Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 -----Original Message----- I'm wondering about the quote " You're more likely to die with PSC than from PSC " . How many people do die from PSC? Is there a percentage? What the average life span? And if death isn't the big fear, than is it the pain? The suffering? The experience of transplant? Like Arlene, I'm trying to formulate a vision of what to expect. Also, you write, " we're very rough on our caregivers, bless them! " Why do you write that? What should my husband be expecting?? Is it the worry? Symptoms that make us unable to function normally? Does PSC affect our mood? I know there are others on this board who are caregivers - what is your experience? Hi Ruth, Your questions make me really mad! Not at you, but at your doctor for not giving you more information. That’s why we work so hard to get the word out about PSC Partners, the literature site, our brochures and hold conferences each year. No patient should come away from diagnosis with the type of fear you’re expressing! No there aren’t any percentages on how many die from PSC, because *IF* and when your liver gives out, you can get a new one. People with PSC die every year – from old age, car accidents, heart attacks, gun shot wounds, you name it people die from it, but PSC *IS NOT* an automatic death sentence. Your doctor should have told you that. We know lots of people who have had PSC for years – many years (20-30) – and are still doing great. You won’t believe how many people continue on with their lives with no symptoms at all! My son never had a cholangitis attack and never had pain. For many, many people transplant surgery is just like any other surgery, they are out of the hospital in a week and after the usual 6 weeks back to work. Even people who have had more than one transplant! Do complications happen? Yes, as it does with any surgery. Do people die while listed? Yes, but in the 9 years I’ve been here no one with PSC has died because there wasn’t a liver for them. Might you get cancer? Yes, but everyday we learn more about the disease and what to watch for. Doctors are keenly aware now and strike at cancer with amazing force. A woman who had PBC got her transplant around the time Ken did. Fern was 72 and one day about 3 weeks after surgery she fell and broke her hip. I wish I could show you her picture from the transplant reunion. She looks GREAT and is back to her old self. That’s how it works for many people. The questions for caregivers – I’m one. Yup you bet it can be hard, because we want our loved ones to have nothing in their lives, but a bed of roses and to always walk on gold paved streets. I hated it when my kids got colds. I hate it when the dog pukes! But that’s not a burden and your husband should expect you to be your normal self for a very long time to come! If anything, you will likely grow closer to each other. You’ll be fine, expect the best, and ignore the rest. Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 > > Also, you write, " we're very rough on our caregivers, bless them! " > Why do you write that? What should my husband be expecting?? Is it > the worry? Symptoms that make us unable to function normally? Does > PSC affect our mood? ======================== Hi Ruth! I can't speak for what Arne had in mind, but I'll gladly toss in my two cents worth! Generally speaking, regardless of the disease or condition, it is extremely tough to be a caregiver. It leaves you drained, both physically and emotionally. It's agonizing to watch someone you dearly love suffer with the symptoms of any disease. It's even worse when you add hepatic encephalopathy (HE) to the mix. Any incurable disease has the potential to lead to depression, frustration, anger, etc., but when you add HE you also get a patient who can't figure out what they're doing or why, who doesn't remember what they were told 2 minutes ago and certainly not 2 days ago. When my father was dying of lung cancer, I moved back in with my folks to help care for him. Let me tell you that it was far, far harder to watch him slowly die than it is for me to deal with my own PSC. Because of that I know how very difficult it is for my husband to watch me as this disease progresses. A caretaker often has such a feeling of helplessness and that certainly takes a toll. When you then add depression and anger to the mix, you can get a very wearing situation. This is, I think, particularly true when it's your spouse who is ill .... the one person you count on and lean on for support and encouragement is now so terribly sick and you're afraid to lean on them. As the patient, I've been careful to let my hubby know that it's OK to lean on me; I'm still there for him emotionally and spiritually, even though I'm often not up to much physically. The one thing I'm sure of -- if you can keep a terrific sense of humor, and a strong faith in God, you can cope with anything!!! Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 > > Also, you write, " we're very rough on our caregivers, bless them! " > Why do you write that? What should my husband be expecting?? Is it > the worry? Symptoms that make us unable to function normally? Does > PSC affect our mood? ======================== Hi Ruth! I can't speak for what Arne had in mind, but I'll gladly toss in my two cents worth! Generally speaking, regardless of the disease or condition, it is extremely tough to be a caregiver. It leaves you drained, both physically and emotionally. It's agonizing to watch someone you dearly love suffer with the symptoms of any disease. It's even worse when you add hepatic encephalopathy (HE) to the mix. Any incurable disease has the potential to lead to depression, frustration, anger, etc., but when you add HE you also get a patient who can't figure out what they're doing or why, who doesn't remember what they were told 2 minutes ago and certainly not 2 days ago. When my father was dying of lung cancer, I moved back in with my folks to help care for him. Let me tell you that it was far, far harder to watch him slowly die than it is for me to deal with my own PSC. Because of that I know how very difficult it is for my husband to watch me as this disease progresses. A caretaker often has such a feeling of helplessness and that certainly takes a toll. When you then add depression and anger to the mix, you can get a very wearing situation. This is, I think, particularly true when it's your spouse who is ill .... the one person you count on and lean on for support and encouragement is now so terribly sick and you're afraid to lean on them. As the patient, I've been careful to let my hubby know that it's OK to lean on me; I'm still there for him emotionally and spiritually, even though I'm often not up to much physically. The one thing I'm sure of -- if you can keep a terrific sense of humor, and a strong faith in God, you can cope with anything!!! Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 WOW Barb that was a great answer, I think I will print that out!! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 WOW Barb that was a great answer, I think I will print that out!! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 WOW Barb that was a great answer, I think I will print that out!! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Yes, Dr. Lindor is, how shall I put it, a man of few words... Thank you SO much for these answers, they bring tears of gratitude to my eyes. I do so want to protect my husband and my children... Ruth > Hi Ruth, > Your questions make me really mad! Not at you, but at your doctor for > not giving you more information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Yes, Dr. Lindor is, how shall I put it, a man of few words... Thank you SO much for these answers, they bring tears of gratitude to my eyes. I do so want to protect my husband and my children... Ruth > Hi Ruth, > Your questions make me really mad! Not at you, but at your doctor for > not giving you more information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 -----Original Message----- Yes, Dr. Lindor is, how shall I put it, a man of few words... All the really good doctors seem to be that way. All brains not much people skills. Honestly no one should leave a doctors office in fear. If there is one thing (OK there are a bunch of things) I wish I could change it’s that. And of course I’d like to smack around the doctor who gave us a wrong diagnosis – twice! Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 -----Original Message----- Yes, Dr. Lindor is, how shall I put it, a man of few words... All the really good doctors seem to be that way. All brains not much people skills. Honestly no one should leave a doctors office in fear. If there is one thing (OK there are a bunch of things) I wish I could change it’s that. And of course I’d like to smack around the doctor who gave us a wrong diagnosis – twice! Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 -----Original Message----- Yes, Dr. Lindor is, how shall I put it, a man of few words... All the really good doctors seem to be that way. All brains not much people skills. Honestly no one should leave a doctors office in fear. If there is one thing (OK there are a bunch of things) I wish I could change it’s that. And of course I’d like to smack around the doctor who gave us a wrong diagnosis – twice! Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Ruth Blatt wrote: > And if death isn't the big fear, than is it the pain? The suffering? > The experience of transplant? > As someone who's had a transplant, and can look back on my experience I can look back and see what (so far) are the biggest risks I've faced. There was a risk of death, but that's universal. We're all at risk for it, and PSC doesn't (imo) increase it enough to make it a much larger worry than it should be for most people. What I mean is that we all should face up to the fact that we're going to die sometime and we really don't know when, so we need to be prepared (and I don't mean just having you will written!). If PSC gives you the extra impetus to do that then it's benefited you. As far as pain goes, I've personally had very little serious pain. Even the transplant wasn't particularly painful. Discomfort, and fatigue were much bigger issues for me than pain ever was, although I know that some others have different experiences with this. As far as the transplant goes, that was one of the most positive, happy, joyful experiences of my life so far. Even while I was still recovering in the hospital I felt so much better than I had in many years. A year later I'm still riding on that high even though I've had some difficulties recently. I thank God and the donor family every day. So what should you fear? Probably none of the above (although that's easier said than done). We don't know what our experience will be like, so we don't know what to fear. A better approach is to have an idea of what can happen, what you need to prepare for, and then hope and plan to have the best outcome possible. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 -----Original Message----- WOW Barb that was a great answer, I think I will print that out!! Thank you very much, but please don’t, everyone looks at and experiences things differently. It’s just if I had known what I know now, our life over the last 8 years would have been much different. That’s what I want people to know, that’s what I hope you take away from this discussion. Things aren’t as bad as you’ve heard and I don’t think I’m asking you to put on rose colored glasses either. When Ken was first diagnosed, doctors back then (1999) said men couldn’t father children if they had PSC. athan blew that off the roof with two beautiful kids (check out photo section.) Then we heard women couldn’t carry babies to term. (who started this group) knocked that out of the ball park with her four children (ditto photo section.) 10 years was all you could ever expect if you had PSC, many of those doctors are dead now, but the PSC patients are still alive, well and working (most without a transplant!) The way doctors treat and the way patients live has changed so much just over the 8 years we’ve dealt with it. I can’t begin to imagine how different things will be for future group members. Ken has had every known complication and some new ones too. We thought we would lose him several times, it was and is hard, very hard now. But ya know what? He just IM’d me and told me to get off the computer, he wants to go into town, so I will. Enjoy your weekend! Barb in Texas - Together in the Fight.... Whatever it Takes! ,___ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.