Big day at Penn...Meeting Goals..

Today was my four month checkup at Penn and it went awesome.

It started with my Pulmonary Function Test (PFT) and I must say we kicked ass. My FVC was 4.15l (80% of Predicted) and FEV1 was 3.44l (83% of Pred)! All in all an unbelievable gain, so much so that after the first attempt they re-calibrated the machine to ensure something was not amiss. Note: last time I was tested 8/17/2010 my FVC was 3.62l (70% pred) and FEV1 was 2.98l (72% pred). So in short I added 10% to my capacity in just over a month.

My weight was 153 on their scales which was also a huge gain from the 140 I was last time .

We then went to see Dr H who was impressed with my improvements also. He flinched at my new numbers and questioned the accuracy. He stated that they usually don't see large gains after the initial pop post recovery. I assured him that they checked the machine and they are accurate, also they closely match what I have been getting here at home on my spirometer.

So things are not only feeling good, I now have some quantification from the experts that they are in fact very good. We are sticking to the same level on all my meds and getting bloodwork done this week on my rejection meds and vitamin levels.

One thing this visit reinforced with me is the need to set goals and work towards them. When I was at my lowest weight of 123 I set what I thought was a stretch goal to be back to 150 by my 41st birthday (Oct 1) and when I had my last PFT I said I wanted to be at 80% of predicted.

Well Goals Achieved my friends!

Quotes (by Denise):

"We're getting our life back...little detour." Jim after telling me he got us tickets to see Dave Matthews Band tickets for November.

"What's so important that you have to put your life and others in danger?" Denise regarding some idiot dodging in and out of traffic.

"Maybe he got his transplant call." Jim :)

No Rejection Bronch 3....

Yes that's right, got the results back earlier today and there is no signs of rejection in the tissue pathology. They decided that they will not treat the Pseudomonas since I am feeling so well(probably just migrated down from my sinuses). They are however going to treat the Aspergillus. I'm to start an anti-fungal on Friday. They want me to wait till Friday because the drug will interact with my Tac (anti-rejection) level. I'm to go from my current 4mg twice daily to 1mg twice daily of Tac starting Friday and then get my blood levels checked on Monday. They said it would take a few days before the levels stabilize.

So great news!

No Pathology yet....

Got a call from Belinda and they do not have any pathology results back yet from my bronchoscopy on Friday. They did however get results back from the fluid lavage procedure (fluid they sucked out after rinsing lungs). It is growing pseudomonas, MRSA and Mold (aspergillus). Since I am feeling and doing so well they will probably not treat the pseudo or MRSA since it is probably just migrating down from my sinuses (I was growing it before transplant). As far as the aspergillus goes they are waiting to hear back from the infectious disease Dr on weather to treat it or not. Short of it is we wait until tomorrow to see what is what.....

Keep on moving up...

It has been a very good week for me health wise, weight continues to rise (now at 143) and I blew an all time high on my home peak flow yesterday (FEV1 3.12 FVC 3.57). I have been able to get back into the campaign office several times and am starting to get back into the groove some. I also started to lift weights again this week. It felt great, my only concern is still my sternum. When I was doing bar presses and had the bar lowered with my arms all the way down I couldn't help but wonder if my chest was going to split open...lol.. Luckily I was able to push the 45 pound bar without issue. I am noticing that my strength is steadily increasing, so I will have to keep in mind the doctors limitations.

Denise and I got out and about all weekend and it was so great to be able to walk through the stores and grab lunch with minimal concern for my health. I am of course still going nuts with purrell, but not wearing a mask unless its really close quarters.

I also picked up my new iPhone 4 yesterday (take that Chris and your droid)! I know most of you who really know me were surprised that it took me this long. The focus was on health and rehab and my iPad and old phone was sufficient tools, but I finally got over to pick up the new one. Denise and I are heading to Atlantic City tomorrow and I wanted the new camera features with the flash. I have to say the screen clarity is excellent but I have not noticed much else that is different yet. It was so easy to set up, Apple is great for user functionality.

Looking better...

I did some manscaping yesterday to get a good look at my scar and a mark that has appeared on my right peck. I showed the Dr the mark last time we were at Penn and Dr H said he didn't know what it is and that I should see a dermatologist. Great, just what I wanted to do...see another Doctor. Looking at the mark its glossy like the the scar is, so I'm wondering if they got some of the glue they used to close the incision on my chest by accident.




So here is the 3 month post transplant scars, not too bad at all really. I figured I can just say I was in a fight and was hit with an ax or a broadhead sword, then I got the best of the guy so his partner shot me several times in the gut. Sounds good no?....LOL

I'm now 142 pounds and as you can see have filled out much better than I was, and the scar is stretched slightly because of it. I'm nowhere near my final goal of around 160, but at least I don't look completely sickly anymore. As I mentioned before at my low of 123 pounds I really looked bad. Being an ex bodybuilder I know I have body dysmorphia issues, but trust me it was bad. In hindsight I should have taken a photo, but I was really disgusted with it all at that point. See if my weight did not start to improve my fear was that I would have had to get a feeding tube put in and I was vehemently against that. I still have to force myself to eat most of the time, but I'm making sure to get my calories in and it is working well. I really need to start to lifting more though, I have been getting out almost daily doing various things for cardio, but I'm not doing nearly enough resistance exercise since I'm still hesitant with my sternum and incision. The 5 pounds weights are just a joke, so I did get some 10 pounders now to push it some.

On another note, here is a picture I received yesterday from the Callahan fundraiser last week with Bill Clinton. You can see how thin I am in it (was in 120's). to me I look like I'm wearing someone else's suit, lol..




On a positive note I have now started to attend a few meetings over the last two weeks and am trying to get back in the flow of the campaign. Its so nice to be able to be a part of something again and not just focus on my health issues. I'm making sure to use Purell on my hands all the time and wear a mask when in close quarters.

Back in the saddle again.....

Well I believe this is my first post since transplant...so Hello everyone!

It has been an incredible few months (3 month transplant anniversary was last Thursday). I have had many ups and downs over the time post transplant and Denise has done a great job filling everyone in on the craziness that is the transplant process. Thank you so much for keeping the blog going Denise and everything you have done for me over these difficult months. And Thank you everyone who has followed me and given me strength through this process, I am amazed at how many comments I hear from people on how much they enjoyed following us through this journey.

