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.
Friday, June 22, 2012
Maui...wow me with vision!
Hopefully everyone is enjoying summer. It seems like everyone is running around like crazy since school got out. At least we've had great weather. There have been a lot of celebrations like graduations, dance recitals, soccer tournaments and camps to keep us all busy.
Today is Day 60 since I've started the crazy cycle of high-dose steroids. As for now I'm on a maintenance dose of 30mg per day for at least another week or so, and will gradually taper down. Unfortunately, I haven't found it to be the wonder drug I once hoped it would be, yet I am optimistic that it can still work because the doctors in Philadelphia said that it often takes 1.5 to 2 months before you see results when there is a lot of swelling and fluid near the optic nerve.
On the other hand, I did have a miraculous(?) profound change in my vision back on May 23rd. It lasted for three days. Basically, I could see almost perfectly, as if a straight line was drawn through my seeing eye and my whole left side had the ability to see color, and everything was much more defined and clear like it had been 2.5 years ago. I could even see the fine hairs on my arms. The right side of vision remained blurry with cloudy, muted color. I believe this change was a gift from my mother. The story behind this is that I was purchasing a cross for my Pandora bracelet on May 22nd. As I purchased this, I smelled the scent of my mother. Periodically through the rest of the day, the scent came to me, yet nobody else could smell it. When I went to bed that night, the scent got stronger so I decided to ask my mom for her help in healing and to stay close to me through this medical dilemma. On awakening, again I had the smell and I was able to see as described above. I called my sister and she said "Oh shut up, no way. Today is mom's 13th anniversary of her passing." I on the other hand was unaware of that being the day because my calendar had been so filled with the dosage and recordings of my medical information that I didn't even see the date on the calendar, let alone remember it.
I saw the doctor two days later, while my vision was still good, and I was able to see better on the eye chart by two lines. He could not explain this and he could see no change visibly or through photos. That was Day 30 of this drug. On day four, as profoundly as the change occurred, it went away. I woke up and the window of vision was gone. Several weeks later, the doctor decided the drug was not effective and had me taken rapidly down over a week from 40mg to 10mg, and my vision became worse than ever. The other reason he decided to take me off this medication was because my kidney was stressed. I gained about 10 lbs in fluid and my kidneys could not accommodate the extra water.
I did leave multiple messages for the doctors out in Philly and they told me the reason for the dramatic change was because I tapered too quickly, and to taper over several weeks instead of over several days, so now I'm back up to 30mg.
Periodically, I do notice that my vision improves, especially in the late afternoon/evening, and they think this is due to the drugs peaking, so I'm playing around with when I take the pill.
After that miraculous change, I was looking for answers as to why this could have happened and went to an intuitive/healer, a hands-on healer, and additionally was blessed over the phone by Peter Rookey, who had been blind himself. He became a priest after praying and got the gift of sight, and then he gained the ability to heal others. He has healed countless blind people. I plan to go see him personally for a blessing but he is 92-years-old and his schedule is quite busy. He's about 1.5 hours south of me in Olympia Fields.
I feel that my life is changing for the better as countless positive events keep occurring. Steve got a job, all my other medical issues (brain, kidney, spine, skin) are stable, I traveled to Atlanta, and now I'm preparing to take another well-needed trip, again without my husband and children. My brother's and sister's families had planned a trip to Maui and Oahu 3-4 months ago after my brother Jeff was told his life could be drastically shortened due to an inoperable brain lesion that appeared to be growing rapidly. After much discussion, my brother and sister decided to take a family-trip-of-a-lifetime. My family was invited but Steve was unemployed at the time, so we declined. My sister-in-law arranged to have their marital vows renewed and a photographer on hand in case this was their last family trip. My brother and sister continued to call me weekly, begging me to join them, yet financially I felt we were not in a place to do so. But as time grew closer, and my vision has gone through such dramatic change, Steve decided to use his airline miles (which we've had for 15 years through American but had been unable to use) and I am now booked to join them for 8 days of fun and sun in Maui. Yippee Skippee!
