You learn to take the good with the bad. I guess trying to stunt the growth of the optic nerve tumor and make my vision better caused more problems than I had anticipated, not only with my eye but throughout other areas of my body. The snowball occurrence began with my high-dose steroid use back in mid-April. It caused my kidney function to deteriorate dramatically and my creatinine to rise from 1.2 to 2.4, causing water retention and increased blood pressure.
As I decreased my steroid dosage from 80 mg to the present 15 mg, my vision has only worsened, and is worse than it was prior to the start of the drug use. My best vision was when I was on 30-40 mg of Prednisone per day. That dose is too high to take every day as it comes with many side effects, e.g. brittle bones, shakiness, inability to sleep and concentrate, diabetes, weight gain, muscle atrophy, easy bruising -- and every side effect it causes, I have, and I'm now taking oral diabetic medication.
After starting the drug, my muscles that support my uterus and pelvic organs atrophied, which caused there to be a pressure and less blood flow to my left leg, which caused a blood clot behind my left knee. I have a complete popliteal clot and I tried and failed using blood thinners because I have a blood clotting disorder, so I've been told I will probably have this clot forever and to try to remain active. If it ever should break apart, at least I have a vein filter to catch it that was installed in Maui. My leg will be swollen for the rest of my life and it will only get worse. I'll wear special stockings in the winter (too hot in the summer) to help the blood flow so the swelling doesn't get worse.
The drug used to treat the blood clot (injectable blood thinners) caused me to hemorrhage abdominally in Hawaii. Unfortunately, I am in a worse place because I was told I'll need a complete hysterectomy and ligament/bladder repair. I have a very severe prolapsed bladder and uterus that worsened with this course of steroids and requires lifting my ligaments, putting in a sling, and lifting the bladder so it will empty normally. The prolapse started after my brain stem surgery in 2009 and is now grade 4, which is as bad as it gets. My organs literally hang out of my body by about four inches, which has required me to frequent uro-gyne doctors since returning from Hawaii.
In addition, I've been to my internist three times in hopes that my blood pressure and lab work for kidney function, hemoglobin, and creatinine will improve. He thinks my blood pressure will improve as I get off the steroid because I'll be retaining less fluid.
I last saw my eye doctor about two weeks ago and he told me that he sees nothing different when he looks into my eye, but when I read the eye chart, I am not able to read two lines that I could read the last time. There might be slight changes going on in my eye that he is unable to see, but I can tell there's a change. My vision has gotten darker and more blurry, with less color and more shades of gray, although it improves somewhat through the day. I'm getting headaches all the time because my vision is changing all the time, which is aggravating. My next appointment is in another 2-3 weeks. Nobody has any ideas as to what I should do. Back to the drawing board. But, oddly enough, I noticed my vision improved when I was in higher altitudes. The day I flew to Hawaii and the day I flew home, my vision was the best it's been. Perhaps I should become a flight attendant or move to the mountains.
Until my hemoglobin returns to normal and my body goes back to baseline, the surgeon will not do the hysterectomy or any gyne surgery as she feels I'm too high of a risk. So I'm waiting for my body to get back to normal. In the meantime, I'm focusing on getting to see the guru eye doctor in Michigan and another in Philadelphia.
Also, I continue to say my prayers and have been blessed by several different healers. This past Monday I went to see a man named Father Peter Mary Rookey. The 95-year-old Priest was blinded at the age of 8. His family and parents prayed the rosary for several years daily, and one day he woke up and had the gift of sight returned. He had lost his vision as a result of a firecracker blowing up and damaging his eyes and face. From a doctor's perspective, he should not be able to see. To this day, he can read fine print (e.g. the phonebook) without the use of any reading glasses or aid. Once his vision was restored, he gained the gift of healing and has healed many people, even the blind. Lori Pritchett and I saw him this past Monday and received his blessing on our oils, candles, books, religious medals and miracle prayer, and had a semi-private three-hour visit with him. I feel blessed to have met someone so holy as he, and can only pray that I receive his healing.
I hope you're all enjoying your summer and trying to stay cool. Only 24 days until school...
Sunday, July 29, 2012
Maui-velous!
