Bringing back the blog???

Wow… It’s been YEARS since I posted to this blog. I doubt anyone is still reading it. However, if you do I just want to fill you in on all the positive things that have happened since my transplant.

My new liver and I have now been together for over 5 years. My organ donor is now my husband 🙂 I never thought I’d receive a greater blessing than my “gift of life”. However, last year I received an equally great gift. My daughter was born and she has made my life complete.

When I was going thru the health problems I came to grips with mortality. The experience strengthened my Faith and I wasn’t afraid of death.  Had I not survived, the one regret I’d have had was that I never got to experience motherhood.  So, 2 days before my liver transplant I bought a tiny, soft, yellow baby sleeper. That was my inspiration for living and motivating myself to conquer whatever struggles came post transplant.

I’m thrilled to report that 5 years and 3 weeks after my transplant I became a mom. It was a high risk pregnancy due to my medical history & my age. However, it went very smoothly. The transplant team monitored my liver and the levels of my anti-rejection medicine. I had a scare with dehydration and kidney function. However, a few days in the hospital, antibiotics & IV fluids & I was back in business. Neither the baby or I had any serious health problems.  Having the baby was the most positive and joyous visit ever to the hospital! I loved knowing that while pregnant, my baby was nestled in my tummy with daddy’s liver nearby. It was our whole family together in my belly.

That baby turned out to be a little girl who is growing and changing every day. She’s so beautiful and makes me even more grateful for the new liver. If her daddy hadn’t saved my life, then she never would’ve been born. Life truly is full of wondrous miracles.

Hello world!

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A much needed update

Well… I’m still around, just haven’t updated the website in.. a 9 months or so.  Oops!

 

Let’s see, it’s unbelievably cold in the Chicago area. I think the temp was -7 today.  We’re all ready for warmer weather! Too bad it’s still 2 – 3 months away.

 

So, the big news is that I have been on another new medical journey.  My liver is doing well (it’ll be 3 years post transplant this May!). However, this time it was another organ, my large intestine, that started acting up. It all began in May 2008, when I went in for an MRI of my liver. I’ve been reluctant to write about it… who reallly wants to share the details of their GI (gastro-intestinal) problems. & even more so – who wants to hear them!? TMI!

 

However, I think it’s an important issue that needs some attention. Did you know that in 2007 more people in the U.S. died from colon cancer than from breast cancer & AIDS combined!? Isn’t that shocking? Esp. when you consider that colon cancer has an 93% recovery rate when found during stage I. The thing is there aren’t always tell tale signs & people find a lot of excuses to avoid getting a colonoscopy.

 

So, they found I had an auto immune disease (colitis) and then biopsies showed "dysplasia" (pre-cancerous cells) in my colon.  That, combined with my medical history of the auto immune liver disease, PSC, put me at a high risk for colon cancer. So, when the GI team reviewed my case & recommended that I have my entire large intestine removed, I was shocked! I had visions of wearing a ‘poop bag’ on my side for the rest of my life. That’s something that happens to 80 year olds, not me at age 36!

 

I struggled with the decision. In 2006, when they told me I had a cancerous tumor in my liver, the choice was easy. We’ll do chemo, radiation, and the liver transplant. This was a gray area. I don’t have cancer, but odds are I could get it. When? What exactly are those odds? What’s involved with treatment? What is a "proctocolectomy"? Will I ever be able to have kids? How quickly could cancer appear? How much time do I need to take off work?

 

So, long story short, on Dec 2nd 2008 – I gave up a few more body parts. They removed my entire large intestine, my rectum (Oh my – how weird is that!? ), and my appendix (which is attached to the colon).  They took the bottom 1 – 2 feet of my small intestine and created a "J-pouch" and further up the line, the created an ilesostomy. So, I now an ostomy, a piece of my small intestine sticking out of my body, where wastes empty into a bag.

 

The good news… the post surgery pathology report showed NO CANCER! Hurray! Ok, so was it a mistake to have the surgery? You can’t think like that though. I’ve been down the cancer path once before & don’t want to risk it again.  Also, the ileostomy is temporary. After 3 months or so, they’ll perform a 2nd surgery & "reconnect my plumbing".  I’ll never quite be "normal" when it comes to GI stuff, but… I will go to the bathroom like a normal person again & not in a bag.

 

The recovery is taking longer than expected. The surgeon advised a 7 day hospital stay, which turned into 20 days! I was in for most of December & finally released on Christmas day. So, I missed most of the holidays. I’m still on medical leave from work, as my strength isn’t back yet, I take naps, am getting my appetite back, give myself IV fluids at home to stay hydrated, am taking 5 different medications, and figuring out my new medical attachments.

