February 7, 2013
I just checked my website and noted that I had not written to you since the 17th of August. That was just after being released from the hospital for treatment of a severe blood infection. I returned to the hospital on August 20th for surgery to remove a growth from my right arm and had to remain in the hospital until the 22nd. Fortunately, the surgery was a success, and it was not a skin cancer.
I went for my clinic visit on September 3rd, and the Picc line in my arm would not draw blood. I had to return to radiology on the 4th to have the Picc line changed. I was taken to pre-op and waited and waited. Finally after a 3 hour wait, they started what was to be a 20 minute procedure. They could not use the same vein and had to remove the whole line. They accessed a larger vein, but placing the line was very painful as there was a narrowing of the vein. The doctor inflated the vein and inserted a new Picc line. The inflation of a vein was very painful, especially when la la land was not a part of it. The procedure took 1 ½ hours. Fortunately, the new line worked fine.
It was back to the clinic on September 4th as the fevers returned, the white count elevated, and I felt bad. I was placed back on an antibiotic IV, and we waited for the blood culture results. The doctors were of the opinion that the ports and Picc lines were the cause of all the infections. On September 26th, we agreed that the Picc line needed to be removed. This procedure was the easiest thing that I have ever had to endure. Dr. Toor removed the bandage and just pulled it out of my arm. So I was officially"deported" after having some type of port for the past 12 years.
October was basically uneventful as I spent the month trying to regain my strength from the many months of infections. Then on November 1st, I grabbed another bug and was on oral antibiotic for three weeks. The first thought was that I had "the 100 day cough". I looked that up, and it is another name for "whooping cough". Fortunately the test results did not indicate that, I had an URI (Upper Respiratory Infection).
One more medical issue surfaced in January. My eyes had been itchy and irritated again. I went to Dr. Iuorno, and after all that eye surgery of a year ago, I was again growing eyelashes on the lower lids. He pulled more. I asked him to check the plugs in my lower lids, and…………they were both gone. Rather than replacing the plugs, he suggested cauterizing the lower tear duct drains. I had this procedure done on January 24th. Hopefully, this will help correct the dry eye problems as I had been putting eye drops in my eyes every 20 minutes during the day. I did my research as I wondered where the drops were going. I found that they drain into the sinus cavity. I solved the question of why I had a drippy nose. For the last several months, the doctors had said it was probably allergies. Ha!
I am now really working on getting stronger. I am going to the fitness room a couple of times each week and riding the exercise bike. My goal is to get strong enough to take part in the Be the Match Run+Walk on June 1 in Richmond.
In October, my sisters came for a sister's visit. We had an enjoyable, relaxing time. I really missed them when they left to return home (one to Michigan and one to Florida).
I finally became healthy enough to have family visits in December. Kim and Tyler were here for 4 days at Christmas. Scott and Kyle flew in from California on December 28th and left on January 4th. We had a wonderful time with all of them. This month Kelli and Cameron are coming to visit for a couple of days. I treasure all these family visits. We try to plan something special for the grandsons while they are here. In December, the Uptown Alley opened just a very short distance from our home. It is an upscale entertainment center with bowling alleys and a big game room. The boys seem to enjoy the game room.
I just know that 2013 is going to be a good year. I will be celebrating my 10th transplant rebirthday on March 15th. It will be a year of improved health. I do think often about my other MDS transplant friends and the journeys they are taking. Everyone deserves a chance at life. I think that this is more than enough news from here. I will be thinking about you and will write again soon.
March 28th, 2013
A special request.
I need your help! I am participating in Be The One Run to raise awareness and funds to help patients in need of a marrow transplant. I am a stem cell transplant survivor of 10 years. My sister was my cell donor.I am walking for patients in need of marrow transplants, and also for my "angel" grandson. He lost his battle against cancer on Mother's Day 2009. It had always been my plan to walk a survivor's walk with him, but that did not happen. I am walking for Matthew, and he is always in my heart.
And YOU can help!
Every four minutes someone is diagnosed with blood cancer. Often their only hope for a cure is a marrow transplant. Your contribution to the Be The Match Walk+Run will help provide that cure by helping add new potential marrow donors to the registry, helping patients struggling with uninsured costs and funding research.
I'm helping blood cancer patients take the next step towards a life-saving marrow transplant by taking a few of my own, and I hope I can count on your support. Thank you for being someone's cure.
Please help me reach my fundraising goal. Make your tax-deductible contribution today!
December 9, 2013
I really do not know where to start this letter. I am sure this will be a long letter as so much has happened in the last 10 months. Family visits, moving, and medical issues have kept us busy. When there is a medical issue, I prefer to wait to write about it after there is a plan.
In mid-February, Kelli and Cameron flew from Georgia to Virginia. They were here to help Ross celebrate his birthday. In March, I turned 73 in birth years and 10 in transplant years.
In June we moved from our apartment to a newer apartment (sister complex about 2 blocks away). We are now in the three-bedroom apartment. Our view from the patio is beautiful. There is a hill that slopes down to the woods. We have seen rabbits and beaver. We have seen the neighbor's pictures of deer. We have bird feeders, and there are many, many birds. Some days, I think that Ross needs to check and see if everyone else has evacuated the complex as it is so quiet. From our apartment, we do not see the roads or the parking areas, just nature. The third bedroom is my combination craft room and guest bedroom. We also have an electric fireplace in the living room. Fortunately, our new living room furniture is a perfect fit for the room.
Everything is power reclining (2 chairs and the sofa). Total comfort.
