Help HOPE Live for Ross Rudnitsky

March 23, 2021

Join us to Welcome Home Ross & Donna

This is not an April's Fool's Joke! Donna Miller and Ross Rudnitsky are coming home to continue to heal after Ross received his gift of life just a short 6 months ago. Please join us as we celebrate their homecoming with a parade of cars!

Thursday, April 1st at 6:00 pm

429 Prospect Avenue, Wilmington, DE 19803

We are meeting first at 5:45 pm at the AT&T Wireless parking lot on 202/Concord Pike

We will line up and follow the lead car like very slow moving train while they are outside. We asked what Ross' favorite places for gift cards and they are: Brewster's, Panera, Big Fish, Mazzellas, Stanley's, Acme, Giant and Wawa. We will have a basket available as we line up, and we will "gift" the basket to Ross during the drive by. If you are unable to attend, but would like to give them a card, please bring it to Stacey Friedland, Jennifer Michaels or Karolin Lipman any time prior to the drive by. Rain Date--Monday, April 5th (Sponsored by the Tikkun Olam Committee at Congregation Beth Shalom and #TeamRossiRoo)

February 22, 2021

So much has been happening and nothing, all at the same time if that is possible. Ross has continued to do very well and advancing with cardiac rehab. After an hour of working out, he is able to walk the ¾ mile to the apartment which is amazing. He does rehab twice a week, but other than that, he has been pretty much relaxing and healing. His arrhythmias are decreasing so no further intervention needs to occur. Medications are slowing being weaned down which is great news. One of the side effects of prednisone is mood swings and Ross has been experiencing them big-time. We are hoping now that the dose is below 5 mg, he will start feeling more like himself.

The great news is that we are booked on flights to come back to Delaware on March 31, 2021! Ross will be almost 7 months post-transplant at that point. We are so looking forward to coming home!

Just as we had to establish an apartment in Los Angeles, the task of disassembling the apartment also has to happen. We will be attempting to sell all of the stuff we purchased and, will be using the UCLA Buy and Sell app which was so helpful to us originally. Anything we can’t sell, we will be donating to a wonderful organization called Ava’s Heart which is a non-profit organization that helps families with housing for three months after transplant. Ava is a wonderful woman, who unexpectedly went through a heart transplant herself and has been paying it forward ever since.

Los Angeles was on lock-down due to COVID for months so we did not get out much but over the last couple of weeks, once things opened up, we have gone on a few adventures (to Downtown Disney, The Grove and had a wonderful lunch outside, and to a Cat Café so we can pet and play with cats that are up for adoption. We miss our cats, Pip, Lucy, Duncan and Gigi so much and although we wish we could have adopted all of them, we have our two cats each waiting for us at home!

Ross has gotten his first COVID shot and his second one will be on Tuesday. I’m still not able to get my shots so I’ll wait until I get back to Delaware. We have still been very careful as Ross is immunosuppressed and has to be very careful. The first year after transplant is when he has to be the most careful but luckily since almost everyone is wearing a mask, it makes it much easier for him.

Several people have asked about Glenn and I’m happy to report that he has been out of the hospital since the beginning of January and doing much better. He is just now starting cardiac rehab as he was very weak when he left the hospital. We saw him last Thursday at clinic and even with the mask, hat and clothes, he is looking so much better. Unfortunately, because of COVID, we have not been able to spend any time with him or his family which is difficult.

Skylar who was the third patient waiting in the hospital, did not get his transplant and went back to Washington state. They hope to come back to LA hopefully in March to restart the process over. This Saturday and Sunday February 27-28th, there is an art auction to help raise funds for Skylar. It has been posted on Facebook but you can search “Circle Shaped Love” for more information. I’m sure they would appreciate any support given.

Please keep Ross, Glenn and Skylar in your thoughts and prayers as they continue their heart/liver transplant journey.

It will take a bit of time for us to get back to regular life as so much has happened and changed; however, we know for sure that without the love and support of our friends and family, we wouldn’t have been able to manage and will continue to need that same love and support at home! We are especially thankful for the donor and his family who enabled Ross to have his chance of a healthy life!

