Again to summarize, without going into too much detail, this is where things stand today. None of the three options that we were considering for my eye were viable. I felt like a sitting duck and at this point I was only seeing shadows or complete whiteness. It was recommended that I have surgery and therefore underwent a vitrectomy, where two incisions are made to open the eye to clean out the gel-like fluid, but in my case it was to clean out the blood. The doctor also applied a very high-level laser to the two retinal lesions to hopefully stop them from growing and bleeding. The hope was that after my eye heals, the pressure would go down and the fluid that had accumulated near the optic nerve would be lowered, decreasing the risk of a detached retina.
I had the surgery on Oct. 9, was able to see shadows on the 10th, and since then, other than an occasional shadow here and there, have experienced complete blindness (darkness or whiteness). It has been a very scary time, especially as the days go on and the vision doesn't improve. But I guess I'm learning to adapt to it, as I guess anyone else would when you have to.
Over the past 4-5 days I've noticed an increased pain behind that eye as well as swelling in the eyelid. I went to the eye doctor today. He checked the pressure within the eye, which is normally within the normal range, yet today it was extremely high and consistent with glaucoma-like readings. He gave me two new drops to take to decrease the pressure. If the pressure doesn't return to normal levels by early next week, he wants to try an Avastin injection into the eye. At the appointment today, he was also unable to see into my eye because it was filled with blood, so he did an ultrasound to confirm the findings. If we can't resolve this blood within the next week or so, he said he would go back in to surgically take the blood out.
For me, the blindness is very disorienting because I can't hear in my left ear so I can't follow sounds, and I've had many brain surgeries, and therefore I'm unsteady on my feet. And when you combine that with vision loss, it's simply not a good picture. But I'm very optimistic that I'll see again now that I know what the problem is. If the blood goes away, I know I'll be able to at least see shadows. Even if I can only see shadows, at least I'll be able to walk around things.
Along with my eye pressure being high, I've also been running extremely high blood pressures, which I feel is compounding the bleeding issue. I'm going to see Dr. Havey, my internist, on Monday to start on another blood pressure medication. (I already take three.)
I spoke with my neurosurgeon today, Dr. Bendok at Northwestern, regarding all my brain and spine scans. He said everything for the most part was unchanged, yet two areas were of somewhat concern. One is in the balance center of the ear, where there was a new build-up of protein-like cells, which I'm worried could mean the start of a hearing loss or another tumor in my right ear. I cannot be like Helen Keller so this cannot happen. So I'm hoping to hear from my ENT that it's nothing to worry about.
The other was an area in my lumbar spine (lower back) that has changed and would cause a walking imbalance and incontinence, and he would like me to see a specialist to make sure that the issues I'm having in those areas are not caused from this tumor. I have noticed my balance is off. After my brain surgeries and not seeing, of course my balance is off.
On a new forefront and brighter note, my neighbor Suzanne and I attended a VHL conference two weeks ago. There were five families present other than myself, plus a geneticist, kidney surgeon, and the leader from the East coast that runs the VHL Alliance. It was very enlightening as they have recently opened a VHL clinical care center, which is now the fourth in the country. How lucky am I that it is here in the University of Chicago.
Basically, they have eight different specialties to make sure that no areas are overlooked, including a geneticist. I plan to make an appointment to see all the physicians over a two-day span at the beginning of November. They mentioned that you can use them as a primary or just as a second opinion. Now that I know Tyler has VHL, I need to have Alyssa checked through DNA analysis, which the geneticist can arrange. It should be interesting to see their opinions compared to that of the general doctors I have been dealing with.
Since the start of my vision loss over a month ago, I have contacted the State Department of Rehab and the Lighthouse for the Blind. I have yet to see a body and I've only received calls back twice. It's very discouraging to me that somebody with a recent diagnosis of blindness can go this long with nobody following up on you. I am a very fortunate person that I have all the support of my friends and family that I do, because in general people might not have this support and might have given up by now. Blindness is like nothing else - it's the worst thing I've experienced in my life. What do all these people do out there? Our State runs on deadlines, the first of which they've already missed. They have 60 days to put a plan into action but they have not even come up with the plan yet. The State is very poor and slow, and they don't have enough accountability.
