Lemonade Part 4

Good news! Cathy's step-dad is out of ICU and is scheduled to be transferred to a Rehabilitation Hospital tomorrow. He walked about 25 feet today with a very little assistance. Cathy's mother is doing much better also and is more alert and aware and is 3X . She actually asked for her bills and payed some and wrote checks on her own. Hopefully this will be a better weekend then last.
Also, one more week of CWDS testing.

Lemonade Part 3

Just got back from the hospitals. Cathy's Step-dad is doing so much better. They removed him from the respirator today and he is responding well. They also removed the drainage tube and put a new bandage on. He is communicating with and recognizes family, moving all his extremities and understands what is happening. It is still to early to tell but it doesn't seem like there is any permanent damage or lose but time will tell. Cathy's mother is also responding well and today was the first day in which she was very coherent and more herself then she has been weeks, she actually asked for her checkbook and bills and payed some of the bills. Although as the day wore on she started to sundown and became more confused. All-in-all the family is very happy with today and is looking forward.

Lemonade Part 2

Cathy's Step-dad had to have emergency brain surgery today. Around 7:00 this morning we got a call from the ICU and the Surgeon advised us the bleeding in his brain was pushing on his brain more and he had to operate "now" so we had to give permission over the phone and then head to the hospital at full speed. If you know where I live then you will be impressed that I did 95 on Rt 88 into Wheeling. I didn't know I could take turns at 70 (I really love my Mustang). We waited for what seemed forever and at 12:00 the Surgeon came in and advised us he was happy with the surgery and he will keep Cathy's Step-dad sedated and on the respirator until at least tomorrow. When we went back to see him he looked better and his color was much better then when we took him to the ER, the drainage tube coming out of his brain was a little disconcerting though. Thanks for letting me vent I needed it.

Life and Lemonade

I've always liked the saying (When life gives you lemons, make lemonade) The last 2 days have been a tree full of lemons. I not feeling well (as per the last few posts) and yesterday around 3:30 Cathy and I get a call and her Step-dad has disappeared no one can find him and the last anyone saw him he was pulling out of his driveway at 1:00. Some of you may be saying, can't I guy loose himself for a couple hours. Not really when it this family. He has been acting rather strange lately and he had a bad fall about a week and a half back and hit his head hard. He is a very stubborn older gentleman and he refused to go to the ER to get his head checked out. The last couple of days he has been slurring his words and seemed rather confused. Anyway back to the story. Yesterday he disappeared. Cathy finally gets hold of him and he informs us he is on Rt 7 North on the side of the road, apparently he ran out of gas. So Cathy and I grab a gas can and head up Rt 7 looking for him. When we found him he could barely walk he was staggering and he was not making any sense. We asked him where he was going and he said he just came from visiting Cathy's mom at the hospital and was going home. The problem with this story is he was 15 miles out of his way and heading away from his house with his dog in the car with him. The battery was completely dead and I couldn't even get the gas cap open due to the battery being dead and could not put gas in the car. We convinced him to go with us and take him home because he refused to be taken to the hospital. When we got to his house I got the neighbors and the four of us "convinced" him to go to the hospital. Well, the short of it is, he is now in ICU with a large area of bleeding on his brain with the Neurosurgeon talking about drilling into his brain to drain the excess fluid. Now we have him in one hospital and Cathy's mom in another and no time to think.
The moral of the story is, please go to the hospital when something happens and don't put off till tomorrow what can be done today.

Illness part 3

Well, another day and I thought I was getting better. I went to the pharmacy and when I got back I was so tired I could barely walk. All I did was drive there and back. I'll find out tomorrow what the results of the culture are and if I have strep (oh boy, something to look forward to.) I'm taking it day to day. I have a hockey game to go to on Sunday with some friends and I hope I'm well enough to go.

