Another great biopsy

Hi all
Susan and I had a great time last week, we went to St Louis on Monday for my biopsy on Tuesday. When we got to St louis Susan had a few work things she had to take care of on Monday and Tuesday while I went to Barns to have my biopsy. The people at Barns were not happy that I planned on taking a cab back to the hotel if Susan wasn't finished with her business by the the time the biopsy was finished. Well it all worked out and Susan was there to pick me up after all. The biopsy was a little rougher than the previous ones but I survived and the results were good news. I had a grade zero again so that was great. We left St Louis on Wednesday for the lake of the Ozarks, Susan had qualified for an Aflac vacation at the Ozarks from Thursday to Sunday. Jeremy and Angie Frye invited us to stay at there lake house on Wednesday to practice for the up coming vacation. We spent the rest of the week at the Horny Toad Resort, and it was a fantastic time. Thanks again to Jemery Frye for a great getaway. It was great to get a zero on my biopsy, all your prayers are being answered. My rehab is going great, and I don't have to return to St Louis until mid September. I'm really looking forward to watching Rudy play football this fall. His first game is the 29Th of August. if anyone wants to catch a game this season just give me a shout. I will talk to you all soon, in the meantime please keep me and my Donner family in your prayers.

Cheers
frank

Getting better every day

Hi all,

Well I have been in cardiac rehab for 6 sessions now and there starting to work me a little harder, I still think that I could do more than they are asking but I guess they want to take it slow. They have me working on the treadmill, stepper, bike, and arm machine for 10 minutes each but they have increased the level of each machine. I went to KU for a sonogram of my left leg to check on the swelling and it was normal no blood clots so that's good news. My blood sugar has been creeping up the last month or so so it looks like I have to start taking insulin to keep it under control, they tell me that I might be able to stop the insulin when I stop taking predisone, after the transplant I was taking 70mg and now I'm down to 22mg a day. hopefully I will be able to get completely off the predisone within the first year. But other wise have been feeling great. Susan and I have been getting out quite a bit and it's great to see and talk to so many friends that have been keeping up on my progress. I have been harvesting all kinds of veggies from my garden the last couple of week's and have been learning how to can all my goodies, so far I have canned tomato sauce, salsa, tomatoes with cacutzza, pickles, peppers, and peaches, Concetta has shown me the Doe's and dont's of canning, she's a real old McDonald. I have a biopsy comming up soon I will post the result when I get them. Well I'm getting a little long winded so I will talk to you later. please keep me and my Donner family in your prayers. give the gift of life be an organ Donner.

Cheers Frank

Cardiac Rehab

Hi, Well I started cardiac rehab Wednesday at Ku med, I go on Monday, Wednesday, and Friday, so far it's been pretty easy. I guess they start you out pretty slow, I've been doing 8 minutes each on the treadmill, recumbent bike, elliptical trainer and a machine that you peddle with your arms. They tell me that they will make things much harder as time goes by. I tried to explain that I think my new heart has a lot more horsepower than my old one It seems that I have been working much harder at home just walking for 30 minutes each day on my street trying to keep up with Susan's pace. I'm feeling stronger and stronger every day and can't wait to get to go golfing next month. I've had some swelling in my left ankle the last couple of weeks so the Doctor is sending me for a ultra sound of my legs to make sure I don't have a circulation problem. I look pretty lopsided when you look at my feet but at least it doesn't hurt. Susan and I are getting out of the house quite a bit so that's been really nice, I feel like it's the old days when I actually felt like going places So I hope to see you out and about . My next biopsy is not until August 11th so no road trips to St Louis for a few weeks. Please keep me and my Donner Family in your thoughts and prayers.

Cheers

Frank

Back from St Louis

Hi all,

Susan and I just returned from St Louis, for my two week biopsy. I got great news that the biopsy came back a zero. that's my first zero and hopefully the first of many. We had a great time while we were there,We brought Molly with us this time so that was fun, we took a long walk through the west neighborhood and side shopping area and then had a great Mexican dinner. we sat outside so Molly was able to sit under the table while we ate. Later we went down to Bush Stadium and took in some of the atmosphere of the All Star Game, It was quite a site. the next day I walked from the Parkway hotel to the hospital while Susan took Molly for a Spa treatment. after we were both finished we returned home that night, Molly and I were just exhausted, Next time Susan gets the Spa treatment.

