Erin Grimm is a 37-year-old woman who has had a lifesaving heart and liver transplant, Valentine’s Day weekend in 2016.
Having several complex congenital heart defects (CHD’s) Erin had several surgeries in her childhood, one of them being the Fontan. Her Fontan surgery re-routed her circulatory system and allowed her body to function with one working ventricle, but her Fontan failed therefore it caused issues for her heart and liver. Erin has never defined herself as medically fragile, though she was physically limited throughout her childhood; instead Erin focused on becoming the kindest, most compassionate, and well-rounded individual that she could be.
There is no one like Erin, she smiles through everything, and uses her sense of humor to cope with every situation that she endures health-wise. Erin has lived in Virginia for most of her life, and she grew up in Springfield. She now resides in West Virginia, where she is now able to live on her own but her parents are very close. Erin loves to read, write (she’s currently working on a several books), she loves to blog, cook, and when she’s healthy she enjoys being in nature.
Erin’s parents are phenomenal and have supported her since the moment she was born, so together with her entire family, and a bunch of wonderful friends her support system has gotten her through such a life changing experience.
The double-organ transplant was extremely expensive, and there are many financial factors even if Erin is insured. Erin’s transplant hospital which is her aftercare hospital is 3 ½ hours from her home, so she had to stay in the hospital until transplant. She stayed 81 days before being transplanted.
Even with her aftercare, Erin and some of her family can stay at the Gift of Life Transplant house, but if it’s full, they would be at a hotel with a discounted rate. Her support system has to help her travel for follow-up care; Erin also needs help with co-pays, medication co-pays (her heart medications and then the anti-rejection medications could range upwards of $1000 monthly since it is two organs), there are also so many more expenses because this is a dual transplant, and her physical health has worsened since transplant even though her heart and liver are functioning perfectly.
She’s adjusted very well to enduring all she has, and is mentally and physically the best she’s been since her transplant. She will always have a long haul, but she is determined to make it the longest haul she possibly can.
We ask that even if you can’t donate you do continue to pray and please sign the Guest Book, because these encouraging words help throughout this journey!
Thank you for your prayers, your support, and also the generosity. They are so appreciated!
Gratefully,
Jeff and Crystal Grimm (Dad and Mom)
(and of course Erin)
UPDATE: Erin received her heart and liver transplant Valentine’s Day weekend of 2016. After many months of complications including a bowel blockage, bleeding ulcers, a collapsed lung, a tracheotomy, blood clots, and muscle atrophy meaning she had to go to a physical and occupational rehabilitation facility. Erin was released and was able to finally travel back home June 1st, 2016.
In October of 2016 she was diagnosed with C-Diff, Acute Renal Failure, and Stage 1 Chronic Kidney Disease.
In July 2017 she had an episode of hemoptysis, meaning she coughed up blood. A hospital stay proved this was to be monitored.
Since the transplant she’s been diagnosed with:
Diabetes
Fibromyalgia
Stage 2 Lymphedema
Stage 3 Chronic Kidney Disease
Gout
Hernia Repair (2018)
Erin has chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact HelpHOPELive at 800.642.8399.
Thank you for your support!
Bio will be updated soon because I’m moving!!
Updates (12)
May 17, 2016
On 2/13/16 and 2/14/16 I received my heart and liver transplant! It took over 24 hours and I had many complications after and spent 2 1/2 months in the ICU and needed to have several surgeries and procedures just to survive!
January 30, 2016
Day 67 still here as a 1A waiting on a heart and liver!
Not much to update, but we are all still praying and waiting!
Please sign my guest book, it truly means the world to me!
I love you all!
Erin
January 30, 2016
Erin is still waiting for her transplant. As of today it has been 67 days. Please keep up un your prayers. We wanted to thank everyone who has donated. We love and appreciated it more then you know. Keep our family in your thoughts and prayers. Thanks again Love Crystal and Jeff
January 1, 2016
Hey Everyone ... it is day 36 in HOUSE (meaning I've been here at HUP 36 full days) ... but today is 3 months listed for a Heart and Liver Transplant ...
