Please join in supporting me and my family on my dual transplant journey. This page will provide updated information and updates.
Operating as usual
Thank you for all the love, support and prayers this past week. After my hemoglobin dropped into the 5s, I received 5 units of blood, 10+liters of fluid were removed (or about 20lbs) several covid tests (all negative) and an endoscopy to complete it all and I am finally HOME and resting feeling pretty good!!!!
My cardiology team, hepatologist, and myself are keeping a close eye on my GI tract, and stroke symptoms and I am not on my blood thinners at this point. I have an appointment on Thursday with the hematologist so they will check to ensure all my labs are still stable.
As we continue through this journey, I will keep everyone informed.
I have posted a few pictures of my stay!
Short update for a rocky day. Its confirmed....I have a GI bleed somewhere. However, my hemoglobin is rising, which is a good sign and I am feeling better overall. I still will be transferred to Northwestern as soon as a bed becomes available. I will be having a GI scope with a repair from the bleed.
Hoping I can be transferred tomorrow and have the scope test and get it all taken care of and get home.
Thank you for all the prayers and well wishes.
So it’s definitely been some time since I have provided and updated. Hope everyone is staying healthy and safe and enjoying the holiday season.
Couple weeks back I came down with a pretty bad sinus infection. No Covid thank goodness! So I was home taking it easy recovering from that and suddenly developed some Gastrointestinal Issues that stuck around for quite some time...Finally feeling better from all of that.
With all that being said, I was keeping in contact with my cardiology team. Unfortunately as time was going on I began to hold more and more fluid....so yes, here I am back in the hospital at Lurie Childrens to get some IV diuretics. They also discovered that my hemoglobin levels have dropped down to 7.5. So it looks like I will be getting blood transfusions....as for right now that’s about all I know and I will keep everyone posted and up to date.
Thank you again for all the continued support and prayers.
Life is Better with F.R.I.E.N.D.S......it’s been some rough days for all of us with COVID around and the holidays approaching...But so thankful for one of my best friends, Laurel Kullman. She dropped this special gift off on my front porch the other day!!! Definitely put a smile on my face! I can’t wait until COVID is gone and I’m feeling healthier and we can all get together again.
Well, unfortunately this past week has been a little bit on the tough side, but nothing I can’t handle! 💪...I have been on quite a few antibiotics for different small infections that I have had. We all know antibiotics tend to throw off your body, especially me. So this past week I filled up with fluid once again. Yes, my body hurt, my stomach bloated, fingers can’t bend, my chest hurt, shortness of breath, all that good stuff.....On Friday I spoke with my cardiology team and we decided to be very aggressive with getting the fluid off as an “outpatient”. We all know, covid numbers are on the rise, so avoiding an admission is what is best for me. So treatment started at home Friday evening, and thus far it’s working, slowly but surely! Thank Goodness! So tomorrow I have to meet in person with my team to ensure things are heading in the right direction, and really hoping to avoid an admission!!!
On a lighter note, as I am staying in, I finished painting my holiday yard piece for our “Winter Wonderland”. Also, we carved our pumpkins for Halloween, took sometime to spend with my sister, brother-in-law, and nephew.
I want to remind everyone that I am very thankful for all the messages, texts, phone calls, cards, etc. It all means a lot to me and makes thing a bit easier.
I finished my last iron transfusion for now!! For the most part they went very smoothly just waiting for results, which usually take about 6 to 8 weeks. I have to go back to see the doctor the beginning of December, and have all the labs drawn again and decide if I need more transfusions or not.
Last week I had my 6 week cardiology appointment. Still don’t really know if the new medication I started is working or not as many factors play into it, including my iron levels. My creatnine levels have still been bouncing around. They did increase my medication. Hoping it does work and hopefully it will help rid some of the extra fluid i have. Most of my other labs were stable which is good, and I will go back the beginning of December.
Just to ensure things are stable I will be having a liver ultrasound the beginning of November. So I’m hoping all things are well.
Thank you for the continued prayers and words of encouragement. It is very much appreciated.