We will see everyone very soon (5 ½ weeks) but who is counting!

November 28, 2020

I know it has been a few weeks since my last update and wanted to let you know that I have been out of the hospital for about 5 weeks and what a difference in this short period of time. I went from using a walker to go everywhere, to not needing a walker at all! I've had to go to clinic at least twice a week and this week, I only had one video appointment. I am still on tons of medications although I've been weaning off of some of them but they have been replaced with supplements such as iron, potassium, magnesium and such because my blood work has been varying each week. We have found that there is a delicate balance with all of my numbers and it is hard to keep up with. I think we finally got to the proper dosage of one of my anti-rejection medications which is great! My mom and I sit on Monday nights and fill my pill box for the week. It takes about 45 minutes to make sure everything is accurate. I finally got my staples out for my liver thank goodness because they were really pulling and stopping me from standing up straight. That is one thing I need to work on is my posture, because I got used to rolling my shoulders forward because of the pain/discomfort in my chest and abdomen. Mom has been cooking high protein meals for me and I'm getting used to being pampered. What are the chances she will continue to cook for me when we are home and I'm living at my own place? She says zero but I'm sure I can try to talk her into it. I'm able to do most everything on my own now which was a big change because just two weeks ago, I couldn't open a can of tuna myself. All this means is that my strength is coming back with the help of PT and OT. In about 2 weeks, I'll be starting cardio rehab twice a week. Mom is looking forward to me getting pushed a little more and see what my new heart can do but I'm not used to pushing my body so it makes me kind of nervous. Although COVID is bad here in California, we have taken some car rides and yesterday we went to the beach in Malibu. I'm not such a beach person but my mom loved it!

I have loved every card that has been sent to me and really appreciate everyone's support. I know I haven't been in touch that much and know that people have texted me, but I'm now just feeling more comfortable in talking and sharing. The entire experience has been really overwhelming and I've taken the time I've needed to heal both physically and mentally but I know that it will take even more time. The doctors said that I should start feeling more myself at about 3 months post transplant and I'm current at 11 weeks so they do know what they are talking about. The doctors have been so happy with my progress and recognized how hard all of this has been on me and my mom.

I know that Tuesday, December 1st is Giving Tuesday and Help Hope Live is not charging any fees for credit card processing. In addition, Facebook is matching funds donated to organizations such as Help Hope Live. I know everyone has been so generous in helping me raise funds to help me pay for all of the medications I'm on and unmet medical expenses which is running at about $200 a week in co-pays for doctors visits. We will be posting a fundraiser on Tuesday on #TeamRossiRoo so even a small donation will go a long way with the matching funds from Facebook. Anything you can do to help, would be gratefully appreciated! I can't wait to see all of you when we return to Delaware in the March/April timeframe! Thank you again for everything! Love, Ross (and Donna)

October 13, 2020

Change...

As the saying goes, change is inevitable and so much has changed since my last update 10 days ago. The trach that Ross had to get due to a lung infection and fluid in/around his lungs was downsized where he could talk but still couldn't eat. That changed quickly and last Thursday night--October 8th, the trach was taken out and miraculously Ross was able to start eating after a full month of no food. He passed his swallow test and he was thrilled. His first meal was spaghetti bolognaise followed by meatloaf. Yes all of this in one day, but later he said he may have made a bad decision to eat so much because his stomach really hurt. It was ok because he had the biggest smile on his face.

Then on Friday, October 9th, Ross was released from the ICU to the step down unit where it was much quieter and Ross thought he would get more sleep. Sleep is one of those things that hospitals don't like you to get and although it definitely is quieter, someone is constantly in and out of his room for blood draws, monitors beeping and IV's needing to be changed. Ross has gained some of his strength back and is walking more and handling daily care functions himself. He said the other day that he feels like a computer that was just rebooted and he is trying to figure everything out and his new norms. As Ross continued to progress over the weekend, the conversation quickly started about releasing Ross from the hospital later this week.