Ku test results

Hi all, well I had some blood test at KU on Tuesday and the blood levels of all my heart drugs are looking very good, Rudy came home for a few days and he had to give some blood as well. Earl yer in the year I had enrolled in a family related study at the University of Miami for family's with a history of congestive heart failure. This study is to try and see if there is any link to heart failure and certain genes that are passed down from generation to generation. Carl, Rudy, Me, my sister and nephews are part of the research study, we all had to give blood for the study. This was the first time Rudy had time to give his blood so I brought him with me when I had my blood test. I had to laugh when the nurse found out Rudy was starting nursing school she gave him a lesson on how to stick the needle in the vain. Susan and I will be going back to St Louis on Tuesday for another biopsy, It kind of nice not having to go every week. As far as I'm concerned I have been feeling great, I have noticed that the last week or so that I'm starting to get stronger and stronger. I should be starting cardio rehab in the next week or two, hopefully that will help give me some strength in my legs, they seem like the weakest part of my body. well I will post again when I get the results from my biopsy. Thanks for all you thoughts and prayers, and please keep my Donner family in your prayers as well.

Cheers

Frank

Happy forth of July

Hi All,
Hope everyone has a wonderful forth of July. This is the first year Susan and I will not have a forth of July get together. usually many of Carl and Rudy's friends show up to shoot there fire works, but the boy's won't be home this year so I guess it will be quiet on the home front. In years past it has been like a zoo out here at night, I remember years where there were 50 or more teenagers shooting fireworks in all directions, I wont miss that part. but I will miss seeing Carl and Rudy. hope everyone has a safe and happy Holiday.
Cheers
Frank

My biopsy results

Hi all, Well the results are in from my biopsy on Tuesday and they came back a 1A so all is going great. I have really started to feel a lot stronger this last week. Yesterday I felt a little fatigued. but maybe that was from the biopsy. I have noticed that the days I feel a little week are the days that I seem to retain fluids in my ankles, I guess the extra water just sloes me down. but I'm not complaining I can't compare the way I feel before and after the transplant, its like night and day. Unfortunately when we got back from St Louis our pool had turned green so I have been trying to get it in shape for the forth, I think I have got it going in the right direction now, I was a little disappointed that I couldn't walk in the pool when we got home, maybe tomorrow. I hope everyone has a safe and happy Holiday. Thanks again for all your thoughts and prayers. and please keep my Donner family in your prayers as well.

Cheers

Frank

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...

Sunday - May 31st -

Susan writes... It's Beautiful Sunny Day!!!

First outing today is church 10:30am- we are going to "the immaculate conception" in Maplewood. Ken, (heart transplant recipient) who visited Frank in the hospital highly recommended we go there. Frank is looking forward to attending mass since his Miracle took place. We will be thinking of all of you in prayer.

6:45pm Hi Pernice Family, we heard (by Aunt Rosetta) we missed a great party, wish we could of been there.... congratulation Girl's!

Franks, Looks great, doesn't he? At this time he is just resting... as he give his secretary his numbers to post on his vital sign spreadsheet.... Love Us...

Thanks Concetta

Hi, Well it Saturday and we have relocated from the parkway hotel to the Marriott residence Inn. the Parkway was great but this new room has a kitchen and bedroom so it feels much more like home. I wanted to thank Concetta for cumming up this week end to help Susan and me move from the hospital, and hotel to hotel. It was great to see her and she really gave Susan a helping hand. I'm still overwhelmed when I sit here and read all my friends and family's comments. it makes me feel really special. Thanks for all your thoughts and prayers. Susan and I just got back from the grocary store and it will be great to not have to leave for every meal. maybe I can get a little more rest. and it will be much easer on Susan.

Cheers,

Frank Mascaro

10th day -

Susan writes...

WOW, (My new word) is AMAZING. I never used this word so much, they should change the meaning of it in the dictionary to FRANK, Franko, Frankie, Frank the knife, Frank the spouse, Frank the wife, and most of all FFRRRAAAANK.

I think Frank slept most of the night, just a few time up, few complaints about the bed or pillows, most of us do that when we are away from our own beds. For me. I woke up at 3:15, l layed there lisening to every breath he took, thinking I need to sleep but I also wanted to stay up and make sure he was okay. Its funny how much of us want to watch over are love ones, and we will do anything to make sure they are safe... Thank you once again for all your continued thought and prayer keep them going... Love ya...


