whew

I am really sick. That's it, just plain sick as hell. I've been sleeping, but there's almost a constant awareness that things in my body are horribly wrong, even in my sleep. I wake up feeling awful. It takes every ounce of my energy to get out of bed and I'm in terrible pain - even with the patch. I'm scheduled to go into the hospital on the 22nd, and when I asked my doctor what I was supposed to do between now and then, he said to drug myself to oblivion - just to stay as comfortable as possible. I've been doing that but it wears off, it lapses and mornings are just so darn difficult.

I've never felt more like I'm dying than I do now.

I used to wake up feeling lousy and have the ability to get up and push through it. Not anymore. I'm not depressed, I have things I am excited about, a great book I'm reading and God his here with me so close. I also have the best spouse in the world, but boy oh boy is this wearing him down and I can see it on his face and read it in his every movement. He's worried.

So, I'm basically a drugged up person with a serious disease that's progressing and probably have 1 or 2 new diseases to add that haven't yet been confirmed but are caused by my disease.

I'm afraid to be alone.

The Society of Those Who Have Suffered would understand. I'm just hoping to get through the week and up to our cabin. I love my home, but for some strange reason I feel better there. Maybe because it's in the woods and so serene.

If both suspected diagnoses are confirmed, there is treatment. My pile of daily medications is growing into a huge pile and more will be added. But I can't shake this body feeling of death. It's just all so sad for everyone around me.

Update. Not good.

My vacation was cut short due to an acute episode in which I became very ill. I experienced a sudden onset of a drenching sweat, dizziness, and palpitations (feeling of the heart beating weird) with an overwhelming feeling that I was going to pass out and die. My husband helped me crawl into the bed, where my heart continued to beat very slowly. Earlier in the day I'd felt feverish and was retaining fluid in my legs, arms and face. All were very puffy with pitting edema (fluid retention that is pronounced - when you push on the area it leaves a dent that takes a while to pop back to normal). I said goodbye to Bill and told him to make sure he told the kids how much I love them. Then I began to experience sudden, severe surges of adrenaline with shaking and extreme anxiety. After taking many meds it did calm down a bit but I still felt awful the next day and peed constantly.

I hadn't yet told my doctor about the petechiae in my legs, so I decided it was time to pay him a visit. The short version is that he thinks I have developed Addison's Disease (adrenal insufficiency) and he was alarmed when he palpated my abdomen to feel how enlarged my spleen had become. Addison's (President Kennedy had this disease altho it was kept quiet while he was President) could be caused from one of three ways in people with my history. The petechiae was most likely from low platelets.

I had a battery of blood tests and am going into the hospital on the 22nd for a bunch of in-depth studies to see what's going on. Today I learned that my platelet count is <100,000, which is right where a person would get petechiae. In the meantime, I am not supposed to drive except brief errands, no lifting over 10 lbs and not be alone for extended periods. And, I am supposed to rest as much as possible.

I will admit it has been a bit scary. It's all just a sign of advancing disease. I think I am handling it well emotionally and I am following doctor's orders.....but I'd appreciate a prayer and positive energy. Neither issues is minor for me or my family.

Illness Progression

Hello after a brief absence.! My return will be brief as I will be gone until June 5, but I wanted to provide you with an update. A recent trip was cut short due to the dramatic appearance of petechiae covering my legs. This developed after a 2-week period of increased activity.

Cirrhosis (often found in patients with advanced HCV) causes a low platelet count, also known as thrombocytopenia. Platelets are a type of blood cells which help form blood clots. If you have thrombocytopenia, you tend to bleed easily; bruises appear after a small bump and when you cut yourself, more bleeding occurs than in a healthy person. As HCV progresses, the liver becomes more cirrhotic - most of us know what a normal liver looks and feels like as we have seen them from chickens, etc. A person with cirrhosis has a somewhat shrunken liver that is rock-hard. This extensive liver damage causes a decrease in platelets AND also causes platelets to become malformed and unusable for clotting. When this occurs, petechiae can develop - most often on the legs and chest. The petechiae I have is confined to my lower legs and it's a big red flag to rest, rest, rest. I have to let my bone marrow do the hard work of making platelets, which requires good nutrition, sleep and being more sedentary. As this occurs, I find that I experience bone pain as well as becoming extremely tired; so tired I can't keep my eyes open and sleep a LOT.

So, that's the update for now. I did take a picture of my leg which is on the top right. That is what thrombocytopenia can do to a person with HCV. This is a fairly new development and is indicative of a decline in my condition.

How I feel when I wake up.....

This has been going on for a few months now. How I feel when I wake up. I'm wondering if other people with chronic illness or terminal disease share this experience.

I do not look forward to waking up in the morning. Regardless of how well/poorly I slept or dreamt, I wake up feeling awful. It's completely emotional and is not conscious thought.

I WAKE UP FEELING A TERRIBLE SENSE OF DOOM. I wake up very aware of my illness - the symptoms in my body are so obviously those of someone seriously ill. I find that I feel deep sadness that it's real; that I am sick, not getting better and may or may not have to struggle through the day. I become aware of my declining health and I feel an overwhelming sense of loss and sadness.

Once I'm up, I am fine. The feeling leaves. It sometimes lasts just a few seconds when I get moving and other times a few minutes, but never long. Is this normal? Do others feel this way?
Please tell me if you share these feelings; I must say it's awful.

Feeling okay while disease worsens

If you've been following my blog, you know that I've been feeling much better since I began using a fentanyl patch. And...while I am very grateful for the respite it has given me by improving my quality of life, I know my disease is getting worse.