Ross and I are both so excited but also really nervous. We started learning about the 19 medications he will be on when he leaves the hospital as well as the physical and occupational therapy he will receive after he is released. He will need to be seen in the outpatient clinic on Mondays and Thursdays for a series of tests and lots of blood work. This routine will last about 3 months depending on how he is doing and then hopefully go to bi-weekly visits. They also said not to be surprised if he has to be readmitted for a couple of days here and there due to fluid retention or adjustments of his medication as recovering from transplant is very tricky.

We have had several education sessions and met with the pharmacists learning about his medication do's and don'ts. We are learning about food restrictions and food prep precautions we will need to take. One of the restrictions is that he can't garden for at least 6 months and can't have fresh flowers or plants because of the bacteria in plants/soil. On the food front, he is really disappointed he won't be able to have lox and won't be able to have any meat that isn't fully cooked through so there goes the steak medium rare he would normally love. On the bright side, he can still have small quantities of red meat as long as there is no pink in the center. Medication costs for this first six months will be about $1,000 per month and as more medications are slowly weaned off in the 2nd six months, we hope to get some of the costs down. We are so thankful that we did some fundraising before transplant and COVID as those funds will help offset these costs and the costs of all of the co-pays related to the outpatient visits he will have in the first 6 - 12 months post transplant.

So much is happening and so very quickly. Later today (Tuesday), he is having a heart biopsy which is something that is normally done weekly for the first one to two months and then every other week for awhile and then monthly, then every three months, etc. The biopsy is to check for rejection so they can adjust his medications proactively. Tomorrow we have more education sessions and I am getting the apartment ready for him to come home. His new bed is freshly made, I found a big pot to make soups and stews which are some of his favorites and I have to go food shopping tomorrow night or Thursday morning to get ready for him to be released. That's the other thing that is crazy about hospitals, they say discharge is at 11 am; however, who knows when he will actually be discharged. It could be 8 pm at night.

Change is the word of the week but despite our nervousness, Ross can't wait to leave the hospital and get some good sleep. A shower is also something he can't wait for and I ordered a shower chair so he feels more secure as he gains his strength back. I'm so looking forward to having my boy "home" so I can take care of him and help him gain his strength back and the almost 30 lbs he lost in the last 4 weeks.

We have received so many cards to the hospital and to the apartment, and we have read each and everyone and can't thank you enough for all of the love and support. Your text messages mean so much to me and there are no words to express my gratitude for the financial support to help get the apartment all settled and ready for Ross to come "home". We plan on staying in California for at least another 6 months depending on how Ross does. Luckily that means missing out on the Delaware winter and the cold! Our world will stay pretty small as the apartment is less than a mile from the hospital but the weather here is beautiful and we hope we will get to go outside and enjoy it along with walks on the beach while staying safe!

I'm trying not to get my hopes too high that he will definitely get out on Thursday as things change so quickly and it could get pushed off a day or two! Please continue to keep Ross and me in your prayers as I know all of those prayers from all over helped us get to this point! Love to all of you! ❤️ Donna & Ross

September 14, 2020

The two pictures I just added was one of Ross, Glenn and Skyler the night Ross was taken down to the OR for his organs. Skyler who is also waiting for a heart/liver is to the left and Glenn is to the right of Ross. The 2nd picture is of Ross with what he called his "porn stash". I trimmed his beard but didn't do a good job at all. There was just a few holes here and there, so he shaved on the beard and kept the stash!

