Sandi's Tests/Results/Updates

Sandi and Hubby in Port Perry, Ontario (May 10, 2008)

Sandi's Story (Originally written 1997)

I update my story in the tables below, after my doctor appointments
or any hepatitis C-related issue.

Date

Tests/Results/Updates
Sept.21/95 AST-38U/L (normal 1-35), ALK.PHOS. 41U/L (normal 20-90)
Oct. 30/95 Blood/urine tests - liver enzymes were normal.
Nov. 6/95 Abdominal ultrasound.
Dec.11/95 Blood/urine tests - Gastroenterologist said I had mild inflammation of the liver, liver functions at 90%. AST-27 (normal range 8-31U/L), ALT-25 (6-30U/L)
Apr.15/96 Blood/urine tests- Gastroenterologist said I'll die of something else before I succumb to Chronic Hepatitis C- nothing to worry about. AST-31 (8-31U/L), ALT-33 (6-30U/L)
Oct. 7/96 Tested  positive for circulating hepatitis-C viral RNA.
AST-35 (8-31U/L), ALT-36 (6-30U/L)
Oct. 30/96 Ultrasound/blood sample for upcoming biopsy.
Nov. 5/96 Biopsy- I fainted twice just as the nurse was trying to put in the intravenous needle. I tend to have low blood pressure. However, the patient in the next bed to me was a shackled prisoner guarded by two armed officers. No wonder I fainted! The biopsy went fine after all that. The Dr. gave me codeine for pain but I didn't really need it. I was told the results would be ready in two weeks.
Nov.19/96 Results from biopsy not back yet-My spouse took time off work as usual to accompany me and learn about HCV- what a waste of a day!-now I have to wait until Jan. 28/97 for the outcome.
Jan. 28/97 A long time to wait to get biopsy results! Enzymes up a bit - could have been because of all the worry about biopsy results. Mild inflammatory activity, but no cirrhosis and no fibrosis (scarring of liver tissue). Gastroenterologist doesn't wish to put me on Interferon - my condition is mild (no scarring, low liver enzymes and asymptomatic). It's better to wait until Interferon/Ribavirin combo becomes available - better overall response. AST-41 (8-31U/L), ALT-48 (6-30U/L)
June 27/97 My enzymes have remained elevated 1-1/2 times above normal for more than six mths. Gastroenterologist wants to start the combo IFN/Ribavirin Oct. 7/97. AST-34 (8-31U/L), ALT-40 (6-30U/L)
July 30/97 YO-YO decision: Phone call at home from nurse who informs me that the Clinic Director feels my mild case of HCV would not benefit from the combo trtmt. at this time-next appt. Oct. 14/97. Increased risk of thyroid and arthritic problems with treatment. My gastro was away for four months and therefore, I was referred to his boss- an expert in Hepatitis.
Oct. 14/97 I met with the Liver Clinic Director/Hepatologist (a specialist in diseases of the liver). He informed me that the Grade (gradient of inflammation) of my previous biopsy was 5/18 and the Stage was 0/6. The Knodell inflammatory score is a numerical scoring system (0-18) that grades the degree of inflammation in liver biopsies, and the Ishak fibrosis score (0-6) is a scoring system that stages the degree of fibrosis in liver biopsies. Checking for rheumatoid factor in my blood.  If ALT remains above 45, within 2-3 years another biopsy and possible inclusion in IFN/Ribavirin combination or other future, improved therapy. Hepatologist wants my ALT, AST, Bilirubin and Gamma g.t. to be checked by my GP once a month until next scheduled visit Feb. 17/98 with him. Blood test results: AST-31 (8-31U/L), ALT-33 (6-30U/L), GGTP-23 (7-33U/L). Rheumatoid factor-Positive 80. Tested for HBV, I am positive, but I'm immune to it. The nurse at the clinic said I was negative for HAV.  It is known that treatment with anti-viral therapy Interferon for patients with low ALT is not very successful and  therefore the clinic decided to follow me for another four months, bring the LFT results in February and decide then whether to treat me or not.
Nov. 14/97 AST-35 (normal 1-35U/L), GGTP-13 (normal <22), Bilirubin 21 umol/L (2-21).  Family doctor tested for ALK. PHOS-47 (normal up to 105 U/L) instead of ALT.
Dec. 16/97 LFT's: AST- 38 (1-35), ALT- 37 (1-40U/L), ALK.PHOS.- 49U/L (20-90), Bilirubin- 25 umol/L (2-21), GGTP- 11U/L (<22).
Jan. 16/98 LFT's: AST- 33 (1-35), ALT-34 (1-40), ALK.PHOS.- 43U/L (20-90), Bilirubin-20 umol/L (2-21), GGTP-12U/L (<22).
Feb.17/98 The hep doc now says that ALT/AST tests are not the best indicator of progression of the disease, but the viral load is. ( I've known this for three years from research on the net.  Of course, in Canada, PCR viral load and genotype testing are not routinely done, unless you are in a study.$$) He stated there is still controversy regarding borderline cases like mine whether to treat me or not.   I said the reason my liver enzymes were elevated the highest in Jan. /97, was stress-related, from waiting almost three months for biopsy results!  He responded by saying it was probably related to alcohol consumption.  What the *#*!!  I haven't had any alcohol since Dec.5/95.  When I showed the article recommending the HAV Vaccine for HCV chronic liver sufferers,  he shrugged it off because I am not travelling or living in an area where HAV is predominant.  I suspect his indifference to me is related to his belief that IVD users contaminated the blood system in the first place.  He spent half of my appointment time on the phone with another patient.  All I ask for is fair treatment, honesty and respect in my dealings with the medical community.   My next appt. is Aug. 18/98 and supposedly I'll know then if it is advisable to go on the combo treatment or not.  With all this indecision, there are days I wish I never knew I had HCV-life was so simple then. ALT 44 (normal up to 30), AST 35 (normal up to 31), GGTP 20 (normal <22), ALK. PHOS 81 (normal 20-90).
