April 20, 2015
Been thinking about writing this update for several days. I am more convinced than ever that “God’s Got This” and is in total control of our journey. Mayo Clinic is unbelievable in every way. I am being treated at the one in Phoenix/Scottsdale AZ. I have never experienced anything like it. Things run like clockwork and patients are treated with such respect. They shoot straight and totally explain everything possible. We met with all of my doctors individually. I could go on and on, but you get the idea. Please ask me anything you would like to know about the clinic. Okay just one more thing, Mayo has the highest success rate with transplants among all hospitals in the country. The survival rate is the highest in the country (in the high 90’s). What a huge blessing to be a patient there.
We talked to our Transplant Coordinator on Friday afternoon. The team has been waiting on an MRI from one of the hospitals in Reno. They received the wrongs ones at first and had to reorder them, so it has been quite a wait. The transplant team will meet to review it next Wednesday. It is one of the main factors that determine when I get a transplant. Once all the files have been reviewed, the team will start the process of getting me listed, but my MELD score (at this point) will only be 7. My score on Loma Linda’s list is currently 28. This is what happened: When my oncologist found the first tumor, he told us it was large enough that when I got on the transplant list, I would get what they call cancer “exception points” and start at a MELD of 22. I would also get 3 extra points every three months until I got a liver. The MRI they are reviewing (from April 2013, before the ablation) was reported by the radiologist at the time to be 1.5 cm. In order to qualify for the extra points, it needed to be 2.0. The surgical oncologist reported it as 2.0-2.2 cm. Mayo Clinic must review the MRI and make their own determination. Afterwards, they will let us know if I have a 7 or 28 meld score. A 28 would qualify me to have a transplant in the very near future. We can’t figure out how Loma Linda got me on the list with the exception points for cancer without the documentation needed. We feel like God led us to Mayo Clinic and we trust whatever the outcome will be. After they performed 152 tests on my blood, they know what is going on in my body. I have had every part of my body examined with MRI, Cat Scans, various heart tests, and ultrasounds. It may end up being a longer journey than what we were hoping for, or it could happen soon. We trust God to be in control and lead us down the paths we need to go. We continue to solicit your support - in prayers and/or contributions. We are so grateful to those of you who have contributed to our financial needs through www.HelpHopeLive.org. We know that many of are going through hard times, yet many have continue to support us. We don’t take anything you do for us lightly. We thank God continually for all of you. Your prayers, support and love are immeasurable. Love to all!
April 9, 2015
We arrived in Phoenix, AZ to spend a week at Mayo Clinic on Monday, April 6. We are here to go through the transplant evaluation process. Our goal is for me to get on the recipient list asap. The process is long and tedious. Mayo Clinic runs like a well-oiled machine. All of my physical tests were completed today, April 9. We went back and forth between the two campuses all week. We meet with different members of the team all day tomorrow. There are a couple of unknowns yet, and we may not know if I will be on the list for a few weeks. The success rate for transplant patients is the highest in the country. We totally understand why now. This place is wonderful. They leave no stone unturned.
I have such love and admiration for those of you that are helping to save my life. I couldn’t do this without your support. Your prayers and financial support will make a huge difference in making it possible for me to get the transplant. We are praying and hopeful that God has a plan for me. I still have a lot I want to do on this earth! I trust in that plan, no matter what it is.
I hope to have time to take some pictures tomorrow. We have had no time when we weren’t in tests or taking power naps. Our hotel WiFi doesn’t have enough bandwidth for me to update Facebook from there. We stayed over after the tests so we could post on Mayo’s WiFi! Please email us if you have any questions.
Praying for you as you pray for me! Dianne
March 11, 2015
We are excited! My insurance is willing to provide coverage for me at Mayo Clinic in Scottsdale, AZ. Our costs will be high, but so grateful to have insurance. Your help is immeasurable. I'm making appointments for more tests prior to the evaluation visit. I'm scheduled to go to the transplant center for five days beginning March 23rd. I will learn all I can from them and they will continue evaluating me. I am praying to be put on the transplant list at Mayo by the end of my visit. Thanking God for all the progress that has been made. So blessed to have so many people praying and helping with the costs. Thank you! Love y'all!
March 3, 2015
Again, thank you so much for your willingness to help financially. The medical bills are huge. I notice new names were added to the list. Along with those come prayers. I am truly blessed. Thank you!