Illness part 2

I went to the Urgent Care place in Harrisburg today because I was not feeling any better and Cathy was worried. I have to say the Urgent Care place was amazing. I didn't wait more then 10 minutes from walking in the door to the nurse taking my temperature and getting all the relevant info and 5 minutes later I was talking to the Doctor. I have never been to an ER where I didn't wait at least a half hour usually longer. The Doctor actually took his time with me and spent 15 to 20 minutes talking to me about my condition, about work, and about life in general. The Doctor thinks I may have Strep and he advised me not to go to work until he gets the results back from a culture he took so I had to call off work for the rest of the week and drive back home from Harrisburg cause work would not pay for me top stay at the hotel if I wasn't working, plus I wanted to be home with Cathy and Billy. So, I have to call the Urgent Care on Friday for the results of the culture and find out what the Doctor wants me to do.

Illness

I'm not feeling well today. I went to work and had to leave by 11:00am because I was feeling so bad. I got back to my hotel room and slept for 2 hours. I felt a little better when I woke up but I still think I'm fevered. I have a sore throat and some sniffles. I'm not really congested but I feel worn out and listless. In my esteemed medical opinion I think I have the "crud."

Mafia Wars

I apologize for not blogging lately. I've been in Harrisburg for 2 weeks so far and the connection at the hotel is less the ideal. Also, I have to blame my good friend Greg for introducing me to Mafia Wars. Mafia Wars is an online game through Facebook that is very addictive and a lot of fun to play. The last 2 nights I have been engrossed in the game and I'm only here now because I have to wait for my character to build his strength and money up so I can play some more.

Nano Tech

Yesterday I posted about an article on nanotechnology being used to treat cancer. The article was in BBC Online at http://news.bbc.co.uk/2/hi/health/7935592.stm
This is one of the web sites I visit daily since they have the some of the best world news and reporters.

Nano Tech

Saw an article today where scientist have successfully treated hard to treat cancer using nano technology to deliver the drugs straight to the tumor and avoided harming nearby healthy tissue and organs. Apparently this was done in mice and the article stated the treatment is probably 2 years away before human trials.
Between this and President Obama allowing stem cell research the future is looking much brighter.

Hemophilia 101

When I tell people I have hemophilia I get one of several different reactions. The fist is a blank stare because they have no idea what hemophilia is, which is okay since it is a rare disorder and is very rarely taught or discussed. The second is a look of horror and I can see the thinking flash through their head. OMG he has HIV then they go the extra step and I can see it in their eyes, OMG he has AIDS, then the last step, he's going to infect me, they take a step back and then make an excuse to leave. A third reaction is "aren't you afraid of bleeding to death?" Again it's an honest reaction like the first reaction especially considering some PSA's that have talked about hemophilia being a bleeding Disorder and then menacingly showing a drawer full of knives. And I can guarantee at least 1 in 4 people will say, "Is that why you have a beard, you can't shave." These are the 3 reaction I get most often but there are dozens of others ranging from absolute curiosity, which I prefer since I love to educate people on hemophilia, to people telling me I don't have hemophilia. Seriously, people who don't know me or my medical history, including some doctors, have told me I don't have hemophilia, that I didn't know what I was talking about. There was one Physician Assistant who insisted I didn't have hemophilia and I didn't know what I was talking about since he just took his boards and he knew all about hemophilia. This happened when I was 38 and had been teaching about hemophilia for over 20 years and he was a PA fresh out of college who was an assistant for a Urologist, so obviously he knew more then me.
To be continued ......

Stem Cell Research

President Obama has stated that he will sign an executive order reversing the Bush administrations ban on stem cell research. It's about time our government allows scientist to do real research. This research has great potential to treat many disabling conditions and diseases especially spinal cord injuries.

Back Home

What a beautiful day :0)

I drove home from Harrisburg today and it was very pleasant. I've done this drive many times but today was one of the best with perfect weather and little traffic. I have to return Sunday afternoon and I hope the drive is similar to today's. It is nice to be home to see and be with Cathy even if it is for only two days. My puppies greeted me at the gate with barks, whines and wagging tails. Billy hasn't been off me since I got home.

