Hi there, I hope everyone had as good of a Thanksgiving as possible. Mine was good and very busy. We ended up with 28 Family Members! Everyone enjoyed the food and visit. I was so tired Saturday and Sunday! Friday we had a lot to do as well so after those 2 days I was most certainly worn out. I am about the same not much has changed. I mainly wanted to post and say HI. I also wanted to touch base and make sure all of you were doing ok. I have a lot of work and erronds so I will close but drop in and let me know how your Holiday was! Love to all Lorie
Hello Everyone: I had my Doctor appointment and it went well. All my biopsy's that they did for the over growth of Bacteria and the Celiac Sprue Disease (Malabsorption Disease) came back Negative. I was very happy to hear that. They told me things looked good in regards to that when they were in there with the scope but this is the official word from the Lab. Definite scar tissue and adhesions which I already knew. Dr. Lamont said that my pre-albium was low so I need to try and get more protien in me and he wants me to try to eat more banana's for pottasium. I like banana's ok so I will try to eat more of them. Dr. Lamont said the Dietician he uses with his Cancer Patients owes him a favor so he will set it up for her to call me and see if maybe she can help with different ideas. He is very concerned that I am not absorbing fats, he has looked into every angel and he said he is coming up empty on the anwsers but he was still working on it. I also got to get my Picc-line out! I was so glad, they can be such a breeding ground for staff infection, I sure don't need that not having a spleen and we will be leaving for Japan. I really wanted it out. I have had staff once before and it was not fun. I have had a lot of Diareah again, wakes me up in the middle of the night and keeps me up a lot lately. That is from the not absorbing fats. It is going to be that way until they figure it out. I am eating lower fat meals but everything has fat in it to some degree's. I just have t try and keep it under control as best as possible. It sucks when it spirals out of control along with the pain and vomiting then I am always headed for Baylor. I hope to stay out of there for a long time. I have received a couple calls lately, a nurse called me that has pancreatitis and she has had it a long time. She told me that she is now needing insulin. She got my name and number and called me about the Islet Cell Transplant. I talked to her for a long time about setting up appointments with some different Doctor's. She already was seeing Dr. Mallat and knows about the Doctor's that I have seen so I just encouraged her to go see the rest of them and weigh her options once she saw all of them. I hope to hear back from her. Then I talked to Lou Ann her Son is 18 or 19 and he had the Islet Cell Transplant about 9 months ago. He is doing really good! I enjoyed talking to her again and catching up. She has talked to a lot of parents about there kids that have pancreatitis she has being helping the younger generation in dealing with the disease and talking about the Transplant. She called me for my opinions on a few Doctor's and such. I am so suprised I asked her if she was finding many younger kids with the disease and she said suprisingly Yes! I just can't believe how many of us are out there. It seems now that I talk and help so many other people it just opens so many other doors. I wish I had the time and the funds to help people all the time with this but unfortunetly I don't. I am trying to get ready for Thanksgiving, what are all of you doing for the Holiday? I hope everyone is feeling as well as can be expected and is able to have a good Holiday. I will close for now and talk to everyone again soon. Love to all of you! Lorie
Hi everyone: I am home and I have been for a few days. I apologize for not writing quicker. I will keep this short because I only have a minute, I will write more tomorrow late. I have a Doctor appointment with Dr. Lamont tomorrow so hopefully I will have a bit more information then. I really don't know much. I did gain 5 lbs in the hospital and they got me hydrated and a bit rested which was good. I was able to have my pain under control there which was another good thing. Nothing like relief! I still have my PICC line in, hopefully they will take it out tomorrow. I think he wants to run more blood work and see if my weight is hanging in there. I have been catching up on work and trying to get things done around here. I only have about 3 weeks and we leave for Japan. I am so excited that I will be able to see Ashley and Robert. I can't believe my Baby Girl is pregnant! It will be so great to see her and so unbelievable once I see that pregnant tummy! I am having to get my Christmas shopping done, wrapped and shipped to my family in Oregon, and then stuff to Japan, and things we will have for Christmas with my family here when we get back. Chaos! I am needing to get it all organized and together in a hurry. I will update you more tomorrow when i see Dr. Lamont and hopefully I will have more info for you. Thank You to all those who have had there thoughts and prayers with me. It really does mean a lot! I don't know if all of you know how much it means when you have support out there and you are needing it so badly. I truley cherish the comments and all of you that keep up with me. Love to All, Lorie
