Off The Grid

Living off the Grid on a west coast island

The diagnosis

Doctors were in and out of E’s room all weekend. Tests were performed.. He had an ultrasound, angiogram,and a  heart biopsy. A lot of blood tests and examinations. The Doctors advised us that by Tuesday they should have a diagnosis but at that point all we knew was that he had a leaky heart valve and a suspected ejection fraction rate of 19%.

Journal entry for Monday July 19

I tried to clean the games room up for Papa in case he is going to stay with us. But I gave up. I thought I will just have J sleep with me until we know what is going on. I am still hoping E will be home by the weekend. I phoned his boss and left a message. I will try him again tomorrow. Perhaps I will have more information for him then. 

E didn’t have the sonogram after all perhaps they chose to postpone it until after the biopsy results. A second Rheumitologist came to see him as the first is away.. He reconfirmed it isn’t Lupus.

The resident who took care of E his first night here came in to check on us. The cardiologist still hasn’t made it. We think he will come by when they have the results. The resident said they are really overwhelmed with the puzzle.

At 2:45 he came back in to say the rumor is the pathology report is ready so he said that before he comes in and scares the shit out of us he will confer with the cardiologist and they will  come in with the results.

Once they have the test results hopefully then they will give us a diagnosis and a plan for treatment and recovery.

So lets cross our fingers that it is good news and we have it soon! E is on oxygen so we are tied to his room as we wait. 

4 PM ….. Giant Cell Myocarditis

The cardiologist came by with the pathology results. He was obviously uncomfortable giving them to us. He had tears in his eyes. He said E had Giant Cell Myocarditis which is extremely rare. He said not to look it up on the internet when I get home as it will scare me. He has been here since 1991 and has never seen a patient with it.  E’s age and health are in his favour. His lack of physical signs of illness are in his favour. He was very surprised to see the amount of damage to the heart muscle. His own immune system is causing his hearts deterioration.

I asked how long he would be off work and the Doctor said at least a couple of weeks and they will be treating him with vast amounts of different drugs and steroids.

The heart transplant Doctors will be coming to see him in the next 24 hours to begin tissue samples etc. in preparation for a heart transplant.

Then a nursing specialist came by to tell us that she will be in contact and will be here for us. She understood we were trying deal with some really difficult news. The cardiologist said the only case he had ever heard of with Giant Cell ended in a transplant. E’s medS are basically only trying to keep the infection in check until he gets a heart transplant. We are to expect the fellow from the Transplant Team tonight or tomorrow and he will begin the process to expedite the process of getting E number one on the transplant list. This news completely took our breath away. We didn’t know the questions to ask but suddenly everyone was treating us differently so obviously we must be dealing with big shit. 

I phoned the family and told  Papa that E needed a heart transplant.  E’s uncle arrived within minutes. Papa had phoned him. He is a Doctor and obviously Papa thought I had lost my mind and he wanted his brother to see what the hell was going on at the hospital.

My sister picked me at 10:30 pm and took me home.. I ate at 11:30 pm when my girlfriend in Victoria called. we talked until 12:30 am. I finally I conked out…

July 20, 1999

I woke up at 6 AM and hit the floor running. I vacuumed the upstairs and washed the bathrooms. I wanted to open all of the windows to get the house aired out. The kids rooms were already pretty much done. The beds were made already. I tidied the majority of the games room.  J’s corner I didn’t even try. 

I set up Papas bed there temporarily until we know what we are doing. I went to the grocery store at 8AM to put a few groceries in the house. My friend was at the house by the time I got there. She helped to put the groceries away and make Papas bed and forced me to eat breakfast. I tried E’s boss again but I guess he is away. I will explain things tomorrow to him. I  need to ask about E’s sick leave.

When we got to the hospital E was in good spirits. He said he had such a good sleep that the nurse had to shine a flashlight on his eyes to make sure he was still breathing.

I brought his shaving gear etc. as I thought once the Doctor did his rounds I would maybe cut his hair and he could have a shower and shave.. Be all spiffed up for when the kids come tonight. 

