (bleed easily and have trouble clotting.) So any kind of invasive procedure may be complicated by bleeding and also leave you open to infection. If you do, indeed, have cancer, they won't want to operate unless absolutely necessary, because of the risk of the cancer spreading. I went through this, too, with my first bout with hepatocellular carcinoma (HCC.) I needed a hip revision and the ortho surgeon was very reluctant to do it...but finally agreed when the tumor had been shrunk.

After my recent transplant, I had terrific and unrelenting pain in my left lower thoracic/upper lumbar area. They thought at first that a rib had sustained a stress fracture from the rib lifter/spreader during surgery, but x-rays showed nothing. It took a month, but it finally went away. I also learned that my left lower lung had collapsed, so perhaps the pain was associated with that...don't know for sure. I've had broken ribs before and it's very painful. So I feel for you. I'm wondering if you ever took Prednisone for any of your medical problems. It can cause bone loss and fractures, as well as osteonecrosis (the bone disintegrates and implodes--what I had that required hip replacements, though not from Pred.)

When you are in chronic pain, each day feels like an eternity. But fortunately you now have pain management meds and your hepatology appt. will be here before you know it!

Hugs,
Connie

Dear fellow HCV supporters:

As it turns out, my SBO (small bowel obstruction) that led to the discovery of my chronic HCV, is a mass and is not scar tissue, as per the biopsy results.

My primary care physician called me personally yesterday to give me the news, and to refer me to the gastroenterologist she & I chose to care for this new finding. They will see me first thing tomorrow morning, to discuss treatment, and what my potential treatment options are. They will also apparently let me know if the biopsied mass is cancerous or not. I hope that they already know, and that they don't need to do a ton of additional blood work or scans or another biopsy to tell me if it is indeed cancer. However I'm sure they will need to do further tests to tell me exactly what type of mass it is - I Don't Know Yet.

As far as I'm aware, this has nothing to do with HCV, but I will find out first thing in the morning.

Thank you all for reading my post. Once I am told what is going on with my SBO, I will find the correct forum & post there instead of here in the HCV forum.

Happy Tuesday everyone!

<3 LG=lifeisgood <3

Good morning folks,

I had an appointment with my gastroenterologist on Wednesday, after receiving a phone call from my MD concerning blood work taken during my previous hospitalization for the SBO (small intestine partial bowel obstruction). Two blood tests pointed to something called a carcinoid. She asked me several questions, and realized that I had something they call "carcinoid syndrome." I had been doing fairly well since the SBO hospitalization, but by the time I had gotten to this doc appt. on Wednesday, I was found to be dehydrated from vomiting for the past two days & was immediately re-hospitalized for re-hydration and let go when I was able to stop vomiting by Friday (yay, it was a short stay). During this time, they ran a 24-hour urinalysis and more blood work to confirm or deny the presence of chemicals that only a carcinoid can produce. I do not know when the results of these tests will be back, but I have an appointment in 2 weeks with the gastroenterologist nonetheless. That doctor told me that if the tests she ordered confirmed a carcinoid, then they run one more test to locate this tiny tumor.

From the brochure the gastro doc gave me about carcinoid, if this is indeed one of the issues ailing me, it can affect (spread to) the liver. Now I'm really scared about further liver damage over and above my long-term, chronic, yet untreated HCV. So they mercifully gave me more valium so that my bipolar anxiety is reduced to a manageable level.

While I was in the hospital last week, my tender liver pain began (& has not stopped) radiating to the side of my ribs all of the way to the back, ending just before my mid spine. Does anybody else here have either sharp or dull pain like mine, or even just an extremely tender liver pain? If so, what's it from? Yes, three of my ribs broke just above my liver from merely coughing about 5 months ago, and a new ex ray showed them healing, except for a new one that just broke about 6 weeks ago (these are called pathological fractures; as I did not fall nor am being abused causing these fractures). During a DEXA bone density test, they did find osteopina, but that will be addressed separately next month.

I'm scared that my HCV is being heightened by either cirrosus (sp?), liver cancer or this potential carcinoid. When I see my hepatologist on January 11th, will they check for those two things automatically or do I need to request this additional testing?

Apparently the gastroenterologist will see me before the hepatologist will, so I am guessing my answers to this new potential issue of "carcinoid" will be answered first, I do not know.

Thank you all for letting me vent my concerns about my liver issues here. I do not know what I would do without this ability to share my concerns with people who share similar (if not exact) issues. Doctors can only listen, diagnose, and treat my disease and pain.

I plan on finding a real-life support group to attend regarding my HCV. The thing with that is, I'm barely able to tolerate riding in the car as a passenger due to pain & nausea. So it seems that I need to get healthier before I can even attempt finding such a support group, if one even exists.

Thanks again for reading my post. Any / all input will be greatly appreciated.

<3 LG=lifeisgood <3

Shadow, it's good to hear from you with the latest. Carcinoid syndrome is new to me, but I found a great resource for you:
http://www.carcinoid.org/ It's a foundation.

Check with Patient Relations at the hospital where you are being treated to inquire about support groups there. I know that a couple of hospitals here used to have HCV support groups.

Normally, liver cancer is caused by hep C and/or cirrhosis that develops into cancer. However, with a carcinoid, it can spread to the liver. Just try to focus on what they know for sure at the moment and don't let your imagination run wild. You have enough to deal with without adding "possible" problems to the mix. One thing at a time, one day at a time--and remember to breathe.

These days there is often not good communication between doctors, so I would definitely ask the hepatologist about running the tests you mentioned.

Please take good care of yourself and keep us updated on your progress.

