I'm Back.

I 'm back. It has been a while since I last posted to my blog. I had some more health problems and took a break from blogging. My last two posts (Hospital, A Shocking Visit to the ER) were about my heart problems, and since then the health problems continued.

Last November 23rd, after days of feeling ill and having persistent high fevers, my doctor suggested I go to the emergency room. I am never thrilled to go to the hospital, but I knew that this was necessary. This had been going on too long and it needed to be taken care of.

I decided to go to UCSD/Thornton Hospital in La Jolla. Usually I go to Scripps Memorial Hospital in Encinitas, which is the nearest hospital. But since I had been at the ER in Thornton Hospital earlier in the month for my heart troubles, I thought it would be good to go there.

My nurse, Ernie, drove me down to the ER. At the ER, they did blood work, which usually requires quite a few needle pokes to get blood from me, took a chest x-ray, and started an IV. The x-ray showed pneumonia in my left lung. They started me on a series of strong antibiotics.

But, the pneumonia was just part of my troubles. While in the ER my heart started to act up. I had rapid heart rate and atrial-fibrillation. A few times it converted to a normal rhythm by itself, but a few times they had to use a drug through the IV to convert the heart. They managed to get it under control for a while.

After hours of waiting, I was finally moved to a room in the ICU. I was transferred from the gurney to the much more comfortable hospital bed. The gurneys in hospitals are like concrete slabs. I wonder what sadist invented them. When the respiratory therapist suctioned my trach, my heart started acting up again, and it did it again when the nurses turned me. Through the evening I kept having heart problems. The next two evenings were no different. Finally, after trial and error they found the right heart medication, Fleccanide. and for the rest of my hospital stay, my heart stayed in a normal rhythm. It was a relief to go days without my heart acting up. Now, my only concern was beating the pneumonia. As a person with Duchenne Muscular Dystrophy I understand how serious pneumonia can be if it is not under control. It has the potential to be deadly for people like me. In addition, they found fluid around my heart. The only treatment was to let it go away by itself.

Lucky for me, my hospital stay was only five days. Unfortunately I was there for Thanksgiving. It was strange not being home to celebrate with my family. This was the first time I had ever missed a holiday at home. I was feeling down that day. As I was lying in bed, bored and in need of cheer, a women brought a therapy dog into my room. The dog was a friendly golden retriever. The dog jumped up on a chair next to my bed and proceeded to lick my arm. It was like she was telling me that everything would be all right. That simple act made my day and lifted my spirits.

The next evening, my brother Bill surprised me by flying down from San Francisco and showing up at the hospital. That was a nice surprise.

During my stay at hospital , my mom, dad, brother, and sister took turns during the day being with me, and Ernie was there overnight. It is always nice to have someone there because the nurses are busy and can't always be there. Also, I am unable to push the buzzer if I need assistance. The nurses are very appreciative of the extra hands. I found the staff at Thornton Hospital to be pleasant and most had a great bed side manner.

On Monday, November 28, I was discharged. They sent me home on antibiotics. They thought the pneumonia was under control. I went home with the hope that they were correct. But, the fevers continued to plague me. One morning, while Ernie was trach suctioning me, he had trouble clearing the trach, and I was having trouble breathing. Since the ventilator wasn't giving me sufficient breaths, Ernie had to use the ambu bag to force breaths into my lungs. He had my mom call 911. The paramedics arrived and drove me to the ER at Thornton Hospital. They had to bag me the whole way. At the ER they took blood work, chest x-rays and started an IV. They diagnosed pneumonia and started me on IV antibiotics. I would have to be admitted. They had no room at Thornton, so they were going to send me to UCSD Medical Center which is farther away. Instead of going farther south, I decided to be transferred to Scripps Memorial Hospital in Encinitas, which is much closer to home. Scripps is a very good hospital and I have been there many times over the years. I was taken by ambulance up to Scripps Hospital. Once I arrived I had to do more waiting for a room to be made ready for me. After waiting hours there, I was finally taken to a room in the ICU. It's always a relief to get off the gurney.