May 26/98 I went to my family doctor to get a HAV vaccine. The cost was $64.73 which was covered 90% by my spouse's medical plan. I did have a slight headache later. I will have the second shot of the vaccine administered in six mths. to a year.  At this point, the vaccine should give me ten yrs. immunity against Hep A.
July 23/98 I have cancelled my August appt. with my T.O. hep doctor. I went to my family doctor to get a referral to a fellow hepper's recommended hepatologist in Durham Region.  I received past copies of my doctors' correspondence.  In summary, it states that " Patient  belongs to a subgroup of patients who have very mildly elevated transaminases (mostly less than 1.5 X the upper limits of normal). The liver biopsy shows only mild inflammatory activity and no cirrhosis, and therefore we can afford to postpone therapy if indicated. Treatment in the future will be given to patients irrespective of the ALT as soon as we will be able to measure quantitatively the viral load."  I am offline for the month of August due to moving from Toronto to Whitby (pop. 74,000~1/2 hour east of Toronto).
Nov.16/98 LFT's:  AST- 37 (Normal 5-40), ALT-36 (5-40), ALK. PHOS.- 63 (30-120).  The new hepatologist here says that once the combo is available, he will be putting mild cases like mine on the drugs.  I told him I did not wish to go on treatment.  He said that people with normal enzymes can still get cirrhosis. Recently, I read a medical abstract of people with normal enzymes were given IFN, and 2/3 of them actually had their liver enzymes increase. 
May 6/99 I had my annual flu shot Jan. 9/99. In May, I saw my hepatologist-he feels because of my mild case-(Stage 0, no cirrhosis on biopsy and consistent normal enzymes), I would not benefit from Rebetron (the combo).  Blood work will include testing for genotype and quantitative viral load-results in a month.  Next appt. in six mths.  AST 41 (10-40), ALT 48 (5-40), Albumin 42 (35-50) and Bilirubin 17.
July 14/99 I got my second booster for HAV vaccine on May 26/99.  I contacted my hepatologist's office who informed me that my genotype and viral load testing were not done by the local medical laboratory because I am not going on treatment.
Nov. 5/99 Annual flu shot on Oct. 21/99. Appt. with my hepatologist. ALT tested. Trying again to get genotype and viral load testing done.
Nov.29/99 I'm 1a genotype which is one of the strains, besides 1b, that is less responsive to treatment and the most common genotype for heppers in North America.   My viral load is 3.10 X 10 to the power of 6 which means 3 million, one hundred thousand. My ALT was 48. My hepatologist wants me to come back in to have the ALT done again. I'm asymptomatic and my biopsy three years ago was Stage 0, mild inflammation, no fibrosis. Over the past four years, my liver enzymes have been mostly normal, three different occasions slightly elevated with ALT at 48 (normal range 5-40). Disease activity: Mild (ALT normal or <2 times upper limit).  "Combination therapy may improve response rates and reduce relapse rates in transient responders.  It is not clear whether poor responders-that is, patients with "high levels of viraemia and genotype 1"-will respond well to this combination."
May 17/00
 At my hepatologist's semi-annual checkup on May 15th,  he said my recent pain was normal abdominal contraction pressure and nothing to be concerned about after doing a physical examination.  He is still waiting for study results on the combo of patients with normal enzymes. At this time, he doesn't suggest I go on treatment, since I have no fibrosis.
May 23/00
 Blood tests results are all in the normal range:  ALT is 29, AST is 27, Albumin is 49, ALK. PHOS. is 63, GGTP is 16 and Platelets are 371 (150-450).
Nov. 28/00 Flu shot on Oct. 21/00.  My November test results:  ALT:  44, AST:  34 (normal range 5-42)
June 7/01
 My May, 7, 2001 test results:  ALT:  77 (normal range 5-55), AST:  52 (normal range 5-45), Bilirubin 13, ALK. PHOS. is 81, Hemoglobin is 129. Disease activity: Mild (ALT normal or <2 times upper limit)  The test was done at a different lab. 
Oct. 13/01 My website is featured as "Our Favourite Sites" in an article titled "World Wide (Hep) Web" of the November/December issue of the Hepatitis Magazine. A special thanks to my dear husband who encouraged me to make this first public presence in this international magazine. 
Nov. 5/01
My family and I have moved to Oshawa, Ontario which is situated ~ 45 minutes east of  Toronto. 
Dec. 4/01