***** U P D A TE ******** 9:40 P.M.
Good Evening All - Well today was an exciting day for Frank. Frank was desperate for junk food. I believe he was craving a BIG MAC. Frank directed me to get on the highway.....we traveled 25+ miles looking for a McDonalds. Frank stated that there were "always McDonalds close to the highway".....We ended up in Collinsville, Illinois --- Frank found his McDonalds and his Big Mac. After he filled his craving.....he decided he wanted to go to Walgreens Drug store for some "items". After that he discovered a SuperCuts and Frank got his hair cut. All in all Frank was a happy camper. We traveled back to the city limits of St. Louis only to discover a McDonalds was located a block over from the hotel......Frank is now tucked in bed with his remote in hand.....Cheers
Concetta

Day 9 Revised Update

Hi,

Well I still cant believe this has happened to me! what a wonderful dream come true, I still pinch my self every morning. One of my many many doctors has just left and told me that the plan for today is to wait on my biopsy report. If all goes well I will be joining Susan at the Parkway hotel. If the labs don't come today I might still get to leave, this will depend on my white blood count, so keep your fingers crossed. Concetta is coming up to help Susan and I this week end, I cant wait to give her a great big wave. thanks for all your thoughts and prayers.

Cheers

Frank

Concetta Writes @ 8:35 pm
You guys won't believe this ....but Frank was released from the Hospital. I have to tell you that when I first saw him I couldn't believe my eyes. Frank looked like he just walked off a cruise ship. I stood there with my mouth open.....and just couldn't believe my eyes. I know this probably sounds repetitive to all -- but I still can't believe this man has had a heart transplant. We left the hospital around 4:00 - had all his prescriptions filled -- came back to the hotel room to unload his belongings -- and then we traveled to Sam's Club and Walmart. Frank is still going strong......!! This guy is unbelievable and I feel so blessed to be able to see Susan and Frank. Okay -- Now for the results of Franks biopsy which he originally thought he would have to wait until Friday -- However, as luck has it he received his results today. How the biopsy grading works -
(zero) - 0 - Great Biopsy
1A - Great Biopsy
1B Some inflammation - this is not rejection - meds are adjusted
3A Rejection - they treat w/high doses of predesone or admitted for IV Steroids
The Doctor told Frank the last two days one of the drugs he takes is called prograft - blood levels for this drugs should be above 7.1 - the last two days Franks blood level has been 3.9 - They increased his dosage today and his blood level went to 9.1 - The Doctor thinks the two days of low drug level could have contributed to the 1B grade - No drug changes were made today.
The next biopsy is scheduled for Wednesday -- after those results are in - depending upon the grade will determine the actions taken.

Frank shouts out a Happy Birthday to Carl John !!!!!!

Numbers day - A Busy 8th Day!

Well its been one week since this miracle started and I can't believe how far I have come in such a short time. This started for me in early January when Dr Berenbom suggested we look into transplant. on Feb 3rd I was seen at Barns for the first time just to say I might be a candidate for transplant. on march 18 I was put on the list for transplant on a level 2 basis behind thousands of people already on the list. On April 23rd My birthday I was elevated from a level 2 to level 1B. What a birthday gift. and on May 19 I was called to receive this wonderful miracle. today I will go for my first biopsy and it happens to be my fathers birthday today. My pitter patter number[number of people that have had heart transplants at Barns] is 567 the same number used for my mothers security code, I can't believe all this has taken place in just 5 short months. it had to be FATE

Cheers

Frank Mascaro


Susan writes:

2:15 biopsy test, he should be back in a couple hours. They are going to release him tomorrow morning, CAN YOU BELIEVE IT, heart transplant, its amazing, he's amazing. Joan, one of our transplant coordinator, thinks we will get the result back Friday (if sooner you know I will post). The next biopsy is next Weds, so we will be staying till thursday of next week. If that goes well, we will head home and then the next biopsy will be scheduled 12 days later on a Monday.

Today the following people have came to explain what needs to be done after he is discharged; dietitian, pharmacy (learn his meds), diabetes (he will not have to take insulin when he leaves, but will have to check sugar level), Theresa and Joan Heart transplant coordinator, and Jennifer are social worker who have been angels to us.

The other visit we had was from Ken, a wealth of knowledge. Ken is a mentor for the Heart Transplant Association, his pitter patter # 279, he was on the waiting list for 13 months and yesterday was his 13 birthday for his heart. When Ken walked in to the room he introduced himself, Frank stood up, put out his hand to shake his hand and Ken did not exchange the shake. First most important lesson he said, the first year is to stay away from GERMS, no shaking hands, kissing, hugging. This will be very hard for Frank when he see you all again. But when Ken left he stood and told Frank now in a year you can do this, he reached over and gave me a big long hug, told Frank his day would come soon and he can hug on all the girls. Girls I will be keeping a eye on you. You know I will have to watch that young STRONG heart :)

Hail to Stephanie !

