Dr. Rilo

Tuesday, November 29, 2011

I guess I will leave this shirt at home
when I go to the UMC in Tucson:-)
I am not sure if I have mentioned or posted about Dr. Rilo yet so I needed to update the blog! Dr. Rilo is my new doctor at the UMC Medical Center in Tucson. It is the medical teaching hospital associated with the University of Arizona, my rivals as an ASU alum:-) That is okay though, as Dr. Rilo will most likely be saving my life here in a few months and I may even wear a UofA shirt once this happens! Upon researching, I found out that the UMC had one of the best facilities for treating chronic pancreatitis. Dr. Rilo worked at the University of Cincinnati for many years before coming to Arizona. In Cincinnati, he was able to take out the pancreas, isolate the cells inside that pancreas that produce insulin, take those cells and inject them into your liver, and make you possibly not a diabetic! Wow, and yes this was a Grey's Anatomy episode, really it was;-) This is a 14 hour procedure with a grueling recovery but many who have had this done say they never regretted it even with their surgical pain. I had a 3 hour consult with Dr. Rilo last week prior to my new news. He then put a continuous glucose monitor on my side. It was a catheter that takes my blood sugar every 5 minutes. He also made me prink my finger 4 times a day to check blood sugar before eating. I then sent him the monitor and the results so he could get an idea of what type of islet yield he would be able to get from my pancreas. This is also to make sure I have not developed the start of diabetes. I can't wait to see what those results are as well. Again, praying for a high function and a great yield.

Anyways, as far as Dr. Kahn and Dr. Rilo, both from the UMC, they were wonderful! I met them both and they stayed and answered all of our questions. Dr. Rilo knew my medical records like they were his own! He had done his homework. My medical records are the size of many many leather bound books (ha, humor is good)! He knew everything about them. He felt something was not adding up. He asked me how much I had to drink the night before the first attack. I told him 3 drinks. This was the honest to God truth. He said there was no way three drinks caused this. He said there was some part of the puzzle missing here and he was right. At that time we did not know it was hereditary. Now we do, and once I called him he said it made so much more sense. I emailed Dr. Rilo and within 10 minutes he called me. I missed his call so he left his personal cell phone number on my voicemail. I talked to him on speaker with Dr. Kahn too. He assured me the surgery can still be done on me even with this finding. He also assured me that the risk of the cells developing into cancer in my liver would be much smaller than them developing into cancer in my pancreas. I was relieved a little.

I go back to the UofA on Dec. 21st. I will be there for three days having an extensive amount of testing done. I pray it goes well so that I will be allowed to have the surgery. As long as everything else is healthy and all the options have been eliminated, I will get approved. I must have this surgery now. Before, I was on the fence as they say. I thought I would do it, but maybe later. Now, I know I have to do it and I have to do it as soon as possible. I need this organ out of me before anything else happens with it (and you know what I mean without saying it, yikes!). So again, friends and family, I need prayers. I know there are so many worse things that can happen. I feel like this is the worst sometimes, but I remember those who are not here anymore to fight their battle and I am reminded to keep fighting!

If you or anyone you know are suffering from pancreatic cancer, chronic pancreatitis, or any other pancreatic issue please please please call the UMC, Tucson. Ask for Dr. Rilo or his receptionist Renee. I am telling you he could be the man that saves your life too! He is a brilliant man with a lifetime of dedication to this organ and he knows it better than any doctor in the three states I have gone to for help! He was truly brought into my life by God and I know he can try to help you too.

Hereditary Pancreatitis

It has been a while since I last posted. That is because I have been rather sick:-( A trip to the ER with some less than helpful Doc's who said "I am finding nothing wrong here" and a few tears later, I am now somewhat better. BLAH. Anyways, today I had the worst day of my whole life. I can honestly say that, but it's better now, and for some reason I feel like writing about it right now before the clock turns midnight and the day is over. I think it is so that one day when I am loving my beautiful life with my husband and  beautiful babies that I know God will give me, I will be able to look back on this post and think about how far I have come. My best friend Katie told me tonight, "Whit don't worry, today is the worst day of your life and it is only going to get better from here." She is so right, did I mention I don't know where I would be without her? It's funny that in your darkest hour you revert back to those friendships that mean the most to you and make you feel the best. Anyways, months ago I have genetic testing at the Mayo Clinic and the results took forever. During my meeting with the genetic counselor we went through my family history. She said there are three possible genes that could be causing my issue. Most docs said they were sure it was NOT any of these and that the test wouldn't change things. So I didn't worry about it until I reached the Mayo. They explained the increased risk of pancreatic cancer associated and the importance of knowing. So I was told that CF, SPINK1, and the hereditary pancreatitis genes could cause this. The worst one was the hereditary gene, as it caused pancreatic cancer in 50% of patients. It is always passed down to babies and my mom or my dad has this gene and it has not manifested itself in any way known yet. The next, SPINK1, could be passed down and could cause pancreatitis in my unborn children. The last, CF, was the cystic fibrosis gene and it could cause pancreatitis in patients with it, but not all those affected with it get pancreatitis. It would only affect my unborn children if my partner had the CF gene as well. If both of us did, we would run the risk of having a child with cystic fibrosis as well as possible pancreatitis. Patients usually get afflicted with one of these genes with family history. Again, I never really worried.

