Biopsy tomorrow 6/30

Left for St. Louis on Sunday to attend a Heart Transplant picnic, we met many new transplant patient some has had them 3 months others as long as 20 years it was good to ask them questions. After that headed to our hotel, Susan swam because my swimming suit was to big, after that headed back to the room and order more IMO pizza. Today we did alot, dropped off some AFLAC info, went to the movie's and saw Hangover what a hoot, ate Chinese for lunch, got my haircut (not in Illinois) in chesterfield which is where we are staying, very nice area. Then we went to the mall to look for a smaller swimming suit, but I didn't like any so I settle on my own again and put two safety pins in place, nice fit. First time in the pool I walked lapse, which was kind of hard as Susan slept and then after that we cleaned up and changed for dinner. We should be finished at the hospital by 3:00 and heading home, should get the results on Wednesday afternoon. we'll post the results when we get them. thanks for all your thoughts and prayers.

Cheers
Frank

Good night
Susan

KU blood test.

Hi, Just wanted to let everyone know that I had my weekly blood test this week at KU med. it was a lot quicker drive!. it was good to see some of the people at KU. my blood test showed a high level of Prograf in my blood, this may be the reason I have been a little on edge ( sorry Susan) well the results were sent to my Doctors at Barns Jewish hospital and they have lowered my prograf. maybe I wont be as jittery now. All in all I have been feeling great. Yesterday I drove to the doctor and ran a few errands on my own, if was really nice to get out by myself. I made a few visits to see some friends and that was nice. I'm up to walking for about 25 minutes at a time with no problems. The Doctor gave me the OK the walk some laps in the pool but I haven't tried that yet maybe tonight. Thanks again for all your thoughts and prayers.

Cheers

Frank

Happy Birthday

On this beautiful sunny hot summer day, we would like to say a special prayer of thanks for Frank’s heart donor. To their loving and grieving family their love ones heart lives on, not just surviving, but thriving now 1 month later. Please say a prayer with us of thanks for all organ and tissue donors everywhere at this time for the gift of life they have offered. “It is truly a miracle of life they have given back to us!
Love to you all, Frank and Susan

ROLL CALL - LET'S HEAR FROM YOU!

CELEBRATION IS IN ORDER: BIOPSY CAME BACK: DRUM ROLL.......

aaaa............ 1A!

WHICH MEANS - GREAT BIOPSY!

ECHO - LOOKED GREAT!

NEXT LABS, ECHO, & BIOPSY SCHEDULED IN OF JUNE!

Send Frank any or all your comments you would love to share with him or about him, they can be nice, funny or whatever! I want to prove to him that you bloggers are out there wanting to know how he is doing, daily, weekly or monthly.

Have a great night!

Love ya, Susan :)

10:00 pm - We are home!

As you can see I made the decision to head home, my back was feeling good and I just didn't feel like doing the whole hotel thing another night. Frank did not sleep well on Tuesday nite and ended up the next morning with a few new pains in his chest, so he needed his own bed.

Tuesday...
We left a day early as Frank said, to attend a meeting with other heart transplant patient (HTP), all I can say was WOW. The meeting started with the President of the Pitter Patter Organization letting all of us know about up coming monthly HTA meetings, picnics, trivia night and fundraiser to keep these event possible. After that Jennifer Manolis, Heart Transplant Social Worker spoke, this women has so much drive, compassion, devotion to the organization and all of us! She then asked that all the HTP, introduce themselves and let everyone know when they had their transplant. Jennifer turned towards Frank and said, this is our newest transplant recipient and that is when I could of broke down and cried, like I could do right now. Then it just kept getting harder and harder for me to fight back the tears, we went around that room looking and hearing each individual young and old say their pitter patter # and then telling us with such joy how long they have been a recipient. I was happy for them and also sad to think these young people had to go thru such a difficult time in life, but really my tears were of joy for their second chance & the gift of life the donor gave them as well as me to be with the love of my life for many, many more years...



Jennifer then announced what the topic of the meeting was and gave some information about the speaker Laura Roldan, RN, ......... TOPIC: sexuality and the transplant patient.

Basically it was pretty short and sweet...one question came up that I have to share with you.

"When can you have sex after your transplant?"

For some reason most of them looked at Frank since he was the newest HTP,

I even looked at him :) like did you write that question? Frank...Nope!

• Anyway Laura said, well I think its different for everyone but basically when you are feeling good and can walk up a flight of steps with no problem, go for it.


• You will all be proud of Mr. Frank, he asked what is considered a flight of steps? Everyone laughed,


• Frank then said, well on my fourth day after my surgery, my physical therapist had me walk and then had me go up a flight of steps, everyone laughed again!


