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Archive for the ‘Transplant’ Category

Prior to having a double lung transplant (the biggest surgery any person can have) my wife and I used to eat organic here and there. You know just to say we ate organic and try to trick our brains to think we did something healthy…not that we ate unhealthy a lot. However, after surgery we were told by the doctors and nutritionist to eat as much organic as possible.
Bottom line is they were trying to keep out any pesticides or foreign chemicals that would hinder the healing process or mess with all my medicine . We took heed to that suggestion, because the last thing you want is to find out something you ate made your body sick after having a $3M surgery!
We all know that eating healthy costs more. Organic foods are almost double what the non-organic food costs. Like bananas, organic from our store goes for $.99 lbs, non-organic is $.59 lbs. Being that potassium was and is needed for me, we buy a lot of bananas. We also know that organic foods don’t last as long, the bananas I get can go bad after about 4 days, non-organic about week. So we buy only 4 or 5 bananas at a time. I bet by now you’re tired of me saying bananas! OK moving on.
The cost of organic is higher simply because the crops don’t yield as much and the farmers tend to have a lot smaller crops over all. Have you ever seen a fruit or vegetable grove that goes for miles? Those aren’t organic and they have to use a plane in some areas to cover the crops in chemicals to keep the bugs away. Certified Organic farmers don’t use those harsh chemicals. The bugs that attack the organic farms are smarter, since they don’t eat chemicals, where is the other bugs that eat the chemical sprayed foods are more like the hippies from the 60’s. Lol just kidding
The same goes for eggs, milk, meats and packed foods. The choice to stay with this diet is flippen expensive, but the trade off is, knowing you’re eating better. For me, my body has been healing up well now. Not to say organic was the main factor, but I can say it certainly helps. By the way, organic milk tastes like it did when I was a kid.

Why am I posting this; it is because of the scare of listeria on the apples. Apples people! “An apple a day keeps the doctor away”. Hmm, not if it has a deadly bacteria. I don’t think I’ve heard of anyone getting sick from organic foods. But, it could happen. We wash all our fruits and vegetables prior to eating them, and so should you, regardless of where it comes from.

The best (in our opinion) fruits and vegetables come from a locally owned, organic farm. Because they know if they don’t produce good produce (did you see what I did there) they might find some of their cows tipped. Just kidding again. That actually hurts the cows, so don’t do it.

In closing, we all have choices to make when shoveling food in our pie holes, so do what you feel is right for you and enjoy!

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Hello Again! We wanted give you all an update on the last four months of medical and physical, not the turn your head and cough type of physical, but our physical location.

 In February we started a fund raising site called, www.gofundme.com/philipwebb  to also raise funds from friends and beyond, help pay for medical bill before and after transplant, plus to help us move out of our apartment in downtown L.A. With lots of great help from the family and friends we had a great start to the fund raising.

In mid-March I was hospitalized for a spot of pneumonia and spent two weeks on IV meds. Then in April I had a ton of tests done for the Transplant to update me status. My national transplant number went up slightly, which is good and bad. I don’t know for sure how much longer I have to wait or how many people are in front of me. So the wait continues!

Unfortunately, a few days ago I had an episode of coughing up a lot of blood and that automatically gets me a vacation in the hospital! I still feel good, but they need to monitor me and make sure it’s not going to turn into something worse. We’re hoping it’s not a full two weeks in here, oh yeah I’m writing this from the hospital, and hope I can be out very soon.

 

Thank You and God Bless

 

keck 5.17

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This is me with my kitty named Kiki, as in kitty kitty. She likes to cuddle up next to me and hug my arm.

This is good medicine!

We’re still in need of donations to help for transplant.  Will you help, go to http://www.gofundme.com/philipwebb

Thank you and enjoy life!

image

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Hello again.

This is just a quick post to try and get the word out about the online fund raising site.
http://www.gofundme.com/Philipwebb

We’re still a long way to go to help us with medical costs and living expenses.
Right now we are in need of moving out of our current apartment because it is not suitable or practical for me to be able to recover. Also it’s hard for me to go up and down all the stairs now and the air quality isn’t the best, being on a major road and near a highway.

Won’t you help and pass this along.  It will truly be a blessing!

Sincerely and God Bless,
Philip & Tinamarie

image

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As our needs have arise, we felt the need to open up a fund raising site that will hopefully bring us to less stress during this next chapter in our lives.

