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………



38 Responses to Melisa C – organ donation, liver transplant

  1. Melisa says:

    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.

    • Molly says:

      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!

    • Jean F says:

      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?

    • Char says:

      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

    • Laura says:

      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

    • Melisa says:

      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.

  2. Melisa says:

    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.

    • Jean Fogelberg says:

      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

    • Joan says:

      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

  3. Melisa says:

    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

    • Denise H says:

      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

    • char says:

      Thank you for sharing, Melisa

      • Melisa says:

        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. I am making a special wish for just you every day. With love, Melisa

    • Ann says:

      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 :-)


  4. Melisa says:

    Thank you all who are checking in on us. It means a lot, truly. An update, Dan is still stable at home at 10 months now. In an earlier writing I spoke of “E” (encephalapathy which is common in liver patients). Well, a wife who as a couple usually calls in to our Saturday, 2pm PST call in support group hadn’t called in for a couple of weeks and come to find out that her stable 8 months turned in to a medical emergency a couple of weeks ago when her husband wasn’t able to wake her, 911, ICU, restraints which led to a coma for 2 days. It was the most frightening experience they both ever had and now they know what “E” is. She is okay now and will be back to work next week. Is that out of this world or what! My reason for getting you caught up is because every Saturday we have a call in group and an invited guest tells their story to our group of callers and we open the call for us to ask the “feature story guest” questions. So far we have had as our featured guest: A 3 time transplant recipient who is now a life coach and hosts 5 support groups in L.A., a person who is cured of Hep C, founded her own Hep C educational group here in Sacramento and is assisting people with Hep C to get cured, a liver transplant recipient who now has diabetes and is undergoing Hep C treatment right now-he also hosts several support groups, the outreach manager for our local organ donation procurement, and more absolutely amazing people who are alive to tell their story and educating people in any and every way they can by telling their story. My question is, does any one know a person who works in stem cell research and would like to educate our group on one of our call ins as to what is happening in the world of stem cell research? We are a small, intimate, heartwarming call in group at this point 5-10 people who are doing everything we can to gain knowledge, educate, disseminate and learn as much as possible on these calls. My email address is melisacaregiver@hotmail.com if you wish to send me a personal note outside of DLH. Jean, your site is working miracles in more ways than one. I don’t know what I would do without you. Love, Melisa

    • Ann says:

      Hi Melisa! Thanks for the update. Hey, I did a bit of Google searching on stem cell research, and I was most impressed with the University of Michigan’s Stem Cell Research Dept. We live in the Iowa City area-home to the Univ. of Iowa Hospitals-also a very good facility. However, I didn’t find much info. about stem cell research on their website. Michigan is thought of very highly for their quality of healthcare-both in educating and providing of quality medical care. Michigan is certainly a powerhouse in football, but in the Big Ten, it’s also known for its top notch academic programs. I’ll provide you with 2 links: one specifically about their stem cell research dept. and the other about U of Mich. Hospital’s 2010 ranking(s) in U.S. News & World Report. U.S. News has been doing these rankings for years, and they are very spot-on. Let me know if you get some positive feedback…I would think they would be more than happy to help you. Good luck, and take good care!!




      • Melisa says:

        Hi Ann, thank you so much for doing some research, we are very grateful that you took the time. Our program works really well with someone who knows someone who knows someone so we have an “in” so to speak. I will do some digging in to the sites you posted. Thank you U. of Michigan for educating, ranking and doing your part in making this world a better place for our loved ones which ultimately assists in the care of the caregivers too!.

