Saturday, July 31, 2010

Beautiful Day for a Walk/Run

Today I completed my first 5k. The weather was perfect! It took me over an hour and I was 2nd from last but, I finished! Since I am NOT a competitive person, I will be doing these for fun and charity. Thank you to all my friends and family that have cheered me on today!

My next race will be the Christmas City Classic 5 Miler on December 11th; then I will be doing the Dash for Organ and Tissue Donor Awareness in Philadelphia sometime next year.

I had a nice nap after the race and then went out for dinner with some great friends from high school. After dinner we decided to walk around town, that's when I really started to feel some weakness and pain in my legs but, it was good pain; a pain reminding me that I accomplished something that I never thought I'd ever do.

Jim has been feeling really crappy all day. He is having a lot of stomach pain, mostly after he eats. It only seems to go away when he is laying down. He has been hugging his heating pad all day long. The positive part is that things are staying down, moving around and his lungs are still treating him well. This stomach issue seems to be something that a lot of post-transplant people seem to get but in time goes away...lets hope so!

Friday, July 30, 2010

5k Tommorow..."Because I Can!"

Tomorrow is race day for me. I have numerous reasons why I am doing this even though my training has been less than stellar; they are:
  • Because I can! I'm not saying this to sound self-absorbed but, I can run and there are so many other people that cannot even walk.
  • For our donor and donor family. It's another way for me to say "thank you" even though I do not know who they are.
  • To prove to myself that I can do anything I set my mind to.
To keep me going I will be thinking of:
  • All the CFers that are struggling to breathe.
  • Patience for all the CFers and their families waiting for THE CALL that will change their lives.
  • Jim, who has taught me so much about how precious life is and how to appreciate what you've got and how much I want him to feel better.
  • My friend (who was going to do this run with me) and her family. Her mother had and intestinal transplant several months ago and is going through a very tough time.
"Tomorrow I will beat my record time!"**

**I have never raced a day in my life!

Thursday, July 29, 2010

Yep, we're doing ok!

Well, I’ve had a few people asking why the blog has not been updated lately. To tell you the truth, I’m trying to stay focused on Jim, the house, work and prepare for my 5k that is on Saturday. Please, feel free to leave comments, email or whatever, I love reading all of the comments from everyone and we both check the blog daily for them! Right now blogging isn’t of extreme importance since Jim has been stable. He got out of the hospital on Sunday, July 25rd. He is still weak and his stomach bothers him a bit but everything has been staying down. His new lungs are doing terrific; we just need to get the stomach back on track. It has been getting a little better every day. His spirits are down because he is not where he wants to be in the healing process. His last 2 hospitalizations really took a lot out of him. He has lost weight but it will come back in time.

One of our blogging friends had her transplant on Tuesday and is doing well. Congrats to Cystic Gal! She is the last out of the core group of bloggers that Jim has been in contact with. First there was Jess (April), then Jim (May), Piper (June) and now Cystic Gal (July).

In ER at HUP
Secluded room in ER

Discharged 7/25/10

Quote: I look like an Ethiopian

Saturday, July 24, 2010

Progress, Anger & Hate

Today was a good day in regards to Jim's health. All the med changes on my prior post have been done, he has advanced his diet with no problem (don't jinx yourself, Denise)! His last meal consisted of a turkey sandwich,

So, why is it that I am so angry? I feel like I could run and run and run and never stop until all of this just well...goes away! I am ANGRY that I am sitting in a hotel while Jim is in the hospital. I HATE that we have to be at the hospital. I get ANGRY when I see other people going places and enjoying life without a care. I.HATE.IT!

That's it.

Friday, July 23, 2010

22 hours later...

Yes, 22 hours...not a typo...double digit hours. We got here at 7:00 pm on Thursday and did not get into a room until about 5:00 pm, Friday.

We spent 22 hours in the ER waiting for a room. Thankfully, they did have us in a private room away from all the germs lingering in the waiting area. Yes, there are benefits to having a compromised immune system. Actually, that's pretty much the only benefit that I'm aware of.

At 5:00 am (Friday) I decided that there was no way anything was going to happen until later in the morning so, since Jim was stable, I made myself go back to the hotel to get some sleep. 8:00am wake up call ended up with me calling the hospital to see what the deal was. The nurse said he was 2nd in line for a room and he was doing fine. So, I put the phone down for a second and ended up waking an hour later. This time I was going to get up right after I closed my eyes for another second (really an hour). I ended up getting up at 10:00.