Today after speaking with my family and having some financial advice I have learned something new ...
While we assumed most of my surgery was paid for by my insurance, several things will not be because I will need more than one team of doctors in the room during the surgery ... think about the largest OR this hospital has and I will be using it because I'll need a Congenital Surgeon, Congenital Heart Specialists, Liver Specialists, Specialists who work with vessels and veins, and those who are also experts in the fields of building, revising, but more importantly for me taking down the Fontan Procedure.
Insurance will not be paying for all of that, things like the organ procurement is paid for, the actual surgeons doing the work inside my body will be to an extend but they will need other specialists there on standby to help them if something goes wrong or if more medical knowledge is needed. Some medications during the procedure might not be paid for because they will be used to during things like rebuilding my vessels, etc. This is going to be an expensive surgery and insurance is not covering 100% of it ... after learning that ... I will let you know it is very hard but we are going to need more help from all those who love us!
The Gift of Life House has been a saving grace but it is not free either and we aren't sure how long we will be here ... we were blessed to have a month paid by relatives but please remember at any time you can call them and specifically ask to pay for a night or two or a week, or more (anything will help us right now)!
Also please remember that Andy is driving as much as he can to come visit me, while working full time to maintain our home so I do have a safe place to come back to ... he does have time off saved up but if I have any complications we would still need help paying rent or utilities at our house in VA) because I have asked that he not leave until I know for sure after the transplant I've passed the critical stages ...
Guys ... I'm begging you for your help, I know you see the money in the fund but it doesn't deduct it when we use it ... so that amount is not correct! We as a family have rallied but funds are not easy to come by when people are retired, one is on disability, and the other is working to maintain the life we have build before this happened ... I need your help ... I know you can go to your churches, you can start fundraisers for me, etc. there has to be a way ... I've seen it done for others ... I know I have enough love surrounding me that if everyone on this page shares this status and then begs their friends to like this page, and we can get more support from businesses and those who have the financial means to truly help someone in this situation ... I would have a load of stress off me!
My medications after transplant are going to be expensive ... they will not be FREE by any means ... I will need help after that until my body is strong enough (if it ever is) and I can work and afford them myself ... I want you to know that before all the complications that having a failing Fontan, Congenital Heart Defects, Hepatic Vein defects due to the extreme high pressures caused by the Fontan, and the Cardiac Cirrhosis ... in 2011 a typical heart/liver transplant was about $1.5 million dollars ... so for me it will be so much more because we aren't including the inflation of transplants along with the extra coverage needed during my transplant so let's say $3 million for the entire surgery, that doesn't include any previous hospital time here that I spend waiting, and it won't include the recovery period either ... so our family needs help! The expenses of this are outrageous and we need you!
We are thinking of having another fundraiser using different charms since the ones I designed sadly did not go over so well with people ... as a family it is hard for us to do this from here ... so if you'd like to help ... PLEASE REACH OUT TO US!!!!
December 1, 2015
Here is an update from my FB page ... Please sign the guest book I enjoy reading everything ❤
Good Morning Everyone ... Today my 4 teams are making a long term plan ... They are actually in a meeting right now deciding about things ... This is all of my teams and several very important people in this hospital ... No one thinks I will be home anytime soon and might even be staying in hospital or at transplant house during this time as it is not safe to be in VA anymore since INOVA doesn't feel they can treat me anymore ...
Please know I can get mail ... Please send to:
Gift of Life Family House
C/O Jeff, Crystal, and Erin Grimm (Room 404)
401 Callowhill Street
Philadelphia, PA 19123
Also please know that if you'd like to donate the best way to do so is to go to HelpHopeLive (dot) com and look up Erin Marie Grimm in the search section ... Anything would help so much as it could be months when we go home!!!
November 3, 2015
I just wanted everyone to know I've been moved up to 1B status on the UNOS transplant list!
Thank you for all your love and support!
I will be calling this week to plan events locally (even if I can't attend)!!!
If you'd like to help please let us know!
October 28, 2015
Hey Everyone!
Thank you for all your love and support especially during my past week in Philly!!!