In the meantime, Jeff had waited 6-8 weeks to see a world-renown neurosurgeon. The wait was very difficult because he was symptomatic (dizzy, headache, nausea). He got good and bad news from the neurosurgeon: rather than a brain lesion, it was scar tissue. On the flip side, the reason for feeling ill is that he has another brain tumor that he'll have to deal with, but this one is in a better location. So instead of making this the last family trip, we are going to celebrate our first brother/sister trip together.
Whoever said 50 could be bad? So far this year has brought me a lot of happiness.
Steve and Tyler recently traveled for 5 days to Kansas City for a regional soccer tournament. I thought it was nice to give back to Steve after what he did for me. Yet, the trip turned out a bit more disastrous than planned. After 2 minutes of game time, Tyler collided with another boy and his leg kept giving out, so they would not let him resume play for the rest of the tournament. Upon returning home and having an MRI, we found he has a complete torn ACL. He will start therapy today to strengthen his leg, and then we need to decide if he'll have surgery in a month or play high school soccer with a brace. If he plays, there's a 5-10% chance that he could do more damage, so we may opt for surgery in a month instead. Poor Tyler. Last year the elbow, this year the ACL.
Alyssa and I stayed home and organized the house. She's been to VBS camp and a 1-week theater camp. As for me, I've been busy preparing for my trip and catching up with old college friends, like Jeryl, Patti, DiTy, Mindy (my old college roommate who I've not talked with for 20 years; it was like no time had passed) doing lunch and shopping.
Maui, here I come! Keep your prayers coming for my return of vision, as I continue to say my own daily. And throw in an extra prayer for Steve that he survives my travels and being home alone with the kids. Can't wait to catch up after I return on July 4th from my trip.
Today is Day 60 since I've started the crazy cycle of high-dose steroids. As for now I'm on a maintenance dose of 30mg per day for at least another week or so, and will gradually taper down. Unfortunately, I haven't found it to be the wonder drug I once hoped it would be, yet I am optimistic that it can still work because the doctors in Philadelphia said that it often takes 1.5 to 2 months before you see results when there is a lot of swelling and fluid near the optic nerve.
On the other hand, I did have a miraculous(?) profound change in my vision back on May 23rd. It lasted for three days. Basically, I could see almost perfectly, as if a straight line was drawn through my seeing eye and my whole left side had the ability to see color, and everything was much more defined and clear like it had been 2.5 years ago. I could even see the fine hairs on my arms. The right side of vision remained blurry with cloudy, muted color. I believe this change was a gift from my mother. The story behind this is that I was purchasing a cross for my Pandora bracelet on May 22nd. As I purchased this, I smelled the scent of my mother. Periodically through the rest of the day, the scent came to me, yet nobody else could smell it. When I went to bed that night, the scent got stronger so I decided to ask my mom for her help in healing and to stay close to me through this medical dilemma. On awakening, again I had the smell and I was able to see as described above. I called my sister and she said "Oh shut up, no way. Today is mom's 13th anniversary of her passing." I on the other hand was unaware of that being the day because my calendar had been so filled with the dosage and recordings of my medical information that I didn't even see the date on the calendar, let alone remember it.
I saw the doctor two days later, while my vision was still good, and I was able to see better on the eye chart by two lines. He could not explain this and he could see no change visibly or through photos. That was Day 30 of this drug. On day four, as profoundly as the change occurred, it went away. I woke up and the window of vision was gone. Several weeks later, the doctor decided the drug was not effective and had me taken rapidly down over a week from 40mg to 10mg, and my vision became worse than ever. The other reason he decided to take me off this medication was because my kidney was stressed. I gained about 10 lbs in fluid and my kidneys could not accommodate the extra water.