The transplant doc's believe that this is medicine induced nausea and they have the following plan:

Discontinue Erythromycin - was initially taking this to get his bowels moving but, based on all of the tests, they are. Side effects, yep...nausea vomiting;

Increase Prilosec - he may have too much acid in his stomach;

Start iron via IV (level is low);

Decrease Prograf dosage because the level is too high (@21 and s/b between 8 to 12). This can cause nausea and/or vomiting.

Next step is to start back on clear liquids. If that goes ok they will go to full liquids (pudding, mashed potatoes etc.) and continue "testing" to see how far he can get. I am hopeful that this visit won't be as long as the last since the "testing" is dependent on food, not extensive procedures that can only be done durIng the week. We won't have to wait through the weekend for things to start moving forward.

Jim also had another PICC line put in. That really sucks because they just pulled his last PICC on Weds.

On a cool note, we have a room with a view of the landing pad and can watch the helicopters through the windows of the room. Hopefully that doesn't keep him awake. If it does, I hope its because someone is receiving a gift of new lungs, heart, liver...

Thursday, July 22, 2010

Back at HUP

Jim started vomiting again this morning so we are back at HUP. They gave him some Zofran for the nausea and it seemed to have helped. We are just hanging out in the ER now waiting for a room.

Wednesday, July 21, 2010

Dx: Opioid-induced Gastroparesis & Constipation

Jim was able to keep is bland lunch down so we busted out today. The narcotics made Jim constipated and caused things to "back up". So, no more oxycodone for Jim. Most of his other meds remain the same. They stopped Norvasc (for blood pressure), Reglan (BBW) and Colistin (inhaled nebulizer prescribed after his last bronch). His Prograf level is now stable at 8.7 with 3mgs. Based on this diagnosis, we (after all the trouble) will not be ordering the Domperadone.

His body is sore and we think most of that is contributed to the hospital bed (not so comfy). He slept in the reclining chair last night and felt better this morning.

Our next step it to continue to advance his diet and get some weight on him. He was 132 lbs yesterday. He also has to start working out again to get those nice new PRISTINE (yep, said it again) lungs in tip top shape. From there, who knows?!

Some pictures:

Jim "I want to go to Vegas."
Denise "I'm there!"

Click here to become an organ donor!

Monday, July 19, 2010

Domperidone Workaround & The FDA

The stomach emptying study went well. Thankfully, he was able to keep the eggs down. They looked like the typical hospital eggs (yuck!) and tasted the same. The test took an hour and a half. He ate the eggs and every fifteen minutes they took an xray. We were told that his stomach is emptying normally. That's a good thing, but what is it then????

Trying to making a long annoying story short:
We were told a few days ago that the Domperidone (med from Canada) should be received soon and that is was actually being filled at a pharmacy in TX. Today we found out that no one ordered the medication. A resident came in to tell us that if we want to use it we would need a script sent to the pharmacy and have it mailed to the hotel I am staying at. So, I had the doc fax the script to the pharmacy. I went to confirm that everything was faxed and was told that the hospital is not willing to dispense a non FDA approved drug while Jim is hospitalized there. Apparently no one knew this until the fax was being sent through the pharmacy at the hospital; I find that hard to believe and I had an extended debate with one of the doc's and the resident about it. So, Jim and I are going to work around the issue. We already have a script for Domperidone at home that was given to us when he was released from the hospital in May. My dad faxed it to the TX pharmacy (thanks dad) and hopefully we will have it by Wednesday.

We told the resident that OUR plan is to start Jim on liquids and work up to solids and asked him to address it with the attending doc.

"I'm leaving tomorrow!". He's not but we're working to get things moving along faster.

Sunday, July 18, 2010

Radioactive Eggs?

Today was quiet. Waves of pain and nausea, but nothing new.

We're still waiting to get the med from Canada (actually, getting it from a pharm. in TX). Docs keep hyping up the effectiveness of it, so hopefully it will be of help.

The doc's put orders in for Jim to get a gastric emptying study done. The test consists of him eating radioactive scrambled lie! This test measures the time it takes for food to empty from the stomach and enter the small intestine.

That's it.

Saturday, July 17, 2010


I still feel like I have to post even though Amanda summed it up. You'd think I'd take a break...