The last time I was here was in 2006. It was a like a reunion, since many of the same nurses and respiratory therapists that treated me back then were there. I received very good care while I was there, as I did the other times I was there in the past.

I was in the hospital for five days. As usual, my mom. dad, and sister took turns spending time with me during the day, and Ernie stayed the nights. They treated me with IV antibiotics and had to wait and see. I responded well and it seemed like the pneumonia was again under control. On December 23, I was discharged and sent home on antibiotics. It was an early Christmas gift to be home in time to celebrate Christmas with my family.

It seemed like the pneumonia was gone. But, after I had finished ten days of the antibiotics, the fevers returned. I went back to spend two more days in Scripps Hospital and received more antibiotics. They sent me home without antibiotics. At the end of January the fevers returned. I saw the doctor, and he put me on antibiotics for ten days. This last regimen got rid of the last traces of infection and I have been in great health since.

A Shocking Visit to the ER

Last Tuesday afternoon, after experiencing atrial fibrilation (when the two upper chambers of the heart, the atria, beat irregularly and out of coordination with the two lower chambers, the ventricles) and rapid heart beat, my nurse, Ernie drove me to the ER at UCSD/Thornton Hospital in La Jolla. In the morning, I felt my heart beating faster than usual, but thought it might slow down, as it usually does. I was lifted out of bed and into my wheelchair. As I sat in my wheelchair at my computer, my heart continued to race. Instead of going down, my heart rate got faster. As soon as Ernie showed up for work at 2:00, there was no change in my heart rate, so I had him drive me to the ER right away.

Once at the hospital I drove my chair as fast as I could to the ER. There were already a few people waiting as I arrived, and was afraid I would have to wait a while to be seen. Not a comforting thought as my heart continued it's rapid and irregular beat. To my relief, it was a brief, yet anxious wait. Since I had a heart problem, they took me in ahead of everyone. After a brief visit with the triage nurse I was ushered to an examination room where I was transferred to a gurney and put on one of their vents.

My heart rate got up to 182. They did an EKG and they had to find a vein to start an IV. They also took a blood sample from a good vein in my foot. The blood work showed that I had low potassium levels. About an hour later, after much searching and poking, and the help of an ultrasound machine they found a vein in my arm. Through it, they injected a medicine to slow my heart. Almost right away my heart slowed down. It felt like my heart would stop. Unfortunately, it only slowed my heart rate temporarily. This meant they would have to use electroversion, or electric shock to convert my heart back to a normal heart rhythm. It was not a very pleasant thought, but I steeled myself for this necessary procedure. I had an image of being shocked by the paddles and my body jumping. The doctor put me at ease by telling me that I would be asleep during the procedure, so I wouldn't feel a thing. I guess I have seen too many medical dramas. Instead of paddles, they stuck large pads to my chest and then injected a drug into my IV which knocked me out. They shocked me and my heart returned to a normal rhythm. I was allowed to go home when they were satisfied that my heart was staying in rhythm. I was at the ER for five hours and avoided a stay in the hospital.

This was not my first experience with rapid heart beat and atrial fibrilation. Last month I was hospitalized for rapid heart beat and atrial fibrilation after having a trach change(see Hospital blog post) I thought it was due to the Tetracaine, used to numb the trach area. In that case, my heart converted back to a normal heart rhythm by itself. It was also found I had low potassium. I thought it was an anomalous occurrence, but when it happened again without Tetracaine, I realize that there is something going on with my heart. I hope when I see my cardiologist next month he can get to the bottom of this. It is not something I want to keep experiencing. Since the shock, my heart rate has remained stable, but I am crossing my fingers that I won't have a recurrence.

Hospital

On Tuesday, October 5, I went to UCSD Medical Center for my routine bronchoscopy and trach change, which I have done every two months, by Dr. Harrel in the pulmonary department. I have a bronchoscopy whenever I have a trach change because I have had problems with scar tissue in my trachea blocking the tip of my trach, and blocking air flow. The bronchoscopy allows the doctor to see where the scar tissue is so the trach can be placed away from it. The procedure usually goes like clockwork, and I am in and out of there in no time. But, not this time.