I did leave multiple messages for the doctors out in Philly and they told me the reason for the dramatic change was because I tapered too quickly, and to taper over several weeks instead of over several days, so now I'm back up to 30mg.
Periodically, I do notice that my vision improves, especially in the late afternoon/evening, and they think this is due to the drugs peaking, so I'm playing around with when I take the pill.
After that miraculous change, I was looking for answers as to why this could have happened and went to an intuitive/healer, a hands-on healer, and additionally was blessed over the phone by Peter Rookey, who had been blind himself. He became a priest after praying and got the gift of sight, and then he gained the ability to heal others. He has healed countless blind people. I plan to go see him personally for a blessing but he is 92-years-old and his schedule is quite busy. He's about 1.5 hours south of me in Olympia Fields.
I feel that my life is changing for the better as countless positive events keep occurring. Steve got a job, all my other medical issues (brain, kidney, spine, skin) are stable, I traveled to Atlanta, and now I'm preparing to take another well-needed trip, again without my husband and children. My brother's and sister's families had planned a trip to Maui and Oahu 3-4 months ago after my brother Jeff was told his life could be drastically shortened due to an inoperable brain lesion that appeared to be growing rapidly. After much discussion, my brother and sister decided to take a family-trip-of-a-lifetime. My family was invited but Steve was unemployed at the time, so we declined. My sister-in-law arranged to have their marital vows renewed and a photographer on hand in case this was their last family trip. My brother and sister continued to call me weekly, begging me to join them, yet financially I felt we were not in a place to do so. But as time grew closer, and my vision has gone through such dramatic change, Steve decided to use his airline miles (which we've had for 15 years through American but had been unable to use) and I am now booked to join them for 8 days of fun and sun in Maui. Yippee Skippee!
In the meantime, Jeff had waited 6-8 weeks to see a world-renown neurosurgeon. The wait was very difficult because he was symptomatic (dizzy, headache, nausea). He got good and bad news from the neurosurgeon: rather than a brain lesion, it was scar tissue. On the flip side, the reason for feeling ill is that he has another brain tumor that he'll have to deal with, but this one is in a better location. So instead of making this the last family trip, we are going to celebrate our first brother/sister trip together.
Whoever said 50 could be bad? So far this year has brought me a lot of happiness.
Steve and Tyler recently traveled for 5 days to Kansas City for a regional soccer tournament. I thought it was nice to give back to Steve after what he did for me. Yet, the trip turned out a bit more disastrous than planned. After 2 minutes of game time, Tyler collided with another boy and his leg kept giving out, so they would not let him resume play for the rest of the tournament. Upon returning home and having an MRI, we found he has a complete torn ACL. He will start therapy today to strengthen his leg, and then we need to decide if he'll have surgery in a month or play high school soccer with a brace. If he plays, there's a 5-10% chance that he could do more damage, so we may opt for surgery in a month instead. Poor Tyler. Last year the elbow, this year the ACL.
Alyssa and I stayed home and organized the house. She's been to VBS camp and a 1-week theater camp. As for me, I've been busy preparing for my trip and catching up with old college friends, like Jeryl, Patti, DiTy, Mindy (my old college roommate who I've not talked with for 20 years; it was like no time had passed) doing lunch and shopping.
Maui, here I come! Keep your prayers coming for my return of vision, as I continue to say my own daily. And throw in an extra prayer for Steve that he survives my travels and being home alone with the kids. Can't wait to catch up after I return on July 4th from my trip.