Had a great nine days in Maui. We stayed in a place called Kehei, which is about 20 miles south of Kaanapali and/or Lahaina. We had two condos somewhat adjoining that each slept eight and were very spacious and nice, and included all the amenities of home. My brother, sister and I bonded throughout the trip and we became closer than we ever thought possible. It was also a wonderful opportunity for me to get closer to my nieces and nephews and my brother- and sister-in-law. We all got along great.
We went to a different beach every day. Everyone tried snorkeling. We saw coral reefs, eels, turtles, and even little Nemo. During our stay, we never saw a whale or dolphin, but we ran across turtles daily. Jeff and Robin actually got to hang onto a ginormous turtle's four-foot body and went for a ride on the ocean. The current was so strong. The beaches and mountainous areas are beautiful and the flowers are the brightest colors you've ever seen. Why do we live in the middle of the country?? We enjoyed many steak dinners and Malibu Rum and pineapple juice to boot.
All was going well until day five, when I felt a ripping or pulled muscle near my left old kidney incision. I thought it was nothing but it was causing a lot of pain. Additionally, I was trying to remain very active throughout the trip so that my blood clot would remain under control, and continued with the blood thinner injection twice a day. On Friday we noticed a slight bruising where I first felt the pull, but decided to go to the beach and look at it later. After we got home, my whole left side of my abdomen was now purple so we showered and set off to Maui Memorial. It was a small, 192-bed hospital set at the base of a mountain, whereupon I was admitted with complaints of shortness of breath, worse pain, and to further evaluate the bruise. I had a hemoglobin of 13 prior to my trip, and once I was admitted it went down to 8.7 before it was stabilized. Basically I was internally bleeding and on admission the hematoma was 12" x 9" in size. In order to stop the bleeding, they wrapped me like a mummy with ace wraps, which caused further shortness of breath and more pain, and they gave me some crazy pain medications that made me very loopy.
They found the reason for the hematoma was the blood thinner dose was too strong with my kidney function being so poor, in addition to my clotting disorder. They also mentioned I could not return home from Maui without having a filter surgically installed in my vein so that if the clot were to break down, I would not throw a pulmonary embolism (clot to the lung). Needless to say, I promptly went to surgery and spent 36-hours of my nine-day trip to Maui in the hospital. Sadly enough, my brother and sister lost 36-hours of their trip as well because they would not leave my bedside. Many thanks again, Robin and Jeff.
I was given some strict discharge instructions, yet I was on vacation and decided not to follow most of them after the first day or two. It was time to enjoy the trip again so we continued our adventures and on our last day had yet another brush with death. We had gone to Hana to their national park and did a four-hour, four-mile hike through uneven, rocky, muddy, volcanic stepping-stone terrain. At almost mid-point we came upon a banyan tree and then we went through a tropical rainforest made of bamboo trees. The bamboo was so dense that you could barely see through to the sky. It was really dark and so cool. We hiked through that for at least a mile with occasional openings and waterfalls. At the end of the rainforest, we crossed high-current streams that led to the ocean, which were again rocky and hard to navigate, to our final destination -- a beautiful 480' waterfall. Unfortunately, none of us read the danger sign as we all proceeded to take photos as close as we could get to the waterfall. The sign, about 100' prior, warned all hikers that avalanches may occur, causing death. And, believe it or not, after about 20 minutes of enjoying the sights, we heard the loudest thunder-like sound we've ever heard. We looked up and saw large volcanic rocks falling down the mountainside. My sister started yelling, "We're all going to die!" and my brother yelled, "Avalanche!" and all the hikers (about 30 of us) ran in different directions. Needless to say, I'll have some scars to remember that day as we all were falling as we raced to safety. I'm still getting my photos in order and will put them in my Facebook file called Hawaii.
In addition to all our adventures, my brother Jeff renewed his marital vows in a private Hawaiian ceremony. It was so beautiful. I was happy to attend this as I missed his real wedding.
We also attended a luau and visited the typical tourist places in Lahaina: banyan trees and Cheeseburgers in Paradise. It's been a long 22 years since my honeymoon when I first went to Maui and hopefully I won't have to wait so long before going back again. I did end up buying their Kona coffee. It's $18 for 7 oz. bag but it's so good. I'm trying to savor that purchase by enjoying a cup every few days. The biggest regret I have is that I didn't pursue taking my kids with me because I feel they missed such a wonderful experience, not only as a vacation but as a time to bond with their family.