My sincerest thanks go out to you Stephanie, without whom, this page would not exist.
I am eternally grateful. HAIl! FOR BEING A GOOD FRIEND!

Love you, Susan

Day 7 - May 26th

Only excitement of the night was: Frank woke up, looked at the clock, was so excited he had slept till 6:10am. After reading "the blog" he looked down and noticed it was only 1:30AM, NOT SO HAPPY then. (Had those little arms turned around)

Frank thinks today is going to be real busy with doctors, social worker visits and test. He is not allow to eat or drink right now, not sure when they will be taking him for the echo test.

I will come back to this post and keep you updated with the progress. Susan

5:30 PM Hi all just wanted to let everyone know that I went for an Ecco Ultasound of my new heart today. The results are in and the nursing staff has told me that they look Great. My ejection fraction is 55-70% witch are the numbers for a normal healthy heart. All the valves are working great and the timeing between the right and left sides are fine. Tomorrow I will have my first heart biopsy, this is a major hurdel it test for any sign of regection.Please keep me in your prayers. I will have these biopsys each week for the first month and then bimonthly for the next six. Thanks for all your support I can't express how much it means to Susan and I.

Cheers Frank

Day 6 - Memorial Day

The day you honor the US men and women who died for us in the arms of duty...

Memorial Day is also the time for picnics, barbecues, and family gatherings. I know you all will be thinking of us as well, I wish you all a wonderful day

I received a text this morning it said ...

"the picture of Frank walking at the hospital
makes memorial weekend a great memory to cherish"

What's going on with Frank? Last night he kept talking about a gurgling sounds that he could feel not in his stomach, not indigestion, something else which concerned us. I could even hear it when I put my head below his heart. At first the nurse thought it was his bowels being active. But later she came into change his dressing and felt that the doctor needed to be called. They took a x-ray thinking that maybe is was that one lead left behind from his pacemaker/defib, and maybe it was in some of the fluid that he has on his body. Results came back and everything checked out okay, that's not it. Their decision was to wait till this morning. Frank slept thru the night and the gurgling sound has subsided a little. They are going to continue to watch and wait, if it continues they will do a ultrasound.

Lets all not get alarmed, strong boy has already taken one of his 5 min walks this morning, wants another shower, ready for breakfast and has 2-3 walk left for the day depending on how he feels. Does that sound like the Frank you know...

10:30 AM - Seen Dr Moazami and he worried all night about what the gurgling was about. All he could think it was, was fluid around his heart, reassured Frank that he was doing fine and increased his lasix to get the fluid off.
10:15 PM - HAD A REALLY GOOD DAY, BEST ONE BY FAR! Hope things continue to go in this direction, thanks for all heartfelt comments. Love, Frank
They will do a echo test tomorrow. Susan ;)

Day 5 !

Frank writes:

Today has been by far my most active day. I still get very fatigue while being up and around. Feel great while lounging in my recliner with my big swollen body. No need for alarm, this doesn't seem to concern the doctors, I have cankles!

The physical therapist had me walk up a flight of stairs today and everything went okay. She also gave me my exercise regiment for the next 3 months. Sad thing is I will not be swimming in my pool this summer at all, just observing. But after 3 months I can golf, skydive, hunt, bowl, play soccer, etc...

That shower sure felt good today.

Cheers until tomorrow!

Day 4 of Recovery

Frank writes; Susan types;

Good Evening

I think I need to rethink my expectations. I have found that while sitting my energy level seems to be fine for talking on the phone or using my computer. But any physical output is really felt. it seems that just standing will zap my strength and I'm left feeling completely useless (sleeping). I realize there is new sheriff in town Mr. Heart and the old gang; Kidney, Liver and Mrs Lungs need time to get acquainted(sleeping).

Frank is still in disbelief about his Heart Transplant, he keeps forgetting that his new heart does not need a back up! (sleeping)

Today, Frank had some friends from KC stop by while they were in town. He also had his final wires pulled today and he is tube free (totally unattached), and can shower today! Yeah!!

Sleeping, Sleeping, Sleeping until tomorrow!

Early Bird, I'm on my way to your room 7236...

You are so blessed, I would love to join you in signing a donor card to give a mother, father, brother, son, daughter, grandchild ... and second chance in life. It amazing that it takes someone so close to you to understand the meaning of being a donor.

I would like to share A poem I found with all of you,
but especially the MIRACLE BOY, FRANK!

I received a gift on ’’May 20th, 2009,
It came from someone I don't know.