Many have asked me why I had not been blogging myself over this time and the truth is that I was not able too. At first physically my eyes could not focus, then my mind would not let me. I was so addled from the medicines that I was unable to clearly state what was going on. It has only been over the last two weeks that I have actually gotten back to being myself. I now feel I can fairly reflect on what has happened in my life and not send people running and screaming for the exits.

My weight is up from a low of 123 to a respectable 141.5 and I am no longer weak as a kitten like I had been. I have made a point to get out of the house more and it is helping me allot both physically and mentally. See when you have a transplant and they have your immune system knocked down low enough to keep your body from fighting the new organ you have to be wary of everything. The clinic does a good job of scaring you away from all the potential things that can hurt you and cause infection and or rejection. The result of the fear was that I found myself knocked out of my normal rhythm. Those who know me know I made a point in life to live it fully, no excuses no fears. I set goals and accomplished them more than not and never let my health interfere. Well post transplant, be it from the medicines, stress, fear or whatever I found myself trying to isolate myself from everything. I was physically afraid to engage in life or anything. This is not me, I have to throw caution to the wind and run headlong into the storm, that is who I am and I have come to realize I can't be anything different and have a decent quality of life. Two weeks ago I got angry and took control of my life again....

So as Aerosmith says I'm back in the saddle again!!!

I know many people had specific questions, feel free to email them to me or post them as comments and I will be glad to post about them.

Cheers!
Jim

Offer of Lungs

It's Denise.
We are on our way to Univ.of Penn.
Don't know for sure if this is the "real deal" but hoping it is! Trying not to get excited but it's hard. Both of us are feeling like this is it...
We have an app't tomorrow at Columbia and Jim has his iPad so we're think g this is a good thing. We are almost in Lansdale. Positive vibes and prayers please!

Wait and wait some more....

Well they did present my case today but were unable to list me yet. Everything went well, but they realized that I had not yet met with the surgeon and that is a requirement from the program for listing. So we now have an appointment for next Thursday at Columbia Presbyterian to meet with a surgeon. I was informed that immediately after the meeting we would be officially listed. So I'm a little pissed off at the last minute hold up, but happy that we are moving forward.

Yesterday I received the vaccinations that were needed and man did I feel it last night and today. I could not sleep all night and kept alternating between burning up and cold teeth chattering chills. Today I'm sore, but feeling much better than I was. I'm making sure to take Advil every four hours just in case.

For fun here is a picture I just got today from the campaign from when Vice President Biden was in town for us...



I don't think VP Biden ever takes a bad picture. Yes I know he flubs a line here and there, but he is a really nice guy.

Check a few more items off the list....

Well it has been a busy week again.....

I was informed on Tuesday morning that although my case was supposed to be presented to the Columbia transplant team this Friday, it may not happen because they did not have a completed Lung Transplant Evaluation Form for me. Well I initially lit into the coordinator and explain my displeasure at the last minute issue on something that I couldn't have really completed since they saw me last. See I have been on IVs for three weeks now and not in any shape for getting around for minor appointments (Dentist and Opthamologist) and from what I had learned in the past when an active infection is going on is not the best time for Vaccinations (Influenza, Pneumovax, Tetanus, 3 Heptavax/twinrix shots). The coordinator quickly got flustered at my angst and transferred me to my new pulminologist who proceeded to explain the requirements of the program and how they are very inflexible on some things for my safety. After my logical argument (ok I begged a little too...) She did relent and said that if I at a minimum could get the Eye Dr and Dentist to send proof I had been there they would proceed with the listing process as long as I had a plan for the vaccinations.

So Denise and I had to call in some favors with our local doctors in order to take care of the open issues on the quick. Luckily we have some excellent people who provide our care locally and all fit me into their already busy schedules. We even had to make use of the local city health borough for the vaccinations since my primary could not get them at all.

So short of it is I have now met all the health care maintenance requirements for the lung transplant program at Columbia Presbyterian Hospital. I am awaiting return verification that the coordinator received the completed form that I just sent her. My case should be presented on Friday as planned and I will know the outcome by Friday afternoon. I was told the actual listing may take until Monday since there are some things that need to be done when putting the information into UNOS and they need insurance approval from Blue Cross. I did talk with my transplant case worker at Blue Cross yesterday though, and she has already completed the approval process since Columbia called her with a heads up.

On my CF health front, last night was the completion of 3 weeks of IV therapy. I really didn't get the bump up I had hoped for since I had a slight setback last week after my cardiopulmonary stress test (some hemoptysis) and my allergies are really acting up. I am however starting to feel better now, so we decided that we would go ahead and stop the IVs as planned but keep the line in just in case I don't continue to improve.

Today was a really nice day out and it feels great not to have over 6 hours of IVs to run. I took advantage of my new found freedom and ran to Air Products Credit Union and while I was in the area it gave me the opportunity to see some of my former colleagues. It was great seeing everyone and thank you for the well wishes.

Another long day of testing done

Well we made it through another day of pre-transplant testing. I'm worn out today from all the walking around (columbia Presbyterian is a huge complex), and the exercise stress test was really tough.

Everything went well, the meeting with the psychologist was fine, but the joker in me kept wanting to ask him why any of it was his business.....and when he asked if I have ever done coke I wanted to say....why you got any?...LOL, but I kept my jokes in control and made it through. The only question that shocked me was he asked if I ever used anabolic steroids which I thought was a very odd question to ask. I guess because they knew I was a bodybuilder he was checking to see if I was being truthful.

The social worker was cool and yet again pointed out the cost and lifetime commitment needed for transplant. When going through transplant it seems everyone always points out the costs. It makes me wonder who in the hell says to themselves, I'm dying but maybe I better not choose life saving surgery because it costs money now and in the future.

I'm almost done with my second week of a three week course of IVs (Merrem and Tobra) and am feeling better. No way could I have gotten through yesterday if my health was like it was a few weeks ago.

Things are looking up, I'm going to send a message to Columbia to see when I could expect to be listed.

Another round of testing...