Before the doctor starts the procedure, the nurse squirts Tetracaine, a numbing agent, down my trach. It looked like she used more than usual. I usually get a litle light-headed and get a slight buzz, and it doesn't take long for the effects to wear off. But, during the procedure this time. the room started to whirl around, the voices of the doctor and nurses seemed distant and were fading in and out. It was like a bad trip. When I closed my eyes, I still felt I was spinning around. I also felt nauseous and drowsy. After the procedure, which went well--except for the bad trip--I was so out of it. I was still dizzy and had to keep closing my eyes, and was incapable of driving my wheelchair out of the room. Ernie, my nurse, had to use the attendant control on my wheelchair to drive me to the waiting room/recovery room, where I had to wait for the drug to wear off.

While waiting for the effects of the Tetracaine to wear off, my heart started to flip out. My heart rate shot up to 188, and my heart went into atrial fibrilation. This is when the atria, the two upper chambers of the heart, beat irregulary and out of coordination with the ventricles, the tw0 lower chambers of the heart. My heart was beating so fast, it felt like it would come out of my chest. After what seemed a long time, my heart returned to a more normal beat. It was a scary experience, especially since I didn't know what was going on. Dr. Yung, the ER doctor who was summoned when my heart acted up, said that they would have had to shock my heart back into rhythm if it hadn't settled down by itself. Yikes!

As a precaution, Doctor Yung, and Dr. Harrel, my pulmonologist, decided to admit me to the ICU overnight for observation. Not what I wanted to hear, but I knew it was probably for the best. After waiting for a few hours, they finally were able to move me to the ICU. I was transferred to a gurney and wheeled up to the ICU on the tenth floor. Being on a ventilator means that I always end up the ICU whenever I am hospitalized.

While in the ICU, they had to take the dreaded blood work. Whenever I need blood, I am usually subjected to numerous needle pokes until a decent vein can be located. I always end up feeling like a human pin cushion. This time was no diffrerent. After much poking, and the attempts of three different people, a vein was found in my wrist and thtey got the blood.

The results of the blood work showed very low potassium levels. Low potassium is dangerous for the heart. I was given potassium to boost my levels. The next day they had to take more blood. The vein in my wrist had collapsed, so they had to do more searching and poking. Finally they found a good vein on my foot. The results showed that my potassium levels were now too high. I could not be sent home until my potassium levels were normal. That meant one more night in the hospital, and more blood draws. Lucky for me, the vein in my foot was so good they were able to use it for all additional blood draws.

The next morning, I found out that my potassium levels were back to normal and I was given the green light to go home. I was glad to get out of there.

My stay was not too bad, though it was boring. All I did was sleep, and watch television. The good thing was that the selection of television channels was decent. During the day my mother sat with me, and Ernie, my nurse stayed the nights. My sister spent a few hours with me my last evening there. I always need someone with me when in the hospital because I can't press the call button, and the nurses are too busy with other patients to be there all the time. The nurses appreciate the extra help. The nurses were pleasant and professional. They were attentive, and turned me often to prevent bed sores. Even the respiratory therapists and doctors were friendly. They all had a good bedside manner. My night nurse for both nights, Fidel, was especially friendly and tried to make my stay as pleasant as possible.

I was glad that my hospital stay was short, and that I was in for something that turned out to not be life-threatening. But anything concerning the heart is scary,especially when you don't know what is happening at first. It is humbling to think that the beats of that fist-sized organ in my chest is all that is between me and oblivion. It is highly likely that my heart episode was brought on by the Tetracaine, and not due to some worsening heart condition . For that, I breathe a big sigh of relief.

San Diego Trolley Outreach

On Monday, MTS (Metropolitan Transit System) of the city of San Diego, held an outreach for the disabled community. The purpose was for people with disablities, especially those using manual and power wheelchairs, to try out the ramp they are planning to put on all the new trolleys. They also wanted the input of the disabled community about the new ramps.