So here are some random text updates that I sent to friends and family today:

10:00 am
Jim, Amanda and I had a good night. No liquids for complete bowel rest. He got PPN (partial nutrition) last night. Doc's are trying to get the Canadian (Domperidone) drug from Texas. His belly is bothering him and mine is too.

10:40 am
You take care of yourself & the Drs will take care of Jim.

12:00 pm
Going for a walk. Finding it a bit harder to keep up with speedy!

12:30 pm
Hope he gets past this quickly

3:00 pm
His chart probably has a warning about the wife being a pain in the ass. Oh well, I'm making them work for their pay!

4:30 pm
Aww he looks good
4:30 pm
Yea, not so much now though. :( *sigh*

5:00 pm
They just took some abdominal X-rays again because he started with waves of pain and nausea. Weekends at a hospital are very unproductive...
They have orders in for a barium swallow and gastric emptying study but they won't be done until Monday. He's still having anxiety issues and they are giving him Adavan for that. They also said the Adavan can help with his stomach pain. He is finally sleeping after the last dose of Adavan. Nevermind...the damn nurse just woke him!

5:00 pm
My stomach is in knots so I started a semi-liquid diet. I did get a good run in at the hotel gym which helped alleviate some stress!

5:30 pm
Yes, wait and wait. The anxiety isn't as bad as it was when he was hospitalized for the tx but at least we know the Adavan is doing double duty. I also mentioned to the doc that the bouts of anxiety can also be a reason for the sudden stomach pain. I think Jim just wants attention.

5:45 pm
Put a do not disturb sign on his door. tell him i said to RELAX!!!

7:30 pm
yesterday me n uncle jim were walking and he looked at me and said i did this mostly for you.. so i can see you grow up and accomplish many things.. it brought tears to my eyes!

This Post Brought to You by The Rock

Hello everyone, the rock here :)

Not much went on today, we all got a good nights sleep. We arrived at the hospital around 9:30 and uncle jim was sitting up in the chair. He was up and down today. Sometimes his pain was unbearable but other times he was doing really good! :) we went for 2 walks today and he did great, the second walk he didn't feel as stable but he was at a good pace, those lungs are kicking butt and we couldn't be happier.
Not much going on because of it being the weekend... Hopefully they can go home soon and be with their girls that they love so much.

Yesterday uncle Jim and I went for a walk around the hall, as we were standing by the windows looking out at center city Philly he looked at me and told me that a huge reason he went through with the transplant and being so strong through everything is because he wants to live a lot longer and see me succeed at life, that meant so much to me and brought tears to my eyes, I love him so much, and I can't wait until he's sitting at my college graduation next may with no oxygen and living a great, healthy life :)

Quotes of the day...
" Justin beiber can go drown"
" I atleast want my rockstar to have pupic hairs before they perform!"
" I don't know what happened to all the nice people" talking to the nurse about nisey & I.

Before I came down to Philly on Friday I cleaned their house good & brought them clothes down.. I went through uncle jim's underwear drawer so today we were joking around and he asked me if I found anything interesting in his underwear drawer and I told him no.. He then told me that he had to Count the condoms in his drawer and I looked at him with a blank stare, he then told me that after every Dave Matthews concert they gave out condoms.. I thought that was the weirdest thing I've ever heard but it was pretty funny! Nisey told me that she refused to put that on the blog but uncle Jim told me I should but it was funny and there not much fun going on right now.

Friday, July 16, 2010

PICC line, GI doc's, Puking and Stuff

Last night was not a good night for Jim. He took the Prograf, a sip of water and then puked. The rest of the night he was out of sorts.

His Prograf level dropped down to 4.7 so they increased his dosage to 3.5 mgs. It's does not surprise me. Although he takes it sub-lingual, he still has to take a sip of water to rinse the rest of it down. I hate math but can say without a doubt that: sipping water + puking = low Prograf level.

And Just when I thought we'd get a long break or never even see one again, a PICC line decided to make an appearance today. Major bummer! Since Jim has been here they have stuck him for an IV at least 7 times, (about 3 of them were complete misses from the get go) so the PICC line does makes sense in addition to the fact that they are going to start him on TPN. His weight is now down to 133 lbs., not good considering he's 5'9". It does not help that he has been vomiting for the past 2 days. He cannot even keep sips of water down.

He did a few laps around the floor today to keep the pristine (still one of my favorite words) new lungs pumping strong!