 

 Test results from Nov. 30th:  ALT 31, AST 37 (normal). In my particular case, I am lucky to have not succumbed to the possible ravages of this insidious disease. With good living, positive thinking and support from my family and friends, I continue to battle "the dragon".
Mar. 1/02

 

 I will be speaking on a panel along with two other patients-one with HIV, one with HCV/HIV and myself as a person living with HCV at  "Opening Doors".  This is a day conference focusing on AIDS/HIV, HCV and co-infection HIV/HCV in Oshawa, Ontario on Wed. March 6, 2002.  This will be my first public (face to face) debut on Hepatitis C awareness at a conference.

Through my proclamation request to the Regional Chair for Durham, May 1st, 2002 was declared officially
Hepatitis C Awareness Day for ALL of Durham Region (pop. ~500,000).  Activities planned for May: I have been asked by the principal of my son's new school to do a presentation on Hepatitis C, coinciding with the Gr. 7's Hepatitis B immunization shots scheduled for April 30th. In conjunction with the Ontario Curriculum Healthy Living: Growth and Development program, I will be involved in educating the Gr. 7 & 8 students about Hepatitis C. On May 5th 10:00 a.m. -11:00 a.m. the Parish nurse at St. Mark's will read a Wellness Minute that I wrote to commemorate all those people infected with or affected by Hepatitis C.
June 11/02 All bloodwork from my June 3rd appt. is normal.  ALT:  35 (normal range 5-42), AST:  29 (normal range 10-40), ALK. PHOS. is 61 (normal 42-120), Hemoglobin is 126 (120-160), WBC count 5.7 (normal 4.0-11.0), Cholesterol 4.51 (normal < 5.2), Triglyceride .70 (normal 0.60-2.6), T.S.H. (Thyroid) 1.83 (normal .35-5.00).
Sept. 19/02 I am featured in an article titled "Mind and Body Connections: Your fight against hepatitis C can be eased if you keep a positive outlook toward your life with the virus," in the Sept./Oct. 2002 issue of the international Hepatitis Magazine.
Nov. 6/02 I got my yearly flu shot when I went for my physical check up at the family dr. on Monday. I will get some routine blood work done this weekend.  I requested a BMD (bone mineral density) test this month since both my mom and older sister have RA.  My 88 yr. old mom was in severe pain from osteoporosis and had successful hip replacement surgery this past Oct. 

Since my Grandfather (father's side) died from intestinal cancer and in Dec. 2002 one of my five older brothers will be having a portion of his colon (large bowel) removed due to a cancerous polyp, I will be discussing the need for CRC screening with my hepatologist.  One of my relatives on my mother's side had colon cancer (95% cured through surgery-6 yrs. later he is still cancer free).  Therefore, being genetically predisposed on both sides of my family, it is better to be checked. Everyone after age 50 should have a colon examination!