Of to Columbia Presbyterian in NY in a little while for a full day of testing. They require an exercise cardio test, EKG, Psych eval to complete their requirements. Today should take care of all the testing required to be listed there, we will see.

Back to mainline....

Well Picc insertion is set for 12:00 today. Going to do Tobra and Aztreonam again, same as a month ago, and stay on the oral Zyvox for the remaining 5 days. I got my last good night of sleep and full shower in for the next few weeks. I do look forward to starting to feel better and hopefully for longer this time. As many have noted the main thing now is to try and stay in as good a shape as I can for as long as I have to wait. Better to be in my best possible shape prior to transplant.

On a positive note Jess is out of bed and walking post transplant...way to go Jess! Steph has her chest tubes and staples out now and is putting some serious miles on those new windbags...Way to go Steph too!!

My other transplant friend Piper is still hanging on and working it out while she waits, much like myself....Our time will come, no doubt!

Good while it lasted...

Well I have been IV free for a few weeks now and have tried to take full advantage of it. I got a ton of outside activities in , even rode the lawn tractor around a few times to cut the grass (with a mask on) and of course drove the M around as much as I could. Denise and I took the opportunity to go out for some fine dinning a few times and I even shared in the grocery shopping duties for a change (smile). I was down to visit the CF team at Morristown Memorial last Tuesday, my weight was good at 158, but my lung functions were surprisingly unchanged at an FEV1 of 24%.

It was a really nice break, but now it's no more CF maintenance plan and back to the real active CF infection world.

Saturday morning I was coughing up some blood (only a few table spoons) and was short of breath, but it passed. Yesterday morning I woke up early and very achy and not moving much air, so I got up and took some Advil and relaxed on the couch. I kind of laid around most of the day other than going to Lowe's with Denise for a quick trip and then more rest, at about 5:00 we went to Callahan's for a cookout, but I was not feeling very well and came home. At about 8:00 I took a shower and then proceeded to alternate between chills and sweats for the rest of the evening my temp was 100.1 when I checked it. I slept in this morning till after 10:00 and no fevers so far today, but have a dull ache in my upper right lung. Being the astute student of CF I am, this obviously all leads to the need for antibiotics (35 years of CF knowledge not gone to waste :)..I was diagnosed at 5).

So I fired a message off to Paula and the word came back that Dr Fiel was thinking back on IVs again already. I called back to try and stave off the Picc for a little and we agreed to try some Oral Zyvox first. So day 1 of Zyvox begins today.

On a very sad note last Friday we had to put our cat Phoebe down after 15 years or so with the family, sad sad day...I miss her everyday, and really notice it at times especially like now at breakfast....she always liked to have a little milk after my cereal

So what does being listed mean....

Well I started this post last Tuesday and was writing it while the call for the dry run came in, so I'm now changing the intro but I'm going to leave the rest intact since it's even more relevant....looking back at it now is very interesting (but I guess not timely....lol)....I will add that 2 other CFers (Jess, Jerry) have had dry runs since mine, sorry guys....

The most frequent question I seem to be getting is when will the transplant happen. I sure wish I knew the answer to that, as do all my friends on the transplant list. For instance my one friend Piper had a dry run over the weekend. She got a call from her transplant center to come in because they had a matching set of lungs for her. Unfortunately after she was at the hospital for awhile she was informed that one of the lungs was not viable. CF patients unlike some other conditions requires a double lung transplant because of the bacteria we harbour in our lungs. If they only gave us one lung the existing bacteria from the CF infected lung would quickly attack the other due to the immunosuppressants needed post transplant. Short of it is, her transplant did not go ahead, but at least the one good lung was not wasted and went to save another's life. Hopefully the perfect lungs for her will be found soon. So keep in mind people when we post that we got called, it's not a done deal till the surgery starts.

So back to the topic.....When someone over the age of 12 is approved for transplant by a clinic (in the US), your data (derived in the evaluation process) is fed into the UNOS (national transplant database) system. When they input your data an LAS (lung allocation score) is calculated and is then used to demonstrate ones need as compared to others. The score can go from 0-100 with the highest score having the most need. My LAS happens to be 37.78 for those interested.

The score is derived from several pieces of data such as (list from Wikipedia):

-diagnosis of the patient (e.g. emphysema, cystic fibrosis, etc.);
-age of the patient;
-body mass index;
-presence or absence of diabetes mellitus;
-ability to function according to the NYHA scale;
-percentage of predicted forced vital capacity (FVC);
-systolic pressure of the pulmonary artery;
-mean pressure of the pulmonary artery (only required of sarcoidosis patients);
-pulmonary capillary wedge pressure (PCW pressure);
-flow rate of supplemental oxygen required at rest;
-distance walked in six minutes;
-need or lack of need for continuous mechanical ventilation;
-levels of creatinine in the blood.

Once they have the LAS score they use that coupled with your blood type compatibility and body size to list you for lungs.

Through the UNOS system organs (Lungs) are offered first locally, then regionally, then nationally using the LAS as the criteria of who gets them first. What I mean by that is:

If an organ donor (host) is brain dead in a hospital, the organs are first offered to the hospitals in the local area, if there is no match locally then the organs are offered to hospitals in the region the host body is in, if no match still exists the organs are then offered nationally to other hospitals.

So in my case right now I am listed at University of Pennsylvania, so if an organ donor of AB blood type passes at Penn and they were my height I would be offered the lungs first since I'm the only one on the list there with those characteristics. If I was not a match they would then be offered to Temple Hospital second, since they are also local. If there is still no match for the lungs, they would then be offered to all of region 2 (De,DC,MD,NJ,PA,VA,) if still no match then they would be offered nationally to other regions.

Now the reason I want to be multi-listed at Columbia Presbyterian is because they are in region 9 (NY, VT) so by listing there I would have a much larger pool to pull from and I know there currently is no one of my blood type listed in the whole region. Good old AB blood, blessing and a curse.....

Dry run....

Just got home from Penn....drove all the way down, completed checking in and received a call that the lungs were no good. They were from the Midwest and the person asperated and ruined them,...sigh!

