Lorie’s Journey Through A Medical Nightmare & To The End To Catch her Rainbow!



I call my story a Medical Nightmare only because in our world today we have wonderful break through’s  in Medicine, but there is the harsh reality of what you have to go through to get to the right Doctor’s and Hospitals. You will read my story of how to get to the Great Doctor’s, treatment & hospitals ultimately this is what will lead me to the end of the dark tunnel to catch my Rainbow! That is why my story is so very important. I want you to have a rainbow as well! 


August of 1994  


This is when my Journey started I was on a trip out of town with my former Husband, and the last day I was there I started to not feel very well. I pretty much thought it is some kind of bug and brushed it off. The next Morning I was in severe pain, I had terrible nausea and vomiting and knew I had to fly that day.  I will remember that flight for the rest of my life! The pain was so excruciating I just wanted to be home and in bed. My Husband had called the Doctor and I was scheduled for an appointment the next morning.  My appointment was nothing earth shattering he was a Gastroenterologist that I had seen before for a small issue. He basically told me he would run some lab work and to go on home. I waited still in horrible pain and vomiting for 2 more days. In hind sight I should have went to the Emergency Room, I was young and always very healthy so I was naive. I rescheduled my appointment and the Doctor told me there was nothing wrong with me, he suggested doing a scope of my stomach to see if I had contracted some type of bacteria. I was saying Yes anything just figure out what is wrong. I went under anesthesia at his surgery center connected to his office. When I woke up I was told I had a bacteria in my stomach called H-pylori. I was prescribed some antibiotics a very low dose pain medicine called Darvocet and sent on my way. To make a long story short, 2 years later I was still having acute attacks, I was billed $2,000.00 each time I was scoped which was a total of 4 times and basically left weathering these attacks at home.  During this 2 year period I had went through a Divorce and had married Eric. Finally some relief Eric called the Doctor over and over since he was not good at returning his calls and basically he told Eric he would admit me to the hospital with nothing to eat or drink and no pain medicine. This infuriated Eric and he started making calls.


1996 

I picked up my records from this Gastroenterologist and went to see another Doctor in Arlington. I am so very glad I did. Dr Bracy took one look at my records and all the lab work over the last 2 years and he said you have pancreatitis. I said “What is that” He proceeded to explain to me in great length what was causing such severe pain. Dr Bracy was absolutely amazed that I had been weathering these horrible attacks at home on nothing more then a glorified aspirin. He told me that the diagnosis was all in the lab work. Evidently the prior Doctor was good at ordering lab work but never bothered to look at it, even when I enquired.  I was told by Dr. Bracy this was a serious condition and that if I had another attack I was to contact him immediately so he could admit me to the Hospital.   Over the next 9 years my condition deteriorated and I had been through so many tests, procedures, hospitalizations and invasive surgery’s I honestly have lost count.