Health Update. More good news. So thankful for the good things that are happening. I got another MRI. This time my oncologist put in the order to use the MRI shows more detail. He said there is not an artery attached to the spot on my liver. He assured me that it is not a tumor. I’m so relieved. He was happy that we are working toward getting listed at the Mayo Clinic in Scottsdale, AZ near Phoenix. Loma Linda would become our secondary transplant team. The Mayo Clinic finance team is working with the insurance company and they are getting one thing approved at a time. I’m covered to go for the evaluation which is the first step. They have seen many of my test results and have been very encouraging. I’m anxious for things to move faster, but I know that it will happen in God’s time. I keep reminding myself impatiently that patience is a virtue.
We had hoped that I could get signed up for Medicare now. From what we have learned so far, we can’t get it until October. It took a year and a half to get on Disability. Once you are on it, you have to wait two years from the month you get approved to change to Medicare. We were disappointed, but we are glad it will be available at least in October.
We have filled out the paperwork to get the drug Harvoni (cure for Hep C) from the manufacturer. That would be such a great blessing. As the damage from the Hepatitis C continues, it is really zapping my energy. I have to be in bed for days at a time. When I do feel good, I do too much and the cycle continues. My oncologist agreed that the gallstones are definitely on the back burner. They want to avoid any surgery before the transplant. I’m uncomfortable a lot with nausea and pain, but still coping with it okay.
Thanks to all of you for keeping up with me and praying for me. The support, love, and prayers make such a difference. God is so good and gives me the strength to hang in there. Love to all of you!
February 17, 2015
Happy Update!
Thank you so much to those of you who are supporting us through donations. This journey is costly and I know what you give to help us is a sacrifice. We are so thankful for your generosity.
Because of some issues we are having with the Loma Linda transplant team, we starting doing research on all the transplant hospitals with in a four hour flight. We were also looking at a possibly changing our insurance. In my research of the clinics, I discovered the Mayo Clinic transplant program near Phoenix AZ. Dave called to ask some financial questions. Their reps went out of there way to help us and answered so many questions about our insurance. They are doing research on it now for us. We are so impressed with their program and their willingness to take so much of the load off of us. My referrals and tests have been submitted and we hope to hear from them soon. If this works out, once I am registered, there is hope of getting the transplant within the next few months. We are praying that this will work out. We may have more out of pocket expenses, but the program and the possibilities of getting the transplant sooner is wonderful. The liver tumors are coming with less time in between. The treatments are hard physically. I meet with my oncologists again after my MRI on Feb 24th to determine how this one will be treated.
I will keep you posted as we know more. Love and thanks to all of you for prayers and the financial support you. Love to all of you!
All your prayers are changing things and giving us new hope. God gets the glory for all that is happening. I was going to wait until we had more facts, but couldn’t! Too excited! In doing research today for the insurance, Dave talked to someone in the transplant center at the Mayo clinic. He was really helpful and encouraging. We started the process to get me into the transplant program there. They are working with our present insurance company to gather info on what they will cover. They are not a preferred provider, but I have a national PPO plan that gives me coverage at other hospitals. Mayo is actually taking over doing a lot of the work we were doing. What a relief! The supply and demand of donated organs in Arizona is definitely in my favor. My M.E.L.D. score is presently 25, but will go up to 28 next month. The score is in the competitive range to get the transplant. The competitive score in California is high 30s most of the time. We don’t know exactly when I would have the transplant, but it’s possible I could get the transplant within two to four months once I am established. It’s all about supply and demand. Mayo would have me move to their campus once I am within range of receiving the transplant. They have cabins available and 6-patient houses where recipients share living quarters, but have your own bedroom. How fast or slow you heal, determines how long you stay after the surgery. They take so many of the worries away.
On top of those prayers coming to fruition, the pharmaceutical rep. came to see my GI doctor today to push Harvoni. They told her that they tried to get it for a transplant patient (me), and had been turned down twice. She said that it shouldn’t have happened. She was going to pull my file and work with my insurance to help push it through. Mayo Clinic advised Dave that I could take it before, during or after the transplant to make sure the new liver stays healthy. They have been successful in every case to get rid of the Hepatitis C. That gives us the time we need to get the insurance coverage. We will still have to pay a portion of it, but without insurance the 6 month treatment would cost us $1125 a day. That price seems to vary depending on who is talking.
We have a lot of hoops to jump through and paper work to complete, but prayer, patience and God’s timing we will get us through this. “God’s God This”. Don’t doubt His power. I’m so encouraged and happy! One step at a time!!! Thanks to all of you for your love, prayers and support! To those We love you!