It came with no card, ribbon or bows
But sent to me that’’s all I know.

It didn’’t arrive in a box or sack
And is a gift one would never send back.

The gift in size is rather small
Compared to its power to conquer all.

You’’ll never hold this gift in your hand
It’’s given to people throughout the land...

This beautiful gift has set me free
What a precious gift and given to me.

This gift was given out of selfless love
And delivered to me with help from above.

These gifts are so priceless, valuable and few
When you know of this gift, you will agree too.

With this gift I can hold my head high
To dream the impossible and reach for the sky.

This gift has taught me to scream and shout
Now let me tell you what this gift is about.

This gift will not be taken in strife
The gift I speak of is that of life.

The gift of life handed me a key
It opened doors and set me free.

Organs aren’’t needed at your final destination
Leave them on Earth without hesitation.

Every human will someday be called to come home
Your organs may stay and continue to roam.

No need for organs in the heavens above
Leave them on Earth for others to live & love.

Now that all has been said and done
Please donate your organs and give life to one.

Let’’s spread the news let’’s scream and shout
Organ donation is what it’’s all about.

Most grateful, Your Wife :)



May 23, 2009 8:36 AM

My boys

Written by Frank;

Carl and Rudy as I lay here on the forth day of this new journey in life by the simple act of someone signing a organ donner card I ask you to join me in signing our donner organ cards together. Besides you boys and your mother it's the greatest gift I have ever received. I want you to know how proud I'm of both of you, live your life to the fullest every day it may be our last. I encourage everyone reading this post to join me in signing your organ donner card to save a life.

Frank Mascaro

Walk in the Park!

Look at that grill!

Published by: Rudy Mascaro

DAY 3 at Barnes Jewish Hospital

Franks new slogan: Foam in, Foam out, Safe for life !

Its 11:35 am and Frank has still been up since 3:30am this morning reading all the wonderful comments on this blog site. This morning was the first time since the surgery he has been able to sit up in a chair and EAT breakfast, (ate half, and doesn’t really have a big appetite at this point).

A girl name Shelby (physical therapist) showed up and we went walking with all my tubes in tow. I say we walked about 400 feet it probably took me 15 minutes and it took more out of me then I thought. That walk was around 10:30 and I'm still spent at 12:45pm.

Dr Nadar M. just left, he said Frank looked drained, he will have the chest tubes removed which will take pressure off my chest and should make his walking easier as well as feel better. They are also removing the (sleeping) urine catheter, you'll probably be able to hear the scream in KC. His first heart biopsy will be next Tuesday or Wednesday, he will have them once a week for month and then monthly. This process tells them how much immunosuppressants medications that is needed.

Jennifer - social worker stopped by with a HUGE goodie bag, one item is a pill box the size TEXAS, other things such as t-shirts, heart pillow (which by the way his pitter patter # is 567, (sleeping) which is the # of heart transplants that have been performed at Barnes Jewish Hospital). Frank said it is his new "pick 3 lottery #'s and to feel free to use them when ever you want to"!

She also stated No buffet food, eat fruits that you can peel and he needs wear a mask for 3 months when out in public (inside joke to Marisa & Nathan thank goodness he went to that seminar on how to wear your mask correctly).

Frank said - Cheers as he put his beauty sleep mask on over his eyes, maybe he will now get some sleep.

To Our Daughter Molly and Best Friend Morgan

Mommy and Daddy writes...

Hope you are having fun hanging out with your bfff! We miss you, don't get to happy with your new digs because you are coming home to us.

Tell your step-mom MINDY, that we thank her from the bottom of Frank's new heart and the top of Susan old one.

Out of ICU

Frank writes... Rudy types...

Hi all, ha ha hold on he just fell asleep out of no where...

Alright, here's a brief history of my medical condition... I was diagnosed with cardiomyopathy with ventricular tachycardia (VT) in December of 02'. In between that time I've had 3 different defibrillators, 3 different cardiac ablations, and many many shocks. I really started to loose control of the disease in December 08. This led me to Barnes-Jewish hospital which I was admitted onto the heart transplant list.

In mid April I was sustaining quite a few VT events which led the doctors at Barnes to move me up the heart transplant list. This is a move which I never thought would happen... going to a 2 on the list to a 1B in 2 months! In reality I never thought I would have this heart transplant procedure happen to me, but by the miracle of god I write this letter to all you wonderful people today. Many of you probably didn't realize how ill I was, by just looking at me you could never tell by my appearance. Most recipients have multiple problems, which in my case all I had was a bum heart (sleeping..). Now I have a new healthy strong heart thanks to a generous donor family and all of your prayers. Please keep these people in your prayers.