Here is a link to the fund site, feel free to share!

http://www.gofundme.com/PhilipWebb

thank you.

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Dying to Live

This is an expression that I have thought of many times in my recently. It’s almost an oxymoron in sorts as it seems people are dying to live every day, but certain things are failing them. In my realm the big problem is Cystic Fibrosis (CF). The disease I was born with and that affects just about…no it affects every organ in my body not to function normally, especially my lungs. And for most or all of the people born with CF, about 40,000 people in the US (but I think that number is low), have issues with their lungs. This disease has claimed the life of so many people, most of them young, too young. I’m 44 years old and I’m considered “old” for having CF. Do you know how much I hate to hear that? Most people in their 40’s, without CF, would say they don’t feel old or they still have a lot of living to do. For people with CF to reach 40 is a huge milestone, which sucks! This day in age with all the technology and money floating around, CF should stand for Cure Found. Great strides have been made in the past ten years on CF, with new drugs and devices to help people cope longer, but kids and adults are still dying every day from this nasty disease.

If CF researchers had half of what is donated to fight breast cancer or aids or even MS, I bet this disease would be put away for good. Perhaps it would be like Polio, the disease that killed and crippled tens of thousands, but now there is a shot you get as a kid and boom, hardly no one gets it any more. Not to ever put down people that have these other diseases, trust me, my mother went through breast cancer and survived, so I know how hard it is. But everyone knows about breast cancer and they have made huge leaps to find a cure and better medicine. I’m just saying the money that pours in for research for some of these other diseases is scary, compared to what little attention CF gets.

The one thing I hate to hear or read is people committing suicide or even overdosing. We all say, ‘No way, I can’t believe it, why?’ when we hear of a celebrity dying of an OD, like Philip Seymour Hoffman or Cory Monteith from Glee or a possible ‘mistake’ from too much prescription drugs, like Michael Jackson, Heath Ledger and the many others. Then there are the people that commit suicide and that just boggles my mind. Some may think, Celebrities have it all, money, fame and so on, but they are unhappy. My uncle Paul, whom I was very close to growing up and into my adulthood committed suicide. He wasn’t a celebrity and didn’t get national news, but it affected our whole family and his friends. To this day I still ask why did he do it. This brings me to my title of this blog, Dying to live. Most people with CF are dying to live. We struggle every day to breath and have a ‘good’ day, where we get to go out and have fun or even laugh. There’s a 14 year old boy who can’t go run around with his friends because he can’t breathe, there’s a 22 year old young lady who can’t plan a wedding because she’s in the hospital for the third time this year and it’s only February. There’s a 44 year old man that is using oxygen, listed on the transplant list typing this blog. We all have one thing in common, CF and we want to live!

This disease needs to be knocked out, put up on the shelf, checked off the list and flat out killed. The awareness of this disease needs to be spread around so others know what it is, what it does and how to help. We all have our issues in life, but there is always someone who is a little worse that could use a hand. Take a leap and help a huge population breath and live better, donate to the cure of CF.

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Dear Family, Friends, Colleagues, Colleagues of Colleagues, Friends of Colleagues and Misfits,

 

            That should cover everyone and if not, feel free to add your name above! First of all, thank you for reading this long, but valuable letter. I’ve never had to write such a letter and I Pray I will never have to in the future, so bear with me as I try my best to put this together.

            For those of you that don’t know me, I am Philip Webb, I have Cystic Fibrosis (CF. For more information on CF you can check out www.cff.org) and I am now 44 ½ years old, married to Tinamarie and have 3 adopted children. I’ve been pretty healthy most of my life, however with time and progression of this nasty disease my lungs have gotten together and decided (I wasn’t notified of the meeting) to give in their resignation. The past four years I’ve seen great loss in my lung capacity, from 60% to now only about 30%, for all those who failed math, that’s about a 50% loss and I’m on oxygen at night and with exercise. What does 30%  mean, well here’s what it’s like; try closing your mouth, plugging one nostril all the way and the other nostril half the way…ha, you tried it didn’t you? Seriously, I’m guessing that’s what it’s like to a “normal” person. As my health has declined over the past four years I’ve seen more doctors and been in more hospitals then I even dare to count, but one thing was the same with each doctor, they all said, Transplant is in the future.