January 1997



In January of 1997 My Husband Eric had his 40th Birthday! I had been thinking way in advance about what could I do that would be really special for this Birthday. My Girlfriend Mikki and I talked and went through tons of ideas. I asked Mikki to help since we did everything together & whatever was decided I knew that Mikki & her Husband John would be a part of it. We finally decided it would be really great to do a trip somewhere, we would keep it as a surprise!
We decided Mexico would be fun & pretty inexpensive. Everything was planned & when the time came it was a blast! Eric knew something was up so it ended up not being a total surprise but that really made no difference at that point. With all that had been going on in our lives we most certainly could use the break. We spent four days & 3 nights in Puerto Vallarta Mexico.
Only one day after our return home I once again became very ill. I am so Thankful that this attack at least waited until we returned home. I phoned the Doctor and was admitted to the hospital. Dr Bracy decided to do a test called a Hyda Scan. This Scan is of the gallbladder they wanted to make sure it was functioning properly. I do not remember exactly all the steps of this test. I remember that it was very lengthy & not real fun. First they take several films prior to an injection of medication to watch how the gallbladder is functioning. The next step is to inject a medication into your IV & again take more films & watch to see if there is any change in how the gallbladder is working. I remember that I immediately became severely nauseated. I called for the nurse, she said I am sorry but this usually happens if the gallbladder is not functioning properly.
The Hida Scan showed that my gallbladder was full of sludge, it was functioning but not well. Dr. Bracy told me that this could be the potential cause for my Pancreatitis attacks & that it needed to be removed . I was excited at the thought of having this all behind me. I was in the hospital about 8 days. They had to wait for my pancreas to settle down before the surgeon could take out my Gallbladder. Of course as usual nothing to eat or drink for the first 5 days (each time I am admitted I am only allowed Ice Chips). The reason for no food or even water Is they want the pancreas to rest. The pancreas produces enzymes & even one bite of food causes pain, many of you are probably asking why? The reason this happens is because the pancreas is trying to do it’s job by dumping those enzymes into my stomach for my food to digest. The enzymes travel through your Pancreatic ducts to get to your stomach, except mine are blocked so the enzymes are trapped in my pancreas digesting it’s own organ.
After the 5th day in the Hospital the Doctor’s felt my pancreas had calmed down enough to do the surgery. They ran a blood test called an Amylase & Lipase, this tells the Doctors what the level of your enzymes are. When I went in mine were in the thousands a healthy pancreas would be around or below 180, I believe.
My Gallbladder was removed, they could not do it with a laparoscope because they wanted to go ahead and surgically look around for stones and any other potential blockages. After the surgery I was there three more days, they let me have clear liquids the first day, full liquids the second day and then a soft diet the third day after the surgery. I was able to tolerate that and finally discharged to go home.
The unfortunate part is my gallbladder may not of been functioning properly but over the next two to three months it was very apparent that the gallbladder was not the cause of my pancreatitis.
One of the real turning points for the worse was in 1998 when they decided to do a test called and ERCP. I was put to sleep and they put a scope down your esophagus, past your stomach and small intestine until they reach the pancreas. They were injecting dye to see if there was any blockages and there most certainly was. They took a surgical wire and inserted it into one of the ducts to open it up so the enzymes that are supposed to flow into the stomach to digest your food would be able to do that. If it is not working and it is blocked the enzymes back up into the pancreas and it starts digesting it’s own organ. The Doctor said even though I was under anesthesia when they did this I came a foot off the table and all those juices started pouring out. When I woke up I was in the worst pain I  have ever been in. It is completely indescribable. This is the point were my condition turned chronic. I do not blame this Doctor, he had to do it. The problem is I went from having flare ups every 6 to 9 months to chronic daily pain. In 2001 they had to do this all over again and once more everything was blocked. I was then referred to a pain management Doctor to work on my daily pain that I just could not take any longer. I did not want to go, I was actually angry about it. The only thing I could think was throw pills at me and then what? My chronic condition is still there, the nausea the vomiting and all the other problems Were not being resolved. Dr Bracy said “Lorie we have to get your pain under control” and we will continue to work on finding the cause of your condition. They knew I was having blocked ducts but nobody knew why this was a continued problem, the procedures were not resolving the issue like they do for many of the patients he has seen. There are so many levels of gastroenterologists. Dr. Bracy is a great Doctor very compassionate and smart. The problem was in hind site is he had only trained so far, which was most certainly ok for the majority of the population. I just happened to be a difficult and rare case. 


2001

 I started pain management in 2001 and changed Doctors one time the first one had zero compassion. My pain management Doctor now is awesome. Dr. Shaw is caring, compassionate, very brilliant and I trust him completely. I have learned this step was necessary to help me cope in my daily life. I finally at least had some control over the pain and nausea my Pain Management Doctor is also a Anesthesiologist which I feel is very important.   I continued to increasingly get worse and had more ERCP’s, tests and hospitalizations than you care for me to go into. There were times I was treated like a drug seeking addict in the emergency room. I was humiliated and questioned and vomiting in front of there eye’s curled up in a fetal position in so much pain and the Doctors would just flat treat you like you were not even human. The problem is when you are sick this often your Doctor is not always available and if he isn’t you have to fight for every inch of care you deserve. I started carrying a letter from my Doctor so if he was not on call I could hand it to them. This helped sometimes and sometimes not, it depends on the ego involved. I have more stories on this than you care to read, it is earth shattering. It is not always this way but Arlington Memorial’s wait in the ER is astounding. I could wait 6 to 8 hours or more in the waiting room. I would call my Doctor at home, Ha I learned how to get that number and he would call up there and tell them to get me back there immediately, and tell them I am a priority since it is a major organ involved here. Doctor’s go on vacation and have lives just like us so it unfortunately is not a given that this would always occur. I also learned when I was in very bad shape how to call 911, the ambulance pulls up in front of your house and cars stop and gawk at you and you feel invaded at times.  