Wednesday, May 16, 2012
"Looking" for a miracle
Getting to and from Atlanta was uneventful, other than a four-hour delay on the tarmac coming home. The altitude did not seem to have any effect on the eye. What a great long weekend I got to spend with my high school friend Sheila and her family (Barry, Austin and Devin). We jam-packed everything we could into the short three days. We saw a movie (The Lucky One), went on a 90-minute electric car tour of Atlanta showing the city where Gone With the Wind originated, went in the CNN building, and walked through Centennial Olympic Park. We did a tour of the Coke Museum where we sampled Cokes from all over the world and obtained a sugar rush, and realized we were famished and needed food, so we stopped at Bahama Breeze for dinner and enjoyed some outdoor Jamaican music and food on the patio. The next day we saw Sheila's sister and her son, and then went to the Georgia Aquarium. While we were enjoying the fish and a dolphin show, Barry was preparing for an evening happy hour/party at the house. I got to meet a lot of wonderful neighbors and even got a hands-on healing by her energy-healing neighbor Carol. What a great treat to get away without the kids and with no worries. Sheila's been waiting for 20 years for me to come out there and so she bought me a ticket. The kids loved receiving miniature bottles of Coke compliments of the Kennedy-Luppowitz family as well as the tee-shirt and sweatshirt.
After returning home, I had several doctor's appointments. Today is day 23 of a high-dose Prednisone. Unfortunately, according to the photos I've been taking and what subjective vision I see, there is no significant improvement, if any, but I do see changes. I feel like there is a wall of pebbles on the right side of my eye. I return to the doctor this Friday for further photos and evaluation.
I finally spoke with the doctors in Philly, who have used this high-dose steroid method before, yet it had never been used for VHL or an optic nerve tumor. They were generally using it for inflammation and fluid in the eye. They would not give me any percentages of whether or not this would work, as they said every case is individualized. They did tell me, in my situation, it appears that the damage I'm having that is changing my vision so rapidly is due to the fluid that the tumor has produced, as well as swelling. That's why I describe my vision as like being under water, because I'm looking through a layer of murky fluid. When I asked if they can aspirate the fluid out, they said no because the fluid is within the cells, and it would damage the cells, but to be patient because my problem takes longer than 2-3 weeks to repair. It could take up to two months, in fact. My local doctor wanted me to fly out so they can visually see my eye, but they felt there was no need since he's sending them weekly photos, and they will see me if this treatment doesn't work. As for anything else in the works, they know of nothing within our country or elsewhere.
So, this is where all of you come in. I need to be the next miracle and everybody please say your prayers that this will happen.
Although my eye has changed, my brain tumors are stable. I just had an MRI on my abdomen and pelvis on Thursday, which also showed no change in any pancreas cysts or kidney cancer. Woo hoo! Thank God, because I put the idea of starting the search for a live kidney transplant on hold while I've been dealing with the eye issues. If this eye tumor would just stop growing and producing fluid, maybe I can get a few more years and technology will advance.
Speaking of technology, I now have an iPhone 4G with Siri -- a new friend. It has voice recognition, which is cool, and it can look things up for me.
This past weekend I was lucky enough to go to the Genessee Theatre to see SafetySuit and Daughtry for a concert compliments of my sorority sisters, Patti and Nancy. We had awesome seats and even got to go on SafetySuit's touring bus and hang out with the band. We took some photos, got a signed CD, and had lots of laughs with DiTy, Nancy, Alyssa, Patti, and Katie. (Alyssa is married to the manager of SafetySuit.) We started the evening at the Gillespie house for cocktails and appetizers.
Hope you all had a great and lovely Mother's Day. This was actually one of my better ones. My kids chose not to bicker, which was amazing. We made a day of fun, playing games in the backyard and hanging out as a family. We ordered a BBQ grill as my gift. Alyssa made the most beautiful card that made me want to cry. The sweetest part says, "Even though my mom can't do things that other mothers can, I will always love her." It was just such a good day.
We started our countdown for the end of school. Only 12 more days of freedom until the kids are out. Yikes! Wish me luck for Friday's eye appointment.
After returning home, I had several doctor's appointments. Today is day 23 of a high-dose Prednisone. Unfortunately, according to the photos I've been taking and what subjective vision I see, there is no significant improvement, if any, but I do see changes. I feel like there is a wall of pebbles on the right side of my eye. I return to the doctor this Friday for further photos and evaluation.