The GI team came in today and after speaking with us they will be making recommendations to the transplant team. From what I took of the conversation with the GI peeps, the transplant team is consulted for everything. They are recommending that Jim get a barium test, and something else that completely slipped my mind.

Other options if they can't get anywhere are:
Botox injection to a portion of the stomach, done via endoscopy (weird, I know) or;

Oh, we also found out that Reglan has a BBW on it. Great...that's one of the meds they have Jim on. The GI doc's are going to recommend that it be discontinued.

Don't know how much will be done with the weekend being here. I'm not foreseeing us busting out of here until, at the earliest, Monday. :(

Well..he has his new lungs...
We are extremely grateful for that, but it would be much more easier to appreciate them if the belly issues would just go away!

Please, when you renew your license take a moment and consider being an organ donor or you can do it on line!

Thursday, July 15, 2010

Get Your Mask On!

It was a very bumpy ride in the ambulance for Jim but uneventful, except for the vomiting. We arrived at HUP at 1:30 am. They had a room waiting for us. Neither of us slept last night. Jim was vomiting all night and was extremely uncomfortable with the NG tube. I had a recliner and just sat there. There was nothing I could do to make him comfortable other than just be with him.

Since Jim couldn't wear a mask to protect himself because of the constant vomiting, I did make sure he was protected from any possible bug that may be lingering around the place! There were no signs on his door saying masks were necessary so I told the nurse she needs to have people put them on, and she did. I'm sure I'm not the only CF spouse out there that feels very protective in this type of an environment. Hospitals are the worst places to be when you're immuno-supressed! I heard one of the guys transporting Jim to xray ask why he had to wear a mask. The and girl standing with him said "Because his wife is making everyone wear them.". By the end of the night there was a caution sign indicating gowns, gloves and masks must be warn. Ha! Guess I told them!

The NG tube was removed this morning and that made him much more comfortable. It did help suction out anything remaining in his stomach, which decreased the amount of vomiting, in the beginning but, eventually it was just useless.

Throughout the day Jim had several enemas and suppositories to try and empty him out...lucky man. They did work a bit. I'm sure he's happy I mentioned this to the entire Internet but, it's part of our story. No sugar-coating going on here!

The doc's here also confirmed that there is no obstruction or perforation to his bowels or stomach. The current plan is to get a med from Canada called Domperidone. Domperidone helps with stomach emptying and decreases nausea and vomiting. The FDA is reviewing it but is currently restricted in the US. It is used elsewhere to treat gastroparesis. I still need to research pharmacies and prices for this. Has anyone out there tried this before? What pharmacy did you use? Any other feedback would be appreciated.

The vomiting stopped around 1:00 pm and he finally slept for a bit. The remainder of the day was uneventful.

My parents came down and dropped off some clothes and things for me to clean up a bit. I decided to stay at the Sheraton instead of the hospital so I can get some solid sleep. My niece will be coming down tomorrow to stay with me for the weekend. I'm hoping that well be out of here by then.

Thanks for the stuff mom and dad! Dave and Jan, thanks for taking care of the dogs and cat!

"Pushing to poop makes you puke."
"Shoving a tube up your butt makes you forget about vomiting."

Wednesday, July 14, 2010

Going for a Ride and it's not in the "M"

I am typing this from the ambulance that is taking us to HUP.

Jim has been vomiting since about 3:30 today. I took him to the local ER and they took stomach x-rays, and a CT scan. There is no obstruction or perforation to his bowels. They gave him several shots to stop the vomiting but nothing seems to be helping. Before we left they put an NG tube in to prevent Jim from aspirating into his lungs during the bumpy ride to HUP. Hopefully they will take that out when we get there.

So... I'm joking with the ambulance driver (that's what you usually do when you're shotgun, right?) telling him to drive faster and he tells me that he can only go up to 80 mph. What???? I could get us there faster! Yes, I did say that to him but was joking (sort of). If he drives over 80 an email is sent to his boss and within 5 seconds he will be called. He could lose his driving privileges or actual lose his job.

I really hope they can figure this out asap! I just wish things would go a little smoother for us. It's hard to get excited about things going well because I always feel like there's something lurking around the corner.


Tuesday, July 13, 2010

The Lasagna Stayed Down...

...but this morning he had problems with liquids.