Columbia date set

Well I just heard from Columbia Presbyterian and have an appointment set for Friday Apr 23rd at 2:00 (they first said may 7th but I balked). I'm not sure with what Pulmonologist we will be meeting with, but the person I spoke with said "she" can meet with you, so looking at their site narrows it down to three doctors. I asked what the intent of the appointment is and if I needed to prepare at all for any testing and they said no preparation needed it's just an interview. I pointed out that they have all my records from Penn and they said yes they did and they were already reviewed. I asked further if I was a candidate for transplant and they said yes or I would not be having the appointment. I can't wait to get this meeting in, and hopefully get dual listed. I'm very lucky to be within 2 hours of two of the best transplant clinics in the country.

A quick update on my health, I'm feeling pretty darn good. My last day of the three week IV course will be Friday. Unfortunately my last dose is scheduled for 10pm and so if I follow that the picc line at best can be pulled on Saturday morning. I know getting someone out on a Saturday is a long shot, so I called to try and get it pulled on Friday instead. The intent would be to just skip the last dose, we will see what happens. With the weather touching 70 degrees and sunny I am hoping to get out and about some and try to work on my stamina. I would love to try and lift some weights while I'm feeling so well since that's what I enjoy most, but not sure I really can.

On another note, I can finally announce that VP Joe Biden is coming to town on the 15th to hold an event for my friend John's congressional campaign. Needless to say this is a big deal, we can really use the support.

I'm listed!

Well it's official, I'm listed for a double lung transplant at University of Pennsylvania. Since I'm a rare blood type (AB+) I'm top of the list there.

My information was sent to Columbia Presbyterian today, so I will call to follow up tomorrow.

Good news!

Pathology just came back, no cancer!

Now I have to call Penn and see if I'm now listed.

Well that sucked...

Yesterday was quite a day....I apologize if this is too graphic, but others may be going through this transplant process in the future and want the information.

Yesterday was the big day for my biopsy, it occurred at 1:30 and so I had to start preparing at 11:30. How does one prepare for a prostate biopsy you ask......with an enema of course. Yes that's right your humble author was humbled even further yesterday. As I laid down on my belly to deliver the fluid I had to laugh, this has to be some sort of joke right?. I kept waiting for someone to jump out and tell me I was punked or something, but alas no one came to my rescue. So I did what I had to do and man, it was as bad as the biopsy. See I have been on IVs for several days now and my butt is really sore from the loose bowels and reoccurring bathroom stops, so adding salt water to an abraded bottom was like setting a lit match on my skin. YOW!!! It was a really painful experience....

So at 1:00 Denise and I headed over to the Dr office for an ultrasound guided biopsy. After arriving, the nurse and I headed to the procedure room while Denise chilled in the waiting room. I then had to then disrobe from the waist down and sit on the table/chair contraption. After taking my vital signs the nurse then started to prepare me for the procedure by inserted a syringe type object with numbing lubricant in my already pain riddled anus. As the numbing cream took effect she showed me the apparatus that would be used in the procedure. First the doctor would insert a wand like object into the anus (ultrasound probe), the wand had a hole in the middle of it that a long needle would be inserted through. The first needle would be attached to a syringe that had Lidocaine in it, then once the prostate area was numbed up appropriately he would remove the syringe and insert another needle that would be attached to a sample gun. She told me the doctor would be taking 12 samples from various locations within the prostate.

She then left and about 5 minutes later the doctor came in with another younger women who observed the procedure. After a few niceties he asked me to lay on my left side, scoot over to the edge of the bed and bend my knees up toward my chest. He then took a wand like object and as was previously described inserted it where I would prefer it not be. This was very uncomfortable mostly due to my sore bottom. He then moved the wand around and injected the Lidocaine in many places (not sure how many times he stuck me). While he was waiting for the Lidocaine to take effect he moved the wand around and took several ultrasound pictures of the prostate. At one point he said he saw some calcification, which apperently indicated some previous trauma to the prostate. After a few minutes (I am not sure how long as I was meditating and starting intently at the wall outlet) he said he would now start taking the samples. I could feel him moving the wand around and pressure in my belly and groin area, every so often I could hear an audible click when he took a sample. I did not feel most of the samples being taken, but two of the twelve did hurt like hell. Luckily time passed and the procedure ended.

After he removed the probe and asked me to sit up I asked him what would happen now. I knew he had talked to the doctors at Penn previously to make sure that the procedure and samples would meet their needs. He said the samples go off to the lab and we would hear back in 5 days or so. I asked him if the Dr at Penn told him what happens if it is cancer, and he said he would be incredibly amazed if it was as he did not see any indications of concern.

Now I need to avoid strenuous activity for 5 days...and not get freaked out when I pass blood for awhile....

So that was my big day yesterday....man am I glad that is over!

Prostate Biopsy

Well the urologist just called, they are moving up my biopsy to 1:30 tomorrow. I'm really not looking forward to this one....but better to know than not. Most importantly if all is well then I can finally be listed for transplant. I'm looking at it as one more hoop to jump through for Penn.

Then I'm going to give myself a little break before contacting Columbia to list there.

Today is the 4th day of IVs and I'm finally not feeling nauseous. I had a really bad few days here, hopefully things are on the up now.

What a week...

Well I have been run ragged this week but wanted to take a few minutes to update everyone on what has come to pass.

Monday night Denise and I went down to Philly and stayed overnight at the Sheridan. Upon entering the building I had one hell of an asthma attack and could not get enough oxygen in or air out, it was quite scary for the moment and I thought I may pass out. What a way to start the trip, I hate when that happens!

Tuesday was my follow up appointment at Penn. The day started with a barium swallow in which they identified that I have a hiatal hernia and gastric reflux (which I find funny because I love spicy food and very rarely get heartburn).

Then next up was the report out from the transplant team. The coordinator proceeded to talk about my osteoporosis, blood shunting in my heart, reflux and high PSA. Well other than the PSA this was all new to me! I asked were they sure they had the correct case file....jeez.