We went to a different beach every day. Everyone tried snorkeling. We saw coral reefs, eels, turtles, and even little Nemo. During our stay, we never saw a whale or dolphin, but we ran across turtles daily. Jeff and Robin actually got to hang onto a ginormous turtle's four-foot body and went for a ride on the ocean. The current was so strong. The beaches and mountainous areas are beautiful and the flowers are the brightest colors you've ever seen. Why do we live in the middle of the country?? We enjoyed many steak dinners and Malibu Rum and pineapple juice to boot.
All was going well until day five, when I felt a ripping or pulled muscle near my left old kidney incision. I thought it was nothing but it was causing a lot of pain. Additionally, I was trying to remain very active throughout the trip so that my blood clot would remain under control, and continued with the blood thinner injection twice a day. On Friday we noticed a slight bruising where I first felt the pull, but decided to go to the beach and look at it later. After we got home, my whole left side of my abdomen was now purple so we showered and set off to Maui Memorial. It was a small, 192-bed hospital set at the base of a mountain, whereupon I was admitted with complaints of shortness of breath, worse pain, and to further evaluate the bruise. I had a hemoglobin of 13 prior to my trip, and once I was admitted it went down to 8.7 before it was stabilized. Basically I was internally bleeding and on admission the hematoma was 12" x 9" in size. In order to stop the bleeding, they wrapped me like a mummy with ace wraps, which caused further shortness of breath and more pain, and they gave me some crazy pain medications that made me very loopy.
They found the reason for the hematoma was the blood thinner dose was too strong with my kidney function being so poor, in addition to my clotting disorder. They also mentioned I could not return home from Maui without having a filter surgically installed in my vein so that if the clot were to break down, I would not throw a pulmonary embolism (clot to the lung). Needless to say, I promptly went to surgery and spent 36-hours of my nine-day trip to Maui in the hospital. Sadly enough, my brother and sister lost 36-hours of their trip as well because they would not leave my bedside. Many thanks again, Robin and Jeff.
I was given some strict discharge instructions, yet I was on vacation and decided not to follow most of them after the first day or two. It was time to enjoy the trip again so we continued our adventures and on our last day had yet another brush with death. We had gone to Hana to their national park and did a four-hour, four-mile hike through uneven, rocky, muddy, volcanic stepping-stone terrain. At almost mid-point we came upon a banyan tree and then we went through a tropical rainforest made of bamboo trees. The bamboo was so dense that you could barely see through to the sky. It was really dark and so cool. We hiked through that for at least a mile with occasional openings and waterfalls. At the end of the rainforest, we crossed high-current streams that led to the ocean, which were again rocky and hard to navigate, to our final destination -- a beautiful 480' waterfall. Unfortunately, none of us read the danger sign as we all proceeded to take photos as close as we could get to the waterfall. The sign, about 100' prior, warned all hikers that avalanches may occur, causing death. And, believe it or not, after about 20 minutes of enjoying the sights, we heard the loudest thunder-like sound we've ever heard. We looked up and saw large volcanic rocks falling down the mountainside. My sister started yelling, "We're all going to die!" and my brother yelled, "Avalanche!" and all the hikers (about 30 of us) ran in different directions. Needless to say, I'll have some scars to remember that day as we all were falling as we raced to safety. I'm still getting my photos in order and will put them in my Facebook file called Hawaii.
In addition to all our adventures, my brother Jeff renewed his marital vows in a private Hawaiian ceremony. It was so beautiful. I was happy to attend this as I missed his real wedding.
We also attended a luau and visited the typical tourist places in Lahaina: banyan trees and Cheeseburgers in Paradise. It's been a long 22 years since my honeymoon when I first went to Maui and hopefully I won't have to wait so long before going back again. I did end up buying their Kona coffee. It's $18 for 7 oz. bag but it's so good. I'm trying to savor that purchase by enjoying a cup every few days. The biggest regret I have is that I didn't pursue taking my kids with me because I feel they missed such a wonderful experience, not only as a vacation but as a time to bond with their family.
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