Send positive thoughts my way - thanks!

Hi! I've been having increasing abdominal and back pain throughout the summer. And gradually adding more and more narcotics, muscle relaxers and tylenol to get through the day. The pain is severe now and there has been no definitive findings on bloodwork or PET/CT. Therefore next Tuesday, October 23rd I will be having exploratory surgery with a surgeon who has worked on me the last 2 years - cholangiocarcinoma tumor removed from body wall (1 cm in size) in 2010, and abdominal hernia repair in 2011.

There are a myriad of possibilities from bile duct cancer, pancreatic cancer, etc to adhesions, bowel obstructions, etc.

I have a history of cholangiocarcinoma (bile duct cancer)- the first time in the left liver lobe so it was resectable and the second as I mentioned above. A different transplant surgeon did the second tumor removal. It was very small and in the same tumor bed as the first so he believes it was a missed cell.

As it stands now I've had the PSC return in my transplant and the transplant team at University of Colorado is considering my case to be transplanted again. They did the first tumor resection. They then did the transplant after I was free of cancer for 15 months.

However, all of this is on hold now because of the pain I'm having in my abdomen. If it turns out to be another episode of cholangio I will definitely not be accepted for another transplant.

Please hold positive thoughts for those caring for me and that the source of pain is discovered. I know that the best is coming to pass and that I am being guided and supported by something greater than me. I am calm and patiently waiting through the days until surgery dealing with the pain as best I can.

I too have, as many others have expressed, my appreciation for all the support and strength that comes from being on this blog. I will update you as the days go by.

Thanks and cheers! Deb

(p.s. my website is down currently because of virus)

Deb, I'm lifting you up in prayer that you will be given the continued strength no matter what is discovered. You have been an inspiration to me and all those who are suffering with PSC. Positive thoughts are being sent. Stay strong---and know that many others are praying for you.

Susie

Dear Deb,

You are one courageous woman. You may be feeling not so courageous right now, though I was glad to read you are feeling calm and patient. I am praying for you now that you get relief from pain and that the surgery is successful in finding the source of your pain. I hope it is not a return of the cholangio, and that you will remain on course for a second transplant. I have a friend who had a return of PSC after his first transplant and just received his second - and is doing quite well. I know he will pray for you, too. Let the rest of us and your greater being be your strength right now - you rest and just care for yourself.

With love,

Dana

Deb,

I'm here in Denver and also being treated at Univ of Colorado (Dr Forman). You're in good hands. I am sending positive thoughts your way! The Broncos came back in stunning fashion last night, and so will you. Hang in there and keep positive, and we will continue to send positive thoughts your way!

Deb, you are in my thoughts and prayers. Thank you for sharing your reality with us. Though my PSC journey differs from yours, I rejoice with you and your sense of calm. It is a beautiful thing knowing I am never alone!

Deb,

You are one of my longest blog friends. I hope you do not mind, but I will pray for you daily. I was on 45 mg of Oxycodone and 20mcl of Butrans, both are pain killers. They didn't work very well for me, so I learned to live with 8 or 9 on the scale. You can do it, but it is tough. I took magnesium oxide and colace to help keep from getting constipated. Mag Ox goes through me like a freight train, so does Lactolose, if the doctor will prescribe it. Have a stack of reading material by the john.

I sympathize with what you are going through, my friend. God bless you and may she help provide you relief and rest as you prepare for the surgery. Will be praying for a good outcome. Don't let anything demoralize you. You will beat this. The brave become bolder the darker the night. You are one tough lady.

warmest regards,

Paul

Hey all thanks for prayers and positive vibes! Incredibly the pain has now exceeded the pain killers and I am bedridden. Just waiting for that verset and fentenyl and drip morphine! Have asked for an ab US and a GI series but denied both. Intent on exploratory. So patiently wait. I will talk to you all soon. If this disease should teach you anything let it be that you live life to the fullest, embracing your true self, and living your dreams. I have focused on living in the present as much as possible and doing bucket list the last 2 years and it really does affect your mental attitude. No matter the outcome I am calm and live with no regrets. Take care all and chat soon. Deb

The presence and power of life that we all possess, though we may not know it, supports and strengthens us for the battle disease throws at us. Be the fighter when others would quit. That strength is your inner spiritual self that is unlimited in power.