But turns out it was accurate, I do in fact have:

• Osteoporosis in my vertebrae identified by dexa scan (treat with Vit D and calcium)
• Heart shunting - they thought that the heart flap that usually closes up in an infants after birth may still be open on me. We begged the scheduler to get me an appointment that afternoon for an MRA with and without contrast to rule out the heart issue and we were able to do so. (I heard back yesterday and the heart issue is now fine)
• Gastric Reflux (treat with a Prilosec like medicine)
• PSA - retested via blood test on Tuesday, results came back high again (5.46 first test, 4.81 second test) so needed to see a urologist. Luckily due to the snowstorm there were cancellations so I went in this morning to have it examined (.....gulp!). At about 10:30 I was violated by a ham handed urologist who said my prostate felt fine (to him....), but a little spongy (I think he was trying to check my tonsils though....jeez). Both he and I called Penn separately and were informed that I can either wait 3 months and retest PSA level and if still high then get the prostate biopsied or get the prostate biopsied now if I want to be listed. So needless to say it looks like I have a prostate biopsy to schedule and get done in my near future...
• Verified I'm negative on TB and CMV virus. The negative CMV is only a concern in that since I am a rare blood type (AB+) I may have to take a set of lungs that are positive for CMV and that could open me up to get an outbreak from them. The Dr said it is very rare to die from the issues, but if I was a common blood type he may advise more thought on weather to take lungs with it or not. But I guess beggars can't be chosers, if they offer me lungs CMV or not I'm taking them

After Dr H at Penn listened to me on Tuesday he recommended I do a few weeks of IVs since I sound so junky and am bringing up some nasty stuff. Yesterday at 9:00 I had a picc line put in and started on two IV AB (tobramycin and meropenem), so it's 1.5 hours of IVs every 8 hours for me over the next three weeks....

And that my friends and family is where we are at as of now.....it has been a trying week that I am glad to have in the rear view mirror. Good news in camp Fahr is one more hoop to jump through prior to listing at Penn. Then after the Penn issues are put to bed I will start on Columbia...sigh.....

On a secondary note I received news this morning that dear friends of mine are adopting a baby girl in March. I am so happy for them!! Congrats guys!!!

Where did the blood come from?

Woke up this morning (can't help but get the sopranos theme in my head) and found blood on my bed just forward of my pillow. I got a tissue and dabbed it, but it was dry. So at some point last night I must have coughed it up, but I have no recollection of doing so. I called Denise and she did not think I coughed any more than usual last night and I do not remember waking up at all. My chest is somewhat tight today, but not overly bad (for me that is). Since I woke up I keep breathing in to see if I feel a gurgle or not, but nothing so far...nor have I coughed up any red all morning. For those of you who are lucky enough to have not had any lung bleeds, when one does you usually feel a gurgle. Its like a bubbling area feeling inside your lungs. Its quite an unmistakable feeling than you don't easily forget.

Last night I did go out in the cold for a brief stint (less than 5 minutes total outside) to head to a political rally, but it was held inside and other than a spin around to say hello and shake some hands I sat nearly the whole time. See last night my friend John Callahan officially kicked off his congressional campaign for PA-15 with a petition drive and spaghetti supper. He was sure to mention in his speech the need for health care reform that includes the elimination of pre-existing conditions clauses! Go John! It was a good night, I'm very proud of him and glad to be his friend for nearly 30 years now. Hopefully having an advocate in congress will help the cause. I don't think going out led to the bleed, but my lungs just really do not like the cold anymore. My body just really does not want to do the things that I want to do anymore, but I refuse to just do nothing. I'm ringing every last bit out of these old windbags, I just hope they last until I can get some retreads.

So I guess now I just wait and see, I have two days remaining of the oral antibiotic (Zyvox) I'm on.

Really!?

Well I called up Penn yesterday to ask if there was anything to be concerned with in my blood testing they performed.

The person I spoke with said only thing that stands out is my PSA was 5.5, and normal should be under 4 or lower for someone my age. He said I would have to get that retested prior to being listed to ensure there is no cancer. Unbelievable....

So since I knew zip about PSA testing I spent all of yesterday afternoon reading up on the subject and talking to people who I know have had prostate cancer in the past. From what I learned my level is in fact really high, but that in itself is not too much to freak out about. PSA level increases with age and is not a very reliable test, but being a 40 year old guy it should not be anywhere close to this level though. Many people have had false high numbers, so no worries yet.

So now there is another thing to take care of....you know, because I didn't have enough on my plate...

As I said to a friend of mine yesterday, if there is in fact an Omnipotent being pulling the strings on all of us I hope it's having a good time messing around with me....LOL....

Some snaps from Penn last week

On the way.... A good sign to see....

Preparing for walk test....sporting the latest in O2 sensor headband fashion...

I'm laboring for sure....O2 sats were dropping into the 80s even after they raised the O2 flow to 8...Note I would not have worn white pants had I known a white headband was going to be used...LOL....I look like a reject from the globe trotters...(whistling Sweet Georgia Brown)

Lunch...Denise and I both needed at that point!


A common site, me, vest and iPhone (bring on the iPad please...).....

Start of a new day without fasting for a change...

Waiting during day 2....

Post cardiac catheterization day 3....eating a Jelly Krimpet...


It was quite an experience for both Denise and I, and we are so glad that phase of the process is over. I was sore for a few days afterwards, had muscle aches kind of like what you get after working out for the first time in awhile. My groin is almost healed now and none the worse for wear (just a few more battle scars).

As usual after Pulmonary Functions Tests I started to feel crappy a few days later and started an antibiotic over the weekend. Working hard and inhaling and exhaling always stirs up the junk in my lungs.

It's been an odd week for me since the testing with the bad weather and not feeling quite right I have not been outside. I'm going to have to venture out again one of these days soon, but the way I see its natures fault it dropped over a foot of snow.

Now I can't wait till the 23rd to get to speak with the Doctor in person again. I have been reading allot about blood types and transplantation and it seems that not all clinics have the same protocol. So I now wonder if the person I spoke with about it at Penn had all the details correct.

Day three is in and I'm at home on my own damn couch. After days of poking and prodding it feels so great to be beyond the testing phase. I still can't shower because of the cardiac cath, but at least I'm home. I'm going to try and use some wet wipes to clean up my boys, I look like my groin was in a knife fight and lost. But the great news is the dr said my arteries and heart look great.

It's been a really tough couple of days I'm going to need some recoup time for sure.