[10/11/20] Just asking for some good vibes for this week. I start m Iron Infusions on Tuesday and have a cardiology appointment on Wednesday! We will discuss how my new medicine is working for my kidneys along with any other plans to try.🤞🤞Hoping for all good news!!!
Ok, it’s been a bit of time since I provided an update. Last week I went for lab work and found that my kidney levels were at an all time high, but that doesn’t mean the medicines aren’t working, in fact it’s the opposite. So we dialed back on the diuretics. I met with hematology yesterday since my blood counts have been very low for quite some time now. They ran a bunch of blood tests to rule out any underlying conditions. Today, I got word that all labs looked good except my iron levels are severely low, so now I will be getting iron infusions as soon as insurance approves. Also, my kidney levels were back down to a more normal level for me! Hooray!!! However, since we dialed back on the diuretics, I’m slowly filling up with fluid, so we made a few adjustments so hoping I can get the fluid off. 🤞🤞🙏🙏
Today, I had a nice socially distant lunch with a few friends. I made homemade pizzas along with a new desert receipe. Thanks to The Pioneer Woman - Ree Drummond attempted her confetti blondies and they were delicious!!
So not much has been going on....taking one day at a time. I have an appointment on the 29th with the hematology team to discuss options regarding my low red blood cell count and hemoglobin. I return to the cardiologist on October 14th and that point we will see how the new meds are working and discuss further steps/options if needed to help my kidneys. With the weather being a bit cooler and not as humid I’ve been trying to ensure the dog and I get in a long walk each day. I also have been helping my dad with some painting and getting all our Christmas decorations fixed up for the Winter Wonderland in his yard.
After scrolling through pictures I found all the ones from our trip to California. Our trip may have been a bust, but we sure did meet some amazing people. We stayed at Hollywood RV Park and everyone was so caring, welcoming and helpful. Steve, the owner is the most genuine person you can ever meet. From the minute we pulled in to the park and he helped us back in our RV to spot #51 to the time we handed him our keys he was great. He new our story and what brought us to California, that he made sure everyday that we were taken care of, and felt at home as much as possible. After everything that happened at Cedar Sinai, he came over and prayed for me and with me. He really is someone we will remember forever.
On Wednesday I met with my cardiology team to discuss our next steps. Considering the fact that I am pretty sick, things really are maintaining except for my kidney functions and blood counts. Since I am high risk and transplant is a major surgery, first thing is first....we HAVE to get my kidneys back to working normal. There will not be a program that will accept a high risk patient with any type of kidney function issues. Its way to dangerous.
There are several things we can try to help the kidneys, the first is a medication called midodrone. This will constrict blood vessels and force more blood flow through the kidneys allowing more fluid to be drawn out of the blood stream. Which will hopefully require less diuretics. Next, I will meet with a hematologist in order to start IV Iron infusions as my red blood cells and hemoglobin are pretty low.
Once we can get a handle on the kidneys and the blood counts back up, we will introduce transplant again to Northwestern and University of Chicago. A plus side for me.... after my cardiologist spoke with the team at Cedars Sinani they indicated that they will be publishing and sharing their case studies on patients with high antibodies, meaning that it is potentially possible to have transplant at a hospital near my home.
In the mean time, I am doing my best to remain positive and upbeat about our plan and hope to enjoy the fall weather with some friends and family (of course with the help of social distancing and masking)
This has been a very rough journey especially the last several weeks, so please continue to pray for me and for my family. We really do appreciate all the prayers, kind words, and words of encouragement.
I got more flowers from the Kuh family to help cheer me up. Thank you very much! 😃
I want to give a HUGE Thank You to Tim, Mike, Brian, Scott, Eric, Joey, and Ralph for the beautiful flowers! They truly made my day. They are up all over the house and smell so amazing. Thank you again! ❤
Trust in the Lord with all you heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take. – Proverbs 3: 5-6.
