Cleveland Clinic Medical Expenses
My wife Lisa was diagnosed with a very rare disease SMAS, Superior Messentaric Artery Syndrome, which has a 1 in 3 mortality rate. Less then 1 tenth of 1% of people have it. It literally starves your body from food. Our local hospital which is very well known said there isn't more they can do for us and we need to look elsewhere. She has an appointment at Cleveland Clinic in July because they have the most experiense with this illness and we will need to fly a nurse with to accompany her during travel. The hospital costs, hotel stays, and travel expenses are going to be tremendous. Any help would be greatly appreciated. Thank you
Local news station's story on Lisa
I'm sorry I am not good at writing, which is why she would "help" me with my school papers :). But today I will never forget. Today marks the day where my best friend, my teammate, my wife is finally free from suffering and pain. She went to heaven peacefully with her family by her side. I would say an angel got her wings, but she was and is more than an angel.
I love you LiLi Luxe
Sure am gonna miss you
This is her husband writing the update.
This year has been a really rough year for us. We have been through a lot together and this year has been the roughest and most emotional. We continued to look for new Dr's to help but to no avail. This past October Lisa entered into an at home Hospice Care who has been trying to get her symptoms and pain under control. She has been rapidly declining and the future is not looking well. She now has to use a walker to get around the house because of a nasty fall she had, and is hardly able to leave the house anymore. I will be taking off work starting Dec 6th until further notice to spend what remaining time she has left together. Thank you for all your support and sorry we haven't had any good updates lately.
A lot has happened since then both good and bad as we tried to pick up the pieces from this huge setback and move on. My health is still steadily declining and has been through some very scary stretches of time where we were seriously considering hospice as my only option. I did have an inpatient hospital stay back in March with very disappointing results and no solutions, but not many were expected as we have been told far to many times "there is nothing more we can do for you". Being too sick and weak myself to undertake such a monumental task, I called upon the help of my supportive family to assist me in doing everything required to have an intestinal transplant evaluation at another highly regarded hospital; Jackson Memorial in Miami, Florida. Farther in distance, which is very intimidating, but at this point is looking like my best option for survival and for hope.
After several months of record transfers, mounds of paperwork, local doctors appointments, I finally was accepted to Jackson Memorial's evaluation program in their intestinal transplant and rehabilitation department. I will be flying down with my husband Patrick who has taken unpaid FMLA leave from work to be by my side on Saturday the 14th for my Monday the 16th appointment to meet the team in the intestinal transplant department and have them do an extensive review. I have no idea how long I will be gone, and it is likely the very extensive list of testing needing to be preformed for the evaluation will be done on another trip as I am just too sick, weak, and having severe SMAS symptoms with horrible pain, inability to eat or drink most anything and basically a complete shut down of my small intestine motility. From where I sit this evening I am more scared than ever, wondering how I will make the flight with all of my medical supplies along and not being inpatient, staying in a hotel for our trip. However, thinking back to one year ago when I felt the exact same way about my impending trip to CC for the very first time in much the same condition. As always, with the strength of my family and all of your prayers, I made it, so this time I am praying for the same strength and results for our trip.
I know this is a short update as I am simply lacking any specific information until we arrive and meet the team. My future is unknown and in the hands of others, but your prayers reassure me that although this is a very difficult journey, it could be the right next step to save my life. I want more than anything to be the wife my husband misses, the daughter my parents remember, and the friend all of you once knew.
Please stay tuned for more updates and again, thank you from all of us for your donations and for your prayers, we love you all. Forevermore.
My 20 year old daughter has been going through the same thing since April 2012 after she was diagnosed with mono in March that year. She's had no life with school or friends, except one semester since this started. We've been to numerous doctors anywhere from naturalists to Mayo and Cleveland Clinic with no results at all! With help and research from a friend, we saw Dr. Kurian at the Denver Esopheagael and Stomach Center who has specialized training with gastropaersis. Their website is the only one I've found that discusses the different procedures and what they are for. Anyone who is going through anything like this can benefit from this website/doctor. It's been amazing the number of people suffering with similar issues and the growth of information on the Internet since she started throwing up over three years ago! I really wonder if it's linked to preservatives in our food and or, the unnatural food we consume! So sorry for anyone that has lived with this! Praying recovery for all and that this post may help someone! God Bless!
