Sept. 24, 2007 -- Last week, "Nightline" televised a series of segments on life and death. Upon airing each broadcast, we received hundreds of e-mails with questions, comments, thoughts and prayers for the people featured in our stories. Below are their responses to some of your thoughts.
Thank you for your contributions.
E-Mails for Stephen Dziemian
I was diagnosed with PSC at 57 years old … what were some of his symptoms he started to get right before his liver was in great need of a liver transplant? I hope to hear from you soon. Thank you and God Bless! -- Vivian Coleman in San Antonio, Texas
Vivian, as your PSC progresses you will feel tired and lethargic. For me the fatigue started around nine to 10 months before my eventual transplant and was really bad the last three months. I also started to develop encephalopathy, which is a medical term for confusion and forgetfulness. In April I had to stop driving. In late May or early June I started to have trouble using my computer and reading. It was difficult to concentrate on almost everything. I would be in a conversation and forget what I was talking about halfway through. Then the last few weeks before my transplant the encephalopathy progressed to the point that I couldn't even use a phone. I would try to dial a number and transpose digits or forget numbers. I hope this helps, and good luck in the future.
What are the potential solutions to these dire situations? As a fellow sufferer of PSC since 1989, being evaluated for transplant on Oct. 1 … I might be facing the same excruciating search for a donor at some point soon, but having no immediate family, close friends or the kindness of strangers may be my only hope…-- Jeff Sullivan in Fort Lauderdale, Fla.
Jeff, I wish there could be organs available to everyone who needed them, but unfortunately no matter what policy they have for organ donation there just aren't enough organs for everyone. I felt equally frustrated when faced with the prospect of waiting for a liver knowing what the odds were of getting one in time. I was given a book that really helped a lot. The book is about an Olympic snowboarder named Chris Klug who also had PSC. The book is called "To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder." It is a great book.
The risk of cholangiocarcinoma or other type of cancers is very serious. I was given many CT scans, MRIs and yearly colonoscopies in hope that if I did develop some form of cancer it could be found early. The last four or five months my blood work showed tumor markers were rising with each lab draw, but they never saw anything.
A few weeks after my surgery, pathology results showed that I had a cancerous tumor in my old liver. I was lucky that it was contained in my liver and had not spread. For anyone with PSC their doctors should always be on the look out for cancer. I wish you well in waiting for a new liver and I hope this helps.
I suffer from PSC and autoimmune hepatitis, so I was very glad to see this show. Thank you Stephen for having the courage to go public. It sounds as though you had many years with the disease when you were symptom-free, which is great! I'm very glad your transplant went well, and that you're back to being healthy. And I'm very glad you were able to find a living donor, who is also doing well.- Marie Nilsson in Tarzana, Calif.
Marie, my decision to go public was an easy one. I felt alone with my PSC for many years before I was able to find support groups online. For the first 10 years of my disease I had only a couple of symptoms: mild fatigue and itching. The itching was the worst; I would not be able to sleep at times because of it. I also would tear my skin up by scratching so much. When my itching had eased my wife would joke with me about that I finally had hair on my legs and my chest. I would scratch so hard I would scratch it off and only had small patches of hair on my legs and my chest.
Many people didn't understand that I had a liver disease -- I looked OK -- and couldn't understand the severity of the itchiness. Trying to explain that it felt like you'd have poison ivy from head to toe was difficult for people to comprehend. I wish you well in the future and glad this story was able to help. That was the main reason I wanted to do the story. I figured if I even only helped one person it was worth it.
E-Mails for Carlo Morrisey
Great story! The online transcript mentions your faith and how it helped you make a decision this big … Could you elaborate? I would like to know more about the foundation of your faith that led to such a great response.-Wade, Sioux Falls, S.D.
Wade, I was raised Catholic, and as I get older my faith has become more important and I think it has become easier to be guided by it. Probably because as I get older I realize how much I have to be thankful to God for. Basically, I try to keep it simple, our Lord said to love God and to love our neighbor as ourselves, I wish I could say I always practice it but I do try, and in the end I think what helps me is to give Him thanks, pray, and do my best to treat others kindly. Unfortunately we're all human and sometimes my best falls miserably short.
Hi, it's John who has the same disease as Stephen had, but I'm a few years down the road from a transplant, I think … Are you happy with the results of both operations? I need to know because I might have a donor sometime ,and I want to know how it is for them. It's my main concern as to what happens afterward, or God forbid one or both don't make i…-- John Whitt in Tollhouse, Calif.