It was so hard being away from Andy and Zeus but my mom and I made the best of it! We tried our hardest to get things under control and I feel that we as a family, have a better hold on things!
I am a Type 2 Diabetic, with hypothyroidism which is tough but I'm praying daily that the medications and insulin will start to help my body get into the correct state and I can be better prepared for transplant!
I also have made the decision to not drive anymore, I have had a lot of dizzy spells and they are pretty scary and being a diabetic now until my sugar is managed, it is just a better idea to not drive. This was a tough decision but I know it's for my best interest!
Now, the heart team has made some decision, so I need many prayers as getting fluid off is very important and I'm going to work extra hard with everything to manage this; so I do not have to be hospitalized because if it gets worse I might end up in the hospital long-term until transplant.
I appreciate everything, that everyone's done and we are hoping to have some fun event fundraiser's soon!!!
October 16, 2015
Here is another update from the day!
I know a lot of you don't comprehend how I've developed diabetes now ... transplant buddies feel free to talk about it on this status because it's very hard to explain ...
I have a family history of the disease ... so that meant I was more likely to get it before transplant along with the fact my liver is not working well which leads to my pancreas not getting the correct signals and that can shoot your blood sugar up!
I have known that my blood sugar was high every time I had blood work and it was something we wanted to watch ... I didn't feel the need to post about it because honestly ... I thought it was only because I had eaten before blood work ... but my a1c was 6.7 which is outrageous and that is what I was praying did not happen! Today my cardiologist finally prescribed me a glucose meter, and strips, and a lancet ... so today I have taken my blood sugar and it's through the roof ... which also could attribute to how I have felt! We expected to this happen, either before or after transplant ... I'm not on insulin yet as I will need an endocrinologist to prescribe it ... next week when I got to HUP, I will be asking them to see one as I am not comfortable seeing one around here ... or they aren't really comfy seeing people like me which makes me uncomfortable! Luckily HUP is equipped to do with this! I do see my PCP doctor Monday, unless I can find an endo who will see me before then ... please keep praying for me and my family ... as we expected this but held on to the hope it wouldn't happen!!!!!!!!
October 16, 2015
I am headed to pharmacy because it seems I have developed diabetes ... So I am checking my sugar now ... Gonna try to set up endocrinologist appt ... Also I have muscle wasting ... So that is another battle ... Dr. Talluto believes FFX jumped the gun and that eventually I may need a dopamine drip but he believes next week will be more about the liver than the heart since my heart is hanging tough ... Echo hasn't changed ... Which is good ... I am gonna be fine he says we may be looking at a 6 to 8 month window or more til transplant unless I get worse ... Right now I'm stable ... Even if it seems like I'm not ... I am ... Surprisingly what is happening is typical
October 15, 2015
Just spent from 10/11/15 to 10/14/15 in Fairfax Hospital in VA, my kidneys went into acute shock/failure for the 3rd time this year. This means my body is rapidly declining and could push me up on the transplant list and push things forward faster than even I expected. My local cardiologist will see me on Friday, and then next week I go up to HUP for appointments that thankfully were already planned!
I'll be getting an ultrasound of the liver next week, to give us more information on that organ and how it looks compared to how it looked in March which while only is about 7 months it's function seems to be worse from every other standpoint. I'll also be getting an echo this Friday at my local cardiologist to see if anymore damage has been done. My voltage to my heart is very low and that is scary. I either in going through tachycardia or having normal beats, but I'm enduring tachycardia more often than not. My blood pressure seems to drop very low or go very high, it has been hard to keep it in the normal range for what my heart needs. My kidneys are very stressed and they keep bouncing back (which is a miracle in itself) but we can't keep doing this to them, and risk them going out completely. I am curious to see what HUP says next week and if my local cardio has spoken to them, he's mentioned a permanent move to the hospital which is the hardest and very scary part of this because it means I'm not safe at home anymore ... please know that this will be very expensive and trying for our family ... Andy and I will have to see each other weekly, my dad would be coming up once a week as well but my mom and I would be living at HUP or the Gift of Life Transplant House until my transplant. I'm praying this is what is best for us, please continue to pray as well!