The event was held at the 12th and Imperial transfer station in downtown San Diego. They had a mock-up of the planned ramp as it would be with the doors of the trolley open. They had me drive my chair up and down the ramp, approaching from different sides and straight on, with high sides and without. I found it very easy to manuever my power chair up and down and the width of the ramp and doorway was just right. Afterwards I gave a positive evaluation.

Though it worked great with my power wheelchair, the manual wheelchair users had trouble pushing their chairs up and down the ramp. Being in a power wheelchair, I forget that manual wheelchair users use a lot of effort to move around. It was my hope, and the hope of the other people that took part in the outreach that our input would lead to a ramp that would work for all people with disabilities. It was our understanding that this was the purpose of the outreach.

I applauded what appeared to be a good effort of the MTS to reach out to the disabled community. But, it turned out to be an empty gesture. An acquaintance of mine who uses a manual wheelchair had trouble wheeling himself up the ramp--as did a lot of manual wheelchair users--and mentioned the problems and suggested they lengthen the ramp to make it less steep. He was told that the ramp could not be changed. The outreach turned out to be futile. Why did they have us try out the ramp and give our input when the design was already approved? It appears to me that this outreach was nothing but an attempt on the part of the MTS to appease the disabled community and to make themselves look good. It achieved neither purpose.

Visit to the Office of State Senator Mark Wyland

On Tuesday, June 29 ( This blog post is over a month late. Blame it on summer procrastination) , I paid a visit to the local office of State Senator Mark Wyland. I went to his office to discuss my concerns about possible cuts to IHSS (In-home Support Services) and Medi-Cal and how cuts to these programs could adversely affect the ability of people with disabilities to live independent lives, and to be a part of the community

This is part of my work with Access to Independence of San Diego to advocate for the disabled community. Again I was accompanied by Rachel Vega from A2I. But, this time I did most of the talking. Senator Wyland was not available, so we met with his assistant instead.

I told Senator Wyland's assistant how important it was for a person with a disability to live in the community and to get in-home care or assistance. If I didn't have in-home care to help me with my everyday needs, then it would be very difficult for me to live at home and I would end up in a nursing home. A nursing home is a terrible fate for an independent person; in a nursing home there are all kinds of germs and viruses and it isolates people from the community. If cuts are made to programs that enable people with disabilities to live in the community, such as IHSS and Medi-Cal Waiver Program, then it be comes a quality of life issue. It would also violate the Olmstead Act, which is supposed to allow people with disabilities to choose to live in the community, and not to be forced into nursing homes.

His assistant seemed attentive to what I was saying and appeared to grasp the importance of what I was saying. Whether or not what I said will influence Senator Wyland or not is difficult to know, but it is still important to let my voice be heard and to try to give voice to an important issue for the disabled community.

Birthday at the San Diego Wild Animal Pak

On Saturday, July 10 (this blog post is late, but better late than never), I went to the San Diego Wild Animal Park, to further celebrate my forty-second birthday. Instead of having a party, like I usually do, I decided to do something different for a change. I went with my nurse, Ernie; my mom, sister, my niece, Dallas; my nephews, Sterling and Stetson and my good friend, Peter, who came down from Palo Alto. We went at 4:00 in the afternoon and stayed till 8:00. This is a great time to go, since it is usually cooler, and the animals are usually less sluggish.

As we entered the park through the aviary to look at and find the various birds, my youngest nephew, Stetson grabbed a plump, slow-moving bird as it walked around the area. I thought the bird would peck him, but it just seemed surprised. There is never a dull moment when Stetson is around.

After that we went to the Lorikeet Landing, an aviary with tame lorikeets. The lorikeets fly around and like to land on visitor's outstretched arms, hands, shoulders, heads. They especially like to land on you when you have a cup of nectar. I had a cup of nectar placed on my wheelchair armrest, and in no time at all, I had a lorikeet on my arm. One also landed on top of my head. That was an enjoyable experience for all.