I am allergic to morphine so I have not had its benefit when it could have helped. I hope the stomach/abdominal pain is short lived for you.

I was diagnosed with U C at age 49, though i had symptoms in my 20’s. It can sure messlife’s setting about your life. My gut made so much rumbling noise when I was out socially that I was totally embarrassed.

I was diagnosed with PSC at 54. Fortunately, my UC has been in remission since 1995. During 94-95 my UC was pan-colon and took 13 months on prednisone to heal. I kept working as a school principal and was able to finish writing and defending my doctoral dissertation. I prayed for strength each day to get it all done while doing my part raising our daughter. When she was an adult, she wrote my PSC story on Facebook and a friend of hers from high school fifteen years ago, read it, got tested and became my live donor. My MELD never went above 16. As I got sicker, my MELD got better. I was a 12 at time of transplantation. Live donor was my only hope.

I know you have the strength to get through this, Deb. God wants you well. Be strong. May you pain cease right now!

Paul

sorry it has taken so long to respond. i thought i'd send an email and see if it helps to reach out as it usually does.

i went in Oct 23. surgery revealed no cancer. there was an 8in piece of-intestine adhered to body and hernia repair mesh. i guess they also found a compression fracture at lumbar 1. Something happened to my arthritic knee have had several episodes swelling, pain, and locking. i remember draining the left lung bec i remem the puncture.i guess i was nasty under all the narcotics. my gastro doc looked pretty serious in the office and said no hard feelings = makes me wonder what all happened.

they kept me until nov 27 bec i had had enuf, but i should have stayed in this last week. diarrhea, barfing, hard to walk so sleep on bath floor when really sick. have lost 40 lbs.

no hidden agenda here. i hurt, im lonely and tired of being alone going through this, i am tired of being sick. i hate to say this but i don't know if i can go through a transplant. i ve had 8 abdominal surgeries. as u get more sick u want to be with someone = even just to get a glass of water, or hold ur hair when sick, etc.

please understand the pain and frustration o being so sick in your life and take a moment to be happy u can eat, work, visit friends, go to bed without pain.

i like to watch classic tv like mary tyler moore. it reminds me of watching this show late night after my colon was removed in 1984 = almost 40 years of illness, struggles health. i wanted to be so much like mary independent - i,m not so sure anymore.

it is really hard to understand the purpose of all this long term suffering.

deb

Dear Deb,

It's understandable that you haven't been able to respond to messages. I really want to help you in any way that I can. We live close to each other and fortunately for me, I'm feeling better than I have in a long time. I understand what you're saying about being tired of being sick. I've had years like that and when I was bleeding to beat the band one day ALL DAY and all night, I was scared and I just wanted someone there to hold my hand and tell me I'd be okay, I'd stop bleeding, I'd survive. Like you said, someone to stroke your hair and know someone is actually there and cares about you. It's so much to go through.

You can have the greatest doctors, nurses and everything, but a smile and a kind word and just presence from a friend makes a huge difference. I'm willing and I'm able to help you out. And to grow a friendship with you. I see you as an incredibly strong, durable person. I don't make friends with people out of sympathy. You may not feel strong or terribly durable right now. But I admire your openness and belief that someone can be there for you and that you are saying that's what you want.

I will call you later today. And hey, independence isn't all it's cracked up to be. We're here on the planet with other humans. Connection and friendship are the way things are supposed to be. However hard it may be to ask for that.


