How Sick I Was For Almost a Year

This year was a hard one for my family. This year was not as hard as last year was, however, hard and emotional in different ways. I feel as if this year, I am the one who fought for my life. No one died. I did not have to eulogize anyone, Thank G-d!

However, as stated in the title, I have been sick for almost a full year. It started in February, with a weight loss, but I eat healthy so I thought nothing of it. A month later in March, my belly started to fill up like never before. I began to look pregnant. I had migraines daily, and my belly got so big that my belly button inverted. I am not able or advised to have a baby so this was extra hard!

Because I'm strong, and perform, I made up a clever story about my 'pseudo baby' as it was easier than telling people I was in heart failure and the doctors were fighting over whether it was my liver or my heart. This went on for 6 months. I had multiple belly taps, and the fluid, called ascites, would come back literally within minutes after the tap. I honestly stopped counting after my sixth belly tap, but I now have more battle wounds to show for it.

I had two cardiac catheterizations in the space of 3 months, and a traumatic liver biopsy. The heart caths showed that my pressures were normal, and that it was not my heart. While the liver biopsy was more traumatic than helpful, it showed that it was my heart. Therefore, the pissing war between the doctors began, and got evil. When I had my second cath in June or July, I cannot remember exactly when, I broke down in the bathroom right before, because I love watching the cath on the screen, and I was so scared that this would be the last time I would see my own heart on the screen.

I cried so hard that my pediatric nurse practitioner had to hug and calm me down, and told me to separate those feelings. This is my heart, and as much as I want to live, I do not want to say goodbye to it if I do not have to. I dream about it as if it is a child... I am so in tune with it. Transplant is not a total cure, it does change one problem for another.

My pediatric cardiologist, who performed this cath, promised me a slice of pizza even though I am on a low sodium diet since Passover/Easter Weekend. This was a bummer when I the doctor said, "Passover was over for me but I had to trade it for a low sodium diet for the rest of my life".

In a critical turn of events, I was rushed to the ER, on the first day of Rosh Hashana, right from my mom's table. I had 4 liters of ascites drained out of my abdomen that night. Based on my size and stature I set a record. I was truly sick, with germs such as Ecoli in my system and transferred the next day from the ICU in our local hospital to my doctors at Montefiore Medical Center in The Bronx. I spent 18 days there. I missed all of the High Holidays, and did not get to do my Haftorah, on Yom Kippur morning. This is a tradition that I have done for 4 years, and was devastated by not being able to be there and sit through the mourners’ service for my beloved older brother, who took his life a little over a year ago.

During my 18 day stay. I had multiple procedures and spent more time in the ICU causing me to need some physical therapy and occupational therapy, because of my inability to be mobile. It turned out through a procedure that it was not my liver, which is involved but is not the culprit of the ascites. At that point I was rushed into a right heart catheterization. This is done through the right jugular.  My adult cardiologist said she did not trust any one's pressure numbers but her own. This did show that the pressures in my heart were high and indeed, I needed a transplant. I had to sign the forms all over again.

Once the IV’s came out from my neck, I rehabilitated fast and did not need to go to a rehabilitation facility. The physical therapist and occupational therapist were amazed my quick recovery. It came to the point that Montefiore decided they could not transplant me because I am a congenital(from birth) patient and they are not fully equipped to handle my transplant. They obviously want the best outcome for me. They sent me to Boston for a second opinion where the doctor and the nurse practitioner did not discuss transplant. I was the only one who mentioned it through tears, because I want to finish school to work with little kids and do advocacy through the following modalities, writing, singing and public speaking. The outcome of that appointment was to lower my fluid intake, which is hard because I was drinking so many ounces per day due to all the diuretics and constant changes in them. At the end of my hospital stay, the doctors placed me on a new drug, which seems to be doing the trick and keeping my ascites at bay. We are cautiously optimistic at this point.

I tell you I feel like I am using up more lives than a cat, but at least I have more lives than they do. ;).
I have started to feel good and bought my books for the upcoming semester. I did yoga today and my yoga clothes fit better than when I bought them and I know I can keep that up.

It is hard but I am finally adjusting to all my dietary restrictions. Nevertheless, I must say it is a bit boring and makes going out with friends hard. This is still such a small price to pay to keep my own organ for now and we are cautiously optimistic it will take me at least another few years! I could go on but the tears are welling up and you get the picture.

I have found a support group on line which helps to know I'm not the only one out there with these issues, and this is an avenue that needs to be explored and we CHD patients need more Adult Congenital Cardiologists and centers in the US and around the world. I am interested in holding a gathering in NY for all of my new <3 friends sometime this spring!!

That I am able to sing is a true miracle! I always know when I start to get sick because I have trouble with
breath control. Therefore, this is ultra important emotionally and physically for me to keep up with, besides the fact that I would be nothing without it. I hope I get the chance to make some of these dreams come true!

I will show you what I used to look like because it is not what I look like now. I take things and symptoms day by day and am learning my strengths and limitations and that will take more work. However, I hope my writing will help me and support will be there for me. I am always there for everyone, now it is time to be there for me!!

One question to my readers. My well-informed cousin suggested I create a face book fan page but I do not know if anyone would read it.         Suggestions?



With Love and Compassion, Ellen <3

--> Remember, Live, Laugh, Love and Be Happy

This was on my Birthday in February.

Me for the following 6 months.

All set for my tap tomorrow morning. I get my 15 minutes of skinny, and easy to breathe! :) ♥ it will work out. I have an appointment with the liver specialist finally! Next Weds. 7/20. It had better come quick because my belly will. ♥


I am Not Ashamed because I am not the only one going through this and we are getting to the root of the issue. I look healthier now, and feel a hell of a lot better! :)