Today I was moved from the ICU to a private room and on my way to a healthy recovery. I still have tubes in my neck but the fatigue shortness of breath are gone from before the surgery. Also the piano hanging over my head that would shock me is no longer in my body due to the defibrillator being taken out . As I lay here tonight I still can't believe this miracle happened to me. I'm sure I will have trials and tribulations in the weeks to come. I will most likely be in Barnes for a week to 10 days and then will be staying in St. Louis for the next 3-5 weeks for biopsy's. My post care will be handled at Barnes for the next year. I will still have a fantastic relationship with Mid America Cardiology Group of KU. I cannot stress enough the important care this group has showed me throughout the last many years and will always be truly grateful to them for there hard work and loyalty.

I would like each and everyone of you to know that all of the comments lifted my spirits, I was not apart of this blog until tonight (sleeping...). So I would like to thank Stephanie Connor, Susan, Johniann, Carl and Rudy for such a wonderful gift to me and you!

Miday Thursday Update on Frank

Hi everyone, this is Johniann (Frank's sister) giving an update on Frank. We all made it over to the hospital at about 10:30 this morning. When we went to his room he was sleeping so we started to go back to the waiting room to let him get his rest but he was not sleeping deeply and opened one eye and saw us so we have been visiting. Frank is very diligent in making sure EVERYONE uses the hand sanitizer when they enter his room. We all comply of course. He is doing great and he cannot believe how good he feels. He keeps warning himself he knows he may have setbacks during this process but he surely feels he has been granted a miracle. There is a story about his miracle that Frank firmly believes. Last Sunday we all attended Mass at Holy Rosary Church for the special Mass which honors the Virgin Mary. It is called Our Lady of The Audience. We even got our mother all spruced up for an outing and lunch out away from the Nursing Home. (She did well that day by the way) This mass/traditon for Our Lady of the Audience was brought over from Sambuca Italy by the Molle Family. Shavadia (not sure of the spelling Molle was one of our grandmother's best friends. Frank had never attended this Mass but I have and of course our Mother had over the years. THe Priest told of the tradition and how the Molle Family has kept this tradition going for years and years. They have a statue of Mary and they take it outside and they shower the statue with Rose Petals. You are then to get a rose petal and wipe the eyes of the statue with the rose petal and a cotton ball and you will be blessed with good health for the year. My husband Jim made sure Frank got lots of Rose petals. They also pass out pins with a photo of the statue of Mary. Frank said he saved his pin and his rose petal and he hung it in his walk in closet so he could see it every day. Two days later he got the call for his heart. This is his miracle. He has told this story to the social worker and she told Frank she also believes he was granted a miracle. As always Frank keeps thoughts of his donor in mind and speaks about him/her alot. He hopes that someday he can meet the mother of this person and tell her how much this means to him. Of course we all think that the donor family will be so happy that this heart came to someone as wonderful as Frank because we all know what a special personality Frank has. I want everyone to know that very very soon Frank will have a lap top in his hands and he will be making these updates. HE LOVES the comments, he has Susan read these to him and is so happy to hear all the people who have left comments. We ask that everyone leave him a comment. Even if you do not know Frank personally but know of him thru someone else, he still wants to hear from you and know you are following his progress. Today his inlaws Rudy and Rosetta, his Aunt Bevie and me (his sister) return home to KC and we are so happy to know he will be out of ICU soon and we will be reading his updates ourselves.
Thanks to everyone for your thoughts and prayers as they have uplifted Frank in a tremendous way. Johniann

You would think Frank had his wisdom tooth pulled!

Susan writes:

Good morning everyone!

Report is Frank did great thru the night without any problems, the only down side is Gina (nurse of the day) said he did not sleep. That is probably from some of the medication he is on and that she is starting to remove some of the drips and lines to him. He sounds great and can't wait to get my computer and get on the Internet, which will probably be later today.

My Aunt Beverly, Johniann (Frank sister), my Mom and Dad are leaving today. Frank just called and the first thing he said is that he has not slept a wink and is very jittery. Oh and this is a good one... he requested a pain pill, and told me that he has decided that they are very helpful ( can you imagine that, since he only had his tooth pulled the other day) that Frank for you!

I think I was on hold for about 30 second listen to him question everything Gina the nurse was doing, he told her in the end ... that she could do it her way, let it ripe. I just read him this last sentence (typing as I was talking to him) and his reply was... well the other nurse was doing it another way and I wanted to know why, "nothing is going to slide by Frank"! He's amazing!