I've developed a few new symptoms that are indicative of a failing liver. For one, I've been experiencing shortness of breath - especially in the evening. And, I have developed petechiae on my legs - caused by cirrhosis. Petechiae are "are pinpoint, round spots that appear on the skin as a result of bleeding under the skin" (Mayo Clinic). When you have a failing liver, your body is unable to produce enough platelets for your blood to clot properly. I bruise easily and my legs look scary! And last, I've been getting much more fatigued. I now find that I need at least 9 hours of sleep and I've been unable to keep my eyes open in the afternoon and often fall asleep where I sit. It's very weird, because I was a person who always got by on 6 hours of sleep and I could NEVER fall asleep unless I was lying down in bed. I couldn't sleep in the car, on a plane or in a recliner. But now I fall asleep sitting up!

The juxtaposition of feeling better with the knowledge that my disease is getting worse is confusing. I have to pace myself. One of my grown children had a minor emergency last week and I was happy I could drive there and help out for a couple of days, but the rest of the week had me down flat. I am just happy I'm feeling well enough to be able to help - something I could not do 6 months ago - but I am aware that I'm not getting better. It's a hard reality to face and I must make every day count, for I don't know when my liver will simply stop working altogether.

Hepatitis C and Fibromyalgia

First, Happy Nurses Day! To all my nursing colleagues out there, thanks for your tireless efforts on behalf of patients everywhere. Nursing is a demanding profession; heavy in the hard sciences and skillful in the art of working with human beings. You have my full respect and admiration!

One of my fellow Nurse Practitioners attended a conference about Fibromyalgia, one of those diseases that are very difficult to diagnose and understand. Lately, I've been having a lot more joint and muscle pain and I just thought it was because I've been more active. When you have HCV, it takes your muscles much longer to recover from strenuous activity, so I chalked it up to doing more. Then I spoke with Erin and I thought twice about the fibromyalgia connection. I've been reading up on it and it does make sense, pathophysiologically. Here is an excerpt from an article I found in Medline (from PubMed), for your reading pleasure:

Fibromyalgia, hepatitis C infection, and the cytokine connection.

Thompson ME, Barkhuizen A.

Source

Division of Arthritis and Rheumatic Diseases, Oregon Health & Science University, 3181 Sam Jackson Park Road OP-09, Portland, OR 97239, USA. thompsmo@ohsu.edu

Abstract

Fibromyalgia and chronic hepatitis C infection share many clinical features including prominent somatic complaints such as musculoskeletal pain and fatigue. There is a growing body of evidence supporting a link between cytokines and somatic complaints. This review discusses alterations of cytokines in fibromyalgia, including increased serum levels of interleukin (IL)-2, IL-2 receptor, IL-8, IL-1 receptor antagonist; increased IL-1 and IL-6 produced by stimulated peripheral blood mononuclear cell in patients with FM for longer than 2 years; increased gp130, which is a neutrophil cytokine transducing protein; increased soluble IL-6 receptor and soluble IL-1 receptor antagonist only in patients with fibromyalgia who are depressed; and IL-1 beta, IL-6, and TNF-a by reverse transcriptase-polymerase chain reaction in skin biopsies of some patients with fibromyalgia. In addition, this review describes the mechanism by which alterations in cytokines in fibromyalgia and chronic hepatitis C infection can produce hyperalgesia and other neurally mediated symptoms through the presence of cytokine receptors on glial cells and opiate receptors on lymphocytes and the influence of cytokines on the hypothalamus-pituitary-adrenal axis such as IL-1, IL-6, and TNF-a activating and IL-2 and IFN-a down-regulating the HPA axis, respectively. The association between chronic hepatitis C infection and fibromyalgia is discussed, including a description of key cytokine changes in chronic hepatitis C infection. Future studies are encouraged to further characterize these immunologic alterations with potential pathophysiologic and therapeutic implications.

Great News!

I saw my doctor for my regular checkup yesterday and for the first time since July, 2009 I DID NOT LOSE 1 POUND! I worked really hard watching my eating and making sure I drank a high-calorie supplement every day as my doctor recommended. When you have advanced liver disease, it's very difficult to keep weight on so this was great news and I felt good about reaching my goal. Before I was diagnosed I was overweight - moderatley so, and the treatment really packed on the pounds for me. I am a very active person, so lying in bed for months probably did not help. Some people lose weight on treatment and some gain. I was in the latter group.

I am still feeling remarkably well. Sitting in the arena watching my youngest son get his Master's Degree, I couldn't help but feel incredibly grateful for that moment. Who knew I'd live to see that day; I got a bit teary. I remember being diagnosed in January 2006 and beginning my first treatment right after he graduated from high school, hoping I'd live to see my youngest daughter graduate high school in 2009. My new goal is to live to see her to her college graduation. Each day is certainly a blessing and I never take it for granted like I used to. I find that I notice little things, enjoy the scent of a flower or the "thanks, Mom" so much more. Life is so rich and when you're healthy, you take so much more for granted. I was as guilty as anyone else.

Mother's Day is Sunday. There is simply nothing like a mother's love for her child. I think of Mary, who watched her son die on the cross. I think of the mother of Osama Bin Laden. I think of my own mother and grandmothers. And last, I think of how much I enjoy being a mother. My son posted this as his Facebook Status today:

One day is not enough to show the appreciation she deserves. To the most important lady in my life. I love you mom!

Nope, I didn't cry. I just looked upward with gratitude. I have so much to be thankful for! So much!