I went to a memorial service the other day, Cleo lived 17 years after her transplant, she inspired and gave hope to those both in pre and post transplant. It was good to see so many turn out on short notice too remember a person that gave back to those that gave her life. I had the opportunity to speak with her son Richard, who I had met earlier at one of the Holiday/Christmas parties. He was moved by the fact that so many came out to tell him what Cleo meant to them.
It also got me thinking of my own mortality. I am now just over two years post transplant, 50% of those with lung transplants make 5 years. Who will miss me when I pass? Sure my immediate family, but even then there seems to have been some distance that has come between us. I have no real close relationships at this time, have not allowed myself to grow close to any women. Almost if I am damaged goods - though I am determined to live my life and enjoy each day given by this selfless act from someone I never knew.
Sunday, October 25, 2009
Wednesday, October 21, 2009
UCSD and their Post Transplant Program
So now it has been a bit over two years since my transplant. After our Lung Transplant Support meeting several of us started discussing why we chose UCSD, other facilities do more transplants. For me it was the fact that UCSD had what looked to be a complete program, there was Pulmonary Rehab to start with, that got you able to survive the transplant and taught you survival with your pulmonary disease. Meeting with the surgeons, and seeing their credentials, (along with the fact that the program in Phoenix that was starting up had all UCSD personnel in it) and their success rate. Then there was the post transplant program, Dr Yung and his staff managing and monitoring your health after the operation was completed. All throughout the process there is the Transplant Support Group, which is run by Karen Matthews (UCSD Social Worker), and is for both pre- and post transplant patients.
We meet twice a month during the day (1st & 3rd Mondays), this meeting is for the patients only. Post transplant patients can counsel pre transplant patients, and relate experiences to one another. Notifications of upcoming events, and health advisories are given. Care givers have their own meetings. Every other month there is a combined evening session for patients & caregivers with a speaker on relevant topics.
We meet twice a month during the day (1st & 3rd Mondays), this meeting is for the patients only. Post transplant patients can counsel pre transplant patients, and relate experiences to one another. Notifications of upcoming events, and health advisories are given. Care givers have their own meetings. Every other month there is a combined evening session for patients & caregivers with a speaker on relevant topics.
Friday, October 16, 2009
Cooking
I have always enjoyed cooking, my mother and grandmothers used to say if you enjoy eating then you need to learn how to cook. Cooking is not hard; it does take time to ‘play’ with various recipes until you get things to your own individual taste. Way before I became ill, friends would always seem to show up when I’d be cooking a big meal, holidays were always crowded, first at my house on Schooley’s Mountain (NJ), then at my house in Phoenix. When I came to San Diego it changed a bit, I was competing with my sister for the holiday meals, and still do not have a group of friends as I did back in Phoenix or NJ.
I still laugh about the misconception that Thanksgiving & Christmas turkey meals are hard to do. The biggest thing (to me) is allowing enough time for the bird to cook (I always stuff the bird, it gives the stuffing more flavor and keeps the bird moist, and get a big bird – leftovers are not that hard to dispose of). Choosing the sides and desserts was often harder than making the meal – there are those mandated by family tradition – mashed potatoes, creamed onions, candied yams/sweet potatoes, cranberry sauce…. and then their were favorites such as pecan pie, pumpkin cheesecake (thank you Mara). Whatever the menu, I always try to make extra, just in case someone brings someone, or a friend just happens to show.
In recent times, I’ve started cooking a fair amount of Italian meals, don’t know why, just kind of happened. Puttanesca (spaghetti sauce rumored to have been what the cooks would make for the street girls from what was laying around the kitchen), Veal Scaloppini with Mushrooms in wine, Osso Bucco to name a few. They are not hard to do, and actually do not take all that long to prepare. And cost a hell of a lot less than going out for the same meal!
Here is my recipe for Puttanesca (for 2 with leftovers)
Ingredients:
2 boneless, skinless chicken breasts sliced
crushed garlic (about 2 cloves)
olive oil (bout 1/2 cup)
two cups of tomatoes (about 6-8) cubed
bunch green onions sliced
capers (2 tablespoons)
anchovies (a 4 oz can)
basil & oregano to taste
crushed red pepper to taste
black pepper to taste
tomato paste (small can)
black olives (can sliced 8 oz.)