Hugs to you (gentle ones!),

Dana

HI Deb

I join Dana in giving you gentle hugs - albeit mine are from the UK! Your story has very much taught me to be soglad for what I have - I have to confess to feeling very sorry for myself after my son was diagnosed this year - I have to say you show me what i should truly be grateful for

I put you in my prayers - i know i am a long way away but if there is ANYTHING i can do - please let me know

love

Becky

xxx

My dear friend,

Your post 12/5/12 move me so much. I wish I could reach out and touch you because I, too have felt the need for someone to touch me or hold up my head when I was too sick to do it myself. Our humanity yearns deeply for other human contact. I can tell by reading the other posts, that you have friends, though distant from you, who are supporting you, praying for you and wishing that you deserve not to suffer anymore.

You are among friends on this blog. We share the disease, what it feels like to be sick, to not like other people and the fears that go along with being sick. UC has kept me from having a normal life for 45 years. Like you, I am trained in art and music. I taught art for part of my career. Artistic people can be sensitive and troubled with illness. Maybe, that sensitivity makes us artistic?

But sensitive does not make us weak. UC and PSC have made me tougher than nails. At my lowest points, I find myself saying, "never give up. Never give in. Never." It may take my health, but it is not going to take my will. Please, don't let it take yours.

Looking back over the posts you have written over the years we both have been on this blog, I can describe them as courageous, cheerful, encouraging and inspiring. One time, about the seventh time I was hospitalized with liver failure (and a MELD of 12) I just thought I was going to spend the rest of my life in and out of a hospital. The more I was hospitalized, I noticed that some of my friends had less to do with me. Was I changing? Were they? I had to put that out of my thought and focus on living. And, if it meant being in and out of the hospital, then so be it. To the people I lost contact with; go have a good life. I'm going to live mine as full as I can.

That taught me more about compassion. I learned to listen more attentively to people when they described an illness or something that hurt them emotionally. That process helped me become more patient with myself. We all need to be more patient with ourselves when we have this disease. Take it up one level, and in our humanity we are all brothers and sisters. We need to care and pray for each other as we would for ourselves.

So, when I read about your suffering, I wished I could take away your pain and be there to give you that human contact. Alas, I cannot do that, but what I can do is hold you in prayer, surround you in God's love and ask Her to be that comforting touch you need and deserve.

God bless and keep you, Deb.

Paul

Dear Paul,

What an eloquent statement of what it's like to be sick with PSC as well as an IBD. I think you speak for a lot of us. Thank you so much for your kind words. At this point, I'm doing pretty well, but I know that can change in a heartbeat. I try to take advantage of the good times and live life to the fullest - and see myself as available to others to help them through their tough times. I, too, know what it's like to be alone and lonely and just want the presence of a caring friend. I love the volunteers who work in hospitals and who make themselves available in those ways. Whatever it takes, you know?

My MELD stays low no matter how crappy I'm feeling. So I'm asking the transplant committee to put me on the active list (I had breast cancer a year ago now and have been inactive because of it) so I can look for a live donor. I know that's what you did.

Deb, I will try calling you today. I had a lot going on yesterday and didn't get to call. But today it's a priority, top of the list.

Take care,

Dana

Adversity teaches us lessons such as, patience and empathy. I believe something good comes from what we all have gone through. These bloggers are a compassionate bunch. Just read our stories. We are human. We are scared. We may think we are walking alone, but the rest of us are beside you. Dana and Deb, I can't stop caring and praying for you guys. I am just glad-of-heart that you, Dana were able to check up on Deb.

My PSC is gone, my doctors say. My transplant on February 8, 2012, works like normal. If I stay healthy ( and I expect to) I never want to forget the pain, suffering and fear. I want to remember those days when fluid was leaking out of every orifice and some that were man-made, not knowing what was going to happen next. It stopped. There was a conclusion to the whole matter. Why do I want that? Because out of that came/comes courage to face the unknown with determination and grit.