A little over a year ago, Tinamarie and I started talking about Transplant. Up to this point I have not considered transplant. However, my heart and my lungs have changed my mind. Therefore, Tinamarie and I have tried three different hospitals and doctors trying to find the right fit for my health. Finally, as of March 2013, we found Keck Medical Hospital at USC here in Los Angeles. They have a very special CF Team along with a unique hospital and they do lung transplants here at the hospital. Matter of fact Dr. McFadden, one of the transplant surgeons was name Surgeon of the year 2011. Those are the kind of things that made us feel comfortable. Plus, the warm, coastal weather here is Great for me.

In October 2013, as I was admitted for yet another virus acting up in my lungs, my CF doctor asked is now the time I would like to start the process of being listed for a double lung transplant. I thought, “Duh, I can’t breathe”, but I really said was, Yes. With that, the evaluation started. They took roughly 30 tubes of blood, apparently they have a vampire on staff, because OMG was that a lot of blood. They tested my heart’s strength and made me walk for 6 minutes while being monitored. The toughest part of all this, yes the needles hurt, but the 6 minute walk, for someone having trouble breathing, geesh that sucked! After the evaluation was completed, the 25 person transplant team met and discussed my case. There was some concern about me complying with the treatments after transplant, because they didn’t know me. So, I had to prove to them I was worthy, got that Done. The team met again and as of Jan 24, 2014 at 1:30 pm, I was officially list for a double lung transplant.

I’ve been asked; why both lungs, why not just one? Because both lungs are infected with CF and they both have to go. I also get asked; will I still have CF after transplant. Yes, CF is a defect in a gene that does not produce the correct proteins for the body, but my lungs are the worst things about me, well my insides anyway.

Now on to the hard part. As most of you know the cost for any hospital stay is large, my average stay in the hospital in the past year has been 2 weeks, with a cost of about $155,000.00 and roughly $1,200.00 of that is my cost after insurance. I have been in the hospital roughly five times in the past year. You can do the math! Needless to say we don’t have that kind of money at this time to cover all of that. Dr. MacFadden told me that a double lung transplant is the most severe surgery anyone can have. They have to put you on all kinds of ventilators and machines to keep you a live while they transplant one lung at a time, the body can’t survive if they removed both lungs at the same time. Unlike a liver or kidney transplant, which can have a living donor ( for more info on living donors as seen on CNN and several other networks, check out www.matchingdonors.com) So, I took to heart, that this is not just a simple nose job, but it’s also one of the most expensive surgery’s.  If you know me, I go all the way, I don’t do things half-assed. Ha. Like the time I finished an 18 month college course in 12 months or the time I was listed for Social Security Disability in less than 3 months (fastest ever) or the time my friends and I stole $486 worth of food from a store for a bbq…ok T.M.I. getting off track here.

Anyway, Tinamarie and I haven’t hit the lottery yet, so we are reaching out to our loving, caring and generous family and friends to help with the cost of medical as well as living expenses. Currently, we are apartment managers and get paid only with rent reduction. To be honest, I haven’t been able to hold up my part of the bargain, Tinamarie runs this place, as well as does all the physical cleaning and renting of the units. She also has been my in-home nurse, my mental supporter (that’s a job in itself) and has maintained our jobs here. However, we will not be able to keep this job once I have my transplant, so we are currently looking to move into a better, more suitable place to live.  As you can see there is a lot that has to be considered with a transplant and we are determined to make them all happen, so I can live a much longer, happier and healthier life for my awesome wife, my three beautiful kids, family members and mostly for myself (is that selfish?).

Any amount of donation is always welcomed and most appreciated. We know it’s not a great economy and things are tough for a lot of us, including us, so we thank you deeply for any help.

My brother Kevin Webb has set up a special account for this sole purpose and will manage that account, because that’s what he does for a living. You can contact him for additional instructions.

 

 – Subject Line: Transplant

webb88@verizon.net

 

I hope you’re able celebrate with me in my pursuit of new lungs. As always I welcome Prayers for new lung, a long, happy life and may you all be Blessed in return.

 

Thank you again from the bottom of my ‘lungs’.

 Sincerely,

Philip & Tinamarie

Image Myself & my wife Tinamarie 2012

Image My three kids last fall.

 

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