Radio active eggs, again.

Trying to make t is a short one. I don't like typing on this iPad. :/
Today consisted of a gastric emptying study and an MRI.
He had to eat radio-active eggs for the gastric study and pictures were taken of his stomach periodically to see how fast the food moved through. The test showed that he is having an episode of gastroparesis. With that diagnosis the doc's recommended at he try a med called Domperidone. Domperidone was pulled from US shelves so we have to purchase it from Canada. Apparently this med is safer than taking the Reglan that I mentioned in yesterdays blog post. He had an MRI this evening and hopefully we will have the results of that early tomorrow.
His diet has been advanced and he does have a bit of pain after eating. They took him off of the Dilaudid (IV pain med) because the last dose he received put a large welt on his arm where the site of his IV is. They are giving him Oxycodone orally in place of it.
Almost forgot. The doc told us today that when we came in Tues. the doc was concerned that it may have been "catastrophic". Thanks for not sharing that info until today doc...i appreciate it but if it happens again I may not believe that the "rapid response" is "procedural".
Hopefully we will get out of here tomorrow!!

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!