On an lighter note, I just returned from a well-needed vacation to Steamboat Springs and Golden, CO. The first half of the trip was spent with five friends from high school who all celebrated our 50th (or did I mean 30th?) birthdays. The accommodations were lovely in our five-story mountainside town home with mountain views and a Jacuzzi to boot. We went hiking, the girls all went horseback riding, and we even soaked in the natural hot springs and had a massage. We basically ate, drank, and reconnected. I can hardly wait to see the pictures when I can see again - hopefully soon.
We then went down the mountain to see my brother Jeff, sister-in-law Cindy, and their kids Anthony, Emma, and McKenna. Alyssa came along and stayed in Golden with them while the girls went our way to Steamboat. In Golden we again went hiking and we also went to Pearl Street in Boulder, which has a lot of shops, restaurants and street performers. We also celebrated Alyssa's 10th birthday there on Oct. 24. It was good to visit and catch up. Again, I can hardly wait to see the pictures of where I've been. A big thank you to everyone: Sue, Diana, Sheila, Sheila, and the Kolinski family, for making this all possible. And another big thank you to Sheila and her mother for splurging once again. I think Ruby wanted a fourth daughter.
Tyler, since the last post, had a full week of tutoring, and then returned to school about 10 days ago. He goes in early or stays late to continue to catch up on his work. He missed a total of 9 days prior to surgery and 18 days after, so he had a lot of making up to do. So far so good. His energy is coming back slowly, his appetite is improving, and his pain has nearly subsided. It's so nice to have my Tyler back again. He still suffers no neurological deficits. We see the doctor for a follow-up in a week because he is still restricted to walking only, and has been unable to lift over 5 lbs or drive a car. Other than his short hair and incision, you would almost forget he had surgery. We still need to continue to check the other areas of his spine and his eye to look for further signs of VHL, yet his ears and abdomen appear to be okay. Now that his energy level is improving, we plan to continue his college search.
Steve has never been busier. Between taking care of Tyler, his newly blinded wife, and schlepping Alyssa around here and there, he has had very little time for himself. Work has been crazy and busy, which is a good thing, but he suffers a tremendous amount of stress. Everyone in this family handles stress differently and we are all looking for the perfect outlet. Poor Alyssa just goes with the flow of life, but she's very busy with her girl scouts, soccer, choir, and jazz and tap. She needed the Colorado break since she's been under stress, too. It was a well-needed vacation for her.
Alyssa's teacher Sherrie ("Urbie") and Suzanne started up a meal train earlier this month, which has relieved a tremendous strain from Steve and has provided healthy, delicious meals for our family. It even has my kids trying foods they never would have tried, so they are developing new tastes along the way. It has been very appreciated and helpful. It's three days per week, and the leftovers feed us most of the other days.
Does anybody local know a good cleaning lady or someone good with organizational skills? If so, please email me.
Wishing you all a spooky, spectacular Halloween before the holiday rush begins. I will keep you posted on my vision and upcoming doctor visits as per usual.
Friday, October 26, 2012
Wednesday, September 26, 2012
Another day, another challenge
Without going into too much detail, I'll just give you the summary of where things stand today. Two weeks ago I had gone to the eye doctor as I had noticed my vision to have greater fogginess, and he said it looks like my retina was close to detaching and the reason for the increased fogginess was due to the fluid that the tumors are producing. The fluid is causing the retina to detach from the back of my eye. He reiterated there was nothing he can do from this end until I see the eye specialist in Grand Rapids, MI, to see if he has any ideas to approach the situation without causing further vision loss.
Little did I know, the following morning, I woke up and heard the news from our pediatrician that my son had a brain stem tumor and cyst, and my blood pressure must have significantly shot up because 10 minutes later, my house turned white. I was home alone and thought I had a stroke. I had no pain and was trying to figure out what happened to me. Thank God for the iPhone 4S with Siri that I was able to contact my neighbor Suzanne, who immediately came over to see if we could determine what happened. We called my eye doctor, who was running between surgical rooms as well as giving a presentation at Rush Hospital, and was not able to talk with him until later in the afternoon. Dr Havey, my internist, thought it could have been a bleed behind my eye to the brain, and wanted me to race down and have an MRI scan. We felt this was more eye-related and opted to see the doctor in Grand Rapids instead.
Luckily, he took me as an emergency case the following day and explained that I had a large bleed, which was causing me to not see out, but he felt that as with any bruise, it would be a matter of 2-3 weeks before the blood would re-absorb and my vision would return to normal.
