The transplant team scheduler called to set up my evaluation appointments!
This call came allot quicker than I thought it would. We will be heading to University of Pennsylvania on Feb 2nd, 3rd & 4th. Apparently the days will be filled with testing both physically and mentally to see how good of a candidate I would/will be for transplant. I was told they look at my support system as well over the period, so Denise will need to be on her game also (get steely and not weepy...LOL). As far as the testing goes it's mostly non invasive (MRI, EKG, etc...) except for the last day. On the third day they do a cardiac catheterization, arterial blood gas and I think a bronchoscopy so none of that will be fun, but no big deal really.
This is an exciting next step towards my goal of a double lung transplant.
Wednesday, December 30, 2009
Monday, December 28, 2009
Transplant or bust...
Well I made up my mind, transplant it is.
Final straw came on Saturday the 26th, I went to Rite Aid to pick up some protein drinks. Upon returning home I had to literally drop the bags outside the door (spilling the contents of course) and sit down. I just could not move enough air to even carry a few items in the house even though I had my O2 on. As I sat there gasping for breath and frustrated at my failure a great clarity came over me (sounds like bullshit, but is true). This is no way to live, having to plan out every action and still not being able to exist with any kind of normalcy (yes I know I have never been normal...). After that event I took a good look in the mirror before showering, reminded me of my weight lifting days, sitting on the bench with 130 pound dumbbells on my thighs staring at the person in the mirror. Looking into my eyes (through my eyes) and having the nagging feeling of knowing it will be tough if not impossible to push the weight and that it will hurt the whole time, but full well knowing the weight needs to move in order to reach my goals. I will either fail or succeed, but know I will leave nothing in the tank its all or nothing now. I have pushed myself beyond its limits many times with success and I know it's time to do it again. So I guess I should crank up the music and psych myself up for what is to come....and move that weight!
So now my energies move to planning out how best to do this with minimal impact and preparing for what is to come, one way or the other. Being a goal oriented person I work much better in this mode anyway.
Final straw came on Saturday the 26th, I went to Rite Aid to pick up some protein drinks. Upon returning home I had to literally drop the bags outside the door (spilling the contents of course) and sit down. I just could not move enough air to even carry a few items in the house even though I had my O2 on. As I sat there gasping for breath and frustrated at my failure a great clarity came over me (sounds like bullshit, but is true). This is no way to live, having to plan out every action and still not being able to exist with any kind of normalcy (yes I know I have never been normal...). After that event I took a good look in the mirror before showering, reminded me of my weight lifting days, sitting on the bench with 130 pound dumbbells on my thighs staring at the person in the mirror. Looking into my eyes (through my eyes) and having the nagging feeling of knowing it will be tough if not impossible to push the weight and that it will hurt the whole time, but full well knowing the weight needs to move in order to reach my goals. I will either fail or succeed, but know I will leave nothing in the tank its all or nothing now. I have pushed myself beyond its limits many times with success and I know it's time to do it again. So I guess I should crank up the music and psych myself up for what is to come....and move that weight!
So now my energies move to planning out how best to do this with minimal impact and preparing for what is to come, one way or the other. Being a goal oriented person I work much better in this mode anyway.
Wednesday, December 23, 2009
Decisions decisions....
Well I had my appointment with the transplant pulmonologist and things went well. He thinks I'm a good candidate for transplant since other than the lungs I'm in really good shape. He went over all the available information, the failure stats, what to expect etc.. The ride home was worse than the appointment, stuck in traffic for hours.
Next step is to go for a three day evaluation at Penn. They do many tests over three days and I get to meet with the whole transplant team. The most invasive testing is a blood gas (blood drawn from artery) and a heart catherization. They do the hard tests on the last day so I can go home to heal after sitting around for 6-8 hours after procedure.
After the tests as long as all goes well then I would be listed for transplant. He said since I'm taller it would more than likely mean less time on list (depending on blood type). He stated that most people are transplanted in 3 months to a year. So scary and exciting is all I can say about it really.