Feeling Wanted

It's good to know you are wanted and feel like you are needed. I got 4 calls today from people at work. They wanted to say hi, bring me up to date, and to ask my opinion on one topic or another. I've been gone less then a week and people miss me (I feel soooo loved). WOW, that sounds (and I hate this saying, but it is appropriate) so gay. My wife would say "you're such a girl." I finally have a routine after my first week on the road. After I get home from work, I relax for about a half hour then I go to the fitness center at the hotel and do the treadmill for a half hour, then I either get dressed and go out for food or order food at the hotel restaurant and wait in the lounge for my food and have a soda and snack food, then back to my room to read the paper and eat, then a shower and relax the rest of the night. I have such an exciting life ;0)
I get to go home tomorrow, at least for a couple of days then back to Harrisburg on Sunday.

Update

Sorry, I've been gone for awhile. I'm in Harrisburg for work and I'm terribly bored. Work has me testing a new update for out computer system. This system, CWDS, does not do what is needed. It makes work harder and more then doubles our workload. They have me testing stuff and I have to fail about 50% of the scenarios because someone forgot a process or step or even worse, what the scenario calls for doesn't even exist in the system. I believe someone got very rich on the back of the PA taxpayers and did not deliver a workable system.

I'll try to be more diligent on my blogging.

Busy Week

Sorry I've been gone for a couple of days. It has been a very busy week. I am going to Harrisburg for 5 weeks to do some testing of an update to our computer system at work. So I had to make sure my caseload was caught up and any loose ends were taken care of. Add to that my wife having a severe migraine headache on Wed and spending 7 hours in the ER till 2:30am Thursday and getting up for work at 6:00am made it just that much more special. I've been working this caseload for almost 5 years and this is the first time I have contacted every client in only one month and taken care of all their needs so I didn't leave work for someone else to do in the next 5 weeks. I also had a couple new cases to open and take care of before I left. For those who are familiar with my job, it usually takes 45 to 60 days to open a case and another 30 to get services started. The case I opened this week I took through the entire process and started the services in days so the clients would not have to wait. One in particular reminds me why I love my job and my clients. A previous client called on Tuesday and advised me he needed a new power wheelchair and he could not afford the insurance co-pay which could be a couple thousand dollars. I told him I would get the paperwork started that day and he could sign the papers the next day and I would contact the wheelchair provider and advise them I would be helping in the case. In 3 days I opened the case and made arrangements for the wheelchair delivery within the next month. If anyone has been through the process of getting a new power wheelchair before, you know it can take 6 to 9 months to get the new chair. Today I got a call from the client and he thanked me and told me he just got a call from the provider telling him he will get his new chair in 2 weeks because of the work I did. He said I was a magician with a magic wand. This is what makes my job great, knowing I am helping people and making a difference. The week was busy but very rewarding.

Disability Part 4

I saw the "knee specialist" this morning. I was informed my L knee is so severely affected by arthritis and from being locked for 33 years a knee replacement would not help in any way. He said even with a replacement the knee would not be able to move any more then it does currently, which is 5 degrees of motion. He suggested I have the knee fused which consists of opening the knee up, removing the ends of the tibia and femur so as to form a solid fit between them, then to attach 2 plates to either side until the bones knit together. He assured me this would stop the constant pain due to the jagged bones rubbing together all the time. When I suggested an amputation he stated that would be extreme and he would not rule it out but he would have to do the fusion first and see how that goes. I then asked if he could do Arthroscopic surgery on the R knee at the same time he stated it would probably not help since that knee is also "too arthritic" for a scoping to help and he suggested I might think about a replacement for that knee. We then discussed how hemophilia and HIV would impact the prospect of surgery. He advised me he has worked with hemophilia before and works very closely with my hematologist. I would have to be hospitalized for about a week before the surgery to get my factor levels up to 100% and then I would be in the hospital for another 2 to 3 weeks for follow up to make sure I am not bleeding. As for the HIV he seems to think since I am a "long term survivor" without meds and my numbers are good I probably am one of the people with the genetic mutation against HIV and it probably will not be a problem for infections any more then someone without HIV.
Well, I have a lot to think about and discuss with my wife, my hemophilia and HIV doctors, work, and do some research. If I do this then it probably will not be until late this year or early next year.