 

So, that’s where things are at. I plan to return to work in February. I’ve been spoiled in that I avoided the commute in this frigid weather. I miss being able to do things though & I’m having a heck of a time finding clothes that fit. It’s the first holiday season where I’ve lost 20 lbs!  My stomach sticks out though & I have this bag hanging down & an 8" incision which starts just above my belly button. I have to laugh when I look at my abdomen. Between my surgeries, I’ve lost my liver, gallbladder, large intestine, and appendix. Plus, I have 20" of incisions & 8 holes on my scarred tummy. You could play tic tac toe on it!  I’m grateful to be alive though, cancer free, and just trying to stay positive these days.  I hope you’re all doing well too.

 

Take care & God Bless!

 

Info re. Cancer Prevention & Detection available at American Cancer Society

almost 2 years post-Tx

Ok… I can hardly believe it’s been over 2 years since I started this blog!  In just 16 days I’ll celebrate the 2 year anniversary of my liver transplant. Yahooo!!

 

This past Saturday I attended the "Living w/ Transplantation" conference (sponsored by NKFI – they did a great job!). I sat in this room full of 100s of people (primarily transplant recipients + caregivers + healthcare professionals) and thought how amazing transplantation is.

 

I’ve been reading the book "The Puzzle People: Memoirs of a Transplant Surgeon" by Dr. Thomas Starzl, who performed the first liver transplant. It’s humbling to realize how many people sacrificed for this life saving procedure. The physicians and researchers who dedicated their lives to it, the patients who were grateful to be involved in the experimental practice of transplantation. For many of them it didn’t save them, but it bought them a few extra days, maybe a month. How at one time there were no anti-rejection drugs, and even the early Rx had some really awful side effects. Yet, as the transplant physician commented on Saturday afternoon, to look around the room at all of us – you’d never guess that we were transplant recipients. So true!

 

I recommend Dr. Starzl‘s book to anyone with an interest in transplantation or medical research. It really puts things in perspective. When I looked around the room on Saturday.. I thought how amazing that we are all here & alive! Thanks to all the people before us who made it possible. It also gives me hope and excitement to see what ground breaking advances still lie ahead.

Front Page News

The front page of today’s Chicago Suntimes shows a photo of two cute, twin girls and the bold text over their photo reads "THANK YOU, THANK YOU".

What are they so grateful for? This pair of 10 year old girls were born with cystinosis, a disease which resulted in kidney failure. Yesterday, Dec 6th, they both underwent a kidney transplant. Their mother’s gratitude to the organ donor and their family, whose loss saved her daughters’ lives, are the front page headline.

It always makes me happy to see these types of stories in the news. I know that there is a family today who is suffering due to the loss of a loved one. My heart goes out to them. It’s the one part of organ donation that is difficult to reconcile. I hope they can find comfort in knowing that their loved one’s final gift was to save the lives of 2 young girls.

To read the entire story, visit: Family’s Twin Blessing

Want to save up to 8 lives in just 30 seconds? Please visit: DONATE LIFE today and register to be an organ donor. 

Remember, a single organ donor can save up to eight lives and enhance the lives of 40 others.

National Donor Sabbath

“A minister and a rabbi walk into a hospital…..” click on the link to see how this story ends: http://religion.beloblog.com/archives/2007/02/now_this_is_an_interfaith_stor.html

 

November 9 – 11, 2007 is the 12th Annual National Donor Sabbath
Celebrate the miracle of organ and tissue transplantation.

 

During the weekend of Nov 9 – 11th we will observe the 12^th annual National Donor Sabbath. People of all Faiths are invited to join in this celebration of the “gift of hope” provided through organ and tissue donation and transplantation. Most religions in the United States either officially support organ and tissue donation or support the individual choices of their members. Temples, churches, mosques, and other places of worship that observe the National Donor Sabbath do so each in their own fashion.

Organ and tissue donation represents one of the highest forms of compassion and giving. Currently, there are over 97,000 men, women and children in the U.S. on the transplant registry and that number is growing. A new person is added to the list every 12 minutes, and sadly 17 people will pass away each day awaiting their gift of hope. Donor Sabbath provides an opportunity to educate people about organ donation and celebrate the life and hope it provides.

People often have misunderstandings about organ donation and are not aware of the new Illinois donor registry, which went into effect on 1/1/2006.