I am done toughing it out. Just to many days going by and I have not been able to hold anything down. I am hoping they will get me fixed up so I can be done with all of this. I will let you know how things are going. I will try to have Eric journal or bring me the laptop. I have to get well before we go to Japan for Christmas. My Brother In-Law gave us miles so I can see Ashley 7 months into her pregnancy with our little Sydney Renae! I will post soon, I am not feeling well at all and need to get to the Hospital. Love to All Lorie
I am so excited I got a call at 1:00 AM From Ashley and Robert. They are 14 hours ahead of us here in the States and she called as soon as her Sonogram was over. WE ARE HAVING A GIRL! They had Names already picked out so my Grandbaby will be named Sydney Renee which I think is a beautiful name. Sydney weighs 13 oz and everything looks great. Her heartbeat is strong and Ashley said they could see all her little fingers and toes. I am so happy and I am so thankfull to God for anwsering our prayers. I have prayed each and everyday that Sydney will be healthy and that everything goes along fine. We are truely blessed. Ashley's due date is March 7th. She just started her 5th month. I wanted to share this with everyone. I am smiling now just like I was at 1:00 Am this morning, I am sure it will stay that way today. I will be out today to buy something PINK!!! Love to All.............. Lorie
I know exactly what you are going through. I know what Paige is going through. I have been going through a lot of the same. I have recently just gotten Dr. Lamont's attention again. I started feeling like ok we are almost there with getting me fixed up except the weight loss, pain and vomiting. I know that sounds like a lot and it is but there has been so much other work completed. I started to feel like OK, everyone did the surgery and we are several months into it and now they are giving up on me. My Pain management Dr. Shaw started weening me off my meds, bigtime even though I was still having significant pain. I went along with it for awhile because I wanted off the meds as well and I wanted to see what I could tolerate. When it got to the point that I was at about 1/2 the dose I was on, the pain was so bad. I also spoke to Dr. Lamont about it and he felt it was a good idea but that Dr. Shaw was doing it to quickly. Sooo Dr Shaw slowed things down and now is just holding me steady for a bit. Then I went through the scope in July with Dr. Mallat and he said I was fine had an ulcer and scar tissue but no obstruction that he could SEE! Well several months ago I had a full blown obstruction that he didn't SEE! Next step was just juggling Doctor appointments things getting cancelled and them not rescheduling mainly another scope. I was told they had a new one (scope) that could go farther into the small intestine and that my obstruction before was way, way down so I thought Ok, we will check that out. Never happened never got scheduled. My next appointment they called and cancelled DR. Lamont's Office, and Dr. Mallat refuses to do another scope. Even though I do have an ulcer at the hook up of my stomach and intestine sure hope it hasn't started to eat through it. Then I posted all this other stuff the other day that happened and Dr. Lamont had a different attitude. I told him I felt like everyone was just giving up on us. He assured me they weren't. I honestly feel this way, that they are in unchartered waters. They thought we would be well. We are two of the complicated patients, Paige and I. I am going to make them figure this out. I am going to force the issue until I am well. I am not giving up when I am this close. I did not go through the hardest part to be left sitting with this. Sooo I promise you I will do what I can to help figure out the unchartered waters. What enzymes is Paige on and does she take them religously? That is very important. I also am studying all that. I have had bad pain days the last couple days and all the other stuff that goes with. I will keep you posted on what they are going to do. Please tell Paige NOT to give UP! we did not get sick over night and it is taking longer then what we had hoped but we will get well.... I also wanted to say that The pain meds are not ready to be taken away, but 8 mg of Diladid is honestly a lot. I am NOT passing any judgement you know I never would. Please just see if there is anyway she can cut a little bit out very slowly. It is not easy and I know it is hard but it might help a bit with the GI track. Like I said NO JUDGEMENT! I just care so much.... Carol please tell Paige I am thinking of her! Love to you all Lorie
