A powerful journey from living with an artificial heart to a heart transplant....

Friday, November 4, 2011


With great success, comes great challenges. - Unknown

Now that I'm somewhat caught up on posts, I can take you back to my most recent challenge.

Looking back to mid-September, I was working about 23-25 hours per week and feeling very tired. I was having difficultly eating regularly because I often felt nauseous and "things" weren't moving quite right. I attributed it to over-exhaustion and tried to slow down a bit. I called my transplant coordinator and told her that I just don't feel normal. I couldn't place any real symptoms to cause concern and we both thought I just needed to slow down. Our conversation was very meaningful and I gained much from it.

I said, "I don't know what's going on. I just don't feel normal. I want to feel normal again."

Nurse said, "Andrea, you aren't normal, you never will be normal."

She added that my life has changed drastically. I am not the same person that I was before all of this happened to me. As I go back to work, I expect for everything to just happily fall into place. That is not the case anymore. She told me that often patients need to grieve the loss of the person they were before all the health challenges and come to terms with the new person. Now that I understand the capacity of my life change, I can move forward. I truly appreciate the honesty of my transplant team.
After about two weeks of feeling this way, a new symptom began. I had painful cramping in my abdomen. This was a sign that something else was going on. The next day, the pain did not subside so my transplant coordinator suggested that I seek professional advice at a hospital. I decided to go to St. Mary's Emergency in Kitchener. They took a few tests and couldn't find anything and so I went home with pain killers. The next day, the pain was worse. I decided to go back to Emerg because obviously there was no solution. My transplant coordinator specifically requested a CMV PCR test to be collected. This was taken and I went home again to wait for the results.
What is CMV?
As you know, I'm not a medical professional, but I can provide a brief summary of my interpretation of CMV. Cytomegalovirus or CMV is common in 60-80% of the population by age 40. It is a virus that is typically harmless. If a person of normal health contracts it they may feel unwell for a day or two, such as added fatigue or upset stomach. It is often confused with a touch of a flu or a cold. For those of us that are immuno-suppressed, it requires treatment. To find out more about CMV in organ transplantation visit here.

I already knew that I was at risk for CMV because my heart has a history of CMV and I do not. It's called donor/recipient mismatch. We knew that it could pass over eventually. However, I was not very clear of the symptoms to expect. As a transplant patient, or any patient with health challenges for that matter, we go through a stage of denial. (I'm working on shortening that stage.)
So the test results came back the next day and guess what.... it was CMV. From what I understand, my team will tolerate a test result of less than 100 copies and treat at home if the result is less than 500 copies. Well. My result was 27,800 copies! That's really high! So my nurse did not hesitate to say, you need to be admitted to hospital, now. And pack your bags because you will be a while.

Off we went to Toronto General Hospital, 7th floor. As much as I don't like to be away from home, I felt relief because there was an answer and it's treatable. I had a great room too! Three windows! Two looked out to the Atrium and one looked out to University Avenue. I couldn't complain. I was in hospital from October 5 - 14. I find it kind of funny because I was in hospital for 10 days after a heart transplant, and 9 days for CMV treatment. Interesting.

So my test result on Tuesday was 27,800 and they did another test on Wednesday...one day later...you won't believe it...79,000!!!! Unbelievable. They said that would be why I was severely symptomatic.

After the hospital stay, I was sent home with home care nurses to continue IV Gancyclovir for an unknown amount of time.... This is attached by a picc line (Peripherally Inserted Central Catheter) in my upper left arm. The medication runs 24/7. I felt like being connected to my LVAD again, only that everything is on the left side this time. It really messed with my mind! I got tangled in the tubing because I kept removing it from my right side....dah.

Here are some of the test results to show my progress:

October 4 27,800
October 5 79,000
October 12 21, 500
October 17 10,000
October 24 650
November 1 <100

If I get another good result this week then I'm off the IV! Yay! But the treatment doesn't end there... I will be on the oral version, Valgancyclovir for an unknown amount of time. It also requires time to allow my body to recover from CMV and from experiencing the challenges of having a severe virus in general.
There is a balance of infection and rejection. To allow by body to heal and create antibodies against CMV, the docs have reduced my anti-rejection meds. I had results of rejection at my last biopsy but nothing we can't handle.
If I can finish this post with one piece of advice, it would be to listen to your body. Something wasn't right and I persevered to figure it out. People like me with a significant health challenge need to take minor symptoms seriously. Really this is advice for myself... I need to realize that seeking medical attention is not a lack of strength but a matter of honesty.

1 comment:

  1. Such a relief that you're CMV numbers are finally under control! Hopefully, that's the last you'll see of it!!