Cook sliced chicken in 1/4 cup olive oil and 1 clove crushed garlic till pink is gone. Add rest of ingredients and simmer for 20 minutes over medium flame (burner). Serve over pasta.
I still laugh about the misconception that Thanksgiving & Christmas turkey meals are hard to do. The biggest thing (to me) is allowing enough time for the bird to cook (I always stuff the bird, it gives the stuffing more flavor and keeps the bird moist, and get a big bird – leftovers are not that hard to dispose of). Choosing the sides and desserts was often harder than making the meal – there are those mandated by family tradition – mashed potatoes, creamed onions, candied yams/sweet potatoes, cranberry sauce…. and then their were favorites such as pecan pie, pumpkin cheesecake (thank you Mara). Whatever the menu, I always try to make extra, just in case someone brings someone, or a friend just happens to show.
In recent times, I’ve started cooking a fair amount of Italian meals, don’t know why, just kind of happened. Puttanesca (spaghetti sauce rumored to have been what the cooks would make for the street girls from what was laying around the kitchen), Veal Scaloppini with Mushrooms in wine, Osso Bucco to name a few. They are not hard to do, and actually do not take all that long to prepare. And cost a hell of a lot less than going out for the same meal!
Here is my recipe for Puttanesca (for 2 with leftovers)
Ingredients:
2 boneless, skinless chicken breasts sliced
crushed garlic (about 2 cloves)
olive oil (bout 1/2 cup)
two cups of tomatoes (about 6-8) cubed
bunch green onions sliced
capers (2 tablespoons)
anchovies (a 4 oz can)
basil & oregano to taste
crushed red pepper to taste
black pepper to taste
tomato paste (small can)
black olives (can sliced 8 oz.)
Cook sliced chicken in 1/4 cup olive oil and 1 clove crushed garlic till pink is gone. Add rest of ingredients and simmer for 20 minutes over medium flame (burner). Serve over pasta.
Thursday, October 15, 2009
Getting back in shape
Immediately after release from the hospital, I found myself quite weak. Yes, now I could breath, however being laid up for a hospital stay robs you of muscle tone and endurance. I started exercising with light weights and using the treadmill in the community gym daily. It became an ingrained routine, rise, exercise, then start the day.
Personally, I recommend getting a dog as soon as you are able – going for the twice (if not more) daily walks is a good way to regain the lost muscle tone and endurance. Having something dependent upon you is also good psychologically - as opposed to being reliant upon others as had been in my case.
Hula is my pup, I rescued her at Helen Woodward (a shelter here in San Diego). She was 11 months old when I got her. She is the first dog (and I’ve had a few) that I have ‘crated’, she became part of my life quickly, our walks in the morning are now approximately 2 ½ miles each morning. We do shorter walks in the evening.
I’ll admit (sadly) that I am not ‘hitting the gym’ as often as I’d like, but my life has gotten active again that I feel I make up for the lack of weight lifting and static exercises by doing ‘chores and yard work’.
Personally, I recommend getting a dog as soon as you are able – going for the twice (if not more) daily walks is a good way to regain the lost muscle tone and endurance. Having something dependent upon you is also good psychologically - as opposed to being reliant upon others as had been in my case.
Hula is my pup, I rescued her at Helen Woodward (a shelter here in San Diego). She was 11 months old when I got her. She is the first dog (and I’ve had a few) that I have ‘crated’, she became part of my life quickly, our walks in the morning are now approximately 2 ½ miles each morning. We do shorter walks in the evening.
I’ll admit (sadly) that I am not ‘hitting the gym’ as often as I’d like, but my life has gotten active again that I feel I make up for the lack of weight lifting and static exercises by doing ‘chores and yard work’.
Sunday, October 11, 2009
Health Insurance
Now the thing about health insurance is, they are a for profit organization, not a savings plan. Yes you have and are paying those loverly premiums monthly, and one would assume that therefore they, the insurance company, would be there to assist you in your hours of need. Think again.
My case in point, when I was employed with W.W. Smith Construction, one of the perks was that Bill Smith (my employer) not only paid my premium, he covered the deductible as well. I know, unheard of in these days & times, then again he was that sort of person. We were insured through HUMANA, our policy had a $5,000,000 lifetime cap, and you needed to be preapproved in order to qualify for the transplant program. I went through the entire preapproval process, and HUMANA has a special division of their company just for transplant patients.