One More thing that is so EXCITING, Tuesday my daughter Ashley and her Husband Robert are going to the Doctor for Ashley to have her 5 month Sonogram! You know what that means I am going to find out if my little Grandbaby will be a Boy or a Girl....... So Stay Tuned for the News! I will let you know as soon as I hear I PROMISE!! Love to All Lorie
Hi everyone! Well never did I think I would be sitting around like last night with a girlfriend talking about not being able to find any pants that fit because I am to tiny! I went shopping to try and just find some pants to fit, well that was a reality check I am in a double zero just try and find double zero's for women that are in there forty's! Especially being a Realtor and needing nice dress slacks. I am sure I can go to some teen department store and find jeans but slacks are a joke. I have always had to flip through the racks of clothing saying jeepers is this all they have anymore is size 2 and 4 or even 6! Now I am saying is this all they have size 2 or zero is there smallest. I have put this off for so long waiting to gain weight, I have to have some clothes. The bad thing also is the more specialized the clothing the higher the price. I saw Dr. Lamont, Dr. Shaw and a Cardiologist (Dr. Wells ) all in the last week. There has been so much going on with me it is crazy and over whelming. I am so close to being better but yet at times I seem so far away. I had an incident about a week ago that scared me really bad. I would be curious to know if this is anything that has happened to others. Eric and I had went to bed and I was laying there just startign to doze off and my heart started beating fast and then skipped a couple beats, I tried to say Eric's name to get his attention (the lights were off) and I could not say his name. Sound came out but not much, I continued to try and say his name and it was just not working. Finally he picked up on something not being right and shook me, he thought maybe I was havign a dream. When he finally shook me I was able to talk and explained what happened. It scared the heck out of me. After about 20 minutes I layed back down and it happened again. I know now that it was probably pretty stupid to not call 911 at he time but I was just not thinking it all through clearly. The next day after thinking things through and wondering if maybe my pottasium levels were off or something like that, I called Dr. Lamont's office and they ordered blood work, set me up to see him and set me up with the cardiologist. The good news is my blood work turned out ok which really in all honesty shocked me. I really would have thought my Electrolytes would have been way off. However, when I saw Dr. Lamont he said "well Labs don't tell everything & I am very concerned about my weight" He also said " I am sure that you are not absorbing fat's". He is working on my enzymes and making some calls to the companies that make them trying to see if there is something such as one of my med's blocking or keeping them from doing there full job. He is also trying me on a couple different medicines and he said if I was not remarkable better in a few days that he was going to proceed with the scope. Dr. Mallat is NOT wanting to do the scope which is why there has been such a hold up with it getting done. The two Doctor's are going back anf fourth round and round about it. Dr. Lamont said I will just wheel you in there with a GI team and do it myself, we will go through there inch by inch and see what is causing the pain and the problem. Soooo I am waiting to see what happens. The Cardiologist was very nice Dr. Wells is at Baylor Dallas and his office is at The Heart Place (That is the actual name). He did an EKG, and Echocardiogram (Ultrasound of the heart) all which turned out normal. He talked to me at length and said that Dr. Lamont spoke to him for awhile and gave him my history. Dr. Wells said that Dr. Lamont is very "Protective and concerned about you" which I thought was sweet. He said we could put a monitor on you for 30 days even though Dr. Wells did not think I needed it and see how things go but all in all he really thought I was ok. The part that concerned him was not so much the heart Palpitations but the not being able to talk part bothered him. He said that if it were a mini stroke usually the not being able to talk lasts longer (30 to 60 min.) then just a couple of minutes. I said no it was not vey long, He said it seemed more like a seizure. I have never had anything like that at all. Dr. Wells said if it happens again we should proceed and have me wear the monitor and also see a neurologist. Pretty much what I told Dr. Wells was I really did not want to wear a monitor for a month nor did I want to have any other tests if he did not think it was necessary. He said he thought it was fine to not do anything at this point. He did say I am not sure if Dr. Lamont will agree, and if he doesn't we will be calling you. Since then I have been fine, it has not happened again. I am hoping it is just