With that being said, I was not worried about the CF gene and I figured I had it because I am a light skinned, blonde person with European roots. This is what the typical type for this gene is. I figured I would cross that bridge later and that all would be well. The second, SPINK1, I didn't think I had because I figured my relatives would have had this. And the last, hereditary, I really knew I didn't want with its risk of PC. My mom thought there were two family members (that would be great relatives to me) that may have had similar symptoms as I do. My grandma on my moms side had a brother who died at age 35 after having his gallbladder out. He still had the same severe back pain that he had while it was in, the reason they took it out, and eventually died from this issue, which was never discovered. My grandmas sister had back pain for years. They decided to take out her gallbladder when she was 54. She never made it out of the hospital, as my grandma said she had an infection.

Dun dun dun...suspense in this story at all? I got a call with my results today and here it goes...the sweet lady on the phone started off the conversation with "you have hereditary pancreatitis". My heart sank and my tears began without any control. She was so sweet and spoke with me for a while. As the conversation progressed she told me I also had SPINK1. After that she told me I also had CF mutation. WOWZA. Yep, I have all three of the only known genes to cause pancreatitis. FINALLY, I had PROOF and and answer to my questions. I truly feel like I just solved a crime mystery!!! I could not even talk to her so my mom (I was thankfully at my moms) jumped on the phone and took it from there. We made an appointment to go see her tomorrow at 3:00.

My emotions today have been all over the place. Part of me was happy to know I am not crazy and to have this proof. I told the geneticist that I was so sorry to keep crying and that I felt like for the longest time ER docs thought I was an alcoholic. She told me, "Sweetie, they will believe you now." That made me feel relief. After that part came the intense worry and panic mode. I am scared to death tonight for my mom or dad. We don't know who had the gene for hereditary as it has never presented itself in either of my parents. I want to talk to my GI doctor and see what he thinks about my parents situation. I don't care who has it and I am not upset in the slightest bit with either of them. My parents are the most wonderful parents to me and I would not change my life for a minute, even with HCP (hard getting used to, hereditary chronic pancreatitis). I just worry for their pancreas, I hope both are healthy and perfectly fine. I hope this is just something they carry but will never have to deal with. I hope and pray to God my brother Tyler is okay and not a carrier. He is worried too, but I honestly feel in my heart he is not a carrier. I just don't think he is, don't ask me why. He is so sweet too! He told me I was the strongest girl he knows and that I would get through this. He is a fighter too. He fought off ALL leukemia when he was just 6 years old. We are hoping lightning doesn't strike him again and that he gets a free pass on this one! Please Lord, hear my prayers tonight.

As far as my heart, its wounded big time:-( I have wanted to be a mom since I was 5! I want babies who share my skin, my eyes, my hair, my features. My mom and I are so so so close. If you know us you know we look alike, share mannerisms, thoughts, and expressions. We are very similar. I was always picturing my children to share this with me too. The genetic counselor told me not to stress yet. She said that she had ways to help me have a baby and that I would just need to be very deliberate and plan my pregnancy. She said she would test my partner and rule out what could be ruled out. I am not sure what the IVF process will be, but she said it can be done. Mentally, I would do IVF to have a baby in a second if it meant I could have one of my own. Adoption will be my alternative if I can't, but I think I will be able to. If my mom or dad had known they carried this gene and opted not to have kids that would have been horrible. I would not want either of them to have missed out on the life we have with our family for any reason. My mom and dad are amazing parents and I would not go back and change anything if I could. I would have wanted to be born and to have shared my life with my loved ones. With that in mind, I may still have my own babies and pray for the best. Just because I have all of this does not mean my babies will. Time will tell.

I got my doctor on the phone today and he put me on speaker phone with his colleagues (new post coming soon will be on my new amazing doctor that you all will LOVE as much as I do, haven't had any time to post about this yet). They were happy for my diagnosis, as it solidifies the reason to have the TP-AIT even more. He said it will give him all the proof he will need and that he still wants to study me completely before total approval of the TP. He also said in all his years he has NEVER had a patient with all three of the different genes. He was going to try and find information on any other patient that has ever had all three in the studies they have done. He was also going to ask a doctor who studies families with hereditary pancreatitis about me. He said this man is working on finding a treatment for those who have the gene, but do not have any problems yet. This might be a good option for family members and since he is doing all kinds of studies that usually means free! I am hoping I can get my family genetic testing for free. It is $2,000.00 normally and not covered by insurance so I hope I am on to something here! I am hoping my pancreas can hang in there for a few more months until surgery and I am praying that my damage isn't too far along. I am praying for a high islet yield. I am praying nothing has turned cancerous. I mentioned this at my last GI appointment and my doctor laughed. He said not to worry and that they were watching me closely. In general, if you are reading this, please pray for me and my family. I really need prayers as this is going to be an interesting 2012!

What is pancreatitis?

Saturday, November 12, 2011

A doctor made this video that explains what CP really is...I am hoping that some of his viewpoints are a bit off. I am hoping he is wrong about the "phantom pain" people get once the pancreas is gone. I do think he does an excellent job explaining the pain and also the common misunderstanding that ALCOHOLICS get this! PHEW!
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