Kim and Tyler came to help us unpack and have been to visit several times. Kelli and her family were here for Thanksgiving (Tuesday - Saturday). Kim and Tyler will be here for about four days at Christmas. With Kyle's school and Scott's work schedule, they will be back for a visit in June. All these visits involve grandpa taking the boys to Uptown Alley for the big game room. Grandma gives them $40.00 to have fun. They earn points when playing the games and spend the points in the gift shop. While they are gone, I recline in my chair and vegetate.
Now for the medical.where to begin! It has been wonderful not having a port to harbor infections. The only fever that I have had in the last 13 months was a little over a week ago. I had a cold and a low-grade fever. I just rested and drank plenty of fluids.
One medical issue continues, but I don't normally discuss it. This is the reason for not updating this page. I always want everything to be positive, not doom and gloom. Once there is a plan, and I am comfortable with the plan I will share. I have been having issues with the kidneys for a couple of years. The decreased function has also included very high phosphorus levels. My nephrologist did not make me feel confident as his response was that when the time came, he would have a plan. I am a stubborn, determined person that must be part of the plan. I do my research and know what I am dealing with. I decided that the lack of communication was not going to change, so I changed doctors. I am now going to see Dr. Daran Glenn with the Richmond Nephrology Associates. It was the best decision for me. Six months ago, my phosphorus was still too high. He also ordered a parathyroid hormone test. Normal PTH is below 65. My levels were over 650. The high levels of phosphorus caused severe itching of the skin. I did my research and changed my eating habits. I do not use dairy products, whole grain breads, brown rice, sweet potatoes, beans, nuts, chocolate or caffeine. I do not eat canned or processed foods. I sometime crave ice cream, peanut butter, Colby jack cheese, lunch meat and ham, but find alternatives. My main diet consists of foods from the outer aisles of the grocery store - fresh meats and fresh vegetables. If I eat baked foods, I find the recipes and check all the ingredients on the USDA nutritional database and then determine the amount of phosphorus in one serving. I do make a delicious carrot soufflé that reminds me of sweet potato casserole. I can also make a "mean" applesauce bread. We canned apples sauce, tomatoes, and peach jam this year. So tasty.
Back to the high phosphorus, Dr. Glenn more than doubled my Renvela (a binder to remove the excess phosphorus). Six months ago, he prescribed Calcitriol to help correct the high parathyroid hormone levels. I took it once a week. Three months ago both reading were improved, but the PTH was still over 400. Dr. Glenn changed the Calcitriol to daily. On December 5, I was retested for the PTH levels. My reading is now in the normal range at 50.4. For the first time in two years my phosphorus levels are normal and I have not itched in over 6 weeks. Now I am trying to figure out one thing I can do to cheat on my diet for Christmas. I had loved eating a fried chicken thigh from the grocery store, but not now. One day when we were in the store, I looked at some that they had packaged and put in the deli case..two types of added phosphorus. I'll stick to my Almond Breeze milk which is low in phosphorus. I make ice cream using eggbeaters and non-dairy creamer in my ice cream maker. Now I will check on which is lower in phosphorus - a piece of chocolate or Colby jack cheese.
In September, Dr. Glenn said that we needed to have a plan in the event that I moved from Stage 4 to Stage 5 which is the final stage for renal failure. He agreed that I am not a candidate for going to a dialysis center as it is three times a week and with travel time, waiting, and dialysis time, it takes about 8 hours. He knows me pretty well. I must be in control. Because of previous blood infections, using my veins or a port is not feasible. We decided that when the time comes that we will go the home dialysis route with peritoneal dialysis. With this process, I do it all myself at home. I know that I do not have to depend on others to meet my sanitation expectations as I am a do it myself person.
We did go to a training session with a nurse to receive additional information. There were three of us plus two spouses. The nurse asked me if I happened to be a doctor or a researcher. I told her that I was my own advocate. I had done my own research. I pretended that I had learned something, but I really already knew it all.
In September when my blood tests were done, my GFR (granular filtration rate) was down to 14 which is one point below the top level for final stage renal failure. One advantage for me is that I do not have fluid retention, I do not have diabetes, and I do not have high blood pressure. On October 31, the GFR was down to 13, but the phosphorus was finally normal as was the magnesium level. I was very concerned before my December appointment as naturally I was "slightly" worried about the GFR. I was so very tired. Every time I sat down, I fell asleep. I tried to hide it. On December 5, my BMT doctor said that because of the kidneys, my EPO might be low. The kidneys produce EPO that triggers the bone marrow to make healthy blood cells. He said I might need a Procrit shot. Five minutes later, my blood results came up on the screen. My hemoglobin had dropped from 10.5 to 9.4. Before going home, I had 40,000 units of Procrit. My last Procrit was in early November of 2012. It takes several weeks for it to begin working. When I go in on January 2, if the levels are below 10, I will have another shot. I am confident that I will see improvement from being tired and so very weak. Oh, and my GFR was unchanged which is good news. As long as the number remains stable, the dialysis will be delayed.
I am confident that I will have more years to enjoy life. The reason for this is that we have a plan, I am part of the plan, and I remain determined to survive. I will do this as I have wonderful doctors and nurses at the VCU Bone Marrow Clinic. I have loving and supporting family and friends. So now I have shared both the gloom and the hope for the future.
Always take life one day at a time. Accomplish at least one thing a day. Enjoy life and stay strong. I will be 74 in March, and on March 15 I will also turn 11. I have a wonderful husband, three precious children, and 4 loving grandsons. How could I ask for more?
This is my Christmas wish for you. Enjoy your family! Hug those children and grandchildren. Count your blessings as they are many.