February 12, 2015
Health Update
Thanks for your continued support through contributions and prayers. Your support means so much. This will be a little long, but I need prayer for several different challenges that we are going through. Your support means so much and it helps me to share it with you.
My son Ben came to visit and went with me to Loma Linda for my 3 month check-up. He was so glad that he went with me so he could better understand what is happening to me. It was great to have him with me. We called Dave during my appointment so he could listen. The Physician’s assistant advised that they are not going to do anything about my gallstones at this time. Too many risks are involved. I still have attacks and they are very painful, but I can endure that as long as it doesn’t create any other problems. I am being much more careful with my diet. My GI doctor in Reno will continue checkups.
The P.A. advised that the transplant team would meet the following Wednesday to review the latest MRI. I asked that I be called as soon as the meeting was over. I didn’t hear from anyone on Wednesday. The next day I called and talked to a coordinator (my coordinator, who always kept me informed, is on leave until the end of April. I basically talk to which ever case worker is available when I call and they know very little about my case. She put me on hold for a long time. She said she was told they are going to watch the tumor and then get another MRI in three months. It is approximately the same size of the other tumors that I had removed. No discussion. No explanation. I had taken a blood test along with this MRI that showed that my tumor markers are elevated which indicates cancer. This was not mentioned. I have an appointment in two weeks to get another MRI and see my oncologist.
During my appointment, I told the P.A. that my insurance had turned down my request for Harvoni which is the treatment to cure Hepatitis C. My GI doctor sent in two appeals. The goal is to get rid of the disease before I get a new liver because otherwise the new liver would contract it. The Harvoni won’t take away the damage that has already been done to my present liver, but I also don’t want to continue letting the Hep C do more damage. I will be taking it for six months and side potential side effects are the same as what I am already experiencing. As you can tell, Dave and I had to learn a lot about my disease so we can be a part of the decisions that are made. The P.A. advised that I need to take Harvoni with Ribavirin instead of Harvoni alone. This isn’t what I was told the last visit. I knew that Hep C 1a Genotype was not treated with the Ribavirin. I had talked to my GI doctor about all the options prior to this. I talked to him after I got home and he confirmed that unless they had new documentation to confirm this, he could not order the one with Ribavirin.
The Loma Linda program may be short staffed and in a slump, but my health is too important to continue on this path. My trust is shaky to say the least. My stepson Mike introduced us to his best friend who has a lot of knowledge about insurance companies and Harvoni. He has been a great help working with Dave. The insurance he suggested accepts the Mayo Clinic and covers Harvoni. His help has taken such a load off of us. This is a huge step and we need prayer for discernment and guidance to get us through this. There is still a lot of information to gather before we make the change. We will keep both insurances until we are sure we are making the right decision.
My pain and energy level continue to be an issue. Still taking advantage of the good hours! Please continue to pray for my health and now for discernment in making the right changes. Love y’all and so thankful to have you in my life.
January 20, 2015
Latest health update. Thank you for your continued prayers and support! I have been having some new challenges lately, but we are taking them one challenge at a time. I have my days when I feel a little overwhelmed, but knowing that God is with me gets me through it. I’m pushing myself to get out and do things and I have wonderful friends here that keep that ball rolling. It lifts my spirits. My last CAT scan revealed some new things. They found another suspicious spot that appears to be another tumor. I am having an MRI sometime this week to determine more about it. It is in the same area as the others that I have had. I’m praying it will be scar tissue, but am prepared with God’s help to move forward and do what has to be done to take care of it. I’m on a campaign to have more communication with the transplant team and my oncologist here. This is one of the many problems with living in a different state than your transplant team.
The CAT scan also revealed that I have gallstones. I had been having pain and many of the symptoms related to that, but just thought it was part of the cirrhosis, Hepatitis C or Pseudogout. I have attacks, but have been able to cope with them. I’ll see my GI doctor on Wednesday and then will be traveling to Loma Linda Sunday for my early morning appointment on Monday. I will update on the information I received afterwards. My son, Ben Lamb will be coming to go with me to Loma Linda. I’m so happy that he is getting to go with me. Dave had a work project and it was going to be difficult for him to go so this worked out well. My husband is unbelievably supportive and patient. We both wear arm bands that remind us that God's Got This. It keeps things in perspective! So blessed to be Christians. Most of the time, my spirits are high and my belief in God keeps me grounded. I have my pity party days, but they pass. Your support and prayers can’t be measured. Thank you! I love you!
