Niall’s Bone Marrow Transplant Fund

In July I was unexpectedly diagnosed with a type of bone marrow cancer called Mylodysplastic Syndrome. The diagnosis started h an annoying cough but getting ready to go on vacation Robin insisted I visit to the urgent care to have it checked in case I needed an antibiotic before leaving on vacation. Ten minutes later we were sent directly from Urgentcare to the Emergency Room and a 4 day admission for urgent blood transfusions followed by a bone marrow biopsy.

The diagnosis came a week later along with the shock that life expectancy is 4 - 12 months, to which my doctor said, considerably less than 12 months.   There is no real treatment other than some chemo to try to reduce the amount of transfusions

On the bright side,  I have private insurance so I could have a bone marrow transplant.  It is my only chance to live.   It can be curative.   The cost is $400,000 - $900,000.  Insurance will cover some but not all of it.   Usually out of pocket is about 40%.  It's transplant or die and they are ok in this country to let you die if you can't pay.

Blood transfusions are given as needed to keep me alive while they look for a bone marrow donor.

The search for a donor has gone on longer than expected so they have decided to start chemotherapy in order to try and slow down the disease because as it is I am needing a transfusion of one to two units of blood every week and it isn’t lasting the week, meaning I will need more units of blood and could bump up to twice a week.

At this point I have paid my out of pocket max for my insurance which was $7,500 and that will turn over and be due again soon.

The blood transfusions are not completely covered by insurance and my copay for them is $297 per unit of blood. Sometimes I get 2 units at a time with an average out of pocket of $1,200 a month.

Bone marrow biopsies also come with a hefty “coinsurance” payment of $1,900. I have had one, will need another one before transplant and several after transplant to evaluate the success.

When I started chemotherapy the hospital called and said I could not get my first of five doses until I made a DOWN PAYMENT of $1,488. They could not tell me if that was for one day or covered all five days of chemo, but they did say that the $1,488 was a down payment and they would make a payment plan for me after that.

The testing for a match comes with a huge copay of nearly $2000 per test. I was tested as were both of my children and my niece for a mere $8,000. Along with that fee Labcorp charges an extra $300 per test in shipping fees and US custom charges.

Once a match is determined it is my responsibility to get whoever matches, most likely one of my children, from Ireland to Charleston on short notice for the procedure.

As of now I am working as much as I can. I have to work because I haven’t worked long enough in this country for Medicare yet, so work insurance is all I have. I will need to use the FMLA once I am hospitalized for more than 8 days. At that time my pay will automatically reduce to 50% for 12 weeks. After that 12 weeks I will not get paid at all. I don’t know how to navigate this, it is a real stressor.

I will be in hospital for one to two weeks prior to transplant for intensive chemotherapy after that the length of hospital stay is dependent on how I do but a minimum of a month up to three or more months in the transplant unit.

I have had requests from friends and family asking if I had a Go Fund Me so they could help. My own doctor suggested straight away that I start a Go Fund Me and I thought he was crazy. I always thought this type of thing was very bold. Being from Ireland I could never imagine letting or needing people to give money to help with medical, but I could never imagine how quickly the bills add up or the expense involved. But now being where I am in this fight to live, and experiencing first hand how just a few months of medical bills can wipe out years of savings, I get it. I have actually watched patients come in for treatment and heard them being told “no treatment because your account is past due”. Basically Pay or die!!!

I am extremely humbled by the friends and family that continue to ask how they can help and now I humbly reach out to accept help.

All funds will go directly towards medical bills. Blood, chemotherapy, medications, bone marrow biopsies, hospitalizations, lab fees, etc…………

Thank you so much for your love and support. I hope to be around a long time and thank everyone involved in helping me live.