About 10 months after my transplant I received a call from Bill’s office telling me that they were being forced to terminate health coverage for the employees. Seems that HUMANA was now raising his rates $2600 per month because of claims paid on his account (I had used $273,586.41 of the five million benefit).
I was then put on MediCal, as with my preexisting condition all private insurance was priced through the roof. Medical in their infinite wisdom assigned me a monthly spend down of $864 (this is out of pocket expenses), as I have so much income (my SSI disability). I have since qualified for Medicare (being disabled with lung disease). I was told to consider a ‘Part D’ plan to cover medications in addition to the Medicare Medical coverage I have. However once you do the math, I would be spending a lot more on my medications with that coverage (as I would then lose my eligibility for patient assistance) than without. Catch 22 revisited.
Dealing with MediCal has retaught me the meaning of patience. Calling the local office with a question will typically get you 45 minutes in the phone tree, after repeatedly answering the same questions you will get a case worker who will then ask the same questions again. After going through your case history (workers are assigned on a random basis – each time you call), you are then told that you should call the state office in Sacramento, who will then refer you back to the local office, and you begin again.
My case in point, when I was employed with W.W. Smith Construction, one of the perks was that Bill Smith (my employer) not only paid my premium, he covered the deductible as well. I know, unheard of in these days & times, then again he was that sort of person. We were insured through HUMANA, our policy had a $5,000,000 lifetime cap, and you needed to be preapproved in order to qualify for the transplant program. I went through the entire preapproval process, and HUMANA has a special division of their company just for transplant patients.
About 10 months after my transplant I received a call from Bill’s office telling me that they were being forced to terminate health coverage for the employees. Seems that HUMANA was now raising his rates $2600 per month because of claims paid on his account (I had used $273,586.41 of the five million benefit).
I was then put on MediCal, as with my preexisting condition all private insurance was priced through the roof. Medical in their infinite wisdom assigned me a monthly spend down of $864 (this is out of pocket expenses), as I have so much income (my SSI disability). I have since qualified for Medicare (being disabled with lung disease). I was told to consider a ‘Part D’ plan to cover medications in addition to the Medicare Medical coverage I have. However once you do the math, I would be spending a lot more on my medications with that coverage (as I would then lose my eligibility for patient assistance) than without. Catch 22 revisited.
Dealing with MediCal has retaught me the meaning of patience. Calling the local office with a question will typically get you 45 minutes in the phone tree, after repeatedly answering the same questions you will get a case worker who will then ask the same questions again. After going through your case history (workers are assigned on a random basis – each time you call), you are then told that you should call the state office in Sacramento, who will then refer you back to the local office, and you begin again.
Friday, October 9, 2009
Returning to work...
Returning to work, well if my doctor had his way I believe he would have all of his transplant patients retired, or at most working from home. Working means exposure to the outside world – disease, illness, dirt…. All good things he wants us to avoid. However, in May of 2008 he gave me his blessing to return to the workforce.
I had not worked since my hospitalization in 2007 although Bill Smith did keep me on the books (and paid my health insurance until Humana raised his premiums for doing so by $2500 a month). I’ve worked construction in one form or another since high school, trading in my toolboxes in 2004 to work in the office. I still enjoy the industry, its people and the sense of accomplishment with a projects completion.
I found a position as a Project Engineer with a smaller general contractor out of Carlsbad, who agreed to take me on a trial basis for 30 days. He would pay me $800 per week, and after the initial 30 days I would get $60,000 annual and my benefits. Being a trusting soul, I believed him, and started my position June 1.
By mid July I was becoming concerned. He was still paying me my trial $800 per week (under the table), and had made no effort to get me the medical coverage promised. I was not only doing my Project Engineer duties that we had discussed, I was also his Site Supervisor and Project Manager. By issuing him an ultimatum, he finally started paying what he had originally promised, however he was still doing it under the table, though he promised (again) that he was setting up with a payroll service and I would be ‘legal’ soon.