Couch Potato

I spent the day doing nothing in particular. I watched 2 rugby matches, the Penguins beat the Flyer's, a movie "Elizabeth the Golden Age," and surfing the web. Both rugby matches were close and very good although my favorite team, the Crusaders, lost with 1 second left. Sid the Kid was amazing to watch today and it was appropriate for him to score the winning goal against the Flyer's. "Elizabeth the Golden Age" was a decent movie with Kate Blanchett as Elizabeth I. Sometimes it feels good to do nothing. Hopefully I can be more useful tomorrow and get some stuff done.

Disability Part 3

I went to the Orthopedist yesterday about my R knee. First thing I want to say is they were very efficient at this Doctors office. I didn't wait more then 5 minutes between each person I saw. From the Receptionist to the Medical Assistant, to the X-ray Tech, to the PA, to the head Orthopedist, they don't let any dust settle in this office. Well, the PA looks at my knee and determines I have pretty bad knees (go figure). Next the Doctor comes in sits down and tells me "your knees are in really bad shape" (duh, tell me something I don't know). He then begins to discuss my L knee as if that is why I'm there. When I point out I want something done with my R knee he tells me my L knee has a better chance of success. He tells me the x-rays show I have no cartilage, senovial lining or any thing much in my knees except ragged bone scraping against ragged bone (yippie, sounds like fun). He admits to me he is out of his league with my knees and he wants me to see his partner who is a knee specialist and wants me to come back in a month or so. I tell him that's not possible because I will be out of town on business for the until April 6th. He then proceeds to ask me to wait while he pages his partner who is in surgery at the moment and he will get back to me. Apparently I interrupted someones surgery because the guy came back 5 to 10 minutes later and asks if I can come in first thing next Tuesday to see the "knee specialist". Needless to say I will be there bright and early next Tuesday to discuss my options which consists of bilateral knee replacement, L knee replacement and R knee fusion, but I'll "be stuck with a stiff leg that sticks out" (just like now you mean), or L knee replacement and R above knee amputation (my idea) which the Doctor thinks is "extreme". Please remember all these options are complicated by severe hemophilia and HIV.
To be continued....

Best Friend

This is Billy, aka - Bilbo Baggins. He is a 5 year old Boarder Collie and my best bud. We have been inseparable since he was small enough to fit in my hand. He was found abandoned on the side of the road by my sister-in-law when he was no more then 4 weeks old. She was going to take him to the pound and called my wife and asked her if she would take him. My wife said no but when I saw him it was love at first sight. The first night I brought him home he slept on my head and it seems he can't sleep unless he is touching me either curled around my feet or with his head on my shoulder or chest. My wife insists Billy tries to keep us apart. He has been known to get between us when we are sitting together and tries to pull our hands apart when we hold hands. I think he believes he owns me and I swear he understands every word I say. He also is the smartest dog I have ever known. I know he understands at least a hundred words or more including the names of every animal toy in the house. He also is very expressive and can make his wishes known to both me and my wife.

Political Rant

I can't believe Republicans are taking their opposition to the stimulus bill as far as they are. There are some Repub Govs who are seriously thinking about turning down the stimulus money for their states. They don't care how many people they hurt or how much pain they cause as long as they think they are going to get some political clout out of it. It seems they are hoping President Obama fails no matter how it hurts the country or American people. It is more important for their ideology to be right then for the country to get better. I have been a political independent my entire adult life but the Repubs are pushing me closer and closer to the Dems because of the Repubs strict adherence to their ideology rather then whats best for America.

Disability Part 2

Being a teenager with a fused knee was traumatic to say the least. The statement "kids can be cruel" is an understatement. I was ostracized, picked on, and made fun of by a lot of kids and even friends who could not understand or empathize with my disability. I grew up fast because of this and today I believe it makes me an understanding person and a very empathetic counselor. I also have many dreams of walking, running, climbing stairs and especially riding a bike in which my knees are "normal."
After 33 years of living with bad knees I need to discuss my options with the Orthopedist. I am tired of the pain and discomfort and I am seriously thinking about asking the Orthopedist to remove my R leg above the knee at mid-thigh. I can then get a good prosthetic that will allow me to walk, climb stairs, sit, and ride a bike again. While I understand I will still have ghost pain and discomfort in the removed knee the pain in my back and other leg will decrease due to better body mechanics.
To be continued.....