  5. Melisa says:

    Char, thank you for sending us your love on Dan’s healthcare blog. I hope you have found a little bit of time to take some healing breaths. Someone not long ago said to me to have 3 nice things to think about when I want to take a moment to go to my happy place or even to go to when my thoughts are heading in the wrong direction. My 3 happy things are when I get the chance to ride my girlfriends horse named Schmitty, walking on the cobblestone streets in Rome when I was there a couple of years ago and turning our dog Stella on her back and scratching her while she smiles like she is Snoopy. We are celebrating because the husband of one of our caregiver support groups (UCLA) is being transplanted with his new liver today (the gift of life). Our local Hep C group here in Sacramenot, CA always does the happy liver dance when we hear news like this. Jean, I just read your writing on Guilt/Your Heart and from all the way across the U.S.-THANK YOU! I look at this site everyday and everyday it helps me. Shine on…………

    • Jean Fogelberg says:

      Hi Melisa, I’m glad to hear about the UCLA liver transplant, hoping your Dan will be getting that call soon as well. ~ Jean

  6. Melisa says:

    Melisa here. As you may know, both Dan & I are heavily involved in as many Hep C, Liver Transplant & Caregiver Support Groups. A good friend of ours called us today to tell us Gregg Allman from the Allman brothers just days ago received a liver transplant. That is such great news to us because not only is he a musician (my Dan is a musician) but he has put another famous face to the plight of those who have Hep C that may lead to a liver transplant. My Dan is continuing to try and perform musically as we wait on the liver transplant list. Gregg’s continuance of putting himself on the musical tour calendar while he waited for a liver transplant is a true inspiration to us. Even though our wait my be days, weeks, years, it really says to us to live everyday to it’s fullest. Thank you for letting me share.

    • Denise H. says:

      Hi Melissa. I just wanted to send some “well wishes” your way from the sauna box that is also known as Ohio!
      I had a friend who had a liver transplant DECADES ago (when it was still a new process) & he did wonderfully with it so I am hoping that your Dan can get his done quickly.
      I was just sitting here trying to think of famous people, other than Gregg Allman, who have had a liver transplant & the only one that comes to mind is Larry Hagman (“J.R. Ewing” in Dallas).
      I was actually surprised when I read that Gregg Allman had a transplant because as far as I remember, he was still touring last year.
      He must be tough as nails!
      Take care & I hope that your wait will only be hours!
      Denise H.

      • Melisa says:

        Hi Denise, thank you so much for your nice note. Dan is from Cleveland Ohio. Where in Ohio are you from? We are in an interesting place on the liver transplant waiting list as Dan’s MELD score is at a stable 12 this month. This is great news for us currently because if Dan can hold out with stability for a couple of years there may be medical advancements that will be available that could take the place of a liver transplant. That is why stem cell research is crucial to many, many people in this world. We have a friend that has been on the transplant waiting list 12 years and that was very shocking for us to hear when we first started out learning what the waiting list really meant. 12 years is a very long time to live with encephalapathy which is a common occurrence for people with liver disease. Encephalapathy is the reason I never leave Dan without someone being with him. I have experienced the most scariest times in my life when Dan has been encephalapathic (it is a build up of ammonia in the brain that without immediate medical help can lead to a coma). I have had to get Dan to immediate medical care on 2 seperate occassions (1 time while on a hotel shuttle bus in San Francisco) due to what Dan & I call the big “E”. A liver transplant is the ball that we keep our eye on as we manage our unpredictable stable days at the moment. We appreciate every one who checks in with us all across the U.S. With love, Melisa & Dan

        • Denise H. says:

          Hi Melisa (& Dan)! AHA, a fellow Buckeye!
          I am from Springfield, which is @ 45 miles west of Columbus & 25 miles northeast of Dayton (just off of I-70). Tell Dan that he’s not missing too much here, Ohio is pretty much the same. Hot & muggy in the summer & cold & snowy in the winter (although Cleveland is usually snowier than Springfield, I think that we have almost caught up the past 2 winters).
          That’s good about Dan being stable! Like you said, every day is a step closer to a cure.
          Tell him that he needs to hang in there & regain his health (in whatever means it takes, a cure or a transplant) so that we can all be his groupies when he becomes more famous than …hell, I don’t even KNOW who is famous anymore! He has a clear field…we’re WAITING!!! Ha-ha!
          Wouldn’t it be nice if some semi-respectable magazine, or news show, would do an in depth interview with Gregg Allman that highlighted his health issues? He definitely could shine some light on liver issues! As I said before about how interesting of a book that Jean F. could write, I think that Gregg Allman would tell an interesting tale too! His fame could be the hook to catch you but the health story would be what you remembered.
          I saw his quote that he intends on being out of the hospital & attending his daughter’s wedding in July. And that he is 62 years old, he can’t change his past but he intends on making the best out of the rest of his life! Sounds like he has a good attitude.
          Hang in there & take care of yourself too!
          Denise H.