I finally spoke with the doctors in Philly, who have used this high-dose steroid method before, yet it had never been used for VHL or an optic nerve tumor. They were generally using it for inflammation and fluid in the eye. They would not give me any percentages of whether or not this would work, as they said every case is individualized. They did tell me, in my situation, it appears that the damage I'm having that is changing my vision so rapidly is due to the fluid that the tumor has produced, as well as swelling. That's why I describe my vision as like being under water, because I'm looking through a layer of murky fluid. When I asked if they can aspirate the fluid out, they said no because the fluid is within the cells, and it would damage the cells, but to be patient because my problem takes longer than 2-3 weeks to repair. It could take up to two months, in fact. My local doctor wanted me to fly out so they can visually see my eye, but they felt there was no need since he's sending them weekly photos, and they will see me if this treatment doesn't work. As for anything else in the works, they know of nothing within our country or elsewhere.
So, this is where all of you come in. I need to be the next miracle and everybody please say your prayers that this will happen.
Although my eye has changed, my brain tumors are stable. I just had an MRI on my abdomen and pelvis on Thursday, which also showed no change in any pancreas cysts or kidney cancer. Woo hoo! Thank God, because I put the idea of starting the search for a live kidney transplant on hold while I've been dealing with the eye issues. If this eye tumor would just stop growing and producing fluid, maybe I can get a few more years and technology will advance.
Speaking of technology, I now have an iPhone 4G with Siri -- a new friend. It has voice recognition, which is cool, and it can look things up for me.
This past weekend I was lucky enough to go to the Genessee Theatre to see SafetySuit and Daughtry for a concert compliments of my sorority sisters, Patti and Nancy. We had awesome seats and even got to go on SafetySuit's touring bus and hang out with the band. We took some photos, got a signed CD, and had lots of laughs with DiTy, Nancy, Alyssa, Patti, and Katie. (Alyssa is married to the manager of SafetySuit.) We started the evening at the Gillespie house for cocktails and appetizers.
Hope you all had a great and lovely Mother's Day. This was actually one of my better ones. My kids chose not to bicker, which was amazing. We made a day of fun, playing games in the backyard and hanging out as a family. We ordered a BBQ grill as my gift. Alyssa made the most beautiful card that made me want to cry. The sweetest part says, "Even though my mom can't do things that other mothers can, I will always love her." It was just such a good day.
We started our countdown for the end of school. Only 12 more days of freedom until the kids are out. Yikes! Wish me luck for Friday's eye appointment.
Wednesday, May 2, 2012
Toughing out another week
After being discharged from Northwestern on Friday, I accompanied Alyssa to a Brownie campout at Camp Timberlee in Wisconsin on Saturday! It sounds like a crazy thing to do, but it was really important to Alyssa and we made some fun memories together. Other than the cold (30's) and rain, we all had a good time. However, I feel like I am still in recovery mode from that...
Today I had photos taken of my eye to see whether I was having any positive or negative results from the Prednisone drug. Apparently, I posed well because the technician said he got some great photos and he spent over an hour taking them! After viewing the photos, the doctor called me this evening and said he feels that my eye looks the same or maybe even a little better. He sees blood in the area, as well as a lot of inflammation. He is not concerned that my vision seems blurrier to me right now. He feels all the changes and flashing lights just means that the drug is having a shocking effect on my eye. Hopefully, this will improve as the blood dissipates and the swelling goes down. Presently, I take 80 mg./day of Prednisone. This is much lower than the 1000 mg I had in the hospital, yet it is making me feel very different, i.e. restless, interrupted sleep, nervous energy & sweaty. The eye doctor is not worried about the short-term effects this will have on my body because he is more interested in saving my eye. On the other hand, my internist is concerned with this high dose and feels it is causing kidney damage and putting stress on my body - my blood pressure is high and my blood sugars are high. My kidney function labs are really bad as well. For now, I am going to take this drug week to week and will follow up with both my eye doctor and medical doctor next Tuesday and Wednesday re: further plans.