The camels back was broken towards the end of August, when he instructed me to order non approved materials for a job. Refusing I informed him that ‘as my name was on the submissions’, only those materials would be used unless he obtained the clients permission ahead of time. After listening to him rant and rave how I was an ungrateful SOB, not appreciating ‘all he had done for me’, I walked to my car, retrieved all of the blueprints and documentation for the jobs I was working on and turned them over to him. I left him standing in the parking lot with a lost look on his face. He called for the next two weeks promising me the moon if I would return (seems everyone else quit at the same time).
I have been unemployed since then, the longest period of time in my life. However I am determined that I will not return unless I can find a reputable company that will treat me as I should be treated - as a professional.
I had not worked since my hospitalization in 2007 although Bill Smith did keep me on the books (and paid my health insurance until Humana raised his premiums for doing so by $2500 a month). I’ve worked construction in one form or another since high school, trading in my toolboxes in 2004 to work in the office. I still enjoy the industry, its people and the sense of accomplishment with a projects completion.
I found a position as a Project Engineer with a smaller general contractor out of Carlsbad, who agreed to take me on a trial basis for 30 days. He would pay me $800 per week, and after the initial 30 days I would get $60,000 annual and my benefits. Being a trusting soul, I believed him, and started my position June 1.
By mid July I was becoming concerned. He was still paying me my trial $800 per week (under the table), and had made no effort to get me the medical coverage promised. I was not only doing my Project Engineer duties that we had discussed, I was also his Site Supervisor and Project Manager. By issuing him an ultimatum, he finally started paying what he had originally promised, however he was still doing it under the table, though he promised (again) that he was setting up with a payroll service and I would be ‘legal’ soon.
The camels back was broken towards the end of August, when he instructed me to order non approved materials for a job. Refusing I informed him that ‘as my name was on the submissions’, only those materials would be used unless he obtained the clients permission ahead of time. After listening to him rant and rave how I was an ungrateful SOB, not appreciating ‘all he had done for me’, I walked to my car, retrieved all of the blueprints and documentation for the jobs I was working on and turned them over to him. I left him standing in the parking lot with a lost look on his face. He called for the next two weeks promising me the moon if I would return (seems everyone else quit at the same time).
I have been unemployed since then, the longest period of time in my life. However I am determined that I will not return unless I can find a reputable company that will treat me as I should be treated - as a professional.
Thursday, October 8, 2009
On a sad note
Another friend has left us. Yesterday Jon E died awaiting transplant of a new lung. I met Jon through the UCSD Transplant Support Group when he and his wife came out from Tucson, where they wintered, they summered in Maine. He loved to fly, he really wanted to get back behind the stick again, however the doctors told him without a new lung that was not possible. Two weeks ago Jon was admitted to the hospital as his home oxygen equipment could no longer support him. For the first time in months he regained color in his face and hands (his fingers were no longer blue). The new drugs they were administering showed promise to correct the pressure on his heart allowing him to remain on the list.
He was to be transferred to a special care facility as it was felt that his needs did not warrant hospitalization. His wife went to several in the area and selected one close by that said they could care for him. They had a special floor for pulmonary cases. However, when Jon was taken, by ambulance, it was determined that this facility would not meet his needs. Jon was returned to the hospital where he expired awaiting a room assignment.
We have lost several people in the last month and a half in addition to Jon. Bob D who was a year and a half out from his transplant, he was another friend who got me back onto the golf course and shared his experiences with me. Chloe who was 17 years out from her surgery and an inspiration to all of us. To me, Jon was the saddest in that he did not get the opportunity to have his rebirth and experience life without assisted breathing. Every day we wake is an opportunity to live again which we would not have had without the generous gift of a stranger.
He was to be transferred to a special care facility as it was felt that his needs did not warrant hospitalization. His wife went to several in the area and selected one close by that said they could care for him. They had a special floor for pulmonary cases. However, when Jon was taken, by ambulance, it was determined that this facility would not meet his needs. Jon was returned to the hospital where he expired awaiting a room assignment.
We have lost several people in the last month and a half in addition to Jon. Bob D who was a year and a half out from his transplant, he was another friend who got me back onto the golf course and shared his experiences with me. Chloe who was 17 years out from her surgery and an inspiration to all of us. To me, Jon was the saddest in that he did not get the opportunity to have his rebirth and experience life without assisted breathing. Every day we wake is an opportunity to live again which we would not have had without the generous gift of a stranger.
Subscribe to:
Posts (Atom)
