Save the date! December 14 Fundraiser

For Immediate Release

For more information:
Amy LaBossiere, (860) 543-3244
amy@stillwaterspond.com

Artist Friends Create Fundraiser to Help West Hartford Family Who Needs Kidney

Hartford, CT — [November 23, 2014] — John Toomey needs a kidney, and his artist friends want to help. Spearheaded by Amy LaBossiere, Caresse Amenta, Marni Schiffres and Rachel Sclare, the four artists organized this pop-up event to have 100% of the proceeds to go to the John Toomey Kidney Fund. This one-day-only event will be held on Sunday, December 14, 2014 at Hartford ArtSpace Gallery, 555 Asylum Avenue in Hartford, CT, from 12 to 5 pm. A $5 suggested donation will be collected at the door. 100% of all money raised will be donated to the John Toomey Kidney Fund.

The Toomey’s are grateful for the community support. A relative created an online fundraiser that has allowed them to hold onto their mortgage while John Toomey has been out of work on disability. In addition to the normal bills, the co-pays from multi-ple office visits and medications are stacking up, and insurance covers only part of some services. Toomey’s wife, Dawn Manogue, has been close to the Hartford art scene for many years, organizing The Oracles, a community tarot art show of 22 artists in 2012 and other art shows. Read more about their family and their medical struggles here: http://fivekidneys.blogspot.com/

Manogue said, “Our family is grateful not only for the financial support but also for being surrounded by a creative and giving community that looks to help one another.”

LaBossiere said, “When I learned about what our friends were going through, I was moved to help in some way. I thought if I rallied some mutual friends, we could create a pop-up event, raise money for the family and give artists and local vendors a chance to sell their wares for the holidays. It’s a win-win for everyone involved.”

To learn more about the cause or make an immediate donation, please visit: youcaring.com/medical-fundraiser/kidney-quest-for-john/233831

14 year Health Anniversary

So, John isn’t the only family member with a complicated medical history.  This is our family’s cardiac story, which started 14 years ago this week.

On November 3, 2000 Elizabeth Cogswell Toomey arrived after several days of labor.  She was due to arrive on Halloween, but took her time.  (Not much has changed there--she still makes us wait for her and does things on her own terms)

I delivered at a well-known women’s hospital in Boston with the help of a birth doula.  I was understandably weak and tired after the birth--42 hours of labor is intense. This was my first baby, I had no idea what was ‘normal’. Lily was in the NICU for a couple of days, so I had to walk there to visit her. I remember having to hold onto the hospital wall for support as I walked.   I felt exhausted and short of breath.  I was retaining so much water that I weighed more than I did before the birth.  The nurses assured me that my symptoms were normal post-partum experiences. Lily’s issues resolved, and we were discharged together. I was anxious to get out of there and begin to feel ‘normal’ again. I didn’t sleep well at the hospital, each time I would lay down in bed I became anxious and had trouble breathing.  I thought being at home would help my healing process along and take me out of the thick brain fog I felt since being hospitalized.

Once home, I continued to have strange symptoms.  I was still retaining fluid, didn’t have the strength to lift my daughter, and still couldn’t lay down.  I called my OB/GYN, and she insisted that I had ‘new mom anxiety’. It was an overall feeling of dread and helplessness with the physical symptoms worsening each day.  Thankfully John was home for one week with me, and did all of the lifting and household stuff that needed to be done.  I called my doctor again and again, as the symptoms worsened.  Seven days post-partum I started to lose my eyesight. It was as I were seeing things through a tunnel.  Breathing was difficult all the time, not just when trying to sleep.  Again my OB/GYN was sure I was suffering from anxiety. I couldn’t seem to convince anyone that something was wrong.  I was too exhausted to even cry at this point, and I asked her if she would please see me.  She refused, and said “if you really think something is wrong, take yourself to your regular doctor.  And he will tell you it’s anxiety.  Classic anxiety.”  So I did.

Still unable to sleep, I propped myself up on pillows all night, counting the minutes until my 9am appointment with the general care practicioner down the street.  I had never been to the office before.  The nurse did an EKG, and it was apparent that something was wrong.  They calmly told us to get to the ER in the next town.  Once we got there, a chest xray and EKG were ordered. John took Lily back to our home.  Nurses took blood for many tests and got me a nebulizer treatment to ease the breathing problem.  The chest xray and EKG revealed problems:  2 clots in the lung, and Stage IV heart failure.  My lungs were half full of fluid.  I was not scared at that point, I simply felt like shouting from the rooftop “I told you something was wrong!”  But as the ER became more hectic and the my doctor was heard raising his voice on the phone, it slowly occurred to me that all of this activity was about me.  The doctor explained that the origin of the clots was unknown.  They could be a pulmonary embolism, in which case I was lucky to have made it to the ER for treatment.  They could be an amniotic embolism, which would mean death soon.  They had no idea why my heart was failing, and needed to send me to a bigger hospital that would be better equipped to deal with these issues.  They called a helicopter to take me from Plymouth to Boston.  The helicopter arrived to Plymouth, but was not able to fly further because of an electrical storm.  There was no choice but to send me by ambulance.  I said goodbye to Lily and John, consciously determined to survive the transport.  

