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Jolene Neufeldt(Norton) Lung/Liver transplant fund

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In February 2016, shortly after the birth of my first and only child ( Nov. 2015) I started to notice something was different about my voice. At first I thought it was my " I'm talking to my baby" voice and others around me didn't seem to notice. Then I started to have difficulty swallowing and decided it was time to see an ENT specialist.

The doctor did a scope and could immediately confirm that I had a paralyzed vocal chord on the left side. This was very upsetting as I loved to sing! He ordered a CT scan to further confirm, it showed the paralyzed vocal chord as well as "Pulmonary Hypertension". This was a devastating diagnosis as there is no cure for this rare and progressive disease, prognosis is usually not very good. An echocardiogram was ordered and I was waiting for the appointment letter.

Despite this my job called me to come back early from my maternity leave in July, so I went back to work. I was not feeling the best but I continued to work until October and still hadn't received the appointment for the echocardiogram. I started to realize that what I was feeling wasn't normal recovery from child birth but something else. I was short of breath and it was becoming difficult to even put on my own shoes. At the end of October I was at work and became so short of breath that I had to go to the emergency. They ordered another echocardiogram and referred me to a specialist but discharged me saying there wasn't much they could do for me there at that time.

A few weeks later things were not getting any better and I told my husband that we needed to go back to the emergency. This time I was admitted and was hospitalized for two weeks. I underwent diagnostic testing almost every day that I was there. Being away from my 1 year old and husband was very difficult and I had to stop breastfeeding which was devastating for me. Finally I had a diagnosis. They found Primary Biliary Cholangitis(PBC) in my liver as well as autoimmune hepatitis and they confirmed the pulmonary hypertension as well as other issues all stemming from the PBC. There is no way to know what caused what but the doctors think that the liver disease is the root cause of all the other issues and that they were perhaps exacerbated by my pregnancy. I was prescribed medicines that would help with all of the various issues and in started to feel a bit better. One medicine in particular called Sildenafil is not covered by most benefits plans without special permission and even then it was not covered by my husbands plan. It would cost us over $200/month even with 80% coverage from my blue cross plan. I had to stop working.

After the diagnosis I was quickly referred to a liver specialist as well as respirologist. Very soon after that the liver specialist referred me to a liver transplant specialist to see if it would be an option for me. The transplant would cure the liver disease and there was a small chance that the pulmonary hypertension would get better because of that. I began the workup for transplantation. This included a few trips to Toronto where the transplant would take place (only transportation to and from Toronto is covered by Manitoba health) one trip was one week and another for 3 days. As well as more tests and monthly blood work. I would also have to get exception points to be eligible for transplant because on it's own my liver disease was being managed by the medication.

I was feeling ok for about 2 years. I barely left the house but kept myself busy with my daughter and cooking. Going out would take a big toll on me and I usually needed at least 2 days to recover. This was all very difficult for me as I had been a very active person and loved working and the outdoors. There were many doctors appointments during this time. By the middle of 2018 I had finally received the exception points. The pressures in my heart were just on the borderline of being stable enough to handle having the surgery. I was told that I would have enough points to be considered for transplant by January 2019 approx. At the end of November 2018 I got the call! They had a liver for me and I needed to take an air ambulance to Toronto within the next few hours. My mom came as my support person and we made it to the hospital in Toronto. They kept me overnight and in the morning one of the respirologists came to do a portable ultrasound. He didn't like what he saw and I was sent for an emergent echocardiogram. The echo showed that the pressures in my heart had gotten worse and that the surgery would be too risky so I was sent home. This was obviously devastating news. In January 2019 I was scheduled for a right heart catheter test and it showed that indeed my pressures had gotten much worse. My specialist decided that we should just wait a few months and repeat the test with no changes to my medicine.
In February I started to feel worse. At first I attributed it to having a cold but after about 3 weeks of decline I went back to the emergency.

Since being admitted I have been put on a continuous drip drug that can not be stopped. I have had a permanent central line put into my chest and will be able to go home after learning to use a small pump that will continuously inject the medicine straight to my heart. This drug will help me to have a better quality of life for at most a few years depending on how the disease progresses.

Now my only chance to live is to have a double lung and liver transplant in Toronto. They have started the application process and hopefully I will be approved. In order to get the transplants I will have to move to Toronto with a full time support person(husband) once I am officially listed and live there for 6 to 9 months while I wait for a donor and then remain in Toronto for an additional 3 months for recovery.

Accommodations are not covered in any way. We will be responsible for all moving costs and living costs during the time we are in Toronto all the while still being responsible for our home, bills and responsibilities here in Manitoba while possibly being gone for over a year. The cherry on top Is that I have a rare blood type which makes finding a donor match even harder.

There it is..........ugh.

Thanks for taking the time to read my story, any help anyone wants to give would truly be appreciated!!!

Organizer

Jolene Neufeldt
Organizer
Elie, MB

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