        • char says:

          Hi Melisa and Dan,
          We are all thinking of you both,and really hoping that phone will be ringing very soon. In the meantime, its so great to have your input here at DLH.
          With all of my best wishes for you guys for a wonderful week ahead.

  7. Cindy says:

    Melisa, thank you for sharing your and Dan’s amazing story with us. What an inspiration you both are! It’s wonderful that you started a caregivers support group even before you knew about the DLH site. DLH has been such an inspiration and comfort to me! Until someone personally experiences the demands of a caregiver, there is no way they can ever fully understand how difficult, trying, and stressful it can be, especially when the caregiver also has the demands and responsibilities of a full-time job and child. The financial strains can be extremely stressful and overwhelming, as you well know. I have also found that CaringBridge is a wonderful and simple way to help keep family and friends updated on my husband’s status–he was diagnosed with Islet Cell Carcinoma of the pancreas with metastases to his liver and spine in February, 2008, although he began having problems in the fall of 2007. We are blessed that he is in a “stable” condition at this time. The link to his CaringBridge web site is http://www.caringbridge.org/visit/peterkevinpoole. I accessed Dan’s CaringBridge web site and watched the video about your caregivers’ program. I’m sure that many have already benefited from it especially since they may not have known where else to turn for support. Until one experiences it first-hand, I don’t believe that anyone can truly relate to what a caregiver experiences during a life-changing illness or event. So many extreme emotions…shock, denial, sadness and heartbreak, anger, and especially uncertainty and tremendous fear of the unknown and what is to come. I will definitely keep you both in my thoughts and prayers in the days ahead. Your story has touched my heart.

    <3 Cindy

    • Melisa says:

      Hi Cindy, I truly can feel your heart when I read your note. Thank you from the bottom of my heart. I was just telling a friend of mine today that I thought I had felt pain and heartbreak before in my life but nothing can ever compare to the pain I went through when going through the shock stages at the beginning and middle of this wild ride. We really are in the miracle stages of Dan’s cirrhosis since Dan is way stable right now and it is as if the past year never happened. Right now I am meeting some incredible people and I am finding some really gentle souls where we live that I feel comfortable being around. Complete strangers (so far they are caregivers themselves) are becoming my closest friends and no doubt lifelong friends. Cindy, I hope to hear more from you and I am going to go to your caringbridge site now. Warmly, Melisa

      • Cindy says:

        Dan is a true miracle, as is Peter! I, too, have met some amazing people throughout our journey. We have received so much love, support and kindness, even from strangers, and it has been overwhelming and touched our hearts. We are so thankful to have been given the extra time that we really did not expect to have when Peter was first diagnosed, and we can only attribute it to the many prayers that have been said on his behalf. He has been stable for over a year which has been such a huge blessing, and even though he doesn’t feel very well most days, he is still with us and getting to do some of the things that he enjoys every now and then. God obviously has big plans for Dan and Peter, and I believe that He has already used both our stories to reach others in many positive ways. I know that this experience has changed my heart and perspective on life forever and made me really appreciate what is most important and how precious our loved ones are. I’m very glad we found one another on DLH, and I will continue to follow your journey. I’m so happy that Dan is doing well. He is blessed to have you by his side! <3 Cindy

  8. Ann says:

    Melisa, What a cool, strong caregiver and advocate you are!! I read Dan’s story on CaringBridge. Isn’t that a neat website?….such a great way to keep family and friends updated and to send uplifting messages :-) Also enjoyed seeing you and Dan on the youtube video. I just can’t believe how much the two of you have endured, and yet you have the energy to spearhead a caregiver support group. I had never previously heard of Burners Without Borders, but am so glad you received a grant from them!! Keep hanging in there…the two of you are like Little Engines That CAN!!! I’ll keep both you and Dan in my thoughts/prayers. BTW, I am an organ donor….in Iowa they just ask if you want to be when you get/renew a driver’s license :-)