I don't know what is the correct decision is, nor does anyone of course. Leaving friends and family behind is the only thing that makes me hesitate. I'm not afraid to die or of the pain they spoke of, but to saddle everyone with the potential loss really sucks. It's tough when you have to make decisions that effect others so deeply.
After surgery I will have to be at Penn a minimum of 3 times a week for the first 12 weeks so would probably get a long stay hotel or an apartment type place. I will have to figure out how to manage the need for support afterwards because someone would have to be with me at all times. Hopefully people would be available in shifts until I would get my shit together. Knowing me it would be as quick as possible. I HATE being dependent.
Next step is to go for a three day evaluation at Penn. They do many tests over three days and I get to meet with the whole transplant team. The most invasive testing is a blood gas (blood drawn from artery) and a heart catherization. They do the hard tests on the last day so I can go home to heal after sitting around for 6-8 hours after procedure.
After the tests as long as all goes well then I would be listed for transplant. He said since I'm taller it would more than likely mean less time on list (depending on blood type). He stated that most people are transplanted in 3 months to a year. So scary and exciting is all I can say about it really.
I don't know what is the correct decision is, nor does anyone of course. Leaving friends and family behind is the only thing that makes me hesitate. I'm not afraid to die or of the pain they spoke of, but to saddle everyone with the potential loss really sucks. It's tough when you have to make decisions that effect others so deeply.
After surgery I will have to be at Penn a minimum of 3 times a week for the first 12 weeks so would probably get a long stay hotel or an apartment type place. I will have to figure out how to manage the need for support afterwards because someone would have to be with me at all times. Hopefully people would be available in shifts until I would get my shit together. Knowing me it would be as quick as possible. I HATE being dependent.
Tuesday, December 15, 2009
Whats the frequency, Kenneth....
Well things are still going better, felt pretty good for the past few days. Only had one occasion of being completely out of breath in the past few days and that was this morning.
Penn transplant team finally got back to me today, it took awhile, but I got registered and set up an interview. I will be meeting next Tuesday with the coordinator and my new specialist Dr Denis Hadjiliadis. I am so glad to finally have a name to research. I have now read several of his published papers and presentations. One I found quite interesting was his slide pack from on the legacy of Hippocrates. Since I have always been a proponent of a sound mind (let the comments begin) in a sound body I really like this historical tie in.
Another not so rosy paper he authored has a few interesting stats. The 1-month, 1-year,
3-year, 5-year, and 10-year survival rates are 92.4%, 80.6%, 65.2%, 53.8%, and 32.1%, respectively, and are statistically better than rates for patients with other diagnoses. It also stated that transplants occurred for 20% of people on the list in one year and 40% in two years
Something to keep in mind when I'm making the decision to do this or not.
I had a Dr appointment with my Endocrinologist today also, my averages and blood glucose was good. My weight is down 13 pounds since my last appointment though. I asked him a ton of questions about appetite stimulants or anything he can do to help me get back some of the weight. He did not have any ideas other than marinol or megace but will talk with his peers. I have tried marinal before (derived from marijuana), megace is progesterone (no thanks don't want boobs) so neither are much help. He did set up a blood testosterone test to see if that supplementation may help, sometimes levels drop in people with diminished respiratory.
So a big day today after several really easy ones....
Penn transplant team finally got back to me today, it took awhile, but I got registered and set up an interview. I will be meeting next Tuesday with the coordinator and my new specialist Dr Denis Hadjiliadis. I am so glad to finally have a name to research. I have now read several of his published papers and presentations. One I found quite interesting was his slide pack from on the legacy of Hippocrates. Since I have always been a proponent of a sound mind (let the comments begin) in a sound body I really like this historical tie in.
Another not so rosy paper he authored has a few interesting stats. The 1-month, 1-year,
3-year, 5-year, and 10-year survival rates are 92.4%, 80.6%, 65.2%, 53.8%, and 32.1%, respectively, and are statistically better than rates for patients with other diagnoses. It also stated that transplants occurred for 20% of people on the list in one year and 40% in two years
Something to keep in mind when I'm making the decision to do this or not.