I will let you know if they move him today out of ICU to the step down unit later on.

Before I sign off, I just received a call ... and the person on the other line asked me... "but, how are you doing, Susan" my reply... "Great, Frank is making this so easy for me"!

Bye x0x0, I'm on my way over to see him...

Back from dinner and...

Rudy write...

Dad called looking for us and of course wondered how dinner was at Guidos. If you know my dad he's all about the food, well of course we ate every bite of our meals, except for my left over pizza, which he requested that I not bring in the left over because he didn't want to smell it or get hungry for it. I don't know what he had for dinner? probably ice cubes!

Keep him in your prayers, he's looking good!

All about Frank from 1:00PM until 5:30

Johniann writes...
Franks is awake and the breathing tube is out and he is asking lots and lots of questions. He is joking and also thinking alot about his donor. He is already talking about some creative tatoo to go with his new scar. He wants to honor his donor and Barnes Jewish Medical Center in some way. They gave him some water to take a pill and when he drank that water, you would have thought it was the best thing he had ever tasted. He was talking about how he thought his donor may have been a good golfter because is handicapp will drop from an 8 to a 2. He was also wondering if the steroids will hulk him up because he is already wanting to wrestle around with Rudy. All of the medication is causing him to be shaky and he told Susan he was doing an impression of Katherine Hepburn. As you can see he is joking around. Then the heart transplant doctor came in and Frank was really grilling him! Frank wanted to know what his old heart looked like and what they were going to do with it. The doctor said they had a special world renowned doctor at Wash U that is doing research on electrical problems in the heart and they would study his heart. Frank told one of the doctors he wanted his cell phone number in case he needed to get ahold of him! :) Frank is also thinking of food even though he is not really hungry but he is telling us where we need to go for dinner tonight and what we need to order. Franks nurse told him that all of the heart transplant team thought that Frank really looked young, they were amazed athat he was 49. Another really good thing they told him was that it was rare for a heart transplant patient to be as "well" as Frank was. Alot of times by the time a person gets a heart they are very very very sick just days away from death and the fact that Frank was in good shape was a plus. Frank is really looking forward to be doing these posts on his own and he wants to read all the comments from everyone. If you just read this blog that is great but please leave a comment for him because this is what he is looking forward to. The doctor's told him that he will be in the ICU all night but possibly be moved out tomorrow. He has a tube in his chest, one in his neck and some others and they will be coming out tomorrow. He questions all the nurses when they come in about the numbers on the screen and I am happy to report that I see a steady 68 perfect heartbeat. Keep Frank in your thoughts and prayers that the next few days go smoothly. Johniann

We're back to updates on Frank!

Susan writes...

Sorry for the delay mama and family needed a little sleep, so after the doc came to see us at 3:20am, then Dave (nurse) came to get us later to see Frank in his room (9), Dave thought maybe he might hear us or reponsed thru movement, but Frankie was deep into sleep, his color looked good, Dave told us he might look a little swollen, but me I saw nothing but my Frankie, we all love!

We all left and head back to are glorious waiting room the rest of the night. It was pretty comical, of course there is the regulars the one that have "Marked" their grounds "Stay away from my sofa and or space". All of you that know me you know I don't know "no" space, I go anywhere, but I was good. Rudy found his spot on the floor next to the wall, I moved in and used his arm as my pillow, my dad "78" stayed up all night telling jokes to anyone that would listen and kept us all and I mean "all" covered up. He is something! Aunt Bevie stayed up all night giggling, while my sister-in-law found her spot next to the computer she looked like some homeless with mattress pads laid here and there on her, and my mom she had one I open making sure we were not messed with, joking! All I have to say is "togetherness" blissful!

I never did really sleep, had to keep check on my honey, he was doing great! About 7:00 we headed on to breakfast.

Called Hospital about 9:30 no change in Frank still sedated and breathing tube still in place, Franks new nurse Matthew stated is was still doing quite well.

From there, thats were you all lost us again, it was time to get a little shut eye, we all needed it, in a REAL BED!

So now back to the man of the hour FRANK.... turning the next blog to Rudy...

I just want to tell you all how deeply touched, and luckly myself and my family is to have all you apart of our lifes, it means ALOT to me. Thank you!