Disability part 1

On Thursday I have an appointment to see an Orthopedist about my fused R knee. It has been very painful lately and it has been interfering with sleep and work as well as almost everything I do. The knee became fused when I was 12 years old and I had a severe bleed into that knee and the doctors put a cast on the knee for 3 months. When the cast was removed the knee was fused.
To be continued.....

HIV Gene Therapy

A new gene therapy trial has shown treating HIV patients with blood stem cells modified to carry a molecule called OZ1 has which blocks HIV from reproducing has the same effect as the HAART treatment but is a one time treatment rather then daily for the rest of a patients life. The doctors are quick to point out the patients will still need to be followed closely and may need follow up treatment's if the HIV virus starts to reproduce again. Remember this is only one research program and will have to be reproduced a few more times and in bigger samples to be considered as a realistic treatment option.

Rugby Time

I am in hog heaven. Super 14 rugby started today and I have been watching match after match. I woke up this morning and immediately got online (since that is the only place in America where you can get world class rugby.) I watched my favorite Super 14 team the Canterbury Crusaders play a hard won match against the Waikato Chiefs. For those who don't follow rugby these are New Zealand teams, the Crusaders in Christchurch and the Chiefs from Hamilton. In my opinion the best rugby in the world is played in New Zealand where the greatest team in rugby, the New Zealand Allblacks, are from. Super 14 rugby is made up of teams from New Zealand (Canterbury Crusaders, Auckland Blues, Waikato Chiefs, Wellington Hurricanes, and the Southland Highlanders), Australia (Australian Capital Territory Brumbies, New South Wales Waratahs, Queensland Reds, and the Western Force), and South Africa (Natal Sharks, Cape Stormers, Pretoria Blue Bulls, Free State Cheetahs, and the Lions not sure where they are from.) Usually the national teams are made up of players from these teams. Again in my opinion these three nations have the best rugby with New Zealand number 1. There are those who will argue that some teams from Europe are the best but when you watch these southern hemisphere teams play they bring more intensity and verve to the game and usually outclass the northern hemisphere teams. Well that's enough for now and back to the great game.

Funny thing happened

I was working in my yard today cleaning up after the big wind storm and cutting back some bushes when I found a pair of brass knuckles. I appears someone threw them in my bushes as they were going by on the road. I called the police to report them since there was a riot and stabbing behind my house a couple months ago and thought maybe these were related in someway. 2 cops cars showed up in about 20 minutes and parked in front of my house for a half hour or so. I know I'm going to be the talk of the town now.

HIV Cured???

News out today about an American in Germany who had a bone marrow transplant for Leukemia. Appearantly he was HIV+ before the procedure and the Doctors specifically looked for a donor who had the CCR5 delta 32 mutation which 1% to 3% of the population has. This mutation seems to be resistant to most forms of HIV. Well 2 years since the procedure and this guy has no sign of HIV. Could this be the elusive cure the world has been looking for? The Doctors said this is a start but is not a possible cure since a bone marrow transplant is very difficult and dangerous and not an option for everyone.

Ranting

Maybe it's just me, but I think people should give President Obama a chance to fix what the previous administrations have left for him. I have seen some blogs and comments that do nothing but attack him and wish him failure but give no answers or suggestions but the same old thing. These are the same people who would attack and denounce anyone as unamerican or not patriotic who questioned or negatively regarded the last President. Well, I don't think these people are unamerican or not patriotic for I believe as Americans we ALL have the right to express our feelings and/or displeasures, at least give the guy a chance, don't just automatically attack.

Blog Virgin

Well, here I am. I've been reading others blogs and leaving comments for a while so I figured I'd start my own blog.

I'm not sure how to proceed but I will do my best.