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………
Melisa
Hi DLH family. I haven’t written in a long time but I do come on this site at least a couple of times a week. You all mean so much to me. We moved all the way across the U.S. from CA to FL in July of this year. Dan has a better chance for a liver transplant in this region based on many things. I will be happy to explain if anyone has questions. The hardest part about the move is again my being away from my now 85 year old parents-they are my biggest support system in all ways. My brother retired early, sold his house in TX and moved to NV (where he has never lived) to live with them. I miss all of them very much. I have flown back twice since being here 4 months. Each time Dan stays in FL with his best friend & his wife. Because Dan has HE (hepatic encephalopathy) I haven’t left him alone in 3 plus years. HE is being recognized more and more-it is definately a known with liver disease. There is a liver transplant support group on facebook that both Dan & I frequent daily. I have had my share of breakdowns since being here in FL but it’s not because of Dan’s health at the moment. He is doing great in our “new” normal life. I have long time friends here where we live (that is why we moved to this area), although, they don’t really know me this way. One of them mentioned that I looked sad (funny cuz I was actually content at the time he said that). I will look for a support group to physically go to here-I still want to be with the people that “know” and those people are the caregivers. Thank you all for continuing to share your stories of strength. I’m still here. Melisa.
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Hi Melisa.
I’m a newer poster, but long-time lurker, and have followed your story. What you’ve been dealing with has been difficult, and a cross-country move can be pretty daunting, but it sounds like you have been handling the transition pretty well. Given that it helps increase the chances of a successful transplant, it sounds like it was very worth it. We went through a move with Mom (us first, to test the waters, then her), and even though she was terminal, and not eligible for a kidney transplant, she was able to get better treatment, which bought her a little more time than she would have had. A change in scenery can do so much good, and so does a great support system. It sounds like things are on the right track, and I hope there is good news on the transplant front soon. Please keep us posted. Hugs to you and Dan as you continue to build your new life together in FL!
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Melisa, Molly is right, sometimes a change can be good, and it’s great that you have long-time friends there and that Dan is doing so great in your new life in Florida. It all sounds really good, but then I hear you saying you’ve had some breakdowns not related to Dan’s health and that on a “content” day a friend told you that you looked sad. It’s marvelous that your brother picked up and moved so he could care for your parents, it should ease your mind knowing he’s there with them and yet in 4 months you’ve flown back to California twice to see them.
So Melisa, what’s happening with you? When he reaches the MELD score of 18-22 Dan will be accepted into a good transplant program, you’re among old friends, your show was well received and you’re doing good things in the transplant world, and your parents are safe and cared for – the weight on your shoulders should be lighter and yet it sounds like everyone is adjusting well but you. Is it only because you’re missing your parents/support system, or are there other issues that need looking at? What does Melisa really need right now that she isn’t getting?
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Sweet Melisa,
You are a true angel, and probably a born caregiver, as you have exceeded above and beyond. You have been through the trenches and over them, moved, become the face and voice of organ transplant, worn a smile, cried, cared, stressed yourself out… and wow..here you are in the here and now. OF COURSE THERE ARE “SAD” days…. hell Girl… what haven’t you given of yourself for your loved one? Jean asked…what do you need? I know you realize you can never go back to Kansas, life has changed, your life has changed… there are many times..we wish we could go back.. that things could be different.. but life happens and the good caregiver you are changed with it, moved literally with it, and continued on with it…. I think you need to decide just this once.. just for now.. just for today.. what makes you happy. You know at DLH you are never alone never… a word I thought would NEVER bring me comfort… but it does…… in the here and now, no matter what, we are here for you.. at DLH
~Char
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Melisa, I am sorry for everything you are going through now. It is very difficult and challenging, especially under your circumstances, to have to go so far away from those who have been there for your support during this ordeal. It is hard for your friends in Florida because they apparently haven’t seen you since this problem with Dan began and they just don’t understand. As you spend more time with them and they see Dan’s condition and what you are dealing with, I hope things will get better for you.
You are strong and brave even if you don’t feel that way right now. Your willingness to do what is best for Dan tells everyone the kind of person you are. It may just take a little while for your friends in Florida to get a handle on their new relationship with you. It sounds like you do need a physical support group because, Lord willing, your friends will never be able to fully understand what you are going through. You are far away from your comfort zone where you knew the doctors and people and they knew you.
When David had his transplant, we had tons of support. His mother was my best friend. However, in the years that followed, we lost both of his parents and moved to a new city so that during his final illness, I only had my son for support. We did have friends, but none of them could “empathize”.
I hope this has been some comfort to you. I don’t post much now, either, but I do follow everyone. If you ever need anything I can provide, you can get my email address from Jean or Char.
My thoughts and prayers are with you and Dan. May God grant you peace in this trying time.
Laura F
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Thank you so much Jean, Char, Laura & Molly for your “in tune” messages that were exactly what I needed. I cried from comfort knowing you are here and understand. Thank you. You gave me a renewed spark and I took full advantage of it. I found a place to volunteer so I could meet horse people, I applied for a part time job to work from home that I really hope I get and we bought a low income pass at the local state park so that Stella could run on the dog beach. I have made some new connections all within the realm of the things that are important to me. It’s getting better and it does have everything to do with my attitude and outlook for the day. Love you all.