I appreciate everything and am so grateful for everyone praying, commenting, messaging, signing my Guest Book (please sign it helps me so much), and calling us ... WE LOVE YOU and are so grateful!!!!
We are also looking for (serious only please) a few people who would like to volunteer to have events if we are up in PA, we would not be able to be present due to medical reasons but we would really like to get some fundraisers going and we need all the help we can get <3
October 6, 2015
On September 30th, 2015 Erin was officially listed under the UNOS system for a heart and liver transplant.
She and her support system are awaiting "the call!"
She has several appointments this month, one this week to see the Cardiac transplant team and in a few weeks she will be seeing the Cardiac transplant team along with the Liver transplant team.
Thank you for your unwavering support throughout this!
September 20, 2015
With the recommendation of the Social Worker at the Hospital at the University of Penn, I've personally decided to open a HelpHOPELive campaign. I previously used other campaign sites and did not understand they were not tax deductible.
This also means I do not have to personally touch the funds, I can send in my medical bills and my travel expenses; along with any other expense I will have before transplant, during transplant, and even after transplant. This is a process and I have been preparing for this since 2013 when this option was first explained to me. I'm currently in the process of hoping to be listed for a heart and liver transplant.
Please know that any little bit helps, and I really appreciate everyone's help during this time. The prayers are wonderful and I am so grateful for all those who have reached out to me and my family!
Guestbook
November 22, 2021
God Bless you. We love you
Healing Waters Biker Church
Healing Waters Bikers Church Healing Waters Church
August 16, 2021
We as a Church Family love you. God Bless Your family at Healing Waters Biker Church
Healing Waters Bikers Church Healing Waters Biker Church
April 30, 2016
God bless you and make His face to shine upon you always. Know that Jesus walks with you through the hard times and rejoices with you in the good times. Gentle hugs,
Judy Rapp
April 24, 2016
when God saves your life, it means you still have a job to do and you're not ready for the long rest. Take it a day at a time and get well, knowing so many people are praying for you.
KATHLEEN HUNSICKER, CAPE MAY NJ
April 20, 2016
Hello Erin, We are so happy for you that your starting to heal more and more everyday...it's been a slow and steady healing process but things are going in the right direction for you and that's all that matters. You are in our continued thoughts and prayers for complete healing...stay strong.
Love, Angelo,Carolyn,Angelo Jr,Angelina Messina
April 20, 2016
Continuing to pray you through this event in your life. God bless you. Momma Dangler
Debbie Dangler
April 20, 2016
You are an inspiration. May your star always shine bright. Much love to you always
Stephanie Berrocal
April 16, 2016
On the darkest night the stars shine the brightest...God loves you.
Betty Cox
March 18, 2016
You are a miracle, an inspiration, & I wish I could donate more than just prayers for you. You are blessed, & a blessing. Stay strong you amazing child of God!
Michelle O'Malley
February 16, 2016
Stay strong Erin, I'm praying for you.
Eve (YuRa) Kimm
January 31, 2016
Hope everything works out soon for you, hang in there! ! Prayers coming your way! !
Carla Nicholson
January 16, 2016
Keeping you in our thoughts and prayers... Mom and I sent you a little gift via HelpHOPELive... Seems they haven't updated the amount donated. But we love you and lift you in prayer daily!
Ruth Taketa
January 11, 2016
Hi Erin, I just saw your fb page. I am a mom to a 9yr old Fontan child named Jilly. I realize, this is what will probably come in her lifetime and that makes me feel very attached to you! We travel 4+hrs to CHOP, have gone through 6 OHS and completely get the loneliness of being away from home. I hope you do not mind, but I did put a request on my fb page for our Philly friends to come out for you. Also, I pray for you! God holds your hand, and will carry you through this journey. Keep Faith. Feel free to contact me fb : Proper Kimble Joy...(Joy) Heart Hugs!
Joy Kimble
January 4, 2016
Happy New Year, Erin! Hope this is a great year <3 *Hugs*
Lisa Mason
January 4, 2016
I don't know you but I read your story and I really admire your strength and optimism.... keep fighting the good fight girl!!! Sending positive vibes and well wishes your way.