I had a Dr appointment with my Endocrinologist today also, my averages and blood glucose was good. My weight is down 13 pounds since my last appointment though. I asked him a ton of questions about appetite stimulants or anything he can do to help me get back some of the weight. He did not have any ideas other than marinol or megace but will talk with his peers. I have tried marinal before (derived from marijuana), megace is progesterone (no thanks don't want boobs) so neither are much help. He did set up a blood testosterone test to see if that supplementation may help, sometimes levels drop in people with diminished respiratory.
So a big day today after several really easy ones....
Thursday, December 10, 2009
Brrrrrr....
Nothing new to report, the weather has been to messed up for me to go outside. Lungs are not good and I'm not sure yet how much better I can get them. Winter is a bad season to try and stretch myself out in. At least I'm functioning better than the past few weeks lung wise, but my diet sucks. Need to get more foods to add some variety, but I really don't like many foods.
Did a bunch of online shopping while i have been home bound (no im not telling what i bought) and am almost done.
Campaign wise, I skipped a budget meeting tonight. No way was I going out in the cold and wind unless I had to. Dent is up to his normal stupid tricks, today he robo called voters and had an option to call city hall at the end. Nice way to waste taxpayer money and city resources for politics.
Stay warm all!
Did a bunch of online shopping while i have been home bound (no im not telling what i bought) and am almost done.
Campaign wise, I skipped a budget meeting tonight. No way was I going out in the cold and wind unless I had to. Dent is up to his normal stupid tricks, today he robo called voters and had an option to call city hall at the end. Nice way to waste taxpayer money and city resources for politics.
Stay warm all!
Tuesday, December 8, 2009
Stepping out....
Joe Jackson or John Lennon....your choice....I'm in a more of a Joe Jackson mood though....
Well today I got out and walked around the mall (about 30 min) and did some Christmas shopping. Seems like things are continuing to move in the right direction. I was again winded bad when I was leaving the place more so than when I went in. I think it may be the cold after getting a little warmed up.
Food wise I did a terrible job, missed lunch so am barely at 2000 K/Cal. So this is the one area I need to focus on really bad.
Tonight my head is spinning some, but sugar is fine and O2 saturation is good...so hopefully it is nothing. Maybe just a Little tired from the activity today. I'm going to play tomorrow by ear, maybe I will take a break since the weather is supposed to be bad.
Thank you everyone for the kind words about my blog, I hope everyone else is doing well too!
Well today I got out and walked around the mall (about 30 min) and did some Christmas shopping. Seems like things are continuing to move in the right direction. I was again winded bad when I was leaving the place more so than when I went in. I think it may be the cold after getting a little warmed up.
Food wise I did a terrible job, missed lunch so am barely at 2000 K/Cal. So this is the one area I need to focus on really bad.
Tonight my head is spinning some, but sugar is fine and O2 saturation is good...so hopefully it is nothing. Maybe just a Little tired from the activity today. I'm going to play tomorrow by ear, maybe I will take a break since the weather is supposed to be bad.
Thank you everyone for the kind words about my blog, I hope everyone else is doing well too!
Monday, December 7, 2009
Sheldon rules!
Funny watching my favorite show The Big Bang Theory and noticed that the character Sheldon, that people say is based on me was using my favorite fork. Yes for those new to the issue I have a favorite fork, Excalibur....yes I apperently have a little OCD, so stay out of my seat!
I decided to venture out for coffee today in the cold (40ish degrees). A friend and I wanted to discuss the latest campaign issues, so it was as good a reason as any to get my ass moving. It did not go to bad being my first trip out. I made it to the car fine, and car to diner without issue. I did have to sit for a few moments in the car upon leaving though. Hot to cold always bothers my breathing, now more so than ever. So short of it is day four of the new AB and i am able to walk about 15 feet or so with slight issues....going to try to build it back up from here....
