Just wanted to say hello, and thanks for accepting me into the group. I hope that I will have something to offer.
I will soon be 51 years old. I have had UC since '95. Once diagnosed, I was treated effectively with Prednisone and Sulfasalazine. That diagnoses has been changed to Crohn’s. I control that with Apriso.
I was alerted to the PSC in about 2006 after some pretty crazy bloodwork. My GI doctor had treated several PSC patients throughout his career. Pretty lucky in rural Idaho. I have been resistant to the idea of a transplant. I decided to try to live in the best way that I could for as long as I could. Stopped all drinking. Stopped working as hard in my weld shop and exposure to those fumes, etc… Took my wife to the beach for a month. Stuff like that. I have realized since that a fair amount of that resistance that I felt was depression. Also, there were difficulties with the transplant center requiring insurance that I couldn’t get. I am a paraplegic since 8/2002 and there are issues there too. A transplant surgeon that we met with told me that he had concerns that with a MELD of 30 that I would be strong enough to even be a viable candidate.
Last September, I cracked that 30 level but was too busy to do anything about it. Hit it again in January. And I’m still here. So I call BS on that. I had my second ERCP in November '17. My wife lost her cancer battle in early December '17. I really struggled after the first of the year, but finally turned the corner for myself. I have moved over to the Seattle area to be near the transplant center. I also have gotten the insurance in place.
Maybe, I waited too long? Maybe, it won’t work for many reasons? One of the few things that I know for sure is that I am going to try as hard as I can to stay alive. I am going to have a more open heart and see where it all goes. If it helps anyone to know, I will say that I have seen some dark places at times in my life. Amazingly, as my body is near the weakest that it has been, my spirit is the strongest. Don’t let anyone define how you feel about your battle or the battle of your loved ones. Right now is where it is all happening! One day, too soon, it will all be over. There will be plenty of time to sleep. Right now, love, live, and fight!
Just wanted to say hello, and thanks for accepting me into the group. I hope that I will have something to offer.
Your story is so inspiring. I am so sorry about your wife. You are such a strong person to have endured so much. Some of us can hardly cope with the PSC reality and you have been through that and your wife’s cancer. I am so happy to know that your spirit is strong, our mind is very powerful and many have said that ones willingness to live can make a difference in how well our bodies cope or recover from different situations. I am glad you found this group, I was recenly diagnosed in Dec 17 and they have been so helpful. It just feels good to know you are not alone in this battle.
We are here to support each other.
Best Wishes, Keep that positive attitude
Thanks for your post. First of all, I am very sorry for the loss of your dear wife. No words can be said to take the pain away, but I pray that you will be able to go on and try to live for her and your family.
I was transplanted in 2015 at 51 years old. I want to encourage you to proceed with the transplant evaluation as soon as possible. Your MELD score certainly qualifies you to be evaluated. Don’t waste any time doing so either. I’m not sure about your overall health and the strength of your body to undergo surgery. With your other medical conditions it doesn’t sound like you are able to go through a daily exercise regimen to keep your core strength up, but even there you need to seek guidance from the medical team at your transplant center to see what you can do. You need to be on a high protein diet right now especially. Much muscle wasting will occur with these high MELDS so that’s important.
My reason for impressing on you the urgency of this is I will tell you a quick story of my situation. In January, 2015 I was listed for transplant at MELD 12. In April my MELD went to 19. On July 20th the same year my MELD went to 36! I was transplanted 2 days later. MELD can climb real quick so this needs to be attended to as soon as possible.
Please let us know of anything we can do to help you out. It will be important when you go for the transplant evaluation that you take your care team with you. This may consist of family members or close friends who will commit to your aftercare post-transplant. I do wish you well and hope we will read soon of your successful transplant.
PSC 2011 / Liver Transplant 2015
Thank you Vasni. You are certainly very new to the PSC deal then. It is a lot to deal with. I’m happy that you found this group as well. I was referred by a new friend. I hope that we can all support and inspire each other. There are amazing and beautiful things all around us!
Thank you Mark! I am in touch with the transplant coordinator for UWMC. The insurance was holding things up, but that was resolved last week. So, hopefully I’ll get in there soon.
I totally agree on the strength. I get as much protein as I can and work out pretty hard several times a week. I try to get some exercise daily. My body is weak compared to pre-PSC, but I am as strong as I have been in the last five years. Not much spare fat though.
Thanks for sharing your story too. I think that I understand the urgency of the MELD issues. My INR has been pretty wild, so that has been a big factor for me. And, congratulations on your successful transplant!
Sounds good Doug. We are here for you man anything we can do to help. Praying for a liver for you soon.
Doug, I am glad you are aiming for the transplant. One thing in the back of my mind pre-tx was that there are people who end up being too sick to be transplanted. As psc and the meld score is a moving target, it can seem like a crap shoot.
One other thing I read from your posts is that as having a positive mindset will help immensely both pre and post tx. I am glad you’re there. We all need it when we have bad days. They will come.
Thank you, Jeff. That “moving target” comment sums it up nicely. I really appreciate the support! And yes, for sure, bad days come. Then they go…
I’m so blessed that you reached out to me on a FB PSC support group when I was struggling hard with my January 2018 diagnosis and I’m happy to see you’ve found us here. Welcome?! lol
When I think back to all that we’ve shared over the past few months I concur 110% with regard to your positive attitude. Your unconditional support these last few months helped me over a mountain that I was not sure I could conquer. With that said, you know I’ve got your back here in Seattle in any way I can. We’ve come this far and I’ll be there riding shotgun with you as you move forward into the next window of your journey
Your good friend (lucky me!)