I'm reaching out to Lisa in hopes she will message me. My friend Simone Reef is struggling with this crazy rare disease and like you is starving. A beautiful strong woman , healthy and loving life at 140 lbs now broken , frustrated and misdiagnosed for going on 2 1/2 years... She is 90 Lbs... In and out of hospitals...STARVING!! Your article has given her the strength to continue on and she's not alone... I would love to put you in touch. Thanks for your strength and endurance...Simone could really benefit from you reaching out. Thank you from the bottom of my heart! Hopeful, Tania M Duncombe
Hi Lisa! I just read about your article on buzzfeed and while I have not suffered from SMAS, I was diagnosed with gastroparesis at 21 and told I was going to be on a feeding tube for the rest of my life. It was something I wasn't ready to accept so I reached out to some most holistic avenues. Something that changed my life was doing a juice fast for 3 months to completely re set my stomach (check out the Netflix doc fat sick and m nearly dead). I did it under the supervision of a holistic doctor and had A LOT of juice, not your typical fad juicing diet. I slowly re introduced other food and 3 years later with the combination of mindfulness practices and targeting eating I live a fairly normal life. I know every situation is so different, but I just thought I'd reach out and let you know what I really believed saved my life. Please feel free to contact me. I hope you're doing better and I'll be thinking of your strength
I spent 5 years going through hell with similar symptoms. I was diagnosed with gastroparesis at the University of Michigan Hospital and had surgery for SMAS. I also had my gall bladder removed. No relief! I was placed on every pain killer known to man which only makes any GI problem worse and results in severe depression. After 150 trips to docs including two weeks at Mayo we were able to get a doc to do a MRCP which showed the possibility that I suffered from SOD. It can be confirmed and corrected by an ERCP. Lucky for you the number one docs in the world for this procedure are located at St. Lukes Hospital in Milwaukee. It is worth looking into. Don't let the GI docs that you are seeing tell you that you can't have this because your liver enzymes are not elevated they aren't in 20% of those who have it. Just remember that SMAS is a result of your weight loss and not the original cause of your pain and inability to eat. We were told at Mayo that gastroparesis would not cause the intense pain that I was suffering. You have to be your own advocate. You must know more about your condition than your docs. If I can in any way help you please contact me. I will be praying for you and your family.
You just told my story I called Cleveland clinic to see if he can see me also thank you so much for giving me hope and I pray you get well soon I call my news stations over a year ago and they would not tell my story I have been fighting this for 4 years and 1 month and have given up hope since doctors said there is nothing to do for me if you get a chance please add me on Facebook Shannon leach Jones I tried to find you but couldn't get well soon please
I am in a similar position but for a slightly different reason. I have no help either and I cannot be tube fed. I just keep trying to keep going as best as I can. I've had this for since about 2009 and it's a fight every single day especially at the moment. Keep on fighting if I can do it so can you!
Rest in peace, Lisa ♡
This was from my cousin: I have a family member that suffered from gastrointestinal illness which was much later diagnosed as Gastroparesis. She was unable to eat food for 6 years. She had surgery done at Cleveland Clinic in the state of Ohio. She underwent an intestinal transplant and doing well. Have you been checked for this disease? Perhaps you could ask you dr about it. Prayers for you.
Just wondering how is Lisa doing? I cannot seem to find anything about her anywhere. I hope all is well , she hasn't posted anything for 5 months. I pray youhave had some good results
Hi Lisa, I hope you will read this. Recently I had operated on my cruciate, it's not something big just a routine surgery, but I had diffyculties and when there is anxiety I stop eating. I always when something bad was happening stop eating, I couldn't, I had nausea. But I was getting used to this situation, I wasn't eating, and then suddenly I started to sleep all day, don't want to see friends, and even if I want to eat or I feel hungry I can't eat a lot any more. But I realized that is 2016, I mean people die for different reasons but only people who don't have access to food and water diefrom starving. And we have everything. And a brain. A brain that can do everything! What if we can have the best hospitalization , lots of money and the best doctors? Can medicine help us forever? Or can we live a life with everyday pills? I lost 5 kilograms in a month, suddenly, everyone who see me tell me 'why don't you eat?' 'don't you care you look like this?'I'm 39 kg today. I don't want doctors help me but this is my decision. I want to tell you : come over the feelings of eating food and try to eat, I know it sounds crazy, but only you can help your self, you still look beautiful, you have a man by your side and a life to live with him, you have to wear beautiful dresses and go out with friends and eat and drink coctails, you must!I'm trying to think something relaxing when I'm trying to eat, it helps me a bit.Sometimes I say why there is food i can't eat I can't even look it it causes me nausea! But I'm wrong and I'm sure I will do it, I will come back to my life again, with energy, with my tammy and when i will feel hungry I will eat. I HOPE WE BOTH COME OVER THIS SITUATION WE CAN DO THIS WE HAVE A LIFE TO LIVE WE MUST BELIEVE IN OURSELVES! we will have again all the moments we lost! and we will appreciate them more! you can do this, I can do this, everyone can do this! you can inspire people with your story, and even if someone told us ' oh come on you don't eat your body is so skinny you will die from starving' no I won't! I hope one day see you again photoshooting your perfect body and the natural beauty of your face, don't ever give up! Mary Rybak, 21 years old and very very very skinny (but I will change it!)