I'm doing better at eating, but nowhere near how I should be.
I decided to venture out for coffee today in the cold (40ish degrees). A friend and I wanted to discuss the latest campaign issues, so it was as good a reason as any to get my ass moving. It did not go to bad being my first trip out. I made it to the car fine, and car to diner without issue. I did have to sit for a few moments in the car upon leaving though. Hot to cold always bothers my breathing, now more so than ever. So short of it is day four of the new AB and i am able to walk about 15 feet or so with slight issues....going to try to build it back up from here....
I'm doing better at eating, but nowhere near how I should be.
Friday, December 4, 2009
Feeling alright.....
A truncated Traffic Lyric.....
Well the burning itch is gone....phew!!...seems like the trick is to use monistat to knock down the feeling, then let the bad AB run its course...LOL I still find it funny that a feminine product worked better than the Jock itch medicine....
Day two of the new AB (Zyvox) and id seems to be doing the trick!....I'm definitely moving more air...so keep your fingers crossed.....
My Grandmother is doing better also, Dr said 30% improvement so far....
On the campaign side the Web site listing the intro and issues we have been working on went live this afternoon. www.callahanforcongress.com for those of you who are interested in reading it...
The President was in town today and unfortunately flubbed the introduction by saying Ed Pawlowski was running for congress instead of John, but corrected himself right away at least...Jeez...of course the RNCC made a comment about it right away...but John was on CNN today, so that part was good....
Well the burning itch is gone....phew!!...seems like the trick is to use monistat to knock down the feeling, then let the bad AB run its course...LOL I still find it funny that a feminine product worked better than the Jock itch medicine....
Day two of the new AB (Zyvox) and id seems to be doing the trick!....I'm definitely moving more air...so keep your fingers crossed.....
My Grandmother is doing better also, Dr said 30% improvement so far....
On the campaign side the Web site listing the intro and issues we have been working on went live this afternoon. www.callahanforcongress.com for those of you who are interested in reading it...
The President was in town today and unfortunately flubbed the introduction by saying Ed Pawlowski was running for congress instead of John, but corrected himself right away at least...Jeez...of course the RNCC made a comment about it right away...but John was on CNN today, so that part was good....
Thursday, December 3, 2009
But I still haven't found what I'm looking for...
I have spoke with the tongue of angels
I have held the hand of a devil
It was warm in the night
I was cold as a stone
But I still haven't found what I'm looking for
(u2)
Well maybe now.....I started the new AB (Zosyn) tonight....but still feeling the effects of the old one....ouch!....but monistat seems to help allot....foolish me tried lamisil first....you know I figured since I have man parts and all....
Still not feeling up to snuff lung wise, hope the new AB does the trick...it has in the past.
Diet still sucks....need to eat....sigh...
On a good note my M started today, but did not take it out of the garage...maybe tomorrow...
Hopefully tomorrow the burning will be gone and my wind bags start feeling better......
Cheers all!
I have held the hand of a devil
It was warm in the night
I was cold as a stone
But I still haven't found what I'm looking for
(u2)
Well maybe now.....I started the new AB (Zosyn) tonight....but still feeling the effects of the old one....ouch!....but monistat seems to help allot....foolish me tried lamisil first....you know I figured since I have man parts and all....
Still not feeling up to snuff lung wise, hope the new AB does the trick...it has in the past.
Diet still sucks....need to eat....sigh...
On a good note my M started today, but did not take it out of the garage...maybe tomorrow...
Hopefully tomorrow the burning will be gone and my wind bags start feeling better......
Cheers all!
Wednesday, December 2, 2009
When something comes along
You must whip it!
Well today was quite uncomfortable....all day have had a tingle/burning sensation shall I say where the beans meet the frank.....so I'm thinking it is in fact a reaction to the AB. Now I have to decide on taking my second dose or not.
Nurse said it can't be yeast since the condition came on that fast. I think it's probably best to move on to plan B....zosyn orally....