John, I'm sorry to hear that you have this disease and pray things work out for you. I would say for me I had no choice but to step forward to see if I could help Steve because if I didn't and no one else had, I think I would have been haunted by my failure to act. It's been three months since the surgery, and as I heal and get back to normal a little bit each day I know it was the right thing for me.
For me it was difficult because thankfully I've always been healthy, so this surgery took a very healthy person and made him sick and weak for a period of time. I think a donor has to understand that it is major surgery and you'll be hurting for a while. But the reward, at least for me, of knowing I helped someone who was in a big jam, makes what I went through seem well worth it, and I'm certain as I get stronger it'll feel even better. The donor also needs the love and support of his family, I was lucky my wife, daughter and friends were great through this.
As far as the risks, everyone has to come to terms with this, but I had confidence in the doctors at the Lahey Clinic. The treatment I got there was wonderful. I hope this helps and I wish you all the best.
E-Mails to Aimee Chamernik
Aimee, your story touched me deeply and I'm glad you shared your experience. My question is: How do you find your strength to stay focused on your family? Does it come from our higher power or simply knowing your family cares and loved you so much? Thanks again for sharing your amazing story!-- Joel Ybarra, Phoenix, Ariz.
Thank you for your kind words, Joel.
I find strength in many places:
Thinking about what I want to teach my children about how to deal with adversity;
Focusing on quotes from books, or movies, or song lyrics that inspire me to make the most of whatever time I have;
Finding friendships in unexpected places;
Finding joy in the mundane ("life is making tacos");
Finding purpose and meaning in each day, despite my declining physical abilities;
Knowing there is always someone who is worse off, and reminding myself that my time would be better spent trying to find a way to help them than feeling sorry for myself;
Reminding myself that, particularly with this disease, however bad today is, tomorrow will only bring more challenges so I better make the most of my time and abilities today; and
Trying to find ways to make a difference so I can leave this world knowing I did all I could to wipe out ALS.
And despite my initial reaction to think, "No, don't love me that much," out of a desire to protect my kids from future pain, I now realize that love is the greatest gift of all. Absolutely, I am strengthened by the love of my family and friends. But interestingly, I feel equally strengthened when I find ways to pass that love on.
Finally, there is my faith. I have spent a lot of time reading, discussing, exploring, questioning, debating, seeking and refining my beliefs. It's been a frustrating and wonderful journey. At this point, I consider myself more spiritual than religious, although my family is active in a wonderful church community. I also consider myself a work in progress; while I try to be a good Christian, I realize I fall far short far too often. But I keep trying.
Aimee, my 38-year-old husband was diagnosed with this horrifying disease six months ago. My question is: How are you making it all work? How does your spouse care for you, work, and take care of the children? Are you guys in a support group? Do you have lots of family help? - Gina Arblaster, Erie, Pa.
Gina, I am so sorry about your husband's diagnosis. I wish you all great strength and courage in the struggles you will face.
I am fortunate to have a really terrific husband who would take on any burden to lessen mine. He works full-time and then comes home to another full-time job in many ways. I do what I can, but it's less and less as time goes on.
And we definitely let some things go longer than we used to. Dusty blinds or a cluttered counter are way less important to me now! The kids are terrific helpers, and they are capable of doing many small jobs. Crazy as it sounds, the older two would sometimes skirmish over who "got" to make lunch this summer!
And we are fortunate to have family and friends in the area who are a wonderful support for us. One of the hardest facets of this disease for us has been accepting offers of help. When people say "let me know if I can help," it's hard to take them up on such a nonspecific offer. But if you sit down with your husband or a friend, you could probably come up with a list of errands and chores (picking up groceries, doing yardwork. etc.) that you could "let" someone else do. If you have that list handy when someone offers their help, they can look at it and find something that matches their abilities, free time, etc. And I know how great it feels when I'm able to do something for someone else, so I try to remember that accepting help means I'm giving someone else a chance to have that good feeling.
I am able to be home with Zachary still during the day. But we have several neighbors who are on a "call list" in case of emergencies -- both for me to call if I need help and for Jim to call if he can't reach me and wants someone to check on me.
We have been involved in fantastic support groups through the Les Turner ALS Foundation here in the Chicago area. I'd suggest that you look into ALSA and MDA chapters in your area and find out what is available. This disease is horrible, but it truly helps to share experiences and ideas with others who are in the same situation.