2005

The turning point was in 2005 Dr. Bracy had a talk with me and said Lorie I can’t help you anymore. This is over my head basically and I want to refer you to Dallas. I was hesitant and scared because I knew here we go another Doctor.  It was the right choice, my life changed for the better and for the worse.  I have to Thank Dr. Bracy for having the courtesy to say I am not able to help you any further, there is obviously a lot going on here that I can’t find.  I was referred to a pancreatic specialist, Dr Damien Mallat. When Eric and I walked through those doors for the first visit it was with fear and hope. The appointment went exceptionally well. Dr. Mallat said Wow, you have a lot going on here so let’s get to the bottom of what is causing this ( my exact thoughts were am I finally going to know why). I was set up for several test’s (Yep more tests). Before I had a chance to even set things up I had an attack, I called the office and the nurse said I will call you right back (I was thinking yeah right). She did, she called me within 15 minutes and said Dr. Mallat is direct admitting you to Baylor. I said I don’t have to go to the emergency room? She said no why would you do that? I was like AWESOME! Eric took me to Baylor in Dallas, I went straight to admitting and they had my room waiting for me. I could not believe it! No waiting room, no humiliating questions from ER Doctor’s The biggest one is are you an alcoholic? When you say no they look at you like you’re a liar. The most common reason text book wise for pancreatitis is alcoholism. I wish I had a dollar for every time I have been asked that question over the last 13 years!  Once I was admitted I went under several tests one being an EUS this is another scope but it goes down through your body and does an internal ultrasound. When I woke up Eric was standing there and the Doctor came in and said well we have answers. I could not believe it! He said Lorie you have a rare condition called Modified Pancreatic Divisum. I already knew what this was with all the research I had done. I did not know how extensive it was but I knew it was not good. I have 1 and a half pancreases with more ducts then you should be born with. The problem is that  the ducts are not all formed and the ones that are he said are very  tiny they clog and scar. My pancreas was trying to even make knew ones for the enzymes to exit these are called side branches, which I have multiple unfortunately they are all inside the pancreas and they do not exit the pancreas.   


Decisions to be made April 2005 


After I was discharged from the hospital we had some decisions to make. The Doctor talked with Eric and I about using stents to force the ducts open to drain. I was not ready for this, I was concerned and very worried.I have been a member of the pancreatitis message board since 1997 just about everyone I knew who had stents placed in the ducts did not get any good results. I however really had no other options at this point. We had to know if the stenting would help me. I went into the procedure with optimism hoping this would work and I would finally have some relief.  This was to be a day surgery, they would do another ERCP but this time once they got to the duct in the pancreas that they wanted to stent they would place it in the duct, watch and wait to see if it would drain. The duct   was draining so they decided to only use one stent and not two. There was question if Dr. Mallat would actually end up stenting two separate ducts. When I woke up I was in severe pain, nausea was over whelming me so I was admitted. I stayed a few days and was released for home. The problem is I actually felt considerably worse. The stent was supposed to stay in for 6 to 8 weeks and then be removed with the hope that the duct would remain open. After about 2 weeks I was failing miserably, I could not handle one more minute of the pain. I was re-admitted they immediately did an ERCP and they found there answer the stent had clogged.  Dr. Mallat could see that after the procedure and the draining started somewhere in the two week period a lot of sludge that had built up in my pancreas had clogged the stent, the stent was removed and I was readmitted.  Eric and I discussed the stenting with Dr. Mallat and he told us that the size of my ducts was very small and that was not good. They are so small they clog and scar and it is a vicious cycle. We however were not giving up, the plan was to wait until I was feeling better and we would try again. Dr. Mallat was very honest with us and told us both that the disease you have is very difficult to treat. I admire his honesty, he is very passionate about his career path as a Doctor. I know I can ask him anything and I will always get the truth. We were told it could be a long road, he is very correct on that.  Things changed after the first stenting I was starting to have more difficulty with holding down food, my medication and even fluids. I would try to weather the worst at home but there was the never ending dehydration, low potassium levels which is very dangerous. If your potassium levels get to low and stay this way for along period of time you can go into cardiac arrest. Pancreatitis is nothing to fool around with, at any time you can have such a major attack that there is death in some people. The ratio is low but major organs can fail.


July of 2005 

 

 We decided to try again with the stenting. I under went another ERCP and stenting. The same results as the time before. Dr. Mallat then set us down and said he did not think I was a candidate for anymore stenting, He explained that my ducts were just to small. He said you are not responding well to this treatment. My pain management Doctor had to increase my amount of pain medicine just for me to get through each and every day. We were devastated, we talked about other options there are certain surgeries that some people under go to help correct there pancreatic condition. I however was not a candidate since it all is about the digestion and the ducts.  It ends with the fact that the ducts are small, they can not be reattached if other surgeries were done there just is not enough there. The Total pancreatotomy (removal of the pancreas) and islet cell transplant was brought up, but I just was in denial that I was going to have to have a transplant. I truly believed there would be another answer.  I started spiraling down and was being admitted every 6 to 8 weeks to Baylor for treatment. The average stay would be anywhere from 5 to 8 days. I continued to see my pain management Doctor monthly, my GI Doctor and even had to find an additional pain management Doctor to treat me while I was an inpatient at Baylor. My long time pain management Doctor is in Hurst and he is not on staff at Baylor. I have two pain management Doctors one as an out patient and one as an in patient.  From April of 2005 until today I have had more hospitalizations then I care to count. I have had more invasive testing meaning more ERCP’S to check the pancreas and EUS which is the internal sonogram. I actually had a very bad experience with one of the procedures. I woke up twice during the procedure because the anesthesiologist was keeping me to lightly sedated. Complete panic arouse, I wanted to breathe, swallow, talk and tell them Hey I am awake. They knew and out I went again only to wake up again during the same procedure. Needless to say I know who that anesthesiologist is and he has never been, or will be my anesthesiologist again.  