Thanks for the welcome. Let’s agree that the blessings go both ways. I truly never imagined that there was anything so precious on the FB.
We will challenge and conquer many more mountains! I’ve always loved the view from treeline. Partners in Crime, riding shotgun…I believe it. Thank you!
The wisdom that comes with aging and introspection, which you certainly have, is leading you to the right place to live, for treatment and finding happiness. That includes transplant. It comes together. My greatest insights and peace were when I was facing the end and refused to quit. “Never give up. Never!” was what I reminded myself all the time. I pursued life. “No” and “I can’t” were pushed out of the way with “Yes” and “I can.” You can, as well.
MELD 30 must put you fairly high up on the list in Seattle? I hope the steps unfold for you because you have a great story. Sharing it is therapeutic for you and others that read it. Pursue life, my friend.
Paul, What a nice comment to read. Thank you! You put it so well! I’m all about my first response to anything being, “Why not.”. Not sure when the last time that I thought, “no” first. Subtle difference, but very important, in my opinion!
I have an appointment with the UWMC hepatologist on Thursday afternoon. This will be an important appointment for me. They will likely make the decision to put me through the evaluation week. That sounds like “Hell Week” lol
I’m feeling very grateful that I will be accompanied by a 20+ year friend, and a brand new, lovely, Seattle friend! I don’t know how many blessings one sick old Texas boy can receive, but I’m willing to find out!
Thank you for reaching out!
Greetings everyone! I am new here and just got my PSC diagnosis in June of 2017. I now have some cirrhosis of the liver, and I have a MELD score between 6-8. I have had Crohn’s disease since the age of seventeen, and I am now fifty-seven. I have had at least three attacks that Cipro has handled pretty well, so I am just getting adjusted to what this disease might mean to my life. I am attempting to move my care to the Mayo Clinic in Jacksonville, FL because of the number of transplants done there. I am in good spirits and generally feel well. I just don’t know how long that will last. My question here is can a PSC-related attack be caused by heavy duty stress? Thank you!
Glad to meet you. Sorry for the cause! It sounds like all in all you have had a pretty good run with it. I have as well. I would say that heavy-duty stress isn’t good for PSC or Crohn’s. Really not good for anything though, is it?
Wish I could help you with how long. That seems to be the big question. I can say that I had a several years with a MELD in the mid to high teens. I’ve been up to a little over thirty during the last year and was at twenty last Tuesday,
Hang in there, man. Keep doing what you’re doing. I’d say that it is working!
PSC progression is very different in each patient. You may go from diagnosis to transplant in 4 years as I did, or it may be 20 years later. It’s just so unpredictable. I know I had it for many years prior to diagnosis but didn’t have any symptoms other than, looking back now, I have always had a nice sun tan even in the winter. Well now I know that was the liver disease. Since transplant my skin is quite fair in the winter but does tan up when out in the summer. Of course you have to watch sun exposure post-transplant as the risk for skin cancer goes way up due to the immune suppression.
As far as heavy duty stress causing a cholangitis attack, I’m not sure about that. I really never had one to speak of strangely enough, although I didn’t feel well those 4 years and was always exhausted, could hardly smell much less eat food at times.
Hang in there and take one day at a time!
Mark, I am reading back through your posts in an attempt to plan for PSC worst case scenario–coming up on a possible retirement date and considering relocation as well, if health holds out. Do you mind sharing where you had your transplant done? You shared how long it took you to get the transplant once you arrived at the hospital–thanks again for that–but where were you located in relation to your hepatologist and the hospital where the transplant was done? I would appreciate any information you could provide when you have the time. I am thinking closer is better, but . . . the economic reality might shake out much differently. Thanks, Jon
Hello again. I had my transplant at Duke University Medical Center in Durham, NC on July 23, 2015. Diagnosed in 2011, put on list with a MELD 12 in January, 2015. MELD score jumped to 19 in April and 36 in July. Transplanted 2 days later. Sometimes PSC progresses slowly and sometimes like in my case it takes off. If I hadn’t got the call when I did, I don’t think I’d be here today.
As far as location from hepatologist and hospital. Duke has satellite offices around the state so my hepatologist came to Raleigh NC once a week and I saw him there most of the time. I had most of my ERCP’s done at Duke-Raleigh hospital by their specialist doctor who does these daily. I did go to main Duke in Durham from time to time. I was also in a liver study at main Duke so went monthly for labs, etc. My hepatologist was about 45 minutes from my home. Duke Hospital where I had the transplant was about 1-1/2 hours away.
I was dual listed at CMC in Charlotte NC which was 3 hours away. I did have to make several trips for tests, visits, etc., but since the hospital was more than 2 hours from my home Blue Cross paid for lodging and parking for those visits. If you have Blue Cross, they will assign you a transplant nurse that works for the insurance company who will help you all the way.
When I got the call to come for transplant I knew I was getting a brain-dead patient liver. Thus they kept him on life support until all the other organs could be allocated and the surgeries set up for other transplants. My donor was at Wake Medical Center in Raleigh NC and they flew the liver by helicopter to Durham. Everything is very organized and pretty much went like clock work.
If you want to see some photos, I can private message you some of mine. Just don’t share them with anyone online, etc. Hope this helps and feel free to ask anything else you think of.
Hi guys. I don’t know if it helps, but Aetna also assigned a nurse manager to my transplant case. She has been extremely interested and helpful to this point.
Best wishes for you Jon.
My Case Manager was wonderful. She had worked at the same hospital where the transplant center, and knew my sister-in-law who worked at that same hospital.
Thank you, thank you, thank you, Mark, your information that you have so willingly given helps me so much with planning and understanding my future. Keep up the great work!