September 14, 2020

The last 6 days have been a rollercoaster of emotions. On Monday, September 7th the doctors told Ross they have organs for him but they wouldn't be operating until Tuesday, September 8th around 5 pm. That became 6 pm and then 7:15 by the time they finally took Ross down to the OR. We got the "go" at about 9:30 pm. Surgery lasted 19 hours which was excruciatingly long and only got updates every 2 - 3 hours. There was a lot of scarring that had to be dealt with from previous heart surgeries, packemaker surgery and bowel surgeries in addition to a lot of bleeding. I finally got to see my boy at 6:00 pm on Wednesday, September 9th. So amazing that he has a new heart and liver and got them on what would have been my mom's 90th birthday and you know she was watching out for him and making sure he was ok. They were not able to close his chest, and as expected they did not finish his liver connections. It was pretty creepy but then cool to be able to see his new heart beating! For the past week, he has been heavily sedated, on a breathing tube, waiting for bleeding to slow down/stop, which it has; along with getting him off of many blood pressure medications. They have to wean him slowly and he is making good progress. Each day they say that they will go in and close his chest in the next day or two but it still hasn't happened. His neuro exams are very positive and today, he squeezed my hand and opened his eyes and looked at me and shook his head "no" when he was asked if he was in pain. He has a low grade fever that started last night and they are giving him antibiotics. The hope is they will take him down to the OR tonight and complete his liver connections and god willing, close his chest. There are no words to express how much everyone's love and support has meant to us. People are praying around the world for Ross and I know it has made a difference and can feel everyone's love around both of us. Please continue to pray for Ross as he continues this unbelievable journey. He has such a strong spirit and has shown so much strength and perseverance over the last 10 days. I can't wait for him to talk to me and ask what happened as he'll have no memory and all he'll want to know is when he can eat...that's my Rossiroo! We will keep everyone updated through this site and through Facebook at #TeamRossiRoo. Thanks to Jennifer Michaels for doing such a great job with the updates. I also want everyone to pray for two more families. The first family is of the donor who gave Ross such an amazing gift of life. The second set of prayers need to go out to Glenn Barnard and his family. Glenn also received organs a couple of days after Ross here at UCLA and he has been struggling. Both Ross and Glenn are amazingly strong and have been through so much in their life. I know they both will continue to fight to live their best life but it has been really hard for me and I know for Glenn's parents and wife.

September 7, 2020

Update from Donna and Ross : Last Friday night after we were told that they found a heart and liver for Ross Rudnitsky. It all began at 6 pm when two doctors came to tell him the news. From that point on, lots of blood work, covid test, urine sample, etc. and at 3 am they came to get him. It was an emotional rollercoaster for hours. I was able to go down with him and the two other guys who are also waiting for organs got up to see Ross off. The last step in the process is for the surgeons to see the organs. After waiting for almost two hours, they called to tell me that it was a no go. We found out later on Saturday there was a problem with the liver. It was really hard and emotional to get so close. We both have been mentally and physically exhausted but now know it can happen at any time and we just have to keep praying for the perfect organs for Ross. Please keep him in your prayers and we truly thank everyone for all the support, kindness and love!

August 9, 2020

As you are all aware, my mom and I went to UCLA the week of July 19th for evaluation for my heart and liver transplant. We started the evaluation on Monday with meetings with doctors and blood work, etc. On Tuesday, I was scheduled for a heart cath, liver biopsy, endoscopy and an esophageal echo. My mom said that the procedures were really long as I was taken back at 7:30 am and didn’t get out from the procedure until 2:15 pm. Mom was getting really worried, and then the doctor came and talked to her. Everything went ok and they actually coiled a couple of my collaterals which is why it took so long. The doctors insisted, not recommended that I get admitted and finish the evaluation while being in the hospital. When I found out that was the plan, I was pretty upset that I would have to stay in the hospital. At the time, I did not realize that I was not going to come back to Delaware at all and stay in the hospital.

My mom went back to Delaware after a week and packed all our stuff up to bring back to California. While she was in Delaware, I had a PICC line put in, had another endoscopy, and then I finally got the great news that I was approved for listing. I then had another heart catherization to have the rest of the collaterals coiled. It was a really really tough week especially being by myself, but I am now officially listed for transplant as a Status 2 which is pretty high up on the list.

The plan is for me to stay in the hospital while waiting for transplant. They have no idea how long the wait will be; however, they say that Californian’s are more likely to be organ donors but finding just the perfect match for me is really important. I could be waiting weeks to months.