I’ve been fortunate to become friends with people whose lives were changed in an instant by organ donation. Some of them lost loved ones, but found comfort in knowing their loss saved the lives of others. I’ve talked to transplant recipients, who have such joy and appreciation for each day of life. I was blessed with the “gift of life” in 2006.  The experience changed my life for the better and strengthened my Faith in God. To me it’s a reminder that in all things, even earthly tragedies like illness and death, God truly does bring about good.

To learn more about Donor Sabbath, please visit the Gift of Hope website: http://giftofhope.org/NDS/index.htm

 

To learn more about organ donation or register in your state, visit the Donate Life site at: http://donatelife.net/

 

What is your religion’s official viewpoint on organ donation? To find out, talk to your clergy or click here: Religious Viewpoints

 

Where in the world is “Jaundice Jill”?

Hello folks! I’m back. I’ve written dozens of blog entries in my head, but haven’t managed to put any of them on paper (or computer screens).

Well, the summer was busy. I traded in my 100 mile daily commute for a monthly train pass, left my job of 13 years in the suburban, natural surroundings for a high rise building on the busy streets of Chicago. I met new coworkers and completed major projects at my new job. I survived my final week of school and managed to complete my research paper, presentation and final exam – albeit by foregoing sleep. I began volunteering at Children’s Memorial Hospital, took on the job of editor for the Organ Transplant Support group’s monthly newsletter and then… I stopped and caught my breath.

Being healthy and getting your life back after a transplant sort of motivates you to get out there and live life to the fullest. Sometimes it catches up with you though. So, once things calmed down I threw myself into a few weeks of intense relaxing! The thing is… I wasn’t happy then. Instead of unwinding, I felt lazy and guilty. I’d get home from work at 6:30pm, grab dinner (usually a bowl of cereal), go crawl into bed, watch TV, and go to sleep early. I did catch up on rest, but I didn’t really like myself.  I was wasting valuable time. I wasn’t working out. I didn’t keep in touch with friends or family. I wasn’t cooking. I didn’t clean the house. I was self-indulgent and I was miserable.

School starts next week. I’ve started making dinners again. I dug my gym shoes out of the closet. Bible study has started. I scheduled my Dr appointments. The Liver Wellness Walk is just a month away. I’m updating my blog. I’m happier again.  It’s amazing how much more content you are when you spend your time focused on other people and activities.

Autumn has always been my favorite time of year and I’m looking forward to the change in season and getting back to my normal busy schedule. I have so many other things I want to “talk” to you about. I promise, I won’t be gone so long this time. I hope you’re all doing well! 

August ’07 Updated

Greetings! Long time, no blog. I didn’t realize it’s been almost a month though! Oops. I’ve not only been neglecting this site, but also my plants, friends, housework, laundry…

 

I’ve been knee deep… waist deep.. no, make that in over my head, in researching medical journals the past 2 weeks. This Wednesday was finals for my American Healthcare Systems class. We had a take home essay final, a research paper, and a presentation due on the last day. I wrote my paper on ‘Living Organ Transplantation: the opportunities & the obstacles’. It was a fascinating topic & I learned a lot. Between school, new job, meetings, etc. I didn’t get much sleep though. I’m mentally spent & relieved to have a few weeks off school.

 

The job is fantastic. I’ve already been there a month! Hard to believe. I enjoy the work – even with production problems. The IT staff is a lot of fun though & help you keep your sanity when things go awry. When I was let go from the other job I sensed everything would work out well & it has. I’m still shocked that a tank of gas now lasts me 2 weeks. I used to fill up every 2 days!

 

Another new thing in my lifeis volunteering @ Kohl’s house. It’s near Children’s Memorial Hospital & like Ronald McDonald house charities, it provides a home away from home for families with sick children. Kohl’s house is specifically for children having organ transplants though. Most of the work will be housework, cleaning rooms, doing laundry, sorting thru supplies, etc. Obviously it’s very critical to keep things germ free. Hey, I’m on immunosuppresants myself. I get that. I start next week & am excited about it.

 

NOTE: Children’s Memorial Hospital does some amazing things. It’s a pretty special place. They’re in the midst of a big fundraiser this weekend with the local radio station. So, if you’d like to help out or learn more, visit their site: CMH Radiothon

Happy Friday!

The week has flown by! I’m happy, but surprised, to see Friday is here again. 

