Goodbye sweet blog

It's been three years, seven months and 8 days since my organ donor saved my life. My life is better than it was before my transplant. We have moved to the city we have always dreamed of moving to, we are living our life to the fullest and are happier than ever. I am at a place I never thought I would be, I no longer consider myself "the transplant patient". While I still think of my donor every single day, the fear of dying, and the fear of wondering what is going to go wrong next is gone. My transplant will always be a part of my life but it no longer defines who I am. (Luckily, it will always fast track me at the ER or to get an appointment with my Dr.) My friends and family no longer ask how I am doing, the fear is gone from their voice and it's so refreshing to just be a normal person again.

This blog was a great way to keep my family and friends informed about my recovery after my transplant. Writing was very therapeutic to help me process what the hell happened and what my new life would entail but it's time to move on. Thank you to my donor for My New Liver and My New Life... I promise to make you proud!

Goodbye sweet blog!

I will keep the blog online but I will no longer be updating it. Please contact me at natasha.deegan@yahoo.com

Happy 3rd Birthday to my Liver!

Today is my three year Liverversary! 

It feels like it never happened and yet it feels like yesterday. Three years ago was almost the day I died.  Three years ago was the day someone gave me the ultimate gift, the gift of life. My heart is full of gratitude for my donor and at the same time, my heart aches for my donor family. On my day of gratitude and celebration, I know they are mourning the loss of thier loved one. This makes today so bittersweet. I hope that they know how grateful I am for the gift I received and I promise to treat each day as the gift that it is.

I owe so many "thank yous" to all my family and friends who have shared in this journey, especially my Husband who continues to be my rock. I couldn't have made it this far without the love and support he gives me every single day.

 

 

"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.

- John F. Kennedy

 

 

 

 

 

 

 

I had a WHAT???

I have been really lucky the last couple of years with minimal health issues considering I have a high risk of getting ill. Besides a cold here and there, I have been rather healthy. While I am still healthy, I have been battling frequent headaches. Headaches are pretty common in transplant patients but since I am not the "common" transplant patient, I am not happy with this development.

In July, I ended up in the ER with a headache that would not go away.......

After some really good pain meds, a CT scan and talking the Doctor into skipping a spinal tap, I was told I have joined the many members of the migraine club. I followed up with Dr. Olson, my Primary Care Doctor and since I scare the shit out of him, he sent me to a Neurologist. The Neuro Doc ordered an MRI to make himself be able to sleep at night (seriously, he said that) and yesterday I received some crazy news. On January 8th, 2011- the same day of my transplant, I suffered a brain hemorrhage also known as a STROKE! I guess this was a small detail that we were never told about but the MRI showed it and my medical records from CPMC confirmed it. They think the old blood from the bleed is irritating my brain and causing the headaches. My team isn't worried so neither am I but now I have something else to add to my past medical history!

I survived acute liver failure, a liver transplant and a Stroke. What a great excuse to buy myself a present!

PS... Writing the first sentence and being able to say a couple years totally blew me away.... HOLY SHIT... it's been a couple of years since my transplant. I am so honored to be able to say that. My donor is my hero!

The Balancing Act

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Balancing has never been a strength of mine. Just like most type A personalities, I pack a ton of stuff into one day and say yes to everything. Since my transplant, I have found that I must do a better job at balancing work and play. According to dictionary.com, balance means: 

1. 1.

   keep or put (something) in a steady position so that it does not fall.
2. 2.

   offset or compare the value of (one thing) with another.

I find #1 ironic since my Dr. once warned me that if I don't find the time to rest, my body will revolt and make me rest by passing out. Luckily that hasn't happened... YET! I joke with Joe that I can rest when I die ( he doesn't find this joke funny) but with all seriousness, I have accepted that I need to focus on balancing fun with rest. This acceptance was proven on Labor Day, when my planned trip to Nordstrom was postponed because I was tired and needed to take a nap. I know... You must be so worried that I passed up a trip to Nordies for a nap but the truth is that although I felt fine, I was busy having fun in Truckee with friends the previous three days and needed to not push myself. I happily came home and took a nap with Sammy the dog. Instead of filling my weekends and not having any free time, I take the time to plan my weekend to keep an afternoon free for a nap or two.  