My mom got back about a week ago and her car arrived on Thursday which had my Play Station in it so now to help pass the time, I can play some games and watch movies. I’m working a little everyday, but I have to get into a routine. My mom brought me cards and pictures made by Emma, Jenna and Henry and I have them hanging up in my room. I love them! If you want to send me an e-card, you can do it through the hospital for free. The website is: www.uclahealth.org/ecards. Click on the categories of cards, pick a card, write a message and following the directions. It’s that easy. You will need my full name and email which is: Ross Rudnitsky and my email is [email protected]. I think we should circulate this information and have it go viral so that I get in the Guinness Book of World Records for getting the most ecards at UCLA (if there is such a thing). You can also reach out to me by Facetime, Zoom, or Duo as I would love to see and talk to everyone!

My mom is looking for a long-term place to live but it's really expensive here in LA so any funds donated to Help Hope Live will help me post-transplant with all of my un-reimbursed medical expenses which will be a lot!

I want to thank everyone for following and supporting me and my mom on this journey. I know it won’t be easy but I’m looking forward to feeling great for the first time in my life.

July 2, 2020

Hi everyone! I know it has been a while since my last update but wanted to bring everyone up-to-date on what has been going on. In the early part of the year, we were working on trying to get to a few new hospitals so I could hopefully get listed again for my heart/liver transplant. We were supposed to go to UCLA in early April, but due to COVID it was postponed. I found out last week that we are heading to California on July 19th for a week for evaluation and testing. I will be a human pin-cushion as I'll be going through a heart cath, liver biopsy, endoscopy, major blood work, CT scans, x-rays and a bunch of other tests and meetings. Hopefully, everything will go well and I'll be able to be listed which means we'd have to move out there. On a work front, I've been lucky that I've been able to work from home and have pretty much staying in my place since I'm at particular risk. I've also been fighting a little bit of fluid and developed a cough about a month ago and am going for testing at Penn on Tuesday to make sure it isn't fluid building in my belly and lungs. I've posted a picture of my quarantine hair as well as a picture after I finally got it cut last week. I'll be posting more over the next month as we go through the testing and hopefully taking the next steps to be listed. Thank you for everyone's on-going support and love! Ross

January 21, 2020

I know it has been quite a while since my last update but I wanted to bring everyone up-to-date with what has been happening since November. In late November, someone I know who was listed for transplant for 2 years got a call that he was inactivated from the transplant list. This was upsetting and shocking to his family and to us. I contacted Penn and was told that I was still listed and my status was the same. It was a relief! However, in early December I got a call that the doctors wanted me to have a CT scan of my chest. When we investigated further we found out that patients were having issues with something called collaterals during the transplant process. Collaterals are extra blood vessels that form to help provide a blood supply to my heart because of the way my heart functions. It is normal for all heart patients like me to have collaterals but the doctors have determined that having too many collaterals significantly increased the risk of hemorrhaging during the transplant. I went for the CT scan in early December and had a follow-up appointment shortly after that. The doctors wanted to take a look at my scans from last January as well as the new one to determine the level of collaterals. We heard from my transplant cardiologist on January 7th and was told that the number of collaterals that I had were significant. They feel that the risk would be too great to move forward with the transplant and a decision was made to deactivate me from the transplant list. This was beyond devastating to both me and my mom! We were speechless and have been trying to process this information ever since.

We have found out that there are only a couple of other hospitals in the country that would consider me a candidate for transplant because they have been successful in handling the collaterals and significantly reducing the risk of hemorrhaging. The hospitals are Vanderbilt in Nashville, TN and UCLA in Los Angeles and Stanford a little south of San Francisco. In all of these cases, I will need to go through the entire evaluation process again and the approval process. However, the first step is to have my records/test results sent to these hospitals and see if they will invite me out for evaluation. This would consist of about a week at each location, testing, meetings, etc. If I were to be listed at one of these hospitals, I would need to live there once I am listed and for at least one year post transplant.