The next stop was a performance by an African acrobatic troupe from Tanzania. They put on an entertaining show. The show included a flaming limbo pole, which an acrobat moved under. Each time the pole was moved even lower, until it was so low that it didn't seem possible that anyone could pass underneath it. But, he managed to do it. One of the acrobats also did some fire eating. Also, there were flips, contortionism, and one of the acrobats stood and did handstands on an ever growing stack of chairs, which seemed like it would topple over at any moment. The amazing feats of the acrobats, plus their enthusiasm made for a great show.

After that show we headed to the Frequent Flyer bird show. The show--one of my favorites--includes birds from all over the world. I always like to see the various birds from around the world, especially the majestic birds of prey. There was also a brilliant colored macaw and they also had an African grey parrot, who talked and made animal and other sounds. I always find that to be amusing. During the show, a group of crows in a nearby tree, got in on the act and a white egret landed on top of a nearby tree. It was as if they felt left out and wanted to be noticed. The part of the show I always like is seeing the different birds-of-prey, such as hawks and an owl, flying over the audience (they fly so low that it looks like some audience members will get hit). They always look so graceful as they fly over. I also like to learn about the different birds.

After the bird show, we saw the gorillas. There were a few strutting their stuff around the enclosure. After a dinner break we saw the elephants, then the lions, and just like cats, they were sleeping. The male lion was sprawled out on the roof of an old jeep, while there were two lionesses on the ground. Then we ended the visit with a stop at the insect and reptile exhibit. I am always amazed by the variety and complexity of the insects and how some of them can blend in with their environment. My nephews seemed to enjoy this exhibit.

This was an enjoyable, yet low-keyed way to celebrate another birthday. It was nice to spend time with my family and my good friend, Peter. It also gave me a chance to spend some quality time with my niece and nephews.

Happy Birthday to Me!

Yesterday I celebrated my forty-second birthday--another victory against Duchenne Muscular Dysrophy. When I was diagnosed at the age of six, the doctors said I would not live past the age of seventeen. How wrong they were! I am another year older, but I still keep on ticking. I celebrated this birthday with little fanfare. I just got together with my family and my good friend Peter, who came down from Palo Alto. It was a nice, low-keyed way to celebrate being another year older.

Sting

On Sunday, June 13, I saw Sting in concert with the Royal Philharmonic Orchestra at Cricket Wireless Amphitheater in Chula Vista. When I heard that Sting was on tour I could not pass up this opportunity to finally see him. I have always been a fan of his from his days as frontman for The Police and throughout his solo career. I saw him with The Police during their reunion tour at the same venue in 2008, but now I would get to see him as a solo artist. His unique and varied music style has always appealed to me and I seldom get tired of listening to his music.

Not only was I going to see one of my favorite musicians, but I had very good seats as well. My seats were in the wheelchair section closest to the stage. To get to my seats I had to take an elevator down to them. It was a very close fit for my wheelchair inside the elevator, but they were able to close me in and lower me down. It was a little bit claustrophobic being closed in this metal box. I couldn't help thinking about what if it broke down while I was in it and how they would get me out if this happened. It was a relief to reach the bottom and be let out of the metal box. Next time, I will try to get seats on the side where there is a ramp instead.

It was a unique experience to hear Sting play his music to the accompianent of the forty-five piece Royal Philharmonic Orchestra (conducted by the energetic Steven Mercurio) and his five man band, led by his long-time guitarist Dominic Miller. The show started off with If I Ever Lose My Faith in You and was then followed by the upbeat song from The Police, Every Little Thing She Does is Magic. He introduced the orchestra by saying, "I have the biggest band I've ever had behind me." He also quipped, "They're called the Royal Philharmonic because I borrowed them from the queen."

During the concert he performed many songs from throughout his solo career and some memorable songs from The Police. Quite a few of his songs were reworked for the orchestra (some of these reworked versions of his songs will appear on his upcoming album Symphonicities).

He performed songs such as Englishman in New York, Straight to My Heart, Tomorrow We'll See, Russians, Shape of My Heart, She's Too Good for Me, Why Should I Cry For You?, Next to You, Roxanne , King of Pain, Every Breath You Take, Moon Over Bourbon Street, I Hung my Head, End of the Game. Fields of Gold, Mad About You, Fragile, Desert Rose.