January 20, 2015
Thank you to those of you who continue to support me through donations and prayers. I am overwhelmed with gratitude and love for you. I have recently had some new donors and I am so grateful for your contributions. I will not reveal names without permission of the donor. Amounts are never revealed even to me. HelpHopeLive believes in privacy for the donor and shares none of this information with any one, including like organizations. I know I have said these things before, but like to reassure those who willing to give! Thank you!
December 19, 2014
December 18, 2014
Dianne sends heartfelt thanks to each of you who have contributed to her campaign in recent weeks:
Ken and Cathy Sewell
Shirley Harrison
Pete and Kathie Cardinal
Gale Warren
Mary Lou Zaino and Sandra Hope
Tony Kirk
Elizabeth McCord
Scott Sindorf and Jennifer Cardinal
Louise Saxon
December 19, 2014
Past time for a health update. Sorry for the delay in posting. We had a great time with Justin, Sarah, Drew and Zach at Thanksgiving. I was able to get out with them and go to Lake Tahoe. Two days later, I had an upper respiratory infection. Still fighting it, but definitely on the mend. It’s hard to give up what precious time I have with family. This past weekend Matt, my step son, and his sweet wife Katie got married. It was wonderful to be able to be there. I got overtired and had a bit of a relapse and have had been in bed all week. I get a little frustrated, but I am so grateful to have the strength to do special things. I’ve seen other patients and I know how much worse it could be.
I had a CAT Scan Monday. I had to have this because the transplant team in California is unable to see the actual MRI that I had in Nevada due to a software problem. I don’t want to get double-tested every time and my insurance will eventually balk. Please pray that this can be resolved soon. I still believe that God will get me through this. I remind myself that with Christ, all things are possible. I have faith that God is in control and is with me. Please continue to pray for me. Having your prayers and support means so much. Also thanks to those of you who have been able to give to www.HelpHopeLive.com to help relieve some of the financial challenges. Every dollar counts and I know it is a sacrifice and I am honored that you are willing to do that for me. There is no pressure or expectation, just gratitude for the support, whether it be prayer or donations. I am so blessed to have all of you in my life. I’ll check in after I get the next test results. I love you!
November 16, 2014
I'm happy to be sharing some good news. Your prayers and support help make things happen.
I had an Endoscopy recently. The results were good. They saw a few things that are "normal" when you have Cirrhosis. Overall it was a very good report. Dave and I are constantly asking questions and learning more about reasons for the pain. We have great doctors who are willing to take the time.
More exciting news. Two weeks ago a new treatment was approved and released to cure Hepatitis C. The drug is called Harvoni. I need to be cured before I get the transplant so the new liver won't catch it. The cure rate is 95-99%. The side effects are minimal. Some have headaches and fatigue and I already have that. I will take one pill daily for 24 weeks. I hope to start it in four weeks. We have to work on getting the insurance to cover it first. The doctor thinks they will cover it since I've had cancer among other things. It won't take away the damage I already have, but I shouldn't get additional damage. Please pray that the insurance company will come through soon. Praise God for all he has done for me so far! I don't know how people make who don't have Him in their lives.
Again, thank you for your prayers and support. It means so much!
November 12, 2014
On October 29, 2014 my oncologist advised me that the TACE procedure worked. There is no sign of any tumors on my liver. Thank you so much for your prayers. I am so relieved! I will have an MRI every three months until I receive my transplant. When the tumors are caught early, there are two different procedures that have worked to destroy them. I'm so grateful. Your prayers and support keep me going. I'm so blessed to have such wonderful friends and family! Thank you, thank you, thank you! I'll keep you posted!
October 17, 2014
Just a quick health update-- I've had three good days in a row so I'm excited about that! In August I had an MRI that was taken at Loma Linda Transplant Institute. The MRI showed a suspicious shadow on my liver. My oncologist confirmed that it is a small tumor. He thought that when I got the Radio Frequency Ablation that a small part of it might have been left behind. All it takes is a blood vessel to attach to it and it grows. This time they used a procedure called TACE. The radiologists went in through the artery in the groin and ran a tube to the tumor on my liver. He deposited tiny chemo beads which are suppose to block the blood supply to the tumor, therefore killing it. I will get another MRI in a couple of weeks to find out if it was effective. I've been weary from all the testing and procedures, but I finally was able to turn that burden over to God and dismiss my pity party. I do believe that Pity Parties are necessary sometimes as long as they don't take over my life. So overall, I'm doing well and am getting some things done for a change. My fatigue isn't as bad so I am using my time well while I have it. Thank you for your love and support! I'll let you know the MRI results soon! Still need your prayers! Love to all! I am so blessed!