Regarding his recommendation to treat the retinal detachment/increased fluid, he gave me three options. His #1 choice is systemic chemo with a drug called Avastin. He has had experience personally with this drug 10 years ago and felt that it would be beneficial for me as well. His choices #2 and #3 involved radiation therapy, one being whole eye radiation, and the other being focal radiation to the tumors, yet he feels I would get radiation damage 2-3 years down the line even though I would probably get better results initially.
So, for the past two weeks, I have been focusing on getting approved for this drug, which unfortunately is not approved by the FDA for my diagnosis. I've been denied by Medicare as well as my secondary insurance, and have had doctors write letters to the insurance company saying this is a last-resort drug treatment and I have no other option. In addition, we have submitted articles of studies that I have found related to my diagnosis where this drug has successfully been used. I should have an answer in the next 7-10 days. If denied, I will have to come up with the amount out-of-pocket or see if the manufacturer (Genentech) will give me a discounted rate or donate several doses. This drug is very pricey (e.g. $14,800 per dose), of which I need two per month.
Say your prayers and wish me luck that my appeal goes through. I hope it's a go because presently I'm nearly blind. I see very limited shadowing and have again had another bleed a week ago. My doctor has upped my blood pressure medication and tells me to rest and relax, which I'm trying to do with the increased family stresses and Tyler's health issues.
I see the oncologist tomorrow to see if I qualify to take the drug, due to my medical health and increased risk of bleeding that I have. In addition, I am running my own trial and I'm getting MRI scans of my brain, complete spine, kidneys, and abdomen. I'm also seeing the dermatologist tomorrow to evaluate my skin to see if this drug may have any effects one way or another. I thought I would get a baseline on everything as well as my eye to see if this chemo will help others with VHL down the road. Several of the articles I've found show this drug to be promising, so I'm hopeful it can help me, too.
As for my gyne situation, I need to postpone the surgery until I can be cleared medically with my increased blood pressure and possibly being on a chemo drug.
As most of you know, my son Tyler was recently diagnosed with a brain stem/cerebellum tumor and cyst. Fortunately, the surgery couldn't have gone better. We used a pediatric neurosurgeon, who has never operated on our family before, from Lutheran General Hospital. We found not only his expertise but the staff to be top notch. Tyler did so well that he was discharged on the 4th day. He no longer suffers from nausea, vomiting and dizziness, which had been constant for about a month before the surgery. He now just has post-op incisional head pain and neck pain, and headaches from mild to severe. We see the doctor Tuesday for our follow-up appointment where we'll get a back-to-school date. He has missed two weeks of school and will probably miss two more. Tutoring should start later this week.
He's actually had a lot of stress besides just brain surgery. He started the summer with mono in June, tore his left ACL, and suffered from infections and then the neurological problems. In addition, Tyler underwent surgery on his left knee to repair his torn ACL on August 16th. One way or another, he's been unable to play varsity soccer -- his passion in life. He had so looked forward to his senior year and so far but it's been a horrific start. Fortunately, upon returning home from the hospital, two of Tyler's friends surprised him with having a salt water fish tank up and running in his room to help him relax, with beautiful coral, clown fish, crabs, starfish and more.
My sister Robin flew out prior to Tyler's surgery for a week to help with Tyler as well as with myself. While Tyler was in the hospital, Steve took the night shift and Robin and I spent the full day with him. I couldn't have done it without her, especially with the vision loss these past few weeks. Thank you Robin!
Fortunately, Steve's company has been very understanding and told him to take off what he needs throughout the course of Tyler's illness. And, somebody's on his side because his sales are better than anybody else's in the company, so at least his job is going well.
We continue to count our blessings and are thankful for our friends and family, who have been incredible during the past few weeks, as well as always. I can't personally thank everyone enough for all you've done. I hope that your good Karma will be returned to you one day.
Little did I know, the following morning, I woke up and heard the news from our pediatrician that my son had a brain stem tumor and cyst, and my blood pressure must have significantly shot up because 10 minutes later, my house turned white. I was home alone and thought I had a stroke. I had no pain and was trying to figure out what happened to me. Thank God for the iPhone 4S with Siri that I was able to contact my neighbor Suzanne, who immediately came over to see if we could determine what happened. We called my eye doctor, who was running between surgical rooms as well as giving a presentation at Rush Hospital, and was not able to talk with him until later in the afternoon. Dr Havey, my internist, thought it could have been a bleed behind my eye to the brain, and wanted me to race down and have an MRI scan. We felt this was more eye-related and opted to see the doctor in Grand Rapids instead.