Still having trouble eating enough today. Doing my best to eat more at each meal. Have to stretch my stomach in order to be able to eat more...will have a hard time making my 3500 goal today, but I have a few hours yet...
Lung wise, still feel tight...but it is loosening. For a little while this afternoon I was not short of breath. Would be great to get that feeling for a longer amount of time.
I have not started the M3 in over a week, hope it's not dead already. I'm going to try and get her moving tomorrow. Would be nice to grab a SBUX and go for a ride really. Other than the trip to Dr yesterday I have been a hermit....very monk like....
Work on campaign positions and web content continues, it will be nice to have the information out there for everyone. Phone meeting tomorrow evening with team will be interesting.
Well today was quite uncomfortable....all day have had a tingle/burning sensation shall I say where the beans meet the frank.....so I'm thinking it is in fact a reaction to the AB. Now I have to decide on taking my second dose or not.
Nurse said it can't be yeast since the condition came on that fast. I think it's probably best to move on to plan B....zosyn orally....
Still having trouble eating enough today. Doing my best to eat more at each meal. Have to stretch my stomach in order to be able to eat more...will have a hard time making my 3500 goal today, but I have a few hours yet...
Lung wise, still feel tight...but it is loosening. For a little while this afternoon I was not short of breath. Would be great to get that feeling for a longer amount of time.
I have not started the M3 in over a week, hope it's not dead already. I'm going to try and get her moving tomorrow. Would be nice to grab a SBUX and go for a ride really. Other than the trip to Dr yesterday I have been a hermit....very monk like....
Work on campaign positions and web content continues, it will be nice to have the information out there for everyone. Phone meeting tomorrow evening with team will be interesting.
Tuesday, December 1, 2009
Baby baby it's a wild world....
Well just got back from Jersey (Dr Fiel) and it went in a different direction than I thought. My weight was down 8 pounds, but my Pulmonary Functions were the same as last time I was there (27% of predicted). Still under the magic 30% to be listed for transplant. I asked them why I had not heard anything from Penn yet about testing and they did not know if the records were sent yet. They will let me know tomorrow.....sigh!
Since I can barely walk around right now without being short of breath this evaluation makes no sense to me. I sounded good with no wheezing and just normal crackles. So, the good news is no hospitalization or home IVs for now. Going to try avelox, a fourth generation Fluoroquinolone. I have been allergic to other quinolones (Cipro, Oflox), so we will see how this goes. Last time it felt like bugs crawling under my skin. I'm taking Benadryl just in case, so nighty night soon...LOL
If I react to the Avelox then going to do oral Zyvox (have tolerated this via IV before). So the short of it is we have a plan and it does not require needles in my arm (other than the H1N1 shot I got)....
This disease is imposable to figure out sometimes. Last time I was at Dr apt I was feeling great, weight was up, and because they said I was sick I left with the need for IVs. This time I feel like shit, can't even walk around right and they say I'm OK. So I guess we are going to have to ride this one out and see what happens.
Oh and I have to start eating more!....I suck at that, never have an appetite...My goal is back up to 160 by first of the year.
Since I can barely walk around right now without being short of breath this evaluation makes no sense to me. I sounded good with no wheezing and just normal crackles. So, the good news is no hospitalization or home IVs for now. Going to try avelox, a fourth generation Fluoroquinolone. I have been allergic to other quinolones (Cipro, Oflox), so we will see how this goes. Last time it felt like bugs crawling under my skin. I'm taking Benadryl just in case, so nighty night soon...LOL
If I react to the Avelox then going to do oral Zyvox (have tolerated this via IV before). So the short of it is we have a plan and it does not require needles in my arm (other than the H1N1 shot I got)....
This disease is imposable to figure out sometimes. Last time I was at Dr apt I was feeling great, weight was up, and because they said I was sick I left with the need for IVs. This time I feel like shit, can't even walk around right and they say I'm OK. So I guess we are going to have to ride this one out and see what happens.
Oh and I have to start eating more!....I suck at that, never have an appetite...My goal is back up to 160 by first of the year.
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