 

So, I had an appt yesterday morning with the transplant team & I’m in good health! 🙂 I had my monthly labs drawn on Tuesday & even though they looked ok I scheduled a visit. I had such a sore throat & was worried. Thankfully it’s all good. Per the nurse my throat doesn’t look infected. She didn’t think a swab for strep was even necessary. My sore throat starting to improve the eve before my appt & is nearly gone now. Perhaps not worrying about it even helped cure it!? I do believe our brain can help/hurt our physical body. So, think good & happy thoughts!

 

It was nice to see the transplant team @ NMH again. I’m part of a clinical research study on Adult to Adult Living Liver donation (A2ALL). So, I talked with their research person, gave them a half dozen vials of blood, took the 1 year post transplant quality of life survey.  There’s some hopeful & fascinating work going on in transplant research with the use of stem cells and how they could reduce the use of anti-rejection drugs. I’ll need to do some research on that & post the info. It was nice to see the familiar faces in the lab, talk to the nurse and staff about their summer plans. Plus, I always find it fascinating to interact with the folks in the waiting area. I look around for familiar faces and then try to guess who has had transplants, who’s waiting, which organ was it.

 

Well, I best be off & head into work. I’m sure it’ll be another busy day at the office! It’s funny how Fridays seem so much more celebratory when you’re working. So, I hope you all have a wonderful Friday & a lovely weekend!

Employment in a post-transplant world

Evening folks!

Well, I survived my 1^st week @ the new job and already feel very at home there. There’s plenty to keep me busy. This is only the 2^nd time post college that I’ve started a new job. It’s the first time post-transplant though. It’s interesting how that affects your perspective. While interviewing for jobs I made sure not to mention my volunteer work with organ donation or reference anything medical. I even took off my green “Donate Life” bracelet for the interview. I felt like a sell out for doing that. Employers are legally obligated not to discriminate against you, but health problems aren’t something you want to advertise. After all, a history of high medical costs & a 6 month medical leave aren’t things you put on your resume!

I find myself with new concerns, which would never have crossed my mind pre-transplant. First, there are the germs! I now take public transportation to work & often put my backpack on the floor of the train. I don’t even want to think about all the nasty things I’ve picked up doing that. I’m in a new environment, using the phone, mouse, and keyboard of a former employee, shaking hands with new people, etc. I don’t want to be germ-phobic… but I know I have to be smart about it. I’m afraid I was a little delayed in disinfecting my cubicle.  I brought in the wet wipes today & cleaned up my work area. I have been carrying my hand sanitizer though & washing my hands regularly.

Then there’s the social aspect.  My team is a great group of down to earth people. They work hard but like to have fun too. There was talk of going out for drinks after work. Someone asked me if I drank? I wasn’t sure how to respond to that. I don’t want to hide the fact that I’m an organ recipient. Organ donation is a cause I believe in & I’m proud to be a recipient. Organ transplantation is a miracle of God and the acts of the physicians, nurses, and especially donors, display the generous nature of human beings.  However, it’s a rather personal thing. I think it may be too soon to dump that fact on people I just met. I’m not sure how they’d react to it or me. So, in regards to their question, “do I drink?”, I replied “not as much as I’d like to.”  I figured this was non-specific, but honest. My coworker laughed and presumably took it to mean I don’t go out as much as I’d like. I don’t feel peer pressure to drink, and giving up alcohol is a minor inconvenience compared with one’s life. I also don’t want to come across as an uptight, non-social person. Honestly, no one has told me I can’t drink. I just don’t feel it’s right though. I have someone else’s liver. I’m not going to jeopardize that gift in anyway. So, I avoid alcohol, Tylenol, and any extras that my liver would need to process. That’s just my personal choice. I figure I’ll save my first post-transplant drink for a very special occasion.

The past few days I’ve had a sore throat. It’s silly, but it concerns me. I figured it was just from sleeping with the A/C on. Although, today I realized it wasn’t just in the morning that I felt it.  So, where do you draw the line between being cautious and paranoid? As it turns out, I’m due for my monthly blood tests (CBC, CMP, and Tacrolimus) anyways.  So, I’ll take an early train into the city tomorrow and go by the hospital before work.  I can’t help but remember last July when I had no symptoms (other than a minor sore throat) and was diagnosed with the CMV infection. I was admitted to the hospital and then spent 3 hours/day giving myself an IV for several weeks. I don’t know how I’d fit that into my schedule now!  I truly doubt it’s anything serious like that. It’s just a reminder though, that while I’m feeling well and have been unbelievably blessed, I’m not quite “normal”. Ok, my family/friends will tell you I never was! 😉 But hey, I just remind myself how the organ transplant really opened my eyes & made me appreciate all the things I CAN do.