• Laura said, Frank I think it would of been to soon at that time, your sternum and incision were probably not ready for that yet! The end...
  
  Wednesday...
  Blood labs - his Prograf anti-rejection level came back high (17 - they would like it to be 10) lowered medicine.
  Echo- results not final, still a little fluid. Not concerned.
  Biopsy - went fine, took 15 minutes, but Frank had to lay still for 2 hours. We will let you know the results but it could be tomorrow or the next day before we know.
  
  After that jumped in the car grabbed some IMO Pizza in O'Fallon, Mo, which was delicious (Angie) by the way and headed towards home. Barely missed the storms along the way. Picked up Molly at her best-friends home. Morgy...Molly saids thanks and she had lots of fun hanging out with you!
  
  Bye Blogger, Susan

Heading to St louis

Hi all, Susan and I are heading to St Louis on Tuesday for a biopsy on Wednesday. We plan on going to a heart transplant support group meeting on Tuesday put on by Pitter Patter. We will most likely stay until Thursday to return home. My doctor plans to do the biopsy through my leg this time and when they go through your leg you must lay still on your back for two hours after the biopsy. so it should be a little late to return home on Wednesday. But that's up to Susan Because she will be doing the driving, speaking of Susan what can I say, I have had it pretty easy through all of this compared to Susan. I know I could not have made it through any of this with out her by my side, she is my guardian angle. she has put her life on pause for the last seven years while we have delt with my illness. and I do mean we. she is the strongest person I know and I wouldn't have made it this far with out her with me. She has lived through all of my fears like they were hers, she has been through much more than I, she has been with me through some really tough times and has felt every pain and every shock and every fear that I have.She is amazing. and I love her with all my heart and sole. So when you see me next and you tell me you cant believe how great I look, it's all because of her. I love you Susan

Cheers

Frank

Results from Biopsy

Received the call about 4:30pm from Theresa, Our Transplant Coordinator, the biopsy came back a 1b.

The doctors increased one the anti-rejection drugs , left ankle is still swollen as well as my left calf hurts when I walk. Echo came out fine, but I had a little fluid around the heart which might be making me feel fatigue, short of breath (don't let him fool you its all that talking on his phone that he does or running back and forth to the throne).

Good news is that we don't have to drive back to St. Louis till Wednesday for the next biopsy which will be done thru the leg, because the doctor still had a hard time going thru the neck.

With all that being said, Dr. Joseph still thinks I'm a Superstar! (Sleeping) Good Night All...

Frank & Susan

Back in St. Louis-everything great so far!

Susan called this afternoon and wanted me to post so that is exactly what I am doing! Yesterday Frank didn't feel good (he is still the King of the Throne) , his left ankle was swollen due to retained water and he also had trouble catching his breath after his 20 minute walk. They were concerned and happy to be traveling to St. Louis today. They arrived in St. Louis about 9:30 this morning to start the tests. So far here are the results:

BLOOD WORK - PERFECT :)
ECHOCARDIOGRAM - SHOWED A LITTLE WATER AROUND THE HEART (causing his shortness of breath)

Dr. Susan Joseph of the transplant group came to see him, walked in and said "How is my Superstar?" Frank just beamed at that statement. She looked at his ankle (which had gotten smaller by today) and said she was not concerned and his ankle looks OK. They then spoke about his stomach problem which she said the he would have to "work through it". That problem is a side effect of one of his medications, she said his body would eventually get used to that chemical in his system and everything would be fine. It is a drug that he will not have to be on forever. Regarding the water around his heart, she said that was "no problem" and is probably due to the fact that his old heart was so enlarged that there is a lot of extra space in there because his new heart is of a normal size. The body tends to fill in cavities with fluid.

Susan said Frank is doing "awesome", he is scheduled to have his catherization today and the results will be available tomorrow. Dr. Joseph told them to go on home and if the cath shows a need to come back, they will let him know when they call with the results tomorrow. Susan thinks they will probably stay the night and save 8 hours of nasty I-70 time just in case they need to return. I think that sounds wise, too!

So Frank continues to dazzle and amaze everyone with not only his charm, but his health!! Keep the good thoughts and prayers coming. I will post again when Susan calls me with the cath/biopsy results.

Weekend at home

Hi All,

Well it was great to be home for the weekend. we had a busy weekend. Susan worked way to hard. Friday stayed home, my son Rudy left for the lake, Rosetta & Rudy and Aunt Bevie stopped by later in the day to visit and wipe off all the germs off all handles, that was nice.