My daughter did a Facebook page with my PSC story on it, and that is where my donor learned of my need. She was a high school girlfriend of my daughter's fifteen years ago. She just wanted to help and knew everything would be fine for both of us. She was right. Give it a try. People are very caring.

I've run out of words so I am going to call it quits for now. Keep your powder dry and never give up. Never.



Paul Hain said:

Adversity teaches us lessons such as, patience and empathy. I believe something good comes from what we all have gone through. These bloggers are a compassionate bunch. Just read our stories. We are human. We are scared. We may think we are walking alone, but the rest of us are beside you. Dana and Deb, I can't stop caring and praying for you guys. I am just glad-of-heart that you, Dana were able to check up on Deb.

My PSC is gone, my doctors say. My transplant on February 8, 2012, works like normal. If I stay healthy ( and I expect to) I never want to forget the pain, suffering and fear. I want to remember those days when fluid was leaking out of every orifice and some that were man-made, not knowing what was going to happen next. It stopped. There was a conclusion to the whole matter. Why do I want that? Because out of that came/comes courage to face the unknown with determination and grit.



My daughter did a Facebook page with my PSC story on it, and that is where my donor learned of my need. She was a high school girlfriend of my daughter's fifteen years ago. She just wanted to help and knew everything would be fine for both of us. She was right. Give it a try. People are very caring.

I've run out of words so I am going to call it quits for now. Keep your powder dry and never give up. Never.

Dana,

My daughter is Heather (Hain) Whiteford and my donor is Kathy Kurth. Check out their Facebook pages. Both would correspond with you about transplantation from their perspective and how Facebook and CaringBridge.org helped with our case. Paul

danabee said:

Dear Paul,

What an eloquent statement of what it's like to be sick with PSC as well as an IBD. I think you speak for a lot of us. Thank you so much for your kind words. At this point, I'm doing pretty well, but I know that can change in a heartbeat. I try to take advantage of the good times and live life to the fullest - and see myself as available to others to help them through their tough times. I, too, know what it's like to be alone and lonely and just want the presence of a caring friend. I love the volunteers who work in hospitals and who make themselves available in those ways. Whatever it takes, you know?

My MELD stays low no matter how crappy I'm feeling. So I'm asking the transplant committee to put me on the active list (I had breast cancer a year ago now and have been inactive because of it) so I can look for a live donor. I know that's what you did.

Deb, I will try calling you today. I had a lot going on yesterday and didn't get to call. But today it's a priority, top of the list.

Take care,

Dana

Paul,

Your notes are so encouraging and honest. I'm so glad the PSC didn't return. I think that's the one thing that really scares me about transplant. Right now, I'm doing pretty well, although lack of sleep on top of fatigue makes me not nearly as high-functioning as I'd like to be. I can honestly say that liver disease has helped me understand and accept my life much better. I finally made a commitment, something I'd really wanted to do for nearly 20 years. That can't be all bad! In fact, it's very good. And I'm learning, ever so slowly, to reach out to others for help. I have always been so independent - to a fault, really. I do need you guys and I feel your support, too. It's very tangible.

Thanks for helping me put the right foot forward this morning - yeah, it's early 4:20 am, but couldn't sleep past 2:30, got up at 3. Have a great day, Paul! You're a real blessing to this group and to me personally.

Dana



Paul Hain said:

Adversity teaches us lessons such as, patience and empathy. I believe something good comes from what we all have gone through. These bloggers are a compassionate bunch. Just read our stories. We are human. We are scared. We may think we are walking alone, but the rest of us are beside you. Dana and Deb, I can't stop caring and praying for you guys. I am just glad-of-heart that you, Dana were able to check up on Deb.

My PSC is gone, my doctors say. My transplant on February 8, 2012, works like normal. If I stay healthy ( and I expect to) I never want to forget the pain, suffering and fear. I want to remember those days when fluid was leaking out of every orifice and some that were man-made, not knowing what was going to happen next. It stopped. There was a conclusion to the whole matter. Why do I want that? Because out of that came/comes courage to face the unknown with determination and grit.