    Take good care,

    • Melisa says:

      Hi Ann, your note feels so good. Thank you so much. Because of our first and only grant at this point we gifted our last weeks call in support group feature story a $25 gift certificate at his local grocery store. Because he (our feature story) doesn’t drive, doesn’t have a partner and relies on his friends (he has many) we felt that the grocery story card would benefit him and it did. It’s hard to accept gifts but when he knew it came from a grant he accepted. Thank you for being an organ donor. Thank you for sending a happy, spirited note. Made my day. Dan is one of those people in this world that touches everyone he meets. I don’t know what I would do without him. Much love to you Ann and thanks for reading about us. Melisa

  9. Susan says:

    Melisa, I am so glad things turned out well for you and Dan and will hope and pray they continue to progress. I have two friends with Hep C, one has already undergone his first transplant and is on a waiting list for a second one; another has managed to escape it and underwent treatments similar chemo and nearly died from that. But she has completed treatments and is doing wonderfully, just having returned from an Alaskan cruise. My husband, son and myself are organ donors. Bless those who need these vital donations and bless those families and lives who have to be lost in order to give that precious gift of life. I will be visiting Dan’s website. Please visit often and let us know how things are going. The folks here are just great!! Blessings-Susan

    • Melisa says:

      Hi Susan, Thank you so much for writing. I’m not sure if you are the Susan that wrote your New Story on this site but if you are-you deserve all the love that this world has to give. Do you like massages? Let’s get you a massage, hot stone massages are great. I wish I were near you so I could hug you. Thank you so much for your kind words. We are doing well today and there are definately days when I don’t want to talk at all but it too passes. I am happy I am on this earth and I am happy you are on this earth. I daily and frequently try to find time to just think about nothing when I get the chance, somehow, that helps me because sometimes the things that happen are just not understandable. It really does mean a lot to hear that your two friends withstood what seems like the impossible at the time. Let them know they bring hope to many people. I had Alaska on my mind just today. Breathe deep. Love, Melisa

  10. char says:

    You are truly an exceptional person, to be able to pick up the ball and run with it, after
    your life changing experience is truly amazing. We as caregivers at times, get so tired and stressed, but you have made it work for you and countless others. Thank you for getting the word out on organ donation. Many, many blessing and I look forward to reading more of your story and Dan’s blog.

    • Melisa says:

      Hi Char, YOU-are wonderful. Thank you for your note and also your story. Keep the posts going, incredibly healing. We live in Sacramento, CA which we have learned since we moved here a couple of months ago for proper medical care, that Sacramento is the #1 city in the nation to treat Hep C. Yes, Hep C can be cured depending on the persons circumstance, geno type etc. We have landed in an extraordinary place. Because Dan doesn’t drive, we were out walking our dog Stella today and met up with Stella’s boyfriend Louie and unbelievably the young girl walking him revealed to us that she has Hep C and she can not find a doctor that will treat her with respect. Well, she met just the right people today. We invited her to the Wed. night Hep C support group which is tonight and she and her Mom are going to come to the meeting. Our dear friend is the facilitator of the support group. He had a liver transplant 2 years ago in Sacramento, CA (they have since closed the liver transplant facility in Sacramento) and he is as of today starting treatment for Hep C (a year long grueling process to rid his body of the virus). He is one of those remarkable people on the planet and we are fortunate to call him our friend. So, even our dog Stella is out there helping people find hope, encouragement and most importantly connecting people with people. Char, your raising hundreds of thousands of dollars for breast cancer research and programs is an “Oprah” story if I have ever heard one. Wow! I hope your husband is doing okay today. I hope YOU are doing good today. We are having a really nice day today. I’m soaking it all in today. Thank you for reading our blogs on Dan’s healthcare site. The reason I started a call in support group is because when we first moved to Sacramento we didn’t know anyone and I bombarded my long distance friends with crying calls every day. I didn’t have a support group to turn to in the beginning and I didn’t know up from down for a long time. The call in group we have going on Saturdays keeps me motivated every week to do better. Char, feel free to call in to our group any Saturday, 2pm CA time at 1-218-936-4141, the access code is 1965503#. Our goal is to have any one from the U.S. call in and eventually when the group gets too big for our call in, that someone from the group will start up their own call in and we keep branching/reaching out. At some point we can work on funding for each of the call in groups to do what we can for people. I know that I can’t work right now because Dan needs 24/7 monitoring and I know that I am not alone. I have been saying for many years now that I wanted to do something extraordinary with my life and I had no idea it would come in the form of caregiving to my partner. Keep us posted on you……..Melisa & Brother Dan (Dan’s stage name)