On Saturday we ended up in the car most of the day. We went to Overland park to look at some outdoor furniture, when we pulled in the driveway there was a big stone with their name carved in it we were surprise to discover that their name was "BARNES", we just got back from Barnes? So of course we had to buy the furniture. Then off to Lawrence to buy some corals for the reef tank, they were beautiful additions to the aquarium. when we were walking through downtown Lawrence some collage kids seen me walking with my mask, and started yelling SWINE FLUE this did not sit well with Susan and she let them know it, I thought it was kind of funny.

On Sunday we went to mass at St Anthony's and it felt great to be back, we seen many friends and Aunt Josephine P at church. After church we stopped by the wholesale club and ran into Ron O and Shelby, it was good to see them. It's really neat to see the reaction on peoples faces when they see me. All the while we had to be very careful to stay close to a restroom, it seem that my little problem with my stomach is still giving me plenty of problems. I hope I start to get over it soon I don't know how much more my rear end can take. but I'm not complaining because I feel great heart wise. I need to gain some weight I look like one of those starving children from a third world country that you see on TV. My leg are pretty shaky. I guess I need to get walking to build up some new muscle. Saturday night Concetta and Randy stopped buy on there Harley. Last night Lenard O and Joe T came over and had dinner it was good to see them all. Hope everyone had a great weekend as well. keep me in your prayers for a good biopsy result on Thursday when we return to St Louis.

Cheers

Frank

:) You're right there's nothing like HOME!

Happy, Happy, Happy...

Frank and I arrived at home, pulled into driveway about 11:15 to see balloons, banner, & inside more balloons, flowers, clean home and our favorite girl Ms. Molly! Thanks Rudy & friends and Tim/Mindy/Morgan and Connie for everything, looked great inside and out. I'm sure you could all image Frank and I looking at everything like it was Christmas morning.

12:45 Frank still visit the throne, in between sorting mail, pills and bills. Me putting and throwing alot stuff away. Thank you all for the cards, gifts and wonderful thoughts you have given us. Talk to you soon... Love, Susan

Frank writes...

One of the first things I wanted to see when I got home was my reef tank, to my surprise Joe T and Rudy made a beautiful addition of 2 great looking fish. Thanks Joe and Rudy I have really missed seeing my aquarium.

I can't tell you how great it feels to be home, It was great to just sit on the deck this morning and enjoy the morning weather. And I can't forget Molly it was fantastic to see her when we got home. Thanks Mindy and Tim for taking such great care of her. she seems to be depressed this morning, I'm sure she misses Morgan, Matty and Mo Jo. Thanks for coming over and putting up the balloons and welcome home sign I was really touched. and Rudy wants to thank Mindy and Connie for all the help with the house you made him shine.

Cheers, Frank

on our way home

Hi all.

Well the biopsy results came back as a 1b same as last week, not great but not rejecting so that's good. they have increased one of my anti rejection meds but told me I can return to KC. so Susan and I are packing our bags and coming home tonight. I have to return to St Louis next Thursday for my next biopsy so keep your fingers crossed that the change in meds help the biopsy results. see you all soon. thanks for all your love, prayers and thoughts
they have meant the world to me.

Cheers

Frank

Testing day - 6/3/09

Funny of the day: While wearing mask remember you can't take your pills, they don't seem to go thru that damn mask.
Frank tried this today, after he had his blood drawn, I laughed my _ _ _ off! I even think he tried it twice.

New Rule of the day: You all are going to love this, you can hug Frank or be around him as long as you are not sick! Foam in & Foam out!
(Wash hands)

Blood Levels: all labs were good!


Sutures: The stitches from the 2 garden hoses were removed.

Echo test - no results

Biopsy: no results till tomorrow afternoon.
You will be awake and conscious during the entire procedure. The doctor will use medication to numb the area of your neck. A plastic introducer sheath (a short, hollow tube through which the catheter is placed) is inserted into a blood vessel. A bioptome will be inserted through the sheath and threaded to your right ventricle. An X-ray camera may be used to position the bioptome properly. The procedure took 35 min.

Throne: took a stool culture to see if there is infection.

Outing of the day: Missouri Baking Company - yummie Rozann

Results tomorrow... sometime in the afternoon...blog you then :) Cheers Frank & Susan

It's June Already!

Susan writes...

6/1 - Currently, Frank has been a little under the weather since last night. Symptoms: abdominal cramping and hanging out on the the throne, poor guy! He's napped on and off today, he did eat good and now he is reading.

I contacted the doctor today, picked up some medicine, they did make a change to the dosage of one of his anti-rejection medicine. Hopefully these changes will kick in soon to give him some relief.

9:26pm - 6/2 today is the same as yesterday for Frank, schedule for Wednesday 9:00am blood work, echo next and then biopsy in the afternoon. Thursday we should get the results, not unless they tell me something different tomorrow. I just hope there are alot of bathrooms along the way... Me, Off to bed... Frank off to the stool...