One piece of news from yesterday is my blood type is AB+ which is very rare (3% of population). I'm not sure how this will affect me yet since there won't be as many donors to pull from, but logically there should not be as much need for them either.

Other piece of news was Pulmonary Functions FEV1 24% FVC 37% so slightly off from last time. Numbers may be slightly swayed because they were more precise and had me 5'-9 1/2" tall and 155 pounds (up 5 baby!)

But core message is I'm glad to be home, thank you everyone for your support and thank you Denise for everything!

Day one over.....two begins

Well day one Is in the books and it really wore me out. I had nothing left in the tank when we got back to the hotel last night. Denise fell right asleep, I did a treatment and then woke her up to go get some food. We walked across the street to get some strombolli that was excelent I might add. Then grabbed a frozen yogurt at a place called Sprinkles, also quite good. Then treatment and slept like a baby till this morning.

Testing begins today at 9:00, but at least I get one day reprieve from fasting this morning. Starbucks here I come! Always remember people triple venti whole milk white mocha (they usually add the fourth shot for free). Enjoy your day all! I will blog on details of individual tests once this is over.

Snow outside less than an inch i think...

Pot to piss in.....

In case anyone was wondering this is what a 24 hour urine collection container looks like. Drum roll please.......here it is!



It's hard to believe, but the day has come already. This morning at 6:45 am (after a morning pee) my collection has officially started. I look at this bottle and wonder....is this a challenge! Shall I try to fill it (3500 ml)....LOL.....

The bigger thing though is this means the transplant evaluation is finally here!

Tonight after Denise comes home from work we are off to the Sheraton in Philadelphia that will serve as our home for the next three days. We will of course do our best to have some fun while we are there going through all this crap (you know me, I'll find a way). If it was warmer out we could of course go and see some of the sites. Although we get to Philly often, we really don't do very much site seeing there. I'll try and keep people posted on what is going on with everything when I can.

This really is exciting stuff! I'm looking forward to getting this testing behind me and to start focusing on what I can do to now prepare for the surgery and start to look to a secondary clinic (most likely Columbia). Being listed at two places increases your chance for a speedy transplant.

On a sad note, we decided this week to skip our yearly two week trip to Florida. The Yanks and Phillies will have to start the season without me this year. It's sad not to get away, but it's the right thing to do all things considered. It just doesn't seem right to go away with all this pending right now. Hopefully by next February I will have new lungs and be healthy enough to really enjoy the trip.

How are you doing.....

Let me start out by saying (unlike Carley Simon's song....which I think really is....) this post is not about any of you, it is most certainly about me.

I have to say that the question in my subject line drives me up a fucking wall. To explain why such an innocuous comment would drive me to profanity (like it takes much) I need to give some background information about me. First of all I hate to lie and really don't like those who do. Second I strive in life to be happy and make others happy. If you put these two edicts of mine together and couple them with my subject line they are unfortunately at odds.

See the real answer is I'm not doing well, not at all and I know my friends and family wish I were. The truth is I don't even want to wake up in the morning, not because I don't want to live but because its really hard to do so. The truth is hard to hear and I don't like having to tell people so I say as good as can be expected, or making due...getting by....etc..

See the truth is....right now the best moment of my day is the brief seconds right after waking up; just before my first attempt to breath in, when my breath is still shallow and I have not yet moved. In that moment there is no coughing, there is no muscle ache, no pressure and pain in my head. In that moment all is fine and I am good, and I try to hold onto that moment for as long as I can each day. Because the truth is it's all down hill from there. Once I start to move the clearing coughs begin followed by the deeper coughs, the muscle starts to ache, the head pressure begins, the gurgle and rattle of my chest begins its haunting melody. These days I can't even get up in the night to go to the bathroom without it being a major deal with the coughing and gasping. Hell I don't even like to roll over in bed because the coughing starts and it will wake up poor Denise who is just trying to get some sleep before work. And have I mentioned I have a damn O2 tube hanging out of my nose all the time that keeps getting caught on things!

But the question pisses me off the most because I hate that my main characteristic right now has to do with health or more precisely my lungs and CF. I have accomplished so much in both in my personal and professional lives that I am proud of despite or maybe in spite of my CF. Pretty much everything and anything I have ever set my mind to I have seen through. Over the years I have developed a breadth of knowledge in sports, exercise, psychology, nutrition, bodybuilding, design, engineering, manufacturing, computing, continuous improvement, government, health care, the list goes on and on (well not too much farther really...) but right now none of that matters. Now when people call we are more likely to talk about my health than to discuss other issues and its obviously on my mind more than anything else anyway. It sucks to let people know that this disease is sucking all the real joy out of my life, that my body is really failing me now.

So I'm sure it's no big surprise to anyone that I have unfortunately been becoming more and more withdrawn, and I know it's not good. I know People showing their concern for me is a good thing and a testament to the life I have led. So I'm putting this out there so you all understand a little more of what's going on in my mind and to explain why I may not have answered the phone or called you back right away and to say I'm going to try and do better.

We are one week away from the transplant evaluation now and it will be great to get that behind us.....

See I told you it was about me....LOL

Wednesday already....

Man time flies when your having fun....or well...time flies, lets leave it at that...

The temperature here in Bethlehem has finally gotten out of the lung rupturing 20s and even touched the 40's for a few days. I took advantage of this break in the weather by going into the campaign office for a few meetings to catch up on things on Friday, out to Starbucks for coffee with friends on Saturday morning (Thanks Denise, Shannon and Barb!) and out to the Promenade Shops for a walk on Monday with Denise. My trips were very short, but it was great being out never the less. I was even able to walk the length of the mall slowly (with the oxygen on), so that was really nice. Plus I had a chance to get a white Mocha each time I was out, that is my little treat to myself for the effort.

The last few days have been spent mostly reading everything I can find about lung transplants and preparing for the fast approaching evaluation. I'm in crash course mode to learn about lung transplants, goal is to know as much as the Dr does....LOL...(those that know me know I'm only half kidding)

I thought people may be interested in the Agenda for the evaluation. The event should be quite informative I'm sure.

Tuesday Feb 2:

8:15 Arrive at Penn
Bloodwork & Drop off Urine (24 hour specimen)...Yes that's right 24 hours of urine baby!