My daughter did a Facebook page with my PSC story on it, and that is where my donor learned of my need. She was a high school girlfriend of my daughter's fifteen years ago. She just wanted to help and knew everything would be fine for both of us. She was right. Give it a try. People are very caring.

I've run out of words so I am going to call it quits for now. Keep your powder dry and never give up. Never.

Hello all - I've been to hell and back - but I'm back. I have to say these last 5 months since I first posted in October that I was going to have exploratory surgery have really dampened my opinion of the medical profession especially the new ones coming out ready to practice.

In fact I've been treated so poorly throughout my 3 hospitalizations, 2 surgeries - abdomen and back, and 3 emergency room visits that I'm seeking to file 2 lawsuits against a hospitalist group and the abdominal surgeon, and filing a complaint with Medicare for violating a least 6 of my Medicare rights with the first not being treated with dignity and respect.

The worst part was that I was not believed by the hospitalists that my pain was legitimate and I was labeled as a drug seeker and made to sign a contract to even be admitted on my last hospitalization a few weeks ago. It hurt a great deal to have people not believe me when I am so honest and pride myself on being honest.

The bottom line of the whole thing was a compression fracture in my back at T12. Two MRI's demonstrated that. The first was in November 10 days into a 40 day hospital stay where they couldn't control my pain. Yet no one sought to do anything. And I was so out of it yet they didn't consult my medical advisor when I am unable to make decisions which they should have. I don't even remember the first 10 days.

So as the exploratory surgery did nothing for my pain it kept intensifying so I kept returning for help. When the pain got out of control and I had taken as much narcotics as I dare I'd go back to ER.

I don't think anything would have happened if my gastro doc who knows my wishes well didn't step in and 'talk' to some people. Sounds almost kind of mafia like huh ....laugh....I almost wish it was. There are a few hospitalists I'd like to see with concrete shoes - he, he. Once I saw Kugelmas step into my room I knew everything was going to be OK. By that afternoon they had agreed to do a kyphoplasty - injection of a material into vertebrae to stabilize fracture. And by dinner that evening I was free of pain. My back no longer felt broken.

Funny thing is my liver did fantastic thru the whole thing. Thankfully cuz I was scheduled for that 40th ERCP and didn't feel up ti it so canceled.

Of all my years of medical procedures and experiences - approx 38 years I had never had such an experience. I guess it is bound to happen eventually.

The feeling that the back is broken is gone and has never returned. Now just dealing with some pretty darn tight back and abdominal muscles from nearly 7 months of pain. Seeing a pain management clinic to titrate off the narcotics and a massage therapy for some trigger point work.

We have to keep fighting for our right to good medical care and to be treated with respect and dignity even if we are broken or on disability or so sick you can barely stand up for yourself. Have your medical guardian be ready to help.

I know I didnt' give you updates , thanks for your initial prayers - it just got too painful to talk about it was so incredulously bizarre and hard to comprehend.

Hi Deb,

I’m glad you are back! I’m angry that you had to experience such a humiliating bruising. Why does God put us through all this? Or, maybe His hand had nothing to do with it, but He’s there to help us through the dark days and suffering. I wish I knew the answer. This one thing I know (and I suspect you do, too): Giving up is not an option. I’ll go down fighting. Such happy thoughts! I apologize.



At least it sounds like you hit bottom and are climbing back up. The only advice I have is get your thought back to what pleases you. Do those things you have been denied while sick. Getting back to normal is a challenge, but it will lead to happiness. Never give up. Never.

Peace be with you,



Paul

Paul, you are always such an angel. For all of us. I'm going to take those words meant for Deb (and she does need and deserve them all) and apply them to myself, too. Thank you for who you are, Paul. -Dana