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I’ve been thinking about writing for a couple of days because I have been crying for a couple of days. It also dawned on me that there really isn’t any one to call to cry on especially during the holidays and really, should there be someone to call to cry on at all? To have this site to at least put thoughts and feelings down and to know that there ARE people who care out there-namely the DLH writers is a relief. There really isn’t any thing for me to be crying about at this particular time. Dan has been stable for one year now. We are meeting with his hepatologist January 10th to talk about Hep C treatment. Dan has his plot in the community garden going and he spends a lot of time there (he can walk there from our apartment). He is doing super good! I have just moved my 83 year old parents from Carson City, NV to Sacramento, CA so that I can be available to them-they have never been here before in their lives. They now live 15 minutes away. My Dad will start taking coumadin tonight for his A-fib that the cardiologist here in Sacramento told him he needed to start taking. I snapped at the nurse on the phone today because she didn’t understand why my Dad did blood work yesterday and said that wasn’t normal procedure and I let her know that the nurse I originally spoke with told us to do it this way and that the original nurse rushed me through the process because she had another patient and now that nurse is on vacation this week-so-there is miscommunication going on right now. It is scary for me to take on the communication with a whole new set of doctors and nurses because I know how detailed the caregiver needs to get to understand it all. Basically I will be the one to answer the questions when asked so I need to be at the top of my game. It takes time to trust the medical professionals and I need a really gentle touch because of my past life saving actions that saved Dan’s life a couple of years ago and it’s because of my diligence to this day that we have gotten this far. To be responsibile for my partner & my Dad is very scary and emotional. Being the one who asks all the questions and needs to know the why, what and how of things is a huge responsibility and I haven’t taken any of this medical stuff lightly since the beginning Dan’s emergencies 2 years ago, and so, I cry. I found myself saying to myself yesterday, I just want my old life back, and then I cry. My old life was one filled with working for an income, horse back riding, snow skiing, water skiing, a glass of wine with friends, dancing, traveling (I did all of these things as an individual and with Dan) . I turn 50 in March and it feels like I am 90 sitting in a rocker reflecting on my life. I know it’s going to get better and I already feel better just by writing. I would have just called a friend today but I have decided to not make a big deal about this painful emotion that hopefully will go away. Thanks for listening DLH. I will be fine. I just needed to reach out.
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Melisa, this is exactly why we are here: because being a caregiver can be so incredibly overwhelming sometimes, and no one understands like someone who’s been there before. To this day, I feel so good when I walk through the doors at Mass General Hospital, because when we went there it was all out of my hands – the doctors were in charge and the weight off of my shoulders was immense. It’s perfectly okay to cry – healthy, even. You’re crying for the loss of a time of innocence in your life, and to relieve some of the pressure that’s built up inside of you. You want to do your best for your husband and father, and having your medical team not on the same page is scary, of course – these are the people you’re counting on…naturally it’s going to scare you if they aren’t on the same page! We’re out here listening, sending a gentle hand on your shoulder. ~ Jean
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Trust me Melissa, I know how you are feeling and the heavy weight of responsibilty you carry. And I have every confidence you will be fine. For one, because you have no choice and two, because you are a strong woman with a heart full of love. Your husband and parents must appreciate you so much. It is hard to endure the pain when you feel all alone, and honestly, a lot of friends don’t know how to handle a friend in pain. I am glad you came here. Imagine a strong pair of arms wrapping around and just holding you, letting you totally relax. Hang in there {{hugs}} Joan
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A great friend sent the below website to me and I feel the need to share it here. I am still reading through the site. You may need to copy and paste to open. It is National Caregivers Month and my hope is when I read through the site there may be some type of financial support that can be offered to help caregivers. Thank you for allowing me to share this site. http://www.whitehouse.gov/the-press-office/2010/10/29/presidential-proclamation-national-family-caregivers-month
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Hi Melisa! I was thinking about you guys on Saturday morning when I was driving home from work. I remember that you said that your husband was from the Cleveland, Ohio area, & it was snowing here in west central Ohio. When I got home, I put on the Weather Channel & they were showing lake effect snow blowing off of Lake Erie toward Cleveland! I was thinking that your husband was probably glad not to be in THAT chilly mess!!!
Hope everything is going as well as can be expected for you (actually,I hope that it is going GREAT!).
Take care!
Denise H
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Thank you for sharing, Melisa
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Hi Char, thank you for sending us your love on Dan’s caringbridge healthcare blog. I would love to hear from you on my personal email address if you wish to write. It is melisacaregiver@hotmail.com I am making a special wish for just you every day. With love, Melisa
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Hi Char, thank you for sending us your love on Dan’s caringbridge healthcare blog. I would love to hear from you on my personal email address if you wish to write. It is melisacaregiver@hotmail.com I am making a special wish for just you every day. With love, Melisa
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Hey Melissa,
Thanks much for sharing. While I, like the majority of Americans, voted in a way that shouted to President Obama, “We don’t like how you’re handling this country and your role as President”, I’m so pleased that he has designated this month, in 2010, as “National Caregivers’ Month”!!! Though I feel that less government involvement (mainly financial) is better, I very much appreciate President Obama’s acknowledgment and support of primary caregivers
Thanks!
Ann
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