He had a Carnation Shake when he woke up at 8 am and was fine. At 10 am he took some Milk of Magnesia because he did not "go" for 2 days and about 20 minutes later he was vomiting. He then tried some Ginger Ale, same thing 20 minutes later. Needless to say he didn't get his 10:00 breakfast in...but he did "go" twice! Woo hoo!

We are trying to figure this one out. If the chicken and lasagna stayed down, why did he have an issue with liquids this morning? Our only guess is that the Milk of Magnesia did something bizarre. Mental note: Do not take Milk of Magnesia on an empty stomach!

In the afternoon he had some applesauce and that stayed down as well as the pudding, Ensure and Ginger Ale he had later in the evening.

What the heck! So, it's back to taking it easy with the diet again. Tomorrow will be a better day, I'm sure.

Monday, July 12, 2010

A Bittersweet Moment

Today Jim and I went to HUP for his final 6 minute walk test before completing his last day of PT and RT!

On today's 6 minute walk test he walked over 1300 feet with no supplemental O2 needed at ****drum roll**** 100% saturation! Quite a difference compared to the 600 feet he walked pre-transplant with 7 liters of O2 and saturation in the low 80's.

A nice big smile after hearing 100% saturation and double distance than pre-tx.
I love, love, love this picture!

After the walk test he had some PT then we went to the lung center for our visit with the nurse practitioner, Belinda. Have I said how wonderful Belinda is? She always has a smile on her face. I will never forget the first time we saw her after Jim had his tx. She smiled and said "I was pulling for you guys!" It made me wonder how many people it takes for the entire transplant process to go through.

Talking with the Respiratory therapist and a fellow CR'er that was transplanted a week after Jim. Miracles DO happen!

Working his legs.

Belinda told us that Jim's stomach looks great compared to before. She showed us the x-ray from today and compared it to last Thursday. I'm no radiologist but, WOW it really changed! That explains the reason why he was able to keep the oatmeal down the last time he had it and the chicken and noodles he had yesterday. I made some lasagna today for dinner. So far, so good...

His Lopressor was discontinued. He has to monitor his blood pressure for the next week and if it remains ok they will start to taper him off of the Norvasc. The next time Jim sees Dr. H he may tapper the Prednisone as well. His WBC is good but his ALKP was a bit high due to the gall bladder issue. It is not as high as it previously was so they are just going to watch it. She did not seem concerned at all. Belinda called later this evening and told us that his Prograf level is 6.6 so she increased it to 2.5 mgs in order to get him into the therapeutic range, between 8 to 12.

His visits to HUP will no longer be 3 times per week and all of the lab work, PT and RT will be done at home. That take a lot of stress off of Jim, my dad (who drove Jim to every visit except two) and me also. It is hard to believe that it's been just over 7 weeks! There is no way for me to properly describe the feeling I had when we walked out of the office knowing that (unless something happens) we will not be back for a month. He has his new lungs! Oh my God, how did all of this happen? How did we get through all of this? I guess the closest description is"bittersweet".

I have to say that all of this seems like a amazing dream that I really didn't think was going to happen so quickly...maybe I was just stuck in an episode of Grey's Anatomy.

So we said goodbye and thank you to Belinda for a few weeks.

Saturday, July 10, 2010

Summer Fun!

So, this is how my weekend has been going so far...

I went to see Kid Rock and Bon Jovi Friday night. I debated back and forth many times of whether I should go or not because Jim had just been listed at Penn a month before. In the end I said "Screw it, I'm going and if we get the call while I'm there I'll leave and meet him at Penn". I knew that I'd constantly be checking my phone and wonder if the call would come while I was there but knew I still needed to live life in the "well-world". Who would have known that less than a month after I ordered the tickets, we would have gotten THE CALL?! So, here are some pictures of me and my friend at the concert and some photos of the boys:

Kid Rock is one amazing artist!!

And, we were trying different things we were smoking funny things
Making love out by the lake to our favorite song
Sipping whisky out the bottle not thinking bout tomorrow
Singing Sweet Home Alabama all summer long
Singing Sweet Home Alabama all summer long

Bon Jovi always puts a smile on my face! :)

Look at that smile!