Because the doctors do not believe it is dangerous for me to fly, I am leaving for Atlanta tomorrow as scheduled to visit my friend, Sheila. We will just play it by ear regarding our activities and do as much as my body can tolerate. Hopefully, I will feel good. I'd love to see where the Olympics were held. I am very excited to get away, but am not looking forward to the heat. It is supposed to be VERY hot there - about 88-degrees!
Today I had photos taken of my eye to see whether I was having any positive or negative results from the Prednisone drug. Apparently, I posed well because the technician said he got some great photos and he spent over an hour taking them! After viewing the photos, the doctor called me this evening and said he feels that my eye looks the same or maybe even a little better. He sees blood in the area, as well as a lot of inflammation. He is not concerned that my vision seems blurrier to me right now. He feels all the changes and flashing lights just means that the drug is having a shocking effect on my eye. Hopefully, this will improve as the blood dissipates and the swelling goes down. Presently, I take 80 mg./day of Prednisone. This is much lower than the 1000 mg I had in the hospital, yet it is making me feel very different, i.e. restless, interrupted sleep, nervous energy & sweaty. The eye doctor is not worried about the short-term effects this will have on my body because he is more interested in saving my eye. On the other hand, my internist is concerned with this high dose and feels it is causing kidney damage and putting stress on my body - my blood pressure is high and my blood sugars are high. My kidney function labs are really bad as well. For now, I am going to take this drug week to week and will follow up with both my eye doctor and medical doctor next Tuesday and Wednesday re: further plans.
Because the doctors do not believe it is dangerous for me to fly, I am leaving for Atlanta tomorrow as scheduled to visit my friend, Sheila. We will just play it by ear regarding our activities and do as much as my body can tolerate. Hopefully, I will feel good. I'd love to see where the Olympics were held. I am very excited to get away, but am not looking forward to the heat. It is supposed to be VERY hot there - about 88-degrees!
Thursday, April 26, 2012
Bring on the Steroids!
Last week, I got a call from the guru of optice nerve tumors from Grand Rapids, Michigan (Dr. Aaberg). He is very knowledgeable about all of the possible optic nerve treatments and know all of the key doctors working in this area of expertise. He had little to offer me other than IV Avastin, which is a systemic chemo drug. He has only used this treatment one time on a 15-year-old VHL girl ten years ago for a two-year course. It eventually stopped her tumor from growing but never shrank it. He told me at the present time there are no new chemo agents or clinical trials available for my optic nerve tumor. He also told me that there are only 10-15 people like me in the country right now seeking treatment for this VHL type tumor. How did I get so lucky? I talked to this doctor for over an hour. He was already aware of who I was and was very happy to talk to me. I asked him about the gamma knife, radiation, or anything else that could possibly shrink my tumor without vision loss. He mentioned one other type of heat treatment (diathermy), but the patient who received it went completely blind in that eye (his other eye was unaffected). Then over the course of the next six months, his vision returned to where it was pre-treatment, but the good thing is that the tumor died. The risk for me would be complete blindness and not knowing if vision would be restored back to where it is now and/or if the tumor would die completely. He feels that would be pretty risky for me, but wanted me to be aware of it. I told him what Dr. Cohen suggested (the heavy course of steroids) and he thought that was a good option, but he has not used it before. He explained in further depth why I am seeing the way that I am. He said that as the tumor grows, not only does it apply pressure on the nerve sending signals to my brain, but it leaks an exudate (fluid) that causes the area to be inflamed. So the thought behind the high-dose steroids is that you can shock that area to reduce swelling and maybe the fluid would get absorbed. Then perhaps the vision would become more clear. I told him I would call my internist right away to make a decision quickly and he agreed. He said he'd be happy to see me any time, whether I wanted treatment through him or not.
