A good friend of mine sent me this website. I am 49 years old and my significant other became critically ill in May 2009. He is a singer/songwriter/acoustic guitarist (he is 48) and his music and business was taking off last year when his tooth broke, went to the dentist and 3 days later swelled up by 70 pounds. We tried the homeopathic route which lead to mega bills (they didn’t accept health insurance so we paid in cash-well-credit card debt). Lo and behold we were in the wrong place (if only they would have told us instead of charging us by the day) because when Dan (my guy) fainted in my backyard (he was on oxygen and severly swelled), was rushed to the emergency room, bled out, CPR, ICU for weeks and the doctors gave him no hope. They did say he would need a liver transplant but because he didn’t have insurance there was nothing more they could do for him. They discharged him while still on oxygen in a wheelchair. I did not take “this is it” as the answer. I focused on getting him Medicaid immediately, found a transplant center in CA that would accept him (they ultimately saved his life) and through months and months of getting our lives back we are now both stable (my instability for 8 months consisted of crying every day while smiling when I was around Dan to keep his spirits up).
A caregivers roll is bigger than life and we should all hold our heads high because WE are saving the lives of our loved ones. It is not easy by any means. Dan (my guy) can walk a couple of miles now, he is writing/singing & playing music again (music is also saving is life) which will come to pass as his second all original CD project and he has hosted his first ever open mic (acoustic musicians) just this past Sunday here in Sacramento, CA. We had to move out of our home state of NV (Dan lived there for over 33 years) to CA for proper medical care and to be close to the transplant center in San Francisco (2 hours away). Both my life & Dan’s changed last May. We are both world travelers and have enjoyed snow skiing, water skiing, horse back riding, travel and music in our past life. We are rebuilding one step at a time with music and there is no doubt in my mind that Dan has many years ahead of him once he receives his liver transplant.
We are both now “Donate Life Ambassadors” speaking out on the importance of organ donation (1 in 3 people die on the waiting list because of the shortage of organ donors in the U.S.). We both go to the local hospital to tell our story to those doctors/nurses who will listen in hopes that they won’t give up on their patients. Hope is all one has when faced with life threatening situations. The doctors need to be informed that there are places to go for hope. Namely, refer your patient to the person who knows what they are doing – it won’t cost the doctor a dime to do this.
Hope comes in the form of SUPPORT GROUPS. Attending liver transplant support groups has been our means of staying mentally aware and sane. We have even started our own Call In Support Group so that caregivers have a place to go even when they are unable to leave their own homes. We welcome you to join us at any time www.caringbridge.org/visit/caregiversupportgroup
I am a caregiver to the love of my life. I would not be here right now if it were not for the support from our friends and family. We have a long way to go but we will not give up HOPE. Thank you for allowing me to tell my story. There is much more in between but we are still here and our hearts go out to all of you. My guy, Dan, writes his own health care blog at http://www.caringbridge.org/visit/danielpalmer
We love you………