Jan. 13/03 I have an appt. with a new gynaecologist for Feb. 7th.  I need to go back to the family dr. to get test results and get a pneumonia vaccine (five year protection), and book an appointment with my hepatologist.
Feb. 3/03 All test results appear normal.   AST 28 (normal range <31), ALK PHOS. 82 (normal 35-104), Bilirubin 17, Hemoglobin is 135 (120-160), Cholesterol 5.01 (normal < 5.2), Triglyceride .87 (normal 0.60-2.6) Platelets are 433 (150-450).   My BMD test was normal.  I got my pneumonia shot today. I am not taking any extra supplements.
Apr. 15/03 All bloodwork from my Apr. 4th appt. is in the normal range. ALT 32, AST 30 and ALK PHOS. 70.  The only supplements my hepatologist advises are calcium and a multi-vitamin without Iron .
May 20/03 Preparation for the colonoscopy test started Thurs. May 15th- Clear fluids only, no solids.  Three Ducolax tabs at 4 p.m.  Three Motilium tabs at 5:45 p.m.  One 45 ml Phosphates sol'n mixed with gingerale at 6:00 p.m.  I vomited after the first glass of water, then drank two gl. gingerale.  The day of the procedure I took three Motilium tabs at 5:45 a.m. 2 bottles 300 mg. Magnesium Citrate at 6:00 a.m. (Vomited after second bottle) 30 min. later I had a cup of water and a cup of tea.  1 p.m. at the hospital, I was sedated for the test, woke up later and it was over. So the preparation is worse than the test itself.   Results:  Normal colon.  Only the Motilium tablets were covered by our drug plan.
Oct. 23/03 The Hepatitis A Vaccine is now funded by the Ontario gov't for hepatitis C sufferers.
Dec. 2/03 I got my yearly flu shot this past Wed.  Blood test results from my hepatologist appt. on Nov. 24th are all normal:  ALT is 35, AST is 33. Alk Phosphate is 83.
Mar. 19/04 I am speaking re: Community Group Development:  Successes and Challenges at the 2nd Canadian Conference on Hepatitis C in Vancouver, B.C. Mar. 27-30, 2004.  I will moderate the session on Nutrition, Exercise and Complementary Alternative Medicine as well.
Hepatitis C: Nutrition Care - Canadian Guidelines for Health Care Providers
 
