Guest guest Posted December 26, 1999 Report Share Posted December 26, 1999 In a message dated 12/26/99 6:15:22 PM Eastern Standard Time, palfeld@... writes: << Welcome Judy, I hope sent you instructions on how to enter yourself in the database we have. You might find it helpful to go there and bookmark it and print it out so that you can keep us all straight. I am the wife of Phil (56) PSC dx 12/28/99 on the way to consult with the tx team at UCLA on January 10th hoping to be listed. This group is informative (knowing what to expect and various methods of treatments has been very helpful to me) and compasionate and very supportive. They pray for you and light candles and really help you in going through this. We also have several who are post transplant, -just 11 weeks. Roy, her husband sent us a picture of them and she looks great. Aubrey is a doctor in Canada but there are several others that give us a wealth of technical information. Aubrey also helps us to realize that doctors are human and go through the same things and frustrations that we do. He is able to give us a view from both sides of the table. Some of us are more long winded than others, like me. Anyway I'm sure you will enjoy being a part of this loving, caring, informative group. Peg >> Hi Peg: Thanks for writing. I plan to enter my information in the database, but want to wait until I get more information after my first doctor's visit with the specialist. So your husband was just now diagnosed also, or did you type in the wrong dx date 12/28/99?? I assume tx means transplant team? Good luck on the doctor's visit, I hope he gets listed also. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 1999 Report Share Posted December 26, 1999 Welcome Judy, I hope sent you instructions on how to enter yourself in the database we have. You might find it helpful to go there and bookmark it and print it out so that you can keep us all straight. I am the wife of Phil (56) PSC dx 12/28/99 on the way to consult with the tx team at UCLA on January 10th hoping to be listed. This group is informative (knowing what to expect and various methods of treatments has been very helpful to me) and compasionate and very supportive. They pray for you and light candles and really help you in going through this. We also have several who are post transplant, -just 11 weeks. Roy, her husband sent us a picture of them and she looks great. Aubrey is a doctor in Canada but there are several others that give us a wealth of technical information. Aubrey also helps us to realize that doctors are human and go through the same things and frustrations that we do. He is able to give us a view from both sides of the table. Some of us are more long winded than others, like me. Anyway I'm sure you will enjoy being a part of this loving, caring, informative group. Peg Jnieman@... wrote: > Hi all: > My name is Judy and I live near Dayton, Ohio. Not very far from we > discovered yesterday. We will even go to the same doctor. I am glad I > discovered this group as I am very confused right now and don't really know > much yet about my condition. I am 46 years old, I work full time as an > administrative assistant for a large defense contractor. My husband of 25 > years is an air traffic controller. (He also is an angel and took very good > care of me after my GB surgery.) I have one son who is 22 and lives in > Columbus, Ohio. > > I have always had irritable bowel and recently started having gall bladder > problems. I had lots of bloodwork run while they were trying to decide if I > needed gall bladder surgery and during those tests they discovered I had > elevated liver enzymes. They decided that while they were taking out the > gall bladder they would do a liver biopsy. The lab here in Dayton couldn't > decide what the diagnosis was and the sample was sent off to the Mayo Clinic. > The results came back as sclerosing cholangitis. > > I had lots of complications during the GB surgery. The doctor tried to do it > laproscopically, but ran into scar tissue from an earlier surgery. Instead > of opening me up he decided to laser his way through the scar tissue to the > gall bladder. All seemed to be going well. They put me in recovery and then > I started to bleed profusely. I developed a huge hematoma (blood under my > skin) the size of 2 1/2 basketballs on my stomach and hip. They were very > worried about the blood loss and I ended up having to get two pints of blood. > The liver had to work extra hard to get rid of the hematoma and I turned > yellow for 3 days because of it. I had lots of pain and ended up in the > hospital for a total of 9 days. My surgeon said he thinks I have some type > of bleeding disorder and need to be tested for that also. > > My surgeon said I need to see a specialist at a large University hospital and > my family doctor has referred me to a doctor at the University of Cincinnati. > My family doctor said I am the first person he has ever had with this > condition, but he knew right away what it was. Although he scared the heck > out of me when he said that I'd probably have to be placed on the liver > transplant list and then walked away!! But, if it wern't for his persistance > on my bloodwork, I would have never found out that I had PSC, so I have to > forgive his bedside manner. When I walked out of his office that day I felt > like I'd been punched in the stomach -- very nervous and scared. I don't > have an appointment yet with the specialist and they are going to call me on > Monday with one. > > My GB surgeon said the disease is in the very early stages. I am very > nervous to hear what the doctor says. I am a worry wart and this is not > going to be easy for me. I've begun having mini panic attacks in the middle > of the night -- 3 so far this week. I'm not normally a wimp, but I have > become one in the past month after all I've been through. I am so grateful > to have found this group and am looking forward to participating. > Judy > > ------------------------------------------------------------------------ > Doing everything you can to save for college? Are you sure? > > With Scholars Choice invest up to $150,000 per child. Tax deferred. > > >From Salomon Barney > http://click./1/531/4/_/24674/_/946244919 > > eGroups.com Home: /group// > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 1999 Report Share Posted December 26, 1999 Your assumption was right I wrote the wrong date it was last year 1998. Tx means transplant and dx means diagnosed. They feel that he has had it for probably 10 years. He has had UC (ulcerative colitis) for 30 years. Peg Jnieman@... wrote: > In a message dated 12/26/99 6:15:22 PM Eastern Standard Time, > palfeld@... writes: > > << Welcome Judy, I hope sent you instructions on how to enter > yourself in > the database we have. You might find it helpful to go there and bookmark it > and > print it out so that you can keep us all straight. I am the wife of Phil > (56) > PSC dx 12/28/99 on the way to consult with the tx team at UCLA on January > 10th > hoping to be listed. > > This group is informative (knowing what to expect and various methods of > treatments has been very helpful to me) and compasionate and very supportive. > They pray for you and light candles and really help you in going through > this. > We also have several who are post transplant, -just 11 weeks. Roy, her > husband sent us a picture of them and she looks great. Aubrey is a doctor in > Canada but there are several others that give us a wealth of technical > information. Aubrey also helps us to realize that doctors are human and go > through the same things and frustrations that we do. He is able to give us a > view from both sides of the table. > > Some of us are more long winded than others, like me. Anyway I'm sure you > will > enjoy being a part of this loving, caring, informative group. > Peg > >> > Hi Peg: > Thanks for writing. I plan to enter my information in the database, but > want to wait until I get more information after my first doctor's visit with > the specialist. So your husband was just now diagnosed also, or did you type > in the wrong dx date 12/28/99?? I assume tx means transplant team? Good > luck on the doctor's visit, I hope he gets listed also. > Judy > > ------------------------------------------------------------------------ > The only fruitcake at overstock.com is our manager. > > He’s giving away a $20 coupon, plus our everyday Free Shipping. > > Take advantage of the savings and selection now. > http://click./1/342/4/_/24674/_/946252141 > > -- Talk to your group with your own voice! > -- /VoiceChatPage?listName= & m=1 Quote Link to comment Share on other sites More sharing options...
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