All of this is very overwhelming and the feelings that are going on are very hard to put into words. I have been asked that if these other hospitals have a way to manage the risk of the collaterals, why doesn't Penn do the same thing? We have asked that question in so many ways but keep getting the same answer. They do not believe that there is a way to significantly reduce the risk. Of course, that will be one of the number one questions we ask when we talk to these other hospitals. I've also been asked, "Isn't there other hospitals that are closer that will do the surgery?" Because of the my complicated anatomy, these are the only hospitals that have successfully transplanted patients like myself.

Since I'm am no longer actively listed and am feeling ok, I can travel a little and I'm trying to figure out if I want to go to the Baseball Hall of Fame or the Football Hall of Fame for a long weekend. I'll need to do it quickly before I hopefully will travel to California for further testing and evaluation.

I want to thank everyone for the love and support that has been shown to me and my mom This new development was not expected at all and has been hard to process. I need your prayers more than ever. I will keep you posted as we know what the next steps are. Ross

August 29, 2019

I have now been listed for my heart/liver transplant for one month! We anticipate the wait to be at least several months to a year or more; however, I’m doing pretty good. The fluid problems I experienced early in the year have been resolved and I have been doing a great job watching my sodium and fluid intake and the fluid has not returned. Even my blood work has gotten slightly better which just makes me feel better! I have been working full time and plan on teaching again this year at Beth Shalom. God willing, I will be fairly healthy until I receive my new heart and liver. I know it can be confusing that I am doing ok but still need the transplants. Although I look pretty good and feel pretty good, my lymph system is not able to handle the processing of all of the fluid in my body and it is all due to my heart condition and a terrible complication called PLE. PLE is something that I have battled since I was 7 years old. Everything that can be done to help me manage the PLE has been done and the only option now is the transplants so that I can live a healthy life. We are doing a bunch of fund raisers in the month of September and hope that you will consider supporting me.

July 26, 2019

Today, Ross found out he is officially listed for both the heart and liver transplant. It has been a very long 7 month process going through meetings, testing, more meetings, more testing, more meetings, more testing, insurance verification and final blood work to get to this point. Now we have to be patient and wait for "the phone call" to come to the hospital. There is a chance we get to the hospital and we are sent home but we've decided on a plan where we will go to 4th Street Deli and Ross can eat whatever he wants. He is very limited on his salt and fluid intake but I think the deli is a good option since it will be really disappointing. You know how Ross loves deli and enjoys laughing! I know the day will come that we will get "the real call" and a new journey for Ross and all of us will begin. We have to keep breathing and praying and Ross needs to work hard to stay well through this wait. Thank you to everyone who has been following up with us and helping us with fundraising and general support. We will need it more now than ever! Love, Donna and Ross

July 18, 2019

There are currently two fund raisers going on to support Ross. The first one is we are collecting shoes and the funds from the shoes we collect will be donated to Help Hope Live to support Ross. We will be collecting shoes until mid September. New or gently used shoes can be dropped off at Donna's house, Congregation Beth Shalom, Aldersgate Church or the JCC (fitness entrance). No flip flops or roller or ice skates! The more shoes collected, the more will be donated.

The 2nd fundraiser was just announced today. We have secured tickets for a Wilmington Blue Rocks Game for Friday August 2nd at 7:05 PM. Each ticket will be $15, and a portion of this ticket will go to Ross's Campaign. If you purchase a ticket for $20, you will entered in a raffle that we will be hosting. Tickets can purchased thru Donna Shapiro Miller or Jennifer Michaels and the deadline to purchase is 7/31/19. We will be accepting payment in the form of cash or Venmo. Our goal is to sell 50 tickets - please help us meet this goal!

You will be able to pick up your tickets at the day of the game at Will Call - so please leave the name of the person who will be picking them up. The game starts at 7:05, and will also have Scotty Smalls from The Sandlot and Fireworks at the end of the game! . Please email back with the number of tickets and Donna or Jen will reach out you for payment. Please feel free to share this email!

Thanks again for your support, Play Ball and Support #TeamRossiRoo!