In Boston, after some dramatic ER situations (I remember thinking in my morphine state: “hey, this is JUST like the movies!”), I was diagnosed with Peripartum Cardiomyopathy and given a grim prognosis:  I would not l survive more than 5 years without a heart transplant.  I was hospitalized for just one day before they gave me a private room and moved John and Lily in with me.  I was feeling better as the fluid I was carrying was reduced.  I decided to ignore the prognosis--I didn’t even tell John--and focused on getting well enough to take care of the baby.  

My heart was severely compromised then, and I had to limit walking to 5 minutes TOTAL per day.  In other words, the only walking I could do was to the bathroom.  The cardiac staff treated me like a rock star--it was not often that they had a 32 year old female on the floor with an adorable newborn.  We spent several days there preparing to go home with not only a newborn, but a mom with a giant pill organizer to keep track of all the meds, and an injectable blood thinner.  I was forbidden from walking more than 5 minutes, and had to wear a holter monitor.  I was not allowed to climb stairs, and had to stop breast feeding. Once we were home, we had a post partum doula come in daily to assist me with everyday things--I couldn’t go downstairs to make lunch or do laundry.   

Slowly, I began to feel better and gain strength to walk.  We celebrated the little things: Walking to the end of the driveway to grab the mail, visits from friends, watching our adorable kid sleep.  

At Lily’s 3-month ‘well baby’ check up, the same primary care doctor that heard something wrong with my heart also heard something wrong with Lily’s heart.  A murmur was present that was not there previously.  We went for a consult with a pediatric cardiologist who said that she needed open heart surgery to repair a congenital heart defect.  I asked my cardiologist for a recommendation for a second opinion, and we ended up at Boston Children’s hospital.  Lily had open heart surgery at 18 weeks old.  There are only a handful of cases ever recorded with a similar defect. It was one of the most stressful events of my life.  She did very well, and we were home just under a week past surgery. We had mother-daughter cardiac meds for awhile.  

This was not a typical initiation into parenthood.

Within a few months, my heart improved enough that I didn’t need a transplant.  Gradually, the function returned to within ‘normal’ range.  My normal is comparable to someone much older than me, but with a normal life expectancy.  The way my cardiologist put it:  “you’ll never run a marathon, but you’ll be around for a long time.”  

Normal heart function and a bonus:  an excuse not to run a marathon!  The experience was very challenging and working through it over the years it has spurred some new and wonderful experiences:  adopting from Ethiopia, return to teaching, earning a second Master’s degree in Integrated Medicine, becoming a national spokeswoman for heart health, and a lot more compassion.  

Waiting for approval!

John went to Boston today to meet with his liver specialist. If you are just catching up, John has 2 liver diseases:  hemochromatosis and hepatitis C (HCV).  Because of the damage to his liver from these diseases and the damage from the multiple medications he has taken to treat kidney disease and kidney transplant, his liver is fairly damaged. Not damaged enough to need a liver transplant, but too damaged to receive the kidney transplant he needs to live. Limbo.

The good news:  hemochromatosis is fairly easy to treat, in involves bloodletting.  That disease is under control, and does not require further treatment.  There is now a treatment for the HCV which CURES patients.  It has been approved by the FDA.  This is a miracle treatment, it has the potential to save many lives.  The best sustained results are within the group of people with Genotype I HVC, which is John. Also, John started back at work this week. Hooray for good news!

The unknowns:  The HVC treatment has not been studied widely with patients on dialysis. The meds used to treat the HVC are filtered through the kidneys, so we are not sure how treatment will progress with the dialysis, which is an artificial kidney. Will too much medication be filtered out? Not enough?

John's doctor submitted his case to insurance today for the approval of the $84,000 treatment. He expects that we will be denied at first, and we'll have to fight. I am ready. 

We are so grateful for the ongoing support. The financial support from the online fundraiser has allowed us to hold onto our mortgage while John has been out of work on disability. In addition to the normal bills, the copays from multiple office visits and medications are stacking up, and the insurance covers only part of some services.  It takes a while to sort it all out and sometimes pushing back on insurance, but we end up with part of most bills. 

If when insurance approves the HVC treatment, and they cover the typical prescription benefit, our portion will still be about $17,000.  After that hurdle, we are planning for transplant.  That will involve missed work again, and potentially travel.  More on that later.

Thank you for keeping up with us here, that support is appreciated, as well.  Along with the snacks, texts, driving the kids, checking in, and the millions of other ways it shows up.  Thank you! 

Experiences like this have a way of bringing friendship and community into focus.