Apr. 24/04 My spouse and I recently celebrated 20 yrs. together.  He remains negative for Hep C.
Aug. 17/04 Test results from July 26/04. ALT is 37 (5-42);  AST is 35 (10-40);  Bilirubin is 15 (up to 22) and Alk Phosphate is 82 (42-120) I am now 48 yrs. old and remain a naive patient (no conventional treatment -yet). 
Oct. 10/04 I attended a meeting Aug. 26th in T.O. for Ontario based Hepatitis C Organizations with hopes to see collaboration of information and support. 
Oct. 20/04 My spouse's older brother (only 52 yrs. old) diagnosed in 2001 with hep c stage 3/4 cirrhosis, died this morning from stage IV renal cell carcinoma- (kidney tumours spread throughout his body). 
Dec.2004 Yearly flu shot on Nov. 5th. I contributed to a discussion article "It's Good to Talk:  Support groups are a critical part of medical management" in the Oct-Dec. 2004 issue of the Hepatitis Magazine.  On Dec. 3rd, I attended  an Ontario Hepatitis C Capacity Building Workshop in T.O.
Aug. 25/05 I saw my hepatologist on Aug. 24th.  We discussed spider nevi which is an indication of hepatic fibrosis. A physical showed no obvious signs.  I am booked for an ultrasound for Oct. 13th, just to see if any relevant changes.  Bloodwork done on the 25th.  It has been 10 yrs. since my diagnosis and 'the dragon' is sleeping quietly.  My 1996 biopsy was stage 0.
Sept. 8/05 All normal test results: AST 36, ALT 42, ALK PHOS. 76, Platelets 425, WBC 6.4, Hemoglobin 129.
Nov. 21/05 Ultrasound test results are normal.  I got my yearly flu shot at one of the Durham Region Health Department community flu vaccination clinics. 
June 1/06 May 31st appt. with the hep dr. I will be scheduled for bloodwork, a guided ultrasound and another biopsy.  Subsequent results (if significant fibrosis is present) will determine whether to proceed with conventional treatment or not.
June 26/06 My ultrasound and biopsy are booked for July 24th with prior bloodwork on July 20th at Lakeridge Health Oshawa Hospital.
July 28/06 My Hepatologist's nurse called to give me my biopsy results-Grade 1 inflammation, Stage 1 fibrosis.  Doctor will continue to monitor my LFT's regularly, but at this time, we will curtail starting conventional treatment.  Next appt. within 6 mths. time.
Nov. 1/06 At my gynaecologist appt. she agreed I should re-start a calcium/vitamin D supplement for my achy joints.  I also plan to lift small weights for building strength in my wrists/arms and use our manual treadmill during the winter months.
Nov. 17/06 I got my yearly flu shot.  I have a requisition from the family dr. to get full blood workup done/physical in 2007.
Jan. 12/07 Booked appt. for physical on Jan. 31st. and blood test results from Jan. 5, 2007.
Feb. 1/07 I have been very sick with a bout of bronchitis (first time)  for several weeks. Just finished antibiotics -still coughing- but feel more energetic than I did.  My physical on Wed. went well-all bloodwork is good. Since I am 50 now, I am booked for a mammogram for Mar. 22nd. My hepatologist receives test result copies from my family dr.
Apr. 2/07 X-Ray results showed no breast cancer.  The radiologist has recommended I go yearly for a mammogram.  I gave the OBSP staff HCV awareness pins and Hep C info materials which they appreciated.
May 22/07
Participants were invited to Peterborough from Central East LIN for a community consultation meeting sponsored by the Ont. Ministry of Health Hepatitis C Secretariat and PHAC. Thirteen consultations are being held across the province to evaluate hepatitis C resources.
July 18/07 Hepatitis C educational materials were available during two local events: South Oshawa Community Day, Sat. June 16th and Canada Day Celebrations, Lakeview Park, Oshawa, Sun. July 1st.
Aug. 24/07 Teleconference call on a mini strategy on Hep C to identify key needs and prioritize them, determining what is needed immediately in the Central East community (Durham Region, Simcoe County, City of Kawartha Lakes and the Counties of Haliburton, Northumberland and Peterborough )
Oct. 24/07 I do see wait times are getting longer to get into see liver specialists-it used to be for me 2 mths. just for the routine check-up. I just called today and I have an appt. Jan. 16, 2008 with my hepatologist.
Nov. 1/07  I went to the Oshawa Centre and got my yearly flu shot. 
Jan. 16/08 I went to the hepatologist-sent for bloodwork at the lab. 
Jan. 24/08 All bloodwork is normal.  ALT is 37, AST is 34, ALK. PHOS. is 73, Hemoglobin is 137, WBC count 5.7, T.S.H. (Thyroid) is 1.34, Albumin is 48,  and Platelets are 423.
Mar. 1/08 My 94 yr. old mom has died from cardiomyopathy due to a heart attack on Feb. 1st.  Please keep my family in your thoughts and prayers.
Mar. 14/08 I spoke in Port Perry, Ont. at a Hep C training workshop for service providers who work with people living with Hep C in the Central East Region (Durham Region, Peterborough, Kawartha Lakes and Haliburton).   This opportunity was co-ordinated by the Canadian AIDS Treatment Information Exchange and AIDS Durham.  Durham Region was the first stop on CATIE's HCV workshop series road trip across Ontario.  Lunch was provided by the HIV/AIDS program at Scugog Island First Nation Health and Resource Centre. 
Mar. 17/08 I go yearly for a mammogram which is booked for Wed at the OBSP clinic at Oshawa Hospital.
Apr. 2/08 Normal results for breast exam.

There is always Hope,

Email Smilin' Sandi in Durham Region, Ontario, Canada
Fellow Hepper/Webmaster of "Sandi's Crusade Against Hepatitis C"
Founder/Volunteer Durham Hepatitis C Support Group 

My Motto:  No matter how we contracted this disease, we are all fighting the same battle.

Dragon Slayers of the Web Unite!                       

{xxxxx)::::::::::::::::>

up17.gif (21636 bytes)

More Pages on Sandi's Site

"HCV- The Taboo Subject" by Sandi  Copyright 1998
Hepatitis C Counselling Guidelines Page
"Hepatitis C" Essay by Sandi's son Copyright 2000
Medical Research Page
Memorial Page
Proclamation -Hepatitis C Awareness
Transplant Page

This personal website is maintained by Smilin' Sandi
providing Education, Support and Patient Advocacy worldwide since 1997.  (Copyright, 2008)
Smilin' Sandi does not endorse and is not responsible for the content of external websites. 
Links will open in a new window.

Email Listowner/Moderator Smilin' Sandi for a personal invite to join
the Yahoo CANHepC list for current Hep C info and private online support.

bannersandi.jpg (15531 bytes)

This page was last updated on 05/11/08