Luckily, he took me as an emergency case the following day and explained that I had a large bleed, which was causing me to not see out, but he felt that as with any bruise, it would be a matter of 2-3 weeks before the blood would re-absorb and my vision would return to normal.
Regarding his recommendation to treat the retinal detachment/increased fluid, he gave me three options. His #1 choice is systemic chemo with a drug called Avastin. He has had experience personally with this drug 10 years ago and felt that it would be beneficial for me as well. His choices #2 and #3 involved radiation therapy, one being whole eye radiation, and the other being focal radiation to the tumors, yet he feels I would get radiation damage 2-3 years down the line even though I would probably get better results initially.
So, for the past two weeks, I have been focusing on getting approved for this drug, which unfortunately is not approved by the FDA for my diagnosis. I've been denied by Medicare as well as my secondary insurance, and have had doctors write letters to the insurance company saying this is a last-resort drug treatment and I have no other option. In addition, we have submitted articles of studies that I have found related to my diagnosis where this drug has successfully been used. I should have an answer in the next 7-10 days. If denied, I will have to come up with the amount out-of-pocket or see if the manufacturer (Genentech) will give me a discounted rate or donate several doses. This drug is very pricey (e.g. $14,800 per dose), of which I need two per month.
Say your prayers and wish me luck that my appeal goes through. I hope it's a go because presently I'm nearly blind. I see very limited shadowing and have again had another bleed a week ago. My doctor has upped my blood pressure medication and tells me to rest and relax, which I'm trying to do with the increased family stresses and Tyler's health issues.
I see the oncologist tomorrow to see if I qualify to take the drug, due to my medical health and increased risk of bleeding that I have. In addition, I am running my own trial and I'm getting MRI scans of my brain, complete spine, kidneys, and abdomen. I'm also seeing the dermatologist tomorrow to evaluate my skin to see if this drug may have any effects one way or another. I thought I would get a baseline on everything as well as my eye to see if this chemo will help others with VHL down the road. Several of the articles I've found show this drug to be promising, so I'm hopeful it can help me, too.
As for my gyne situation, I need to postpone the surgery until I can be cleared medically with my increased blood pressure and possibly being on a chemo drug.
As most of you know, my son Tyler was recently diagnosed with a brain stem/cerebellum tumor and cyst. Fortunately, the surgery couldn't have gone better. We used a pediatric neurosurgeon, who has never operated on our family before, from Lutheran General Hospital. We found not only his expertise but the staff to be top notch. Tyler did so well that he was discharged on the 4th day. He no longer suffers from nausea, vomiting and dizziness, which had been constant for about a month before the surgery. He now just has post-op incisional head pain and neck pain, and headaches from mild to severe. We see the doctor Tuesday for our follow-up appointment where we'll get a back-to-school date. He has missed two weeks of school and will probably miss two more. Tutoring should start later this week.
He's actually had a lot of stress besides just brain surgery. He started the summer with mono in June, tore his left ACL, and suffered from infections and then the neurological problems. In addition, Tyler underwent surgery on his left knee to repair his torn ACL on August 16th. One way or another, he's been unable to play varsity soccer -- his passion in life. He had so looked forward to his senior year and so far but it's been a horrific start. Fortunately, upon returning home from the hospital, two of Tyler's friends surprised him with having a salt water fish tank up and running in his room to help him relax, with beautiful coral, clown fish, crabs, starfish and more.
My sister Robin flew out prior to Tyler's surgery for a week to help with Tyler as well as with myself. While Tyler was in the hospital, Steve took the night shift and Robin and I spent the full day with him. I couldn't have done it without her, especially with the vision loss these past few weeks. Thank you Robin!
Fortunately, Steve's company has been very understanding and told him to take off what he needs throughout the course of Tyler's illness. And, somebody's on his side because his sales are better than anybody else's in the company, so at least his job is going well.
We continue to count our blessings and are thankful for our friends and family, who have been incredible during the past few weeks, as well as always. I can't personally thank everyone enough for all you've done. I hope that your good Karma will be returned to you one day.
Sunday, July 29, 2012
Shades of gray (not the trilogy type)
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...
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...
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!
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