Audrey Sawyer Winlock, WA
January 1, 2016
Erin, I pray that God will hold your hand through all of this. Stay strong girl! You've documented this really well.. Keep touching people's lives the way you have.
Benny Pham
December 6, 2015
Thinking about you every single day! Love you always!
Ebony
December 5, 2015
Never give up, pray always and keep looking up!
Dad
December 1, 2015
MY BESTIE!!! (Hope that made you smile.) I just wanted to say that I love you, and I know this has got to be the hardest thing you've ever endured, both physically and emotionally. I can't even imagine how all this must feel....Please know that I am here for you, every step of the way. I believe in you, and I believe in your medical team. I truly have faith that you WILL get this second chance at life. So...Here's to new beginnings. One day, hopefully soon, all the "hard stuff" will be a memory and you will be able to enjoy living again. I love you. I'm here for you. Forever.
Brandy Nelson
November 26, 2015
Hi Erin,
This past summer I stayed at the Gift of Life House with my husband, Junior when he received a kidney transplant after being on the list for 5 years. At only 31 years old, it was heart breaking to see him on dialysis and all the restrictions it placed on his life. Even more so, it was difficult knowing everyday he was fighting for his life. There came a point after five years where we thought an organ may never come for him but we kept praying and it happened 6-29-15. I found a lot of comfort and "healing" in sharing his story and journey over the years and being heard. Please continue to do the same! It affects and inspires so many people! We will both be keeping you in prayers and wishing you all the best. xoxo
Felicia & Jose Padilla (Junior)
November 25, 2015
Praying for you and your family Erin.
Robyn Cunningham
November 24, 2015
Hey there hun, didn't want 2 go 2 sleep without coming here n juss tellin U I love very much. My prayers 4 U will B unending until UR blessings finally come tru. Please remain strong n faithful n I juss wanted U 2 kno that "this too shall pass" meaning that god is already writing a new chapter on UR life rite now, plus UR story must B heard n UR testimony must B heard as well. I'll keep prayin also 4 the strength of UR family as well. I believe in U hun n I love U very much. XOXOXOXOXOX :) ;)
Cory Lucas
October 27, 2015
Hello Erin, We want you to know we wish only the best for you and we'll keep you in our thoughts and prayers. It was an honor to have met you. Always remember GOD IS GREAT and you will prevail and everything will be ok.
Mr. And Mrs. Angelo Messina & Family
October 22, 2015
Good morning hun! Juss wanted 2 wish U a great day with everything n hope that things will work in UR favor. Have a great day lil sis n I'll get bac at'cha on here soon. Love ya hun ;) :)
Cory Lucas
October 19, 2015
I love you Erin and I believe they will find a heart and liver for you I always keep you in my prayers. You will always be like a sister to me and friends 4ever.
Vicki Schweder
October 16, 2015
Hey there hun....I guess better late then never...not really sure what 2 say, so I'll leave U with this prayer......Father god I thank U 4 continuing 2 B beside this smart, gorgeous, strong n loving person as she continues 2 fight on so she can live....please continue 2 bless her n her family as they help her on this journey n this fight.....give them the continued strength, understanding n courage 2 carry on n please bless her with the same as well....U hold all power in UR hands lord, so continue 2 cast UR covering over her n fill her with UR strength....have thine own way lord in her life....let her kno that she will make it thru n that U will make her stronger than ever......amen.
Cory Lucas
October 15, 2015
Hi Erin, I've been thinking about you often and appreciate your updates to keep all of us a part of your journey. Will be praying with you in these coming days/weeks/months. Stay strong!
Becky (Brown) Eckerman
October 13, 2015
I will pray for God to surround Erin with all of his love and healing.
Melissa
October 13, 2015
Our thoughts & prayers are w/ you, your Dad & Mom everyday. If you all need anything, pls don't hesitate to let us know. We love you, Smitty & Sheri
Jeff & Sheri Smith
October 13, 2015
Praying everyday for you and your family.
Patti Barili Kelly
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In honor of Erin Marie Grimm
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Radnor, PA 19087
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