Why not join us?
Smart Patients is an online community where patients and their families learn from each other.
Already a member? Sign in here.
we do well to remember how blessed we are to have the recovery we've experienced. Still we are dealing with BIG changes to our lives, and the uncertainties and frustration are real. This is why I have to remind myself not to compare myself to others...we...
I encourage you to go to the TMA website, and in particular view the videos from the 2013 Symposium that focused on Repair & Rehabilitation
I also wanted to mention how encouraging the 5 year survivor list from Cathy's EC Cafe was for me. My initial research 7 years ago terrified me. Reading that list calmed me and gave me hope, I'm glad it's not lost.
Just want you to realize how far reaching all of your help is.
Thank you all for sharing your experiences. I will be beginning HDIL-2 and your stories are quite inspiring!
You've come to the right place to vent your worries and hear from some very brave and smart ladies. There are many websites to get technical information but on this website you can ask questions and get answers from women who have "been there" and understand.
Wish that this was available when I was a frightened 19 year old and no one could give me advice.
I think reaching out is an important step in recovery. Glad you shared your story!
We all have ways that we can contribute. We just need to listen to what our hearts are telling us. It may be a whisper or a shout, but when it happens you will know. Being there for your family and friends may be the most important contribution that you make.
Knowledge is Power, and Smart Patients provides a great deal of both!
I've had two transplants and I'm seeking the same info. I'm staying clear of kids for now.
We all have a lot of experience and each of us is an individual in treatment. We learn from each other so keeping us posted helps us as well. Welcome to the community.
Mom's knitted socks at night are my best friend!
I thought that one of the crosses a patient with serious illness had to bear was the comments by well-meaning friends who felt compelled to offer suggestions for alternative treatments. My suggestion is to thank them for what they said, ignore the advice,...
Thanks to your info we have been approved where the copay for Revlimid will now be $20 for a drug I am told cost $17,000.
I am trying to make sure my kids understand what they need to so they can begin to make their own decisions.
I'd also like to add that this site is an excellent place to find information on clinical trials. Someone is doing a lot of work to maintain that database, and the effort is greatly appreciated.
l like all the sharing - it makes one feel that you are not alone
Don't panic, keep calm and carry on and remember "She who fears suffering is already suffering from what she fears."!
I figure it's better to be some what over-committed than not adequately prepared. Especially for something so important as life and it's quality! Not just for me alone, but for family, friends, and others I may encounter.
Anyways, I am very interested in getting HLHS conversations going! Being involved has been exceptioally beneficial to my transition, and battles with self identification, as a CHD survivor.
Remember you've had a shock to your whole system. Sleep when you need to. Take pain meds when you need to. Eat mac & cheese when you need to. But make sure to stay hydrated
Knowledge is power and nurses are irritatingly good, at being advocates!
By experimenting, I found I do better taking Dex- at night. When I initially took it in the morning, the first time, I got very flushed
Going to Mayo Clinic for an ultra sound literally saved my life.
For both patients and caregivers, the sense of loss of control, despite all preparation, is the most infuriating one.
I wish I'd known that the time when the patient is in the hospital is the easy part.
The goal is a long healthy happy future! She may want a family. A 24-year-old deserves to fully understand the effect her cancer and treatment may have on her ability to have biological children in the future.
Smart patients is my first stop in the morning and my last in the evening. I am a better caregiver because of you. SP also has given me personally the strength that I need.
After surviving my Ivor-Lewis in 2006 & unrelated lung CA in 2009, I decided to give myself a special gift. I always loved horses & always wished for one. So, I fulfilled my wish.
KEEP THE CUTTINGS!!! Have a hairdresser make you a swatch of bangs (on velcro) you can fasten into the front of a cloth turban.
Take a picture of your eyebrows and practice drawing them so you'll be ready if they fall out.
It's so nice of you to share such valuable information as often as you do! I am grateful for this and will keep you and the group posted of anything I learn.
Here are my pragmatic tips for the newly-diagnosed ovarian cancer patient. Remember, I'm a survivor, not a healthcare practitioner.
Try to do what you enjoy but don't overdo it
The only care it requires is that you keep it clean and if you need to shave the area for ease of placing a tagaderm during treament, use an electric razor, never a straight razor. I also use a prilocaine/lodocaine cream about an hour prior to being accessed.
It means a lot to find out you aren't the only one with this disease because sometimes it can be lonely.
Getting my dancing stamina back became my goal and indication of healing.
Great news! Nivolumab was FDA approved today for Melanoma here in the USA!
Sometimes the answers come from unexpected places, second and third opinions don't hurt.
Please feel free to ask anything- there are some really well informed folks here. I credit this list with giving my brother the wonderful 9 1/2 years we have had since his diagnosis- he's going strong. There is hope!
we all `struggle to understand and accept what has happened to our health ! Be gentle with yourself and I hope you find something that helps.
Need Oxygen over here please..:)
Recovery from Ivor Lewis surgery is a slow process.
Our medical professionals have a lot on their plates and access to a forum where they will hear the patients' side of things can only be beneficial to everyone. I also appreciate the fact that this will be separate from the patient site. Patients do need...
It looks like someone has revived Cathy's EC Cafe... Thank you, whoever that is!
Everyone handles their cancer diagnosis differently, and most of us always think that it only happens to other people, not us, so when we first hear those words, it can be hard to digest and easy to deny.
Holding your Dad's hand as he passed on his journey is a wonderful gift, both for you and for him. Please accept my condolences for your loss.
Also I'm a private person so it's nice to have an outlet like this where others can at least somewhat understand what I'm going through without thinking I'm crazy.
Recovery is not easy, that's for sure. It does keep getting better though.
view a slideshow of quotes
Click on a tag in the wordcloud below to find quotes from other topics.
Join the conversation
Request an invitation to join Smart Patients.
Already a member? Sign in here.
© 2017 Smart Patients, Inc., all rights reserved.
are licensed under the Creative Commons license.