Aimee, thank you so much for being willing to share your story and bring this disease into the spotlight. Your bravery will help many others suffering with this most cruel disease. My aunt is also suffering, and I would like to find an organization raising money and awareness for research like this. This disease needs much more attention. What can the rest of us do to help raise awareness? Again, thank you for your strength.-- Tara, Nashville, Tenn.
I'm sorry your aunt has been dealt this hand. I'm sure it helps her tremendously to have such a supportive and caring niece.
The three organizations with which we've worked are the Les Turner ALS Foundation (Chicago-area only), ALSA and MDA. Their Web sites are the Les Turner Foundation, the ALS Association, and MDA's ALS Division.
There are walks, golf outings, professional sporting events, tag days, garage sales and many, many other activities going on all over the country. Please contact your local chapter of any of these organizations to find out how you can get involved.
Visit the ALSA Web site and sign up to be an ALS advocate. This sounds more daunting than it is. Don't worry, "advocacy" doesn't only mean marching in Washington! Whenever there is an opportunity to make a phone call or write a letter to Congress that would help advance the fight, ALSA sends out Action Alerts. They do all the hard work, creating a telephone script or an e-mail template. It takes only five minutes here and there to make a difference!
Aimee , what do you consider the most important thing that individuals who do not have ALS can do to help those who do have it?-- George Mingledorff, Montgomery, Ala.
George, I think the most important thing people who don't have ALS can do for those of us who do have it is to get involved and make this fight your fight, too.
There are many ways to get involved through organizations such as the Les Turner ALS Foundation, ALSA and MDA. Obviously, you can always make a financial contribution. You can also volunteer to help out at an event. Or you can offer your own talents in unique ways (such as contributing a product or service to be auctioned at a silent auction).
Most of all, you can help us spread the word. Let people know that finding a treatment or cure for ALS is important to you, and tell them why. Encourage them to learn about the people who are affected by this disease. Have them visit my Web site and explore other patient sites. I have several links on my Web site to wonderful, witty and courageous patients who are doing what they can to educate the world.
Let people know that in the 66 years since Lou Gehrig died, we still have no effective treatment or cure for ALS, nor can we tell people how to prevent it. Let them know that it can happen to anyone at any time in his or her life, despite exercising, eating healthy and avoiding vices. And let them know about the children whose lives are turned upside-down by a parent or loved one's ALS diagnosis.
E-Mails for Dr. Karen Albritton
Dr. Albritton: I was locked to the television. I have reason to think ovarian cancer is a possibility and I am only 24. I have not gotten results yet. It would be helpful to get more information on why the cancer is more fatal in young adults.-- Mia
Mia, I am glad you are being an advocate for yourself and your health and certainly hope you get negative results. The prognosis depends on the subtype, but the good news is that for ovarian cancer overall, survival is still very good in young adults -- better than in patients even 10 to 20 years older than you. If you do receive this diagnosis, make sure to ask your doctors if the type you have is often seen in your age group, and whether your treatment should be tailored to your age. Good luck.
Why aren't there more tests and hope for Hodgkin's patients? My daughter was two months short of her 26th birthday when she passed away. She had Hodgkin's, a very aggressive form, and was getting ready for a bone marrow transplant (stem cell transplant failed) when she was put in the hospital with pneumonia. She never was able to win against this disease. It always came back. Why?--Deborah Bazer, Newton, Iowa
Deborah, I am sorry to hear about your daughter. It does sound like the biology of her particular kind of Hodgkin's was very resistant. Here is a quote from a recent medical journal article by one of the experts in the field: "Currently, more than 80 percent of all patients with newly diagnosed HL are expected to be long-term survivors. Although many patients respond well to initial therapies and have durable long-term remissions, a subset of patients has resistant disease and experiences relapse even after subsequent high-dose chemotherapy and autologous stem cell transplantation. New therapies are clearly needed for these patients."
Her severe pneumonia also points out the cost of treating so aggressively -- there are many complications of both the cancer and the treatment.
There are researchers in labs currently trying to understand the biology of these difficult cases, and there are clincial trials ongoing in such patients trying out new therapies. If we knew why the disease in patients like your daughter keeps coming back we could be one step closer to finding cures. We do need to support for these research efforts, and I encourage your advocacy as a concerned parent, to keep stressing the importance of more research.
Response From Dr. David Fisher
Our understanding of cancer at the genetic and molecular level is growing rapidly. This knowledge has led to the development of many new targeted agents for treatment of cancer. We have made progress and we will continue to do so. Cancer, including Hodgkin's disease, is a clever and variedpuzzle that we are solving, but still have a long way to go.