You know I don't know what I would do with out Frank and I know all of you feel the same way. There is something about that boy that touches all of our hearts, thru his personality, personal CLOSE communication that he devotes just to the person he is talking with to the man that can fix anything, if his donor only new what a outstanding person FRANK MASCARO is, but I have a feeling the donor will know because Frank is already talking highly of him or her and will take them for a ride of there life for along time! I love you all! Susan

Message from Carl John

Carl writes:
(Franks son)

Today is one of the few days I wished I was back home (or at least a lot closer). This morning at 6:05 am (4:05 pm May 19 in Missouri) I was woken by the vibration of my cell phone, it was my dad, he told me he had been contacted by his doctors in St. Louis about a transplant and that he was on his way as we spoke. Shocked a wake by what at the timed seemed to be horrible news I began to think of what this meant for him and how good or lucky this situation could be (thinking this way does little to ease my fears, but I believe it’s better to look at things in a positive light). I feel extremely guilty for not being there right now. My family, my mom especially, must be going through so much. Being on the other side of the world there is little I can do to help and comfort my family. Sure I’ve spoken with them over the phone but that is no comparison to being there in person. I just finished reading the latest blog (thank you Aunt Johniann for writing) that friends and family have created to keep updates on my father’s health. Knowing my family is surrounded by so many caring people is really reassuring. To everyone who has helped with this, thank you! Being so far away is making this really difficult for me but this blog is tremendously helpful. It’s still early on, but I have already learned so much more factual information about my father’s transplant here, than I could have hoped to obtain in an emotional phone call with my mom or brother. For all of those who have said a prayer in my father’s name thank you!!Carl
May 20, 2009 1:24 AM

Update from Doctor Nader Moazami

Written by Susan and Johniann...
The doctor has come out and the transplant is complete. He said all went well and as expected. Frank received 1 or 2 units of blood but the doctor said this was normal. The doctor said the heart Frank received was young and strong (God Bless this person). The doctor said he could possibly have bleeding but if so, they will take care of it. They will keep Frank completely sedated all night, and will let us go in later, we have not seen him yet.

2:45 pm update

Frank's nurse David has just come to see us for an update. He advised that he will be with Frank until 7:30am in the ICU unit. The update is that they are closing Frank up and all has gone well and as planned. The doctor will be up in about 30 min. to tell us more and then we will have to wait about 30 more minutes for them to get Frank settled into the ICU room and then we can all go back and see him. They told us he would have a breathing tube and this is normal and its possible it may be removed on Wed afternoon. We will update when we know more.

Rudy writes...

At 12:35 Frank's old heart has been taken out, and the new heart - new beginning is being put in place! The procedure is ahead of schedule they estimate 2 more hours. We should be hearing from them soon and will let all of you know the update.

Until next time, keep praying!

Update From Susan

Johniann is typing this message for Susan. Susan says many thanks to Stephanie for creating this Blog. They think its an awesome way to keep family and friends have step by step updates.
Right now Susan has decided she DOES NOT LIKE the ICU waiting room. It is a campground with bright lights. The family support system has now arrived at Barnes. Me-Frank's sister, Aunt Bevie, (Franks Aunt) Rosetta and Rudy Pernice (Susan's Parents). Rudy Franks son is here too. Frank and Susan had a chance to make contact with Carl John in South Korea letting him know he got the phone call about the possible heart donor and also that it was a 100% go.
The first call came at 2:30pm today saying they may have a heart and dont eat and get the car filled up and your bag packed. Then, the second call came around 3:30 saying head to St. Louis. They were testing the heart to see if it passed inspection of sorts. They also advised that as they were driving to St Louis that they could also get a call telling them to go back home because it would not be a go. Well they arrived at Barnes so as you see it was 100% go forward with the transplant. At about 11:40 we got a call in the ICU waiting room that the heart has now arrived here at the hospital and the surgery would be beginning soon. The estimated time is 6 hours to complete the transplant. After surgery he will be in ICU and he will not be awaken for about 1-2 days. They will keep him knocked out while they monitor everything.
When we know more we will update you. Please keep the good thoughts and prayers coming and please post. Frank asked for prayers for the heart donors family as their sorrow brings us hope. Please pass this blog site on to everyone who knows Frank. Love Susan.

I just spoke with Susan, the donor heart will arrive at 11:30pm and Frank should be out of surgery by 4:30am. She said he was in good spirits and she promised to update me in the morning. Also, her mom and dad had just arrived at the hospital. Keep the faith!

This is a big day for Frank and Susan; a birthday of sorts. Frank and Susan, driven by Rudy, went to Barnes Jewish Hospital in St. Louis this afternoon to prepare for Frank's heart transplant. Frank was prepped for surgery at 8pm; the procedure is expected to last 6 hours. At this point it is unknown how long he will be in the hospital. I will post again when more information is available.