My prayers are with you. Your story inspires me, as I have sma and Gastroparisis and have had several operations, most recently 4/6/16. A few good weeks, and right back to vomiting. I am trying to stay positive, I am thinking of going to Cleveland as well. Please keep us updated, I did try to reach out to you via email six months back. You're not alone! Keep your head up Lisa! This is part of us, it doesn't define us, it has although made us different and stronger. Be safe.
Prayers to you and your family - I was diagnosed with severe gastroparesis in 2012. My doctor has linked it with POTS and undetected Lyme Disease and I am in treatment. I post this in hopes that it may help you or someone who reads this. Stay strong, positive, and hopeful. You are beautiful! -Katy
Many prayers being sent for you and your family. Susan Mead
I am reaching out to Lisa in hopes that she can contact me. My journey started in May with my first hospitalization for extreme stomach pain. I have since May had extensive testing done. I have gone from 129#s down to 90 and continue to drop. I was diagnosed with gastroparesis. I have been diagnosed with other things as well.. I feel like no one knows what to do with me and no one knows the next step to help me through this. My next step is to contact the hospital using the link in your article. I admire your strength and much like you am not willing to give up despite the challenges. I am not willing give up and want my kids to be able to hug me again without me flinching at the thought of the pain that goes along with a simple hug from my 7 and 9 year old daughters. Brandy Jacobson 36 years old and very very much starving .
You have inspired a lot of people i went to cleveland not to long ago and wish i would of been seen but they canceled my appointment without me knowing it got the letter of cancel the day after the appointment so decided not to go back to the cleveland clinic so found a new hospital the university of Wisconsin i finally got answers that i have been searching for for 4 and a half years i have been to one stomach doctor to another just found out it is not my stomach that is causing all the pain that i get everytime i eat it is from a severely damage vagus nerve check this out maybe you have the same you described everything i go through praying for you to heal and please check out severe vagus nerve
I know you are under great care, but you might ask for a tropical medicine doctor and have them check you for parasites, since you got sick a year after going to Mexico, I had similar problems as you and after taking the medicine, I had my life back. I also spent time in Mexico and Guatemala, when I came back to the States, I was very ill, throwing up etc... No doctor could figure out what was wrong, then I went to a Doctor actually in Mexico since that is where I probably got this guardia parasite, and doctors in the States don't know how to test or treat, and 3 days after taking medication I was cured. I also prayed alot, and I will pray for you, be strong and if you ever want a good book to read the Maker's Diet by a guy name Rubin ( not sure of last name) is another resource for eating problems, he had some kind of Crohn's disease he healed with food. Keep searching for the cure until you get it. Pam Holloway Hope this is the correct solution ( your last surgery, but Dr.'s are only human and make wrong diagnosis, hope they got this right.)
La traduccion es deficiente. Resumen..... Isagenix energia, malteada que te ayuda en desnutricion. Espero que sea entendible
Hola Lisa, consigue un paquete alimenticio de energia de la empresa Isagenix. Es empresa multinivel sera facil encontrar un consultor en tu pais. He visto buenos resultados en casos de desnutricion. Es alimento tipo malteada. Un abrazo y que Dios te bendiga
Dear, Lisa! I've just got an information about your situation, and my idea is, that you can gain some good results with the help of oro-chrono-dietology! There are some new type of food, where is no need to swalow it even, but all the engridients goes directly into the blood and gives feeding to our cells. You can find out more information here: www.oro.90.lv (info in Latvian an Russian) and if you send me your email - I will forward basic materials in English - where you can see description of how it works and all about 20 years of clinical tests, that has been made within a French laboratory. The same I can forward to any other, who wants to know more about this innovative method. My e-mail and other contact-information is here: http://oro.90.lv/?ct=22287130 Hold on, Lisa, and believe - everything' s possible - even impossible things or dreames can come true!