This past week, I traveled across country to start a new journey and new life in Los Angeles as I waited for my heart and liver transplant. After meeting with the heart team, and undergoing a cardiac catherization, the team determined that transplant was not an option for me anymore at Cedars Sinai Medical Center. My hopes for starting a new life, my dreams to new beginnings, and my look on life was shattered, broken, and torn. To say the least, I was devastated.
Cedars-Sinai was supposed to be the Mecca for transplant patients with High Antibodies like I have. We were worried that they might say that my antibodies were too high. But my Dad kept saying that Cedars knows everything about me and that they would not have us travel 2,200 miles to turn me down. Well, guess what – that is exactly what they did. Not because my antibodies were too high – I was told that it was because I have AVMs. AVMs are something I have had for 25 years. Every Fontan patient has AVMs. They form in the lungs and allow blood to bypass my lungs, which is why my oxygen saturations are lower. This is the first time that I had heard that AVMs could be an issue, so you can imagine my disbelief at what the doctors were telling me. I really felt like they had already made their decision before I even got there.
I immediately contacted my team at Lurie’s. Jeni could not believe what I was telling her. I was discharged from the hospital (BTW – Lurie’s and Northwestern are much nicer hospitals) and I went back to the RV Park where we packed up and left for home on Saturday morning – my LA / Cedars-Sinai adventure officially over. Leaving was very bitter-sweet. I was happy to be going home but I had “moved” to LA to start a new life with a new heart and liver – thinking when I returned, I would be a “new” person. Now it was back to Chicago to regroup and determine what the next steps would be. The doctors at Cedars did mention several times that the treatment for High Antibodies could be given to me at home so hoping that maybe Northwestern might be able to now do the high antibody treatments (it has been almost a year since they turned me down). Also, the doctor that told me they would not transplant me mentioned that we could check with other transplant centers like Mayo, Stanford or Pennsylvania. But first things first – my team wants to get the fluid off and get my kidneys calmed down and happier (Jeni told me that Cedars told them that one of the reasons they would not transplant me was because of my kidney numbers were too high).
So, I will meet with Dr. Defreitas and Jeni on Wednesday to discuss our plan going forward.
Please continue to pray for me!
Well we made it to Los Angeles!!! I am officially undergoing the evaluation at Cedars Sinai. I met with the congenital heart doctor, ran a bunch of tests, had to do a COVID test due to having a procedure today and then a cardiac catch tomorrow. I will have to update more once I know. At this time its just a bunch of tests...
Here are some pictures from our journey here.
It’s crazy to think that it has been 2 ½ years that we have been talking about a heart/liver transplant. Last year at this time we were unsure of what was going to happen due to my high antibodies. But then along came Cedars Sinai who is known for lowering antibodies, it felt as if my dreams came true. Never in a million years did I believe the day would ever come that I would have to pack up my life and move to LA for several years. The past 2 years I have had uncountable doctor’s appointments, a billion tests, many procedures, a million blood labs, several hospital stays, some medication changes and the list continues on....
Now, with great anticipation, on August 13th my parents, husband and I will be traveling to Los Angeles, California to begin my long-awaited journey at Cedars Sinai. I have my very first set of appointments on Monday, August 17th starting at 7:30am and my first procedure on Wednesday, August 19th. Praying that the week brings all the answers that we need to hear.
Over the past few weeks, I have had lots of mixed emotions saying goodbye to some of my family and closest friends. However, I do know they are my greatest support and are always in my corner. I can not wait for the day I return to begin a new healthy life.
I want to thank everyone for the continued support and words of courage and strength throughout this journey.
Now its time to get the show on the road....
Heart Strong - Journey to Transplants
2 weeks to go...
My journey begins 8-13-20
[07/13/20] After 8 long days in the CCU at Lurie Childrens....I am finally home, and resting!!!!
...or waiting for one. ❤❤❤
Good Morning! Not a whole lot to update.. I am still at Luries recieving IV diuretics and milirone. Yesterday, I had some issues with my heart going into ventricular tachycardia. The team of doctors are keeping a close eye on it and keep monitoring. Otherwise things are pretty boring. Fingers Crossed that I can come home this weekend.
On another note, our traveling plans to California are coming along!!! I can't believe its about a month away! AHH!
