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.