I had a very enjoyable evening under the stars, listening to some great music. Sting did not disappoint. I liked his selection of songs and the way they sounded with the expansive, and sometimes powerful music of the orchestra. Most of his music was complemented very well by the orchestra. Sting's voice still proved to be very good. He also created a more intimate atmosphere by prefacing many of his songs with the background and inspiration for them, as well as anecdotes from his life growing up in the working-class area of Newcastle in Northern England. This added an interesting aspect to the show. When the show was over, I came away feeling upbeat and wishing for more. I was not disappointed. It was well worth the ticket price.

Kick for a Cure

On Saturday, June 5th, I went to the fourth annual Kick for a Cure soccer tournament and festival. This event is organized by Duchenne San Diego, a charity which, through this and other events, raises funds for Parent Project Muscular Dystrophy (PPMD) to find a cure for Duchenne Muscular Dystrophy. The charity was started by the husband and wife team of Helena and Jason, whose nephew has DMD. They are truly dedicated to this cause, which is very dear to their hearts. Everyone that works for this charity, including Helena and Jason, are all volunteers. Since they don't have a payroll, they have a lower overhead, and can put more into their cause.

The event included a soccer tournament, with about fifty teams from all over San Diego County, competing on the atheletic field at Westview High School. They also had a festival area with booths with various vendors and a fun zone with games and a balloon bounce. Among the games was human foosball, which was a lot of fun to watch and was a lot of fun for the players as well. The local news station, KUSI was there to cover the event. I was on camera with the volunteers in an enthusiastic cheer which was aired to close the nightly news.

I am a big supporter of this charity and hope to be able to help them out in any way I can. Having DMD myself, I have a large stake in the search for a cure. I have lost friends and would like a cure to be found. A cure may not be found in time for me, but my hope is for the children with this disease, and those yet to be born with this disease. It is my hope that they will see the day when medical science will find a cure for Duchenne Muscular Dystrophy.

Visit to Assemblyman Nathan Fletcher's Office

Yesterday I visited the local office of Assemblyman Nathan Fletcher to discuss proposed cuts to IHSS (In-home Supportive Services) and Medi-Cal. This was my second visit to the office of an elected official in my efforts at advocacy for the disabled community. (Last month I visited with Assemblyman Martin Garrick). I went on the visit with Rachel Vega and Connie Soucy, both from Access to Independence of San Diego. We met with a staff member of his to discuss our concerns. She seemed to be receptive to what we were trying to say. Though I am not a constituent of his, it is important to talk to as many elected officials as possible to let them know how devastating cuts to these programs would be to so many people with disabilities.

Cuts to these programs would make it harder, if not impossible for people with disabilities to continue to live at home and be a part of the community, and many would end up in the nursing home gulag. The nursing home industry would like this. More people would mean more profit for them, but it would do nothing for the quality of life and dignity of people with disabilities.

Though I understand the need for cuts to the California state budget, they can't cut everything. Cuts in programs that allow people with disabilities to be a part of the community would be devastating as well as more expensive to the state in the long run: warehousing people in nursing homes is far more expensive than giving people in-home care and support.

In-home care and support, though it allows people with disabilities to be a part of the community, and is cheaper than nursing homes, has many more benefits. In-home care and support creates thousands of jobs for health care workers and home health care aids; allows people with disabilities to hold jobs; it makes the quality of life and well-being of people with disabilities so much better; people with disabilities spend money in the community, and if they work, they pay taxes in addition to spending money. Also, making it harder for people with disabilities to live in the community would be a violation of the Olmstead Act of 1999, which affirms the right of people with disabilities to live in the community.

Governor Schwazenegger, the State Assembly, and State Senate, would be well-advised to reconsider devastating cuts to IHSS and Medi-Cal. I hope my efforts as a representative of the disabled community to protect it's interests, though small, will have some influence on the politicians in Sacramento.