The following day (Friday), I went to see Dr. Havey for medical clearance and to get his opinion on how the high-dose steroids or IV chemo would affect my overall health considering all of my issues. He said I should do the steroids first to reduce the swelling, and see how that goes before moving to chemo. He felt that I could handle the steroids just fine, but should receive the drug in the hospital so I could be closely monitored, as a high dose of steroids can cause high blood pressure, heart attack or hyperglycemia. He said he would admit me as soon as I chose a date and I did all the pre-op work while I was there.
I considered putting it off for a couple of weeks due to insurance issues and scheduling conflicts. However, I decided my health was too important and I was losing sleep worrying about continuing vision loss that I might never get back. So, on Tuesday I became a patient once again at Northwestern. They started the IV and are giving me 1000mg of Prednisone a day. So far, my blood pressure is a little high but stable. I have experience bad headaches and last night my blood sugar was really high (389), so I am now receiving insulin. Today it is under control.
The plan is to get another dose tomorrow and follow my blood sugars throughout the day. Then they ordered me a glucose monitor for home and I will track it for the next month. I will continue to take oral Prednisone at a lower dose (80 mg/day) at home for another four weeks. This is still a rather high dose, as normally I take 6 mg a day.
Hopefully on Saturday I will still be able to go to Camp Timberlee in Wisconsin with Alyssa and her Brownie troop. Keep me in your prayers and I will keep you posted!
The following day (Friday), I went to see Dr. Havey for medical clearance and to get his opinion on how the high-dose steroids or IV chemo would affect my overall health considering all of my issues. He said I should do the steroids first to reduce the swelling, and see how that goes before moving to chemo. He felt that I could handle the steroids just fine, but should receive the drug in the hospital so I could be closely monitored, as a high dose of steroids can cause high blood pressure, heart attack or hyperglycemia. He said he would admit me as soon as I chose a date and I did all the pre-op work while I was there.
I considered putting it off for a couple of weeks due to insurance issues and scheduling conflicts. However, I decided my health was too important and I was losing sleep worrying about continuing vision loss that I might never get back. So, on Tuesday I became a patient once again at Northwestern. They started the IV and are giving me 1000mg of Prednisone a day. So far, my blood pressure is a little high but stable. I have experience bad headaches and last night my blood sugar was really high (389), so I am now receiving insulin. Today it is under control.
The plan is to get another dose tomorrow and follow my blood sugars throughout the day. Then they ordered me a glucose monitor for home and I will track it for the next month. I will continue to take oral Prednisone at a lower dose (80 mg/day) at home for another four weeks. This is still a rather high dose, as normally I take 6 mg a day.
Hopefully on Saturday I will still be able to go to Camp Timberlee in Wisconsin with Alyssa and her Brownie troop. Keep me in your prayers and I will keep you posted!
Wednesday, April 11, 2012
Stevo gets a job
We had a great start to the week. Steve landed the job and should be starting April 14. He'll be working for a semi-start-up company doing medical sales to surgeons. The best news is his territory is Illinois, Wisconsin and part of Indiana, and will require only overnight travel. The benefit package appears to be much better than the last company and the funding hopefully will be better as well. Hopefully this time the company will grow big and be bought by another company. Even though we have not received a paycheck yet, we just feel so blessed that he got his job. A big weight has been lifted.
I went for more physical therapy and the eye doctor recently. In addition to the good, I have been having some stomach issues and pain in my abdomen and just so happen to have a general surgeon on Tyler's travel soccer team. At our game Saturday, I had a physical consultation in the parking lot. I found I have two types of hernias. One is a ventral hernia up high that was repaired 16 years ago but came back, and the other is an umbilical hernia, so now my belly button is distended out like when I was pregnant. It causes digestive issues. I'll need outpatient surgery but it's a 3-4 week recovery. I plan to do that maybe mid-May.