Before you feel sorry for me... Here is what I have planned in the next four months:

2 trips to Maui

Trip to Pasadena to help decorate the Donate Life float

Nashville trip for work

Las Vegas trip for work

And much much more!!!Now can you see why rest is so important!

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A new job, a clinic visit and Donate Life Month!

This post is long overdue... it was sitting in my draft folder halfway completed since April! I have been having too much fun working and living my life and my blog has dropped to a low priority in my life.


I have been officially employed for two three months at my new job and I couldn't be happier. After hitting the snooze button at least five times, I am waking up each day excited to go to work. My commute is half of what it used to be, my coworkers are wonderful and its an amazing feeling going home knowing I am impacting lives through the gift of organ donation. It was hard to adjust at first dealing with so much death but knowing the impact on the other side helps. I also find peace in knowing how much it can help the donor family during a horrible time of their lives. It just validates how much respect and love I have for my donor family.

I had a clinic visit in San Francisco in April and it included an ultrasound to check on my artery. I got to see my favorite ultrasound tech... He did my ultrasound right after my transplant so we go way back. He also did the ultrasound when they first found out about the artery problem so I blame him for that hospitalization. The best thing about him is that he tells me what he is seeing. Even though it gets read by a radiologist, I like being given a heads up if there could possibly be a problem. The results were great and the artery has actually improved. My liver is happy and we are continuing with the weaning of prednisone and there is even talk about reducing another anti rejection drug. My Doctor confirmed that the entire team talks about me and that I am famous around CPMC. They have asked if I would mentor other young patients who have or need a liver transplant since I am a model patient. It's the biggest compliment I could get!

April was also Donate Life month, a month to raise awareness of the dire need for organ donors. I volunteered at a couple of Donate Life Booth events and was lucky enough to have an article published in a local magazine that highlighted organ donation. I was also featured on the new Donate Life California website!! It was a busy and rewarding month!

Link to Article: http://www.stylemg.com/Style/April-2013/Organ-Donation/
Link to Donate Life California Website: http://donatelifecalifornia.org/

I Made Lemonade

We all know the saying.... When life gives you lemons, make lemonade. Since my transplant, I have done just that. Instead of making myself the victim of the situation I have used my transplant to make my life better. My lemonade just got sweeter ... I am starting a new chapter of my life ... I have landed my dream job!!

I will be working with my local OPO- Organ Procurement Organization as a Hospital Services Coordinator. I will be working with local hospitals to develop and promote a pro donation culture and increase organ donation. When  I resigned from my Bank career it was one of the hardest decisions of my life. I wasn't sure what my next chapter of life would entail but knew I would return to work when the right job presented itself and this is the right job, I am so excited!!!

An odd obsession

My last blog entry confirmed my life was great. I lied a little... it was missing the ability to accomplish a sit up. A sit up is an easy task for most people but it was something that I haven't been able to do since my transplant. During my surgery my abdominal muscles were cut and I lost all feeling in that area. I have been working on my core strength daily for the last 5 months but still was not able to do a sit up. I asked Dr. Guy during my last appointment if I would ever regain strength and she had no idea... I was the first patient to obsess over doing one. I know its a weird thing to obsess over especially since I can't remember the last time I did a sit up before my transplant.

Well folks.... CHECK THIS OUT!

                                                        I CAN DO SIT UPS!!!

I bet you are asking why I am not in gym clothes? This was taken at a photo shoot for Blood Source, they are using me on their promotional items.... I am hoping for the blood mobile! ( don't worry...not these pictures, LOL) I was so excited that I was telling them about my sit up so she took a picture so I can use it on my blog. 