a weird one time thing. If I could just get the rest to me to work I would be really happy. I am so fatigued. Working really zaps my energy. I have been battleing some depression as well. I think it is just everything all happening at once. I have had a lot of pain days and super severe nausea. I HATE Nausea! I will keep you all informed. It is hard to journal as much especially when I have all these darn Doctor appointments and work. I get behind with work and then it takes forever to catch up. I am so blessed to have my assistant Teresa, she keeps me organized and is so very supportive which means the world to me. Ok, I need to close for now but I will post again very soon, I am going to try and do better. If I can only type a few lines I will do that because I don't like to go days without posting. Diane I hope you are feeling better and Carol touch base with me and fill me in on Paige I have not heard from you in awhile on how she is doing. I think about all of youout there often. I have you all in my thoughts and prayers. Love and Hugs Lorie
Hi everyone: I have not posted lately I have been feeling rough and also had my parents in town with some very dear friends of there's. I have been playing catch up at work and also trying to figure out some stuff with my health. I am going to do a couple of posts this one I thought might be good information for those of you that are getting ready to have surgery, or have had it recently. Also for those of you that are really sick and unable to work you should check into this as well. Before I had my transplant about 1 year prior when I bought my car I asked about the credit, life and disability they had through the dealership. Normally when I purchase a car I tell them DO NOT put that in the contract. One of my very best friends has managed a car dealership for years and had told me to ALWAYS tell hem to not put all that added junk in there when purchasing or leasing because 90% of them put it in the fine print it is an extra sales credit to the salesman & costs you a lot more per mo. A lot of times they Do Not Tell You! So ..My point is this, I have always made them take all that junk out, this time I specifically asked them to put it in. I knew the chances of me having my transplant were very high during the term of purchase on my car. I checked the fine print and asked the salesman about pre-existing ect. The contract talked a lot about heart disease and cancer but nothing about pancreatitis or transplants. I added it to the deal and after my Transplant I filed my claim. It took them about 3 months to approve it but they paid for 10 months of my car when I was unable to work. I am very glad I did it. For those of you that have car notes take the time to pull out your paper work and look it over, if you just are not sure what to look for call the dealership were you got your car and ask for your salesman, financing dept. or someone that can help you. When I went to file mine I had no clue so I called the salesman & he put me in touch with the right person. I had never filed anything like that b/4 but wow did it help while I was not working. I thought this might possibly help someone out there who is out of work for a serious illness or lengthy recovery involving surgery. Also check over any other major purchases Furniture, home, home owners insurance policy ect. I have been told that some Home Owners Insurance policies have a clause in there as well if you are out of work for a long time. I would love to hear back if anyone get's a break from something it would be great! I will post again soon, I Go to the Doctor tomorrow so I will update everyone then. Take Care Lorie
I spent about an hour on the phone last night with a Lady that has been sick since birth she is now 30. She has battled chronic Pancreatitis since birth. I have dealt with the disease for 14 years but can't imagine having so much unbearable pain as a baby and child growing up. The wild thing is she goes to the same Doctor's as I do! When we were talking last night we decided to meet Thursday because we both have Doctors appt 15 minutes apart with Dr. Lamont. This was just so wild. She originally found out about me through the Newspaper article they did on me. She is really struggling with should she or should she not have the transplant. I listened a lot and talked a lot and personally feel she really needs the Transplant, however it is something she has to decide. I know how very hard that decision is. She has been in the hospital over 250 times in her life. I thought I had racked up a bunch of admits but I know it is not 250. I am really pulling for her and have her in my prayers. For those of you that do pray please include Kim in your prayers. I will know a lot more about the scope and what all they want to do with me on Thursday. I will besure to keep all of you up to date on what they have to say. I have to go but I wanted to journal real quick to all of you. Love Lorie P.S. I hope I did not offend anyone with my point of view on Govenor Palin.