I was admitted to Lurie Children's Hospital yesterday to start a new drug that helps your heart pump better with heart failure. In the mean time, I also am receiving IV diuretics as I am fluid overload. Last night was pretty uneventful except for my blood pressure dropping low. The nurses and doctors are keeping a close eye on everything to make sure it does not drop too much more.
I did have to have a COVID test (negative) since I was being admitted. The test was not bad at all. I was totally expecting way worse!!
The plan for today is just monitoring my blood pressure, and all the IV meds, and hopefully by Friday I can go home!
Boy! This has been a busy week! Monday, I get a call from Cristy from Cedars-Sinai Hospital. She tells me that she has been assigned as my pre-transplant coordinator, and that the social worker will be calling me for a pre-evaluation. She says it might be this week but could be next week because of the holiday. Then, on Tuesday, I talked with Jenny from Children’s. She tells me that because of my fluid retention they are thinking of admitting me and putting in a PICC line so they can give me Milrinone, which is used to treat heart failure. The initial plan was to admit me for a couple of days to insert the PICC line and teach me how to administer Milrinone at home. But then plans change. I get a call from Jenny today – I will be admitted on Sunday for a week of treatment but no PICC line.
Then later this morning, I get the call from the social worker from Cedars. After some discussion, she lets me know that I have passed all of her requirements and she will let the transplant team know. I figured I would maybe hear from them sometime next week. I was wrong! Within two hours I received a call from Cristy (my Transplant Coordinator) letting me know that I have an appointment with the cardiology team on August 21st! OMG!!! Up till now, Cedars was just an ideal … BUT THIS IS NOW REAL! I am excited and terrified at the same time! We have a lot of planning and work to do before we go and only 6 weeks to get there.
I was born with a severe congenital heart defect called Double Inlet Left Ventricle and Transposition of the Great Vessels. My first surgery was at 28 days old. Essentially, the wall between the chambers of my heart did not form properly, resulting in having only 2 chambers to my heart instead of 4 – affectionately referred to now as single ventricle. When I was 6 months old, I moved to the Chicago area with my family and began being treated at Children’s Memorial Hospital which became Lurie Children’s Hospital. Having access to some of the greatest doctors in the world enabled me to live a fairly normal life. I was able to graduate High school and continued on in education, earning a Master’s Degree in Health Administration. I was offered a position with Advocate South Suburban Hospital in the Medical Staff office and has become an expert in Medical Credentialing.
As I have said, I have been able to live a fairly normal life, but it has not been without struggles. I recently turned 34 in October. In those 34 years, I have suffered through 7 heart surgeries, 4 of which were open heart. I was in the leading group of kids who underwent a surgical procedure called the FONTAN procedure. My doctors have told me that I am in medical textbooks and articles (of course, not by name). I also am a member of an Adult Congenital Heart Disease (ACHD) support group called the Zipper Sisters. We joke saying we should have had zippers installed because we have been opened so many times.
As if 7 heart surgeries wasn’t enough, I had to undergo surgery on her knee, wrist, elbow, gall bladder and wisdom teeth. To top it all off, I suffered a stroke 2 years ago due to AVMs in my lungs that allowed a clot to get to my brain. After months of intense rehabilitation, I was able to return to work. I also have suffered with pneumonia, ovarian cysts and multiple casts on ankles and arms, thyroid issues and was recently been diagnosed with osteoporosis. During the last year I have been suffering from episodes of syncope that prevent me from driving.
I have had to battle my entire life and has triumphed to some degree. But now I face the biggest battle of my life. My heart is beginning to weaken. In addition, due to the way my blood circulates, I have developed cardiac cirrhosis of the liver. The doctors have told me that I will need a heart and liver transplant. Without it, I will not live to see 40. There is a complication, though. Because of all of the surgeries and transfusions I have had, I developed what they call “High Antibodies”. This makes it much harder to find a suitable donor, plus it increases the risk of rejection. The one thing in my favor is that I will be getting a liver, which will help filter out some of the antibodies.