I wonder what my next obsession will be now that I have accomplished a sit up! Stay tuned!  

TWO YEARS!!!

Today is a VERY special day. It marks 731 extra days of life. That's right folks.... today is my two year Liverversary!

At one point I didn't think I would live and extra year so to be able to celebrate two years is truly a huge accomplishment. My one year anniversary proved I was a survivor and that I made it past the most critical year post transplant. This two year anniversary proved that I have a long life ahead of me and will create new memories for years to come. I no longer consider myself as "the sick transplant patient". I am now "the girl who had a transplant and has a better life because of it." I never understood how people go through horrible things and later say that they wouldn't change a thing. But now I am that person. My life is so much better than it was before transplant. I wake up each day so thankful for what I have. My friends and family are now more important than they ever were. I have met some wonderful people through this experience and some crazy ones too! I still have some bad days but the good far outweigh the bad. It has taken me and my body awhile to adjust to this new life but I have never been happier and I wouldn't change a thing!

I wish I could some how express how grateful I am to my donor and all the donor families out there. Words just cannot do justice. Thank you from the bottom of my heart and soul. I do my best to honor my donor each and everyday.


PS... Just because I am no longer the sick transplant patient does not mean I no longer accept gifts to celebrate my extra years/months of life. Presents are always welcome!

PPS... I had my two year checkup at CPMC and I am healthy as a horse! I love my new doctor and my liver is doing great. I brought the ICU nurses, Doctors and staff baskets of treats to celebrate the big day.  Here are some pictures of me and Tania, the NP that helped save my life. The picture of the left was a month after transplant and the one on the right was last Thursday. I laugh looking at the picture on the left... I thought I looked great back then! HA... I was as grey as my shirt! So glad to have my normal skin color back!

Happy Thanksgiving!

So much to be Thankful this year! I continue to be blessed with good health, a wonderful husband and family, and great friends. I am most thankful for the gift of life my donor gave me and each day I wake up knowing how lucky I am.

Thanksgiving means more to me now than it ever has. Thanksgiving 2010 was the first day I felt really sick and marks the first day of my liver failing. Thanksgiving 2011 was better, I was alive but truthfully I was still in survival mode and still was adapting to my new life. This Thanksgiving I can honestly say I am loving life and count my blessings each and every day.

                                                              Happy Thanksgiving!

Ignorance is Bliss

When I "retired" from my job, I was added to Joe's insurance. We went from a PPO to an HMO to save money. With that change I now do my lab tests at Mercy versus Quest and I couldn't be happier. (This is the only positive thing about the HMO and we will be changing to a PPO ASAP) The lab is much nicer, less busy, doesn't smell like smoke but best of all, they DO NOT send me my test results. At first, I hated it and kept calling my transplant nurse for the results but as time has passed I have started enjoying not knowing. You may be asking why and tell me that I need to be proactive in my healthcare but truthfully I was neurotic with my results. I would review them for hours (OK, not really but I needed to sound dramatic) and compare them to previous results. If there was any change I would worry endlessly and call my transplant nurse to make sure she saw them. Now my nurse sends me a letter and let's me know my results are stable. I would prefer her to use the perfect over stable but it's a pre printed form so will let that slide... for now. I have so much faith in my three Doctors and nurse who are copied on the results and I know they will call if something is wrong. If not, Joe will tell me my eyes are yellow!

Below is a picture of me and my Transplant Hepatoligist, Dr Bzowej. She is moving to New Orleans and this was my last visit with her. I will miss her dearly since she was with me at my worst and was the one to list me for my transplant. 

This is my first update in a long time and not even sure if people still read this. No real reason why I haven't been updating but my plan is to update more. It may not be about my health since it's stable perfect but with other fun stuff going on in my life.

Sign up to be an organ donor at Donate Life www.donatelife.net