June 11, 2019

Yesterday was another milestone in the transplant process. I visited Penn and went through the Liver Transplant evaluation and today received the call that I was approved for the liver transplant. I have a couple of follow-up appointments such as with infectious disease since I have been out of the country (even though it has been more than 5 years ago) as well as a pulmonary consult as I will probably have to do pulmonary exercises before the transplant to ensure my lungs are fully working and I can train them to take deep breaths. This will help me in my rehabilitation process after the transplants. We heard some very positive news that young adults like myself with PLE who need heart and liver transplants do very well post transplant. There is something in our immune system which they don't understand that protects us and we don't have as many issues with rejection. Also because it is the PLE that makes us need the heart/liver transplant, our current organs have not deteriorated like other people who need this kind of transplant which makes the transplant process more successful. Any positive news is welcome. I have several appointments at Penn on June 26th and 28th and I'll share more after those appointments. Thanks for keeping me and my family in your prayers. I appreciate the monetary, non-monetary and all the encouragement we have been receiving.

March 24, 2019

I who was born June 17, 1988 with several birth defects that affected the mid-line of my body known as VACTER syndrome. Each letter represents a different part of the anatomy and of the five letters, I have four of the anomalies.

In my early years of life, I had four bowel surgeries, tracheal surgery, four open heart surgeries, and over 10 other heart related procedures. I underwent the ground breaking 3-stage Fontan surgery performed by Dr. Norwood at Children’s Hospital of Philadelphia (CHOP). The Fontan operation results in the flow of venous blood to the lungs without passing through a ventricle. This procedure was performed because I born without a right ventricle and other heart anomalies. Throughout the first three years of my life, me and my mom (Donna) spent months in and out of the hospital while I had surgeries. We went to monthly and sometimes weekly appointments at CHOP and there were many ups and downs until my birth defects were “fixed”.

Around 1996 I was diagnosed with PLE (Protein Losing Enteropathy) which is a result of my heart defect and surgery. Approximately 5% - 10% of Fontan patients develop PLE and there is no cure. Over the course of the next 20 years, some research has been done into why some Fontan patients develop PLE; however, because it only affects a small population of individuals, research has been slow and slower yet are any solutions. When someone has PLE, the lymphatic system is significantly affected and the body is not able to handle the amount of lymph fluid in the body; therefore, it leaks into various part of the body (intestines, legs, belly, etc.) and your body is depleted of blood protein (albumin). Albumin is essential for our bodies to function properly, fight off infection and to help keep blood circulating.

Because of the PLE, I became really sick over the next several years and in 2000, I underwent a Fontan revision, a pacemaker was inserted and a stented fenestration was put in to even out the pressures in my heart. These procedures were known to relieve the symptoms of PLE. These fixes put the PLE in remission for 17 years; however, in the latter part of 2017, the PLE started coming back and I started retaining fluid in my legs. Since that time, my PLE has back with a vengeance and fluid has not only built in my ankles but up my legs and into my abdomen and around my lungs making it hard for me to breath.

Since the beginning of 2019, I have been in the hospital twice because my body has been accumulating and storing a lot of fluid. I have had to go on IV diuretics and albumin to help keep the fluid down. The first hospitalization was for 5 days and the second hospitalization was for 12 days as I gained 18 pounds of fluid in one month.

Another complication of the Fontan procedure is the way blood flows from the body to get oxygenated. Because I only has one pumping chamber which is the left ventricle that pumps blood to the body, the blood flows passively to the lungs to get oxygenated and blood sludges back into the liver causing scarring. This scarring, over time, caused cirrhosis of the liver which I was diagnosed with in 2013.

The combination of my original heart defect, the liver cirrhosis and the recurring development of PLE (of which there is no cure) has created a need for me to have a heart and liver transplant in order for me to live.

I started going through the evaluation for the heart transplant in November 2018 and I had a heart catherization which is the last test I needed so my case can go to the committee at The University of Pennsylvania so I can be approved for a heart transplant. Once I am approve for a heart, I will go through the evaluation process so I can get a liver as well. In my case, the transplants will need to come from the same donor and the surgery will be done at the same time.