I woke up Saturday morning....ummm, Saturday afternoon and Jim told me he ate oatmeal (just one serving this time). My first thought was "Man I hope he keeps it down." Thankfully, it did! His stomach is still bothering him but his weight is up to 140!
We got out again today and walked around the outdoor shops in Center Valley. The temperature was perfect! There were plenty of sales too. I got a windbreaker with a hood for running in the rain. We walked around for about an hour then headed to KFC for some mashed potatoes for Jim and dinner for me.
Today was the first day that Jim has been able to take a shower without needing a chair to sit on after he was done. Just the little things...
Interestingly enough, we just remembered today that this song was on the radio on the way to Penn when we got THE CALL. If you listen or read the lyrics, it is quite appropriate.

Just Breathe, Pearl Jam

"Yes I understand that every life must end, aw huh
As we sit alone, I know someday we must go, aw huh
I’m a lucky man to count on both hands
The ones I love
Some folks just have one,
Others they got none, aw huh
Stay with me
Let’s just breathe.
Practiced are my sins,
Never gonna let me win, aw huh
Under everything, just another human being, aw huh
Yeh, I don’t wanna hurt, there’s so much in this world
To make me bleed.
Stay with me
You’re all I see.
Did I say that I need you?
Did I say that I want you?
Oh, if I didn’t now I’m a fool you see
No one knows this more than me
As I come clean
I wonder everyday
as I look upon your face, aw huh
Everything you gave
And nothing you would take, aw huh
Nothing you would take
Everything you gave
Did I say that I need you?
Oh, Did I say that I want you?
Oh, if I didn’t now I’m a fool you see

No one know this more than me.
As I come clean
Nothing you would take everything you gave.
Hold me till I die
Meet you on the other side"

Needless to say, I've been having a GREAT weekend!!!!

Thursday, July 8, 2010

Week 7 and No Rejection!!

Well, we got the pathology results back from Jim’s bronch. NO REJECTION!!!! Awesome, awesome news! His Prograf level is at 5.6 so they are going to bump his dosage up to 2 mgs again. Monday the 12th will be Jim’s last day of PT and RT, they released him early. This means that we will only have to go to Penn on the days that the doctor or nurse practitioner wants to see him. The nurse practitioner said probably monthly unless something comes up. They are allowing him to get his blood work and CXR’s done locally as well. We will be touching base with them weekly between doctor visits. It’s hard to believe that it’s only been 7 weeks and things are starting to settle down. The only obstacle at this point is the gastroparesis. Other than that *fingers crossed* things are going well!

Tuesday, July 6, 2010

Half Full

Hanging out waiting to meet with Dr. H.

Yes, there is a smile under that mask!

We met with Dr. H this afternoon. The path results from the bronch are not back yet so we do not know if there are any rejection issues. The doctor did say that he is growing MRSA and pseudomonas in his upper airways so they are treating it as a precaution with an antibiotic called Colymycin that will be inhaled twice a day for 2 weeks (only 15 minutes). They are increasing the Bactrium. Both of those together should kick MRSA and pseudomonas' butt!

They decreased the Lopressor to 25 mgs and his Prograf dosage will remain the same. Current Prograf level is 8.3.

His CXR looks about the same but over time they can see that the PGD is clearing.

If there are no indications of rejection they will decrease the Prednisone to 15 mgs. If there are, they will adjust his immunosuppressant meds. Dr. H said that if there is rejection he thinks it would be a very mild form but also added that nothing is 100%.

"Half Full" Life is Good shirt.

Some PFT results. Getting better each time!

Monday, July 5, 2010

Yep, Just the Little Things!

This is the 3rd day in a row that we got out of the house together other than the standard trips to Philly. Woo hoo!!

We went pillow shopping for Jim. Pre-tx he had to sleep with his chest raised so as not to let gunk settle in his lungs. Now, he can sleep flat on his back if he wants to. Yep! Just the little things... We went to Target first, no pillow but I did find some new shorts and tanks for myself. We found a pillow at Kohl's then did 3 laps around the store for Jim to stretch his legs a little more. I was walking at an average pace and looked back to find Jim right behind me. Pre-tx I would have been walking much slower and still making sure he was with me. He was trucking along at a pretty good clip! Yep, just the little things...

Jim's belly is still messed up. His feet seem to be swollen too but that could be from the heat. It was 100 degrees out today! Even with the heat, Jim didn't have any problem with his lungs!

I got my run in this evening when the sun and temperature went down to a cool 90 degrees. By the time I was done it was down to a chilly 82 degrees.

Tomorrow we will be headed to Philly to get the results of the bronch. Wish us luck!!!