I have reconsidered our position on what to tell the children. In thought, last night I felt that the word will spread through the community and it isn’t right for their friends to know more than they do. They all deserve to know the truth. 

We have heard that the various churches in our community are praying for him and the families have begun a plan to get food prepared for the family. E says there are no atheists in foxholes so all prayers are gratefully accepted… 🙂

The resident came by and wanted to weigh E. He is 192 pounds. He said all the transplant doctors from St. Paul’s and the pathologists and the VGH Doctors  are all hovered at the nurses station mapping out the drug strategy . Then I guess they will be coming in to talk to us.

Did I mention E is still on oxygen. He had been off for a while but he has had it continuously since yesterday morning. When or if,  I or anyone ever goes back and reads this I am quite sure my spelling and messy handwriting will be held up to scorn.

The Coordinator from the Transplant Society is coming to talk to us next. She works closely with the Transplant Team at St. Paul’s. A nurse just came in unhappy that E had tea with his lunch. I don’t know why. No one had told us he couldn’t.  After talking to the transplant Dr. and the Dr. on rounds E heads to nuclear medicine for further testing.

We were at nuclear testing and missed the Doctors rounds but the Transplant Team is due at 4.  The nuclear medicine test didn’t take very long and wasn`t the test they told me it would be . It was easier than he expected. They put a dye in to see what kind of activity the heart had. They test what they call the ejection fraction rate. How much blood is pumped each time it pumps. Normal is 60% so we will wait to see what his is. All of the doctors need to get together with the test results and make a decision. 

The woman from the Transplant Society called the Transplant Doctor to reconfirm the time of 5 pm. She explained to him that E would be seeing his children and hoped to have some uninterrupted time with them to tell them what is going on. So if all goes well we will learn a great deal around dinner time.

The kids will come tonight and we will have to tell them. Answer honestly any questions they have but don’t overload them with information they aren’t ready to take in. After his test,  he shaved, showered and clipped his nails.. He looks completely refreshed and you would never know there is anything wrong with him… It is 4:10 and he is resting. Dinner will be at 4:30

The VGH Cardiologist came in during dinner with his plan of attack. He said with the degree of damage they can see to the heart they felt his ejection fraction rate would be 15-19% but the results were very good at 29%. They are going to treat as follows in simple terms.

If you have a heart transplant you take anti rejection pills forever. They can make you very sick. E`s cardiac immune system is rejecting his own heart. So they are going to give him anti rejection drugs. He will probably be at the hospital for at least two weeks while they stabilize the medications. Then he could come home and be treated there. Once a month he would go in and be re-biopsied and re-scanned for this ejection fraction rate level to see if the drugs were making any difference. If he was getting worse or better. However it is really important that his mood stays up and positive. But the doctor also said things which E chose not to hear. Mainly, that in the 80 some patients reported in the world to have this disease usually even with treatment, within eleven months they still need a heart transplant. But E was encouraged and that is what matters.

Papa arrived shortly after and brought the kids. We told them as much as we could,  focusing on the hope which the drugs can bring. They took it pretty well. I think a lot of it they didn’t understand. But there will be a lot of time to answer questions as they come up. 

E was feeling pretty so good so I thought it would be ok to leave him and came home at 7:30. He just phoned at 9:30 to say his drugs had arrived so they had started the new treatment. I hope he doesn’t suffer from too many side effects. I love him so much.

Papa and I had a chance to talk a bit after the kids went to bed. We have a long way to go and we just have to take it one day at a time.

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I guess it could be mentioned at this point the kids ages were 13, 10 and 8. The Transplant Doctor who we hadn`t met yet became our life line and in the end created the protocol now used to treat all Giant Cell Myocarditis patients. A paper was written siting E`s case. We have a great relationship with him and the entire team at St. Paul’s. The Transplant Society co-ordinator has since retired but she always teased us that our first response after being told that E needed a heart transplant was asking if he needed to be off work very long.

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