March 2006 


In March My Pain management Doctor, Dr. Albert Shaw needed to do an outpatient procedure on me which I needed to be sedated for. After so many hospitalization’s and so many IV’s there was such very limited vein access they had to start using my feet. Dr. Shaw was not happy about this he did not want to have to use my feet. He knew that would hurt and just not a good situation. They went ahead and did it but afterwards on my next visit he said “Lorie You need a Medi-Port”. I knew it was time because I had been having so much trouble in the hospital the IV would blow and at times they would have to stick me several times digging around for a vein. They started doing central lines in my neck.  This is were they make an incision in your neck off to the side  and run a catheter in with a wire inside.  Your face has to be draped and nobody can be in the room because of infections. The Doctors drape my face so I am not breathing any germs into the air. Not a lot of fun when you are claustrophobic, it gave me a great deal of anxiety. I had my lung punctured the very first time I had a central line. It is not guided by a sonogram it is a trained skill and a shot in the dark. Once they are in they run a X-ray to make sure it is in the artery and not the lung.  A Medi-Port is done under anesthesthesia by a vascular surgeon. The Port is placed in a major artery under your skin just below your collar bone. Once it is in place it is utilized for IV access. I have a visible lump that is just a bit bigger then a quarter. The IV Team at Baylor sends in a Nurse that specializes in Ports when I am admitted  the team accesses it for the nurses.  It is a sensitive situation and I am very PICKY about who comes at me with a needle. If there were to be an infection it could be bad news. The port catheter is close to the heart and they are in there injecting stuff all day long. When it is time for me to go home the IV Team comes back and removes the IV Tubing and Needle that goes directly into what I call a little silicone bubble under the skin. The port must be flushed with saline and then Heparin. The Heparin keeps the artery open so there are no blood clots.  I Love my port it has made my life easier and so far I have had no trouble and it has been one year almost to the date. I Thank Dr. Shaw for setting this all up so quickly for me. He knew it would be better for me, I just did not know until after I had it.    

October 2006 Enough is Enough


 After a lot of talking and so much daily pain something had to be done. I have been working as a Realtor during this whole period. I never gave up my job I could not imagine laying around everyday feeling sorry for myself. I have an awesome team under me and so much support from my Broker Jody, to fellow colleagues. My Team Leslie and my son Derrick they carry the ball when I am not able to.  They also are working with there own clients during this time. Eric and I decided it was time to consider the transplant. We flew to Minnesota in November to meet the surgeon that actually started this whole concept and has performed around 200 surgeries. Dr. Sutherland concurred that I needed the transplant. We however were stuck with a huge decision. Do I have the surgery in Minnesota or should I be the 2nd or 3rd patient to have the Transpant here at Baylor Dallas. With a lot of thought and research Eric and I decided on Dallas. There are several reasons for our decision some I will not go into. The ultimate deciding factor was My GI Doctor Dr. Mallat and other surgeons along with a endocrinologists, (they handle diabetes & other hormone issues) a Psychiatrist and Transplant surgeons had formed a committee for over a year prior to now just for this particular Transplant Surgery. The transplant surgeon that I visited in Minnesota flew down met with the committee and even discussed my case. We feel very comfortable with our decision. 


 
January 2007 The Light At The End Of The Tunnel We Finally Have a Plan 

Dr. Mallat Referred me to the Transplant Surgeon Dr. Lamont the appointment went very well. A lot of my questions were answered without me having to ask. You can read the rest of my story on the journal page of my website. I have a detailed journal of this visit and what has been happening since. Thank You!I want to Thank my Sister Kathy for all of her hard work that has gone into this website. I have a passion to let as many people know about this surgery and option for an end to this horrible disease. There are so many Doctors that do not even offer this as an option. So many patients that are stuck in the tunnel and don’t know how to get out! For so many years I have just had to live with this disease, now I can see a light I can see an end. I want my life back, I am a fighter and you can bet that I will have it back! With the support of my Husband Eric, My Children, My Family and Friends and most importantly GOD, I will get through this long journey and at the end will be a rainbow. Love to all of you pass this website on and maybe just maybe I can touch other people’s lives and save some as well.

Thank You, Lorie