      • Char says:

        Melisa, you really amaze me, I don’t know how you do it all, and now even your Stella is helping out! Your work is so beneficial to so many people out there alone, who feel they have no one or where to turn, just as you once felt. You really are doing something extra-extraordinary.
        Bless you for all that you do. I have always felt that I needed to do something to help others, and you, my new friend, are an over-achiever!!!!!!

  11. Melisa says:

    I was going to copy and paste the Maine organ donor registry from online but it won’t paste, so, to be double triple sure for your state, go to http://www.donatelife.net and click on Choose Your State, Maine and sign up online. I know that in CA if the pink dot is laminated on the drivers license than the person in CA is a registered donor. I am going to guess that a laminated red heart on your drivers license in Maine is enough but to be absolutely sure, I would go on the Donate Life site. I have always been an organ donor but it never really hit home until now. Now I know that the U.S. is not educated on the importance of being an organ donor and there are many myths and urban legends that are exactly that, “myths”. The most remarkable people I have met through this process have been those that are recipients of organ donation, families of those who have given the gift of life and the over 100,000 people in the U.S. who are waiting on the organ transplant list for the gift of life. Jean, you are saving lives. From all the way across the U.S. (CA), we love you. Melisa & Dan

  12. Melisa says:

    Hi Jean,
    It is so wonderful to hear from you personally. Thank you. There are probably a lot of factors that set off Dan’s liver failure. He does have Hep C but had been living with it for many years so the dentist visit probably just set the whole thing off. Needless to say, we now are connected with the dental school attached to the transplant center in San Francisco and Dan is involved with well known dentists, Dr. Subar & Dr. Wong. Dr. Wong will be putting together some fundraising efforts to help his low income dental patients and has asked Dan to musically perform for these efforts. We are thinking of putting together a fundraiser that will involve Donate Life and UOP (University of the Pacific Dental School) in October 2010 if we can pull it together.

    Jean, my apologies, I don’t know what U.S. state you live in? If it is CA and your drivers license has a pink dot on it and it is laminated than you are registered as an organ donor. If it is the pink dot that peels off, you will need to sign up on the CA registry and you can do that by going to http://www.donatelife.net and choose your State and do everything online. Thank you so much for being an organ donor.

    I am going to start referring people to your site as we go along with our Call In Support Group. We do have a feature story every week and now that I write this, it would be our honor to have you as a feature story on one of our call in’s. May I invite you to be our feature on either our July 17th, July 24th or July 31st call in? I am planning a month out. Let me know if you are interested in telling our group your story and I will let you know the details of the call in. You can reach me at melisacaregiver@hotmail.com

    You are holding a lot of people together, not only by being present but also with this incredible site. Thank you. I feel surrounded by angels. Melisa

    • Jean Fogelberg says:

      Thanks, Melisa. I read Dan’s Story on the blog, and learned about the Hep C, etc, and saw the YouTube video. You’re both doing some great things. I live in Maine, and under my photo there’s a red heart and it says “Organ Donor” (printed and laminated). Am I official? I’ll contact you directly with questions I have about the call in. ~ Jean

  13. Jean Fogelberg says:

    Thank you for sharing your and Dan’s story, Melisa. You’re right – we should hold our heads high – oftentimes we are the ones who fight for our loved one’s lives when they can’t do so for themselves. I’ll have to read Daniel’s blog to find out the link between the dentist and the organ failure. I’m listed as an organ donor on my driver’s license. Is that the same as being “registered”? ~ Jean

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