Yesterday I went to the eye doctor, Dr. Cohen, to track the optic nerve size. He said the tumor has gotten significantly larger and a lot of swelling around it is affecting my vision. Unfortunately he has no answers. We put in several calls to other eye experts, one in Michigan and two in Philadelphia, and late this afternoon Dr. Cohen told me the two doctors in Philly recommended I be admitted to the hospital for extremely high dose steroids to bring the swelling down. When I asked why in the hospital, he said the high dose steroids will cause me to gain extra fluid weight as a side effect, which can affect my heart and kidneys and I need to be closely monitored. Afterward I'll continue steroids for about a month and hopefully it'll keep the swelling down enough that I don't lose more vision. He'll call my internist, Dr. Havey, to see if it is safe to do this and if we can get it done before there is more permanent damage. Meanwhile, we have not heard from the Michigan doctor yet. Looking online, there are not many patients with optic nerve tumors or doctors with experience in this area. I NEED A MIRACLE.
Whatever they do, they only have three weeks to figure it out. I have a give forward-style trip to take. I'm going to Atlanta to visit Sheila and her family and we'll play, have girl time and a little R&R. I am glad that I'm getting away.
I'm working on the projects that I want to get done before school is out. We got the carpet cleaned and next we're getting the house cleaned. Outdoor soccer is in full swing. We have three games on Saturday.
We had Easter with the family, which was fun. I think I drank too much but it was so nice to get out and it was really relaxing. The Easter Bunny came to our house so there were lots of candy, gum and treats. Steve even got me Trinidads.
Today I picked up my two new pairs of glasses. You have no idea what a difference. My prescription had changed so much and these glasses are so much better. I still want to look at lights for the house and I really want to organize my photos and closets so that I can enjoy the kids when they get out of school.
I went for more physical therapy and the eye doctor recently. In addition to the good, I have been having some stomach issues and pain in my abdomen and just so happen to have a general surgeon on Tyler's travel soccer team. At our game Saturday, I had a physical consultation in the parking lot. I found I have two types of hernias. One is a ventral hernia up high that was repaired 16 years ago but came back, and the other is an umbilical hernia, so now my belly button is distended out like when I was pregnant. It causes digestive issues. I'll need outpatient surgery but it's a 3-4 week recovery. I plan to do that maybe mid-May.
Yesterday I went to the eye doctor, Dr. Cohen, to track the optic nerve size. He said the tumor has gotten significantly larger and a lot of swelling around it is affecting my vision. Unfortunately he has no answers. We put in several calls to other eye experts, one in Michigan and two in Philadelphia, and late this afternoon Dr. Cohen told me the two doctors in Philly recommended I be admitted to the hospital for extremely high dose steroids to bring the swelling down. When I asked why in the hospital, he said the high dose steroids will cause me to gain extra fluid weight as a side effect, which can affect my heart and kidneys and I need to be closely monitored. Afterward I'll continue steroids for about a month and hopefully it'll keep the swelling down enough that I don't lose more vision. He'll call my internist, Dr. Havey, to see if it is safe to do this and if we can get it done before there is more permanent damage. Meanwhile, we have not heard from the Michigan doctor yet. Looking online, there are not many patients with optic nerve tumors or doctors with experience in this area. I NEED A MIRACLE.
Whatever they do, they only have three weeks to figure it out. I have a give forward-style trip to take. I'm going to Atlanta to visit Sheila and her family and we'll play, have girl time and a little R&R. I am glad that I'm getting away.
I'm working on the projects that I want to get done before school is out. We got the carpet cleaned and next we're getting the house cleaned. Outdoor soccer is in full swing. We have three games on Saturday.
We had Easter with the family, which was fun. I think I drank too much but it was so nice to get out and it was really relaxing. The Easter Bunny came to our house so there were lots of candy, gum and treats. Steve even got me Trinidads.
Today I picked up my two new pairs of glasses. You have no idea what a difference. My prescription had changed so much and these glasses are so much better. I still want to look at lights for the house and I really want to organize my photos and closets so that I can enjoy the kids when they get out of school.
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