Sunday, July 4, 2010


It was a good day! We went to my brothers house today for a picnic. It felt nice getting out again. Man, it was a hot one! I hung out by the pool for a bit and Jim stayed in the AC and relaxed. Jim's lungs feel good. He can go in and out of the hot/cold without hesitation!

He was cleared to drive when we went to Penn on Friday and today he decided to try it out out. So, here he is...his first time driving with his new windbags! No, he didn't take "M" out. That would have been a bit too much for 6 weeks post tx! He has been eyeing it up since he was discharged from the hospital though.

I found a text on my phone that I got from a friend on May 18, the day before Jim received his transplant. It reads:
"How ironic! God has seen you struggling (with something).
God says it's over. A blessing is coming your way..."

My reply to the message was:
"Oh I hope that blessing is coming my way soon!..."

Yes, that is ironic. 22 hours later, Jim was in surgery!

"Every day is a good day, it's just finding the good in it." Jim's reply after I said "Today is a good day."

Saturday, July 3, 2010

Takin' It To The Streets

Today we went to Heavenly Hedgehog for some ice cream, Aardvark for my new sneakers, and took a little walk on Main Street. Yes, Main Street, the street that Jim hasn't walked in years because of the hill. Musikfest...stayed at the bottom portion of the 'fest. Celtic Fest...same thing. This year anything is possible in baby steps, of course!

After our walk we went to KFC to stock up on some mashed potatoes for Jim. His stomach is still not cooperating! If it weren't for his stomach he would be able to enjoy his lungs much more. All in time I guess.

I got my 2nd run in this afternoon. I ran in the sun for most of the time. I can't wait to test out my new sneaks! They are extremely comfortable compared to the ones I have been


"Continuing to hit new highs. just need to get the belly figured out." regarding his daily spiro tests.

The Stone Pony t-shirt is from my brother, Brian. Stone Pony was the starting place for a lot of the music s in the NJ music scene including Bruce Springsteen (Jim's favoriate) and Bon Jovi (my favorite). Next Friday I will be headed to the Meadowlands to see Bon Jovi and Kidd Rock!

Wishing everyone a safe and happy 4th of July!


Friday, July 2, 2010

Oatmeal and a sparkling clean bathroom floor

The bronch went smoothly. The lungs look good except for a spot in the upper airways which Dr. H thinks is coming from his sinuses. It is possible that it is pseudomonas and it will have to be treated it with antibiotics. Just so you know, this is something that can happen to a non-CFer but will not always grow into pseudomonas. Most CFers have it in their nose and lungs so the chance of it being pseudomonas is much greater (hopefully that makes sense). There were 12 biopsies taken and we will get the results of them next Tuesday. They look for lymphocytes as signs for rejection.

Now, on to the oatmeal story...
Jim's stomach is still messed up because of the gastroparesis but he though he'd try eating some oatmeal because you can only eat applesauce, yogurt, eggs (only allowed 3 yolks per week) and mashed potatoes for so long; take it from a Crohn's person, it gets old! He was fine for awhile, my niece stopped by and we talked for a little and then went outside to sit for a bit. When Amanda and I went back in the house Jim was walking out of the bathroom. Needless to say, the oatmeal was a bad decision but hey, he tried and the bathroom floor is now sparkling clean! ;)

We bought this t-shirt from a fellow friend and CF blogger. She received her transplant a little over a week after Jim. **This picture is for you Piper!**

We came home to a huge plate full of muffins, cinnamon buns and strudels! Thanks for putting the caveat on the tag that Jim has to share with me! I'll be having one of those cinnamon buns with a cup of coffee in about 9 hours!

Thursday, July 1, 2010

Bronch Tomorrow

Jim was extremely wiped out today from PT and RT. He looked so sad and frail. I really wish I could do more to make him stronger. It doesn't help that he is not eating well. I made him some eggs and an English Muffin this evening and it made me feel better knowing that he got more nutrition in him. His stomach was really bothering him but the eggs and muffin seemed to go OK.

We'll be back in Philly tomorrow for his bronchoscopy. I am not sure if they plan on doing any biopsies. This will be his 2nd bronch. He had the first one when he was still hospitalized in early June. I found out the results not long after the procedure was complete so I'm assuming that we will know tomorrow if there are any signs of rejection (I hate that word!).

Here's hoping the bronch results show that the lungs are "Pristine"!