Hugs,
Connie

Shadow, I felt a lot of the same things you are feeling when I was first diagnosed with hep C. First of all, after a life that had gone off track many times, due to alcohol and drug abuse, I was finally totally clean and sober (for 7 yrs. at that time) and had found a career I felt was really right for me, along with a job I loved. I had been married (a 2nd time) just under 4 years. I thought that all I had done in the late 60s up until Aug. 1, '86, was all behind me. So I was stunned to find out in '93 that I had hep C. I also felt "dirty," contaminated, as though I had AIDS (which thankfully I didn't and don't.) I went to my usual AA meeting that night and talked about it. I ended up experiencing all the stages of grief, though I did work through them fairly quickly.

Sharing my diagnosis and feelings about it at a meeting was the best thing I could've done. I found that there were several other people in that large group who had recently been diagnosed with HCV. I did make the mistake of telling the wrong people at work. These people (nurses) literally took a step back from me, as though they could catch the virus by being too close to me or breathing the same air. The only person I was really obligated to tell was the Nursing Director (I was a medical transcriptionist, not a nurse--no patient contact.) I also had a bad experience with my dentist's office. They treated me like a pariah and would only see me just before lunch, as I was told they had to sterilize the room and not use it for 2 hours after I was seen (a "bit" of overkill, and they announced this loudly through the little window so that everyone in the waiting room heard it.) I learned to be very careful about sharing my diagnosis and how.

I do think this is a very bad time for you to be in a new relationship. You are not able to really contribute to it because you must focus on yourself right now. I know that my husband became very bitter when I was only able to work P/T--because he had to take on more of the financial burden and work a lot harder than I was. The marriage broke up a year or so after my diagnosis. Illness puts a real strain on any relationship. Perhaps you need his help, but it really would be best to at least give him the option of bowing out before things get really rough.

I'm wondering if the liver pain is referred pain from your ribs. I say this because usually there is not liver pain, even when there is cancer. The most I experienced was a "twinge." I know that some here have said they have liver pain, but I believe it may be from pressure on nerves from an enlarged liver or from some other source. Dr. Melissa Palmer, in her book Hepatitis & Liver Disease, also states that "upper right quadrant (URQ) pain and tenderness are seldom experienced and may be related to gall stones or intestinal problems "as the right side of the large intestine lies in close vicinity to the liver." She does state that URQ pain can be a symptom of liver cancer--even though I didn't experience that.

As I said, stop yourself from imagining what it COULD be, but be sure to let the hepatologist know about the extent of the pain.

I applaud you for stopping all alcohol and drugs. Don't pick up again, no matter how much pain you are in or how much you feel you need relief. Your liver will thank you.

Hugs,
Connie

DGinSD: Ya, I keep telling my doctors (who ask) that my "liver pain" feels exactly like it did during the few days prior to my diseased gall bladder having been surgically removed back in 1998. Also, I've two spring-like "clips" that remain in or on the liver that the surgeon used during surgery that have caused sporadic issues since (they show up on a typical ex-ray and/or CT). Dunno if I should even bother mentioning that part to the hepatologist when I see her in January or not. I don't want to sound like a hypochondriac, I just want to be healthy & healed if at all humanly possible, smile.

So ya, you are totally right on regarding the type of pain being like a gall bladder issue, hooray! That's just one of the severe pains that I have in that area. I hope this don't sound twisted, but I'm actually glad they found another rib fracture, as I was getting *very* scared and worried that my liver-area was causing this much pain. Thanks to the kind folks on this forum, y'all tell me that HCV, cirrosus (SP?) nor even liver cancer causes much more than a "twinge," what a relief to know!

Also thanks to you guys, I'm staying away from all red meat & most all salt. Since my DX of HCV, I immediately decided to have no more Heineken or green, and am even cutting way back on the Marlboro's (nasty, stinky habit lol). Am drinking lots of water, non-acidic juices and taking it very easy, both mentally and physically, so that I can continue healing my ailments. Trying really hard to not focus on/mull over my ailments and staying focused on taking it easy. In my humble opinion, true healing beings in the mind. Well that and actually going to the follow-up appointments that are being made for me helps, also.

Thanks again for letting me vent, I don't feel comfortable talking about this stuff to family because they tend to over worry. It's the holidays, and the very last thing that I want is for them to worry about my health.

~peace~

<3 LG=lifeisgood <3

"...Also, since you no longer have a gall bladder, why would you have issues? It's not there, so it would seem that it couldn't be causing pain. (I don't have one, either..."

Connie: Exactly my point. I'm trying so hard to explain my non-rib "liver pain" to the doctors who ask, and that is all I can possibly think to tell them: That the pain is just like it felt during the few days prior to my gallbladder removal. I don't know what else to tell them, because the only other time my actual liver hurt is when my HCV made me turn yellow. At that time, I was skinny enough to be able to see it was sticking out beyond my ribs, and way back then I remember it was even hard. From what I'm reading, that would have been my "acute HCV" phase?

Last week while I was in the hospital for re-hydration, one of my "non-liver" doctors examining me was able to see that my liver was a bit swollen. That was the only time last week where I was actually able to lay perfectly flat (fractured pain prevents that position). Anyway, that same doc confirmed that my liver was also tender - LOL - I type "tender" mildly.

I'm also reading here that everyone's experience with HCV is unique to each individual. That is good to know. Though I will admit, I was hoping for everyone to have exactly the same symptoms so that I could figure out what's going on prior to my hepatology appointment LOL. Again, your kind words that you wrote to me saying not to worry about the "what if's" and to just to deal with everything day by day play a role in my new way of thinking. I really appreciate you sharing your experiences dealing with the various issues your own liver diseases created in your life. Thank you.

Hugs,

Liz