9:00 Social Work Consult

9:30 Introduction to research

10:00 Nutritional Consultation

10:30 Transplant Finance Consultation

11:00 Lung Transplant Education Session

Lunch

1:00 Pulmonary Rehabilitation session

2:00 Ventilation/Perfusion Scan

3:00 Echocardiogram and Electocardiagram

Wednesday Feb 3:

9:00 Dexa Scan, Chest CT Scan and Chest X-Ray

Lunch

1:00 Pulmonary Function Test with Arterial Blood Gas (OUCH!!!)......Hate blood gasses

Thurday Feb 4:

6:45 am Cardiac Catherization....I will be sedated for this, then have to lay for several hours after before I can go home. Good news is the car ride back to Bethlehem is not an issue, I just can't drive.

Then on Feb 23rd:

9:00 Barium Swallow

10:30 Follow up appointment to review results of evaluation and recommendations.

We had a room booked at Penn Towers for the three nights, but after speaking with a few people have decided to cancel and go to another hotel. Apparently there are a few recently renovated full service hotels nearby for an equivalent price. For a $175 a night one should expect a little comfort. And for anyone reading and planning on robbing our house while we are gone, we have pet sitters coming to the house, oh and Dharma bites....

Other open issues are what to do with my CF related Diabetes over this time. and what to do about vacation....

I'm waiting to hear back from the Endocrinologist about how to handle my Diabetes during the fasting prior to tests. Since I have an insulin pump that continually pumps insulin into me to help manage my blood sugars, and I can't eat prior to some of the tests, my sugar level would keep dropping without further intervention. So I'm sure I will have to disconnect the pump and watch my sugar level, it's just a matter of when.

Another issue is on the 23rd I had hoped to be in Florida! I'm going to talk to the doctors and see if I can move the appointment ahead or not. If the potential outcome of this appointment is officially being listed, no way am I going to miss it. Other thought is potential position on list, I can't very well be in Florida if a call can occur. I find it hard to believe that it would happen so quick even if I do get listed right away, but who knows. We will get some clarification on this, but I hope not to miss my little respite in the sun.

An interesting tid bit......I was trying to look at the variables for listing (Lung Allocation Score, I will write about this more on a later date) and Since I do not know my blood type I did some checking. Since my dad is B+ and my mom is A+ I can be A, B, AB or O.....so basically anything....LOL....this was no help at all....just going to have to wait to be typed.

On a sad note, I can't believe the Democrats lost Kennedy's seat to someone so against health care reform and the super majority along with it. There is some serious irony there.....Since Massachusetts already obtained health care reform in 2006, they basically said we got ours....fuck you the rest of America (much like many on SS are saying). Being a person with a BIG pre-existing condition, this really upsets me. The plan going through the house now is by no means what I wanted, but it certainly is a good base to work from. I currently have a primary and a secondary insurance plan, and still am very concerned with the coverage needed for this life saving transplant. It's terrible that in this country of plenty that people are so greedy and self centered as to keep others from having the same care they have and withholding medicine and needed surgeries.

M the day she came home....

Don't burn the pig...

I actually got out of the house yesterday, took my sweet M3 for a nice ride. It was my first time out of the house in a week. My medical supplies company (Homestar) called and said they had my lancets in for me to pick up. For those of you who don’t know lancets are the little needles that poke a hole in your finger to check your blood sugar. I have to check my blood before each time I eat to determine how much insulin is needed to cover the sugars I’m consuming. Since the temperature outside was actually above freezing for a change I figured it safe to go out and explore the outside world a little. I stopped for my favorite Starbucks drink (triple venti whole milk white mocha), picked up my supplies and since I was already out, proceeded to drive around for a few hours. It was really nice to be out and about for a little while and it not being so bitterly cold.

A little shout out to my mom here about diabetic supplies, she always tells people with the medical insurance to get them through a durable goods supplier as they are covered that way and you don’t have to pay out of pocket, thank you mom for the budget saving tip. So now back to the blog….

Well I am finally feeling a little better. I had been feeling off (more junk in lungs and short of breath) since mid last week and of course started an antibiotic to try and keep things from progressing. My weight after a brief rise has dropped right back to where it was. It seems my body just likes to be 150 pounds. The good news is that for my height (5’-9”), a weight of 150 pounds gives me a body mass index of 22 solidly in the acceptable range for transplant. I prefer to be around 160 simply because when I get sick I drop weight like a stone and if I don’t have the stores to pull from I just keep getting skinnier. My mom and Richard have been sending over some tasty food to help me out. Great soup and cheesecake!

Over the weekend we took down the Christmas decorations or more so Denise did. I did help a little at first, but really over did it when trying to take apart the tree. I got winded coughed some and then went into one of my jags where I literally can’t get in enough air. My oxygen saturation went so low I was teetering on passing out. I sat there gasping for air, even though my oxygen was on full blast I was in and out for a few minutes. This is very scary when it happens and not good for me at all I know. It’s really tough when the mind wants to do something and the body just can’t keep up with it all. I’m a guy who just wants to dive in and get things done and I just can’t anymore, pisses me off really. So I was feeling the ramifications of my actions for a few days after, but seem no worse for the wear now. In a case of perfect timing Denise had just called her brother Dave to cover for my weak ass in taking apart the tree, when her mom and dad showed up. So the short of it was Pop Pop helped pull the tree apart (I did hold the base, much to the chagrin of everyone….thank you very much…LOL). So now my beloved Christmas decorations are down and I do miss them. Being from the Christmas City (Bethlehem Pa.) coupled with a mom who always made the holidays really special made me love Christmas and always miss it when it’s done.

Last night was our Godson Johnny’s birthday, so we went over to see the Callahan crew and give our love. Being the first day out for me in awhile it was really nice. I don’t mind being cooped up, really I don’t, but it was a nice change of pace to be around all the activity and good people.

On the campaign side things are going really well, Congressmen Dent is going to be amazed at what the fledgling campaign has been able to do this quarter, as well as what we have planned for him over the next ten months. It will also be very interesting to see how he handles the tea party candidate that he now has to face in the primary. No more pretending to be one thing here at home and then going and voting completely different in DC. He is now going to be held accountable for his actions and really more to the point, lack of action.

And for those of you who took the time to read the whole post the title line is from the Dave Mathews song titled Pig….

We need the light of love in here
Don't beat your head
Dry your eyes
Let the love in there
There are bad times
But that's ok
Just look for love in it
Don't burn the day away…

What is happiness?

The other night I caught parts of a show Denise was watching on PBS called This Emotional Life: rethinking happiness, it was quite interesting and as titled did get me thinking. I did not agree with all that was said (I more believe we derive our own happiness from within and should not be so reliant on others for it), but it certainly did make some good points. The point is….we all need to think more about happiness and what it means to us. We should think more about what each of us can do to first make ourselves happy and then in turn to help those around us to find some joy in their days. It’s so easy to get caught up in the day to day grind and lose track of what it’s all for, what life is all about. Life should be about being happy and making others happy. Now I don’t think any sane person is happy all the time, but many of us have very little real joy in life. I for one have and continue to face huge challenges every day and as most would attest do a pretty good job of remaining happy and positive. It always amazes me how many people are truly miserable with their daily existence yet feel powerless to do anything about it. Hint….you can change many things in order to lead a better existence….really you can, trust me.

I have to say through the past year so many people have shown such love and caring for me that it’s almost overwhelming. The emails, cards and posts mean the world to me. I’m not the best at accepting emotional outpouring (I have been called the tin man and part Vulcan over the years….LOL) as I am more analytical than emotional and at times use humor to mask it all. So, I want to take a moment and whole heartily thank you all for the joy you have and continue to bring me in my life and hope I can over time return in kind. As my friend Chris said if it makes it easier for me to accept the help I’m going to need, he will keep a list and make sure I repay…LOL, now that’s a friend that gets me.

Now on the health front, yesterday I received my schedule for my three day evaluation appointment. It looks like two solid action packed days of meeting with near a dozen people and getting every orifice poked and prodded, followed by a third day where they decide to make their own holes and probe even further. All I can say is it should be an interesting few days. Which is really the way I’m looking at all of this, it’s an experience and one I’m hoping to come out of better than I went in. After all, life is not only about a destination. If we focus too much on where we want to be, we lose what we currently have. I for one have a lot of living to do before the big transplant event. It may not be action packed due to my health limitations but I guarantee it will be fun one way or another. My life will certainly be different after transplant and hopefully rewarding in different ways, but there is still tons of time to enjoy before the big day also.

The great Wii experiment of 2010

Well I hope everyone is having a great year so far. What!? It’s been five whole days already, no read on the year yet?...LOL...

The New Year is a great time to pause and take a good look around. I don't believe in resolutions per say as I feel they are a set up for failure, but do think the New Year is a great chance to see how you’re doing against your own expectations. This is a big point here; not friends, family or societies expectations for you, but an honest evaluation of YOUR thoughts of where you are and where you want to be in life.

This time of year provides a natural break and is as good a point in time as any to establish some short and long term goals that will help to keep things moving in the right direction (I stress again whatever that means to you individually). If you have your goals written down from year to year it's also a good time to look back at what you have from years past and see where you diverged from the plan. You can also re-evaluate if the things that mattered to you before still hold the same value to you today. For example; I always had a large amount of career oriented goals in my list that in all honesty do not mean shit to me anymore. A career may again someday rank high on my list of goals, but for now it’s mostly health related and relationship oriented needs that bubble to the top. See over the next few months I’m going to have to quickly get my affairs in order. In February I go for the evaluation for transplant and could within two weeks from then actually be listed for the double lung transplant. Once listed the wait could be days or years and so I will have to make sure everything in my life is ready for whatever comes next. So this year it’s about getting; the finances straight (and understandable to Denise), the home in order both here in Bethlehem and wherever we will stay post transplant, the will up to date (nothing is so selfish as to not prepare for what could come) and my body in as good a shape as I can to prepare for the grueling surgery.

Which leads me to my subject line, Denise bought a Wii console over the weekend!

Having been a bodybuilder and avid weightlifter for most of my life it should come as no surprise I love to work out. Problem is that right now it’s near impossible to do so. The way things are now I can barely move enough air to get around the house let alone lift any weights. So since I can’t do what I like to do the Wii is a great way to get some low impact activity and have fun doing so. The games are structured so that you can play and lose track of the fact that it’s actually working you out some or at least getting the body moving around some. I was able to do it for a little while before having to sit back and watch, but it was really fun. Our Niece Amanda even came over and was enjoying getting all the high scores.

I doubt it will make me look like this again, but it’s a good start.

Happy New Year!

Well 2009 is in the books, and I must say....thank you! This year was officially the worst year of my life. The year started off with the best promise but never did fully deliver for me. Being the total optimist I am this let down comes as quite a surprise. Looking back, this year took more from me than any other to date. For the new people in my life in late February while vacationing in Florida I got quite ill. I was as usual looking forward to this yearly trip since its so nice to get out of the nasty Pennsylvania winter weather and into the Florida sun for a few weeks every year. Its also a great opportunity to go to kick off summer by catching a few Spring Training games (I'm a baseball nut). This year though, during the second week of our stay I was feeling so bad that it was a huge effort even to leave the condo let alone do anything. We even called the airlines to see about flying out early so I could get home and mend. When we did finally get home the rest of the year has consisted of; hospital stays, home IVs, the experience of desensitization to an antibiotic in ICU, the need to now be on Oxygen, retirement from work, social security and last but not least the need for a double lung transplant. The three types of pneumonia and a staph infection I cultured have taken a huge percent of my lung capacity away leaving me with only 28% to go. The loss of capacity and freedom have really turned my life on end. Lucky for me I had a good job with Air Products and have a long term disability policy that pays 70% of my salary or we would really be screwed.

There was good this year too of course, we did get part of a good week in Florida and a trip to the Outer Banks in NC with the dogs, the yanks did win the series and I did after all get a wonderful BMW M3 for my 40th birthday gift.....

Now a new year begins and I plan to greet 2010 with the same optimism that I am usually known for. I'm not sure what will happen this year, but guarantee it will bring new experiences. Whether or not I get transplanted this year it's going to be an interesting ride.

*****A quick note, I changed the blog settings to allow anyone to post a comment.