All Posts (1847)

Breathing attack

I'm almost 9 months post op, double lung transplant. Every now and then, especially when I lay down, I have what I call "Breathing attacks". Episodes where I feel like I can't catch my breath and start rapid breathing and gasping for air. I can get it under control by deep slow breaths in through my nose, and breating out through purced lips. It's almost like I just forget to breath, and usually only happens when I try to lay back and relax. I'm just wondering if any of you other lung tx patients have had this.

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zero meds

   Is there anyone out there who does not use any anti rejection meds or any sort of western medicines. I have had a liver tx for 19 years and I have not used any meds for 11 years. When I did use meds it was a fraction of my prescribed amount. I am looking for a site where people can compare notes.  Kevin

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Steve Ferkau and his blog at Revive

Donate Life Float Rose Dedications - Last Chance!!!

Posted: 17 Dec 2012 12:25 PM PST


Four years ago I was given the honor of riding the Donate Life Float in the 2009 Rose Parade. That year, and every year since, I’ve been able to dedicate a rose on the float to Kari. Above is a picture of me placing my roses in 2009. This year, I have the privilege of dedicating two roses to two Iowa girls who loved one another – My donor, Kari, and her friend Alex.

SteveKariGoHMedIn memory of Kari Westberg: Your beautiful lungs have given me 13 years of life. 13 years of AMAZING life. 30 people who you loved were with me this year – including your Mom & Lys. They, and I, will always love you. Love,Steve

AlexSteve2012In honor of Alex Redenius: I breathe with Kari’s beautiful lungs. You were her friend. Meeting you, I knew you were special. I never imagined how special you’d be. Thank you for my new kidney, Mabel. Love you for always, Steve

I have a lot more to say to either of them than would ever fit in a dedication limited to 200 characters (including spaces). I guess one way to limit my ability to go on-and-on is to limit my characters. But, please don’t mention that to Laura – she could find a way to enforce that limit regularly! (And, you may notice that both dedications are exactly 200 characters, including spaces.)

Now through December 23rd, you too can dedicate a rose for the low-low price of $30 – and your dedicated rose will be placed in the Donate Life Dedication Garden on the front of the Donate Life Float that will be in the Rose Parade on January 1st, 2013. You can dedicate roses to someone who has given, or received, or awaits the gift of life. A link that will guide you through the dedication process is here:

Donate Life Dedication Garden
Individual Dedications

Below is a rendition of the 2013 Donate Life Float, “Journeys of the Heart”…

The ups and downs of life teach us many lessons, with those experienced through organ and tissue donation and transplantation being among the most profound. Donor families pass through grief on the way to peace and remembrance; living donors step forward to give love and life to others; and transplant recipients courageously move forward from harrowing illness to health and gratitude. Though our paths vary from the places we start, we are all connected on our Journeys of the Heart.

Inspired by the 2013 Rose Parade® theme "Oh, the Places You'll Go!™," the tenth Donate Life Rose Parade float entry will transport 32 riders representing deceased organ, eye and tissue donors, living donors, and transplant recipients through a magical, heart-filled world encompassing the highs and lows that life has to offer. A pathway of looping hearts is lined with 72 memorial floragraph portraits of deceased donors who are remembered every step of the way. The float's collection of joyful hearts representing the new life made possible by transplantation is grounded by a reverent dedication garden filled with roses bearing personal messages honoring those who make the gift of life possible. The journey peaks with overlapping red and purple hearts representing the love and courage that define humanity at its best.


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stuck between my doctor and my best friend

next year im turning 21years old. and my transplant will be 7 years old and im gonna be doing my second year in varsity.  my doctor just recently gave me permission to have sex, she said i should have a lot of it, im young and i should enjoy life but i should not get pregnant. i asked my best friend if i should and she said no its too risky lol.


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hey everyone i recently founded an organisation called HOSPIE TOYS. we collect toys, teddies and books. then we donate them to kids who will be admitted in hospital during the christmas holidays. we gonna be donating all the toys and books we've collected on the 22nd of december to the Charllote Maxeke Academic hospital in johannesburg, this coming saturday. im really looking forward to it. we planning to do it annualy. so greatfull to my parnters and volunteers and mostly the sponsers. \(**,)/. After my transplant i was stuck in ICU for about 6 monhs and during that period people used to bring me toys and teddies. so this project is like my way of giving back

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Been awhile

I have found myself almost avoiding this site in the last 6 months. It seems I want to ignore my problem and act as if I'm not sick. This site has helped me in so many ways I feel guilty for not getting on here. Is this a common thing? Ignoring that you are sick? I still go to the Dr. on a regular basis and nothing is getting better, but nothing is getting worse. How long will I be stuck in this transplant purgatory? 

Sorry to all the friends who have helped me through this site. I wanted to let you all know I'm alive and still going. 

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A little about me!

Since I am new here I thought I would share my little story about who I am and so on. I was born in Huntsville, Alabama in 1963 and adopted by my wonderful parents Owen and Edna Rarden. My Dad passed away in 1989 and my Mom in 2007, and oh how I miss them. In 1986 I married my sweetheart Amy, we quickly had our first daughter 9 months and 6 days later when Melissa Dawn was born, Katee wasn't to born until August 2, 1997. We have two wonderful grandchildren Luke and Jenna are the loves of our lives, and they have a little brother on the horizon in Feb of 2013.

Due to back problems I have had a couple of back surgeries but that really  explains all of my medical problems until April of 2012, I had this chronic cough for some time but really kinda pushed it off as working in a dusty factory and seasonal allergies, by April I had cough so much my entire chest was sore to the extent I went to our local ER. I had been having some shortness of breath but then again thought it was nothing to important. Once in the ER they checked my heart since I was have chest pains, it was ok. Thinking still it wasn't much, I was anxious to get out of there and go to work, my wife said let them do their testing. They then ran a Cat Scan of my lungs and they said they saw something but wasn't equipped there to deal with it, they suspected Pneumonia but wasn't sure. They then called an ambulance, which I thought was totally unneeded and rushed me to Lexington, KY to Central Baptist Hospital, I was in the hospital there for 4 days and was run through a bunch of tests and was told I probably had some form of pneumonia, but my Pulmonary Dr. Clay Gerhardstein wanted to be sure, so she took me off work for a couple of weeks to be sure I healed ok. After a couple of weeks I went back to see her she listened to my lungs said they sounded much better and the X rays even looked better, so I figured I was about to be released to go back to work, and the doc mentioned the 6 minute walk, I thought no big deal I can do this. As I begin to walk I didn't get 200 ft. before my O2 levels dropped like a rock. Needless to say we were back at square one. I was confused as was my doctor, I was immediately put on supplemental oxygen and steroids, which I am still taking too. Week after week no real changes then finally in June my doc ordered an open lung biopsy, wasn't fun but it finally started giving some answers, I can still remember the aggravation in my doctor's voice as she told me I would probably never work again, as she told me I had a rare form of Pulmonary Fibrosis called DIP, making it even rarer was the fact I had never smoked nor been around anyone who did. She did state that the only real chance of survival was a transplant, but to double check the diagnosis she sent me to The Cleveland Clinic and Dr. Samar Farha. Dr Farha not only verified the diagnosis but along with other doctors in Cleveland recommended to get started quickly on the transplant route. While waiting they decided to try to slow the progression of the disease with Cytoxan, it seems to have slowed the progression some. Since we did not want to relocate to Cleveland we have now gotten permission to allow the University of Kentucky Medical Center in Lexington, KY to do the transplant, I have met with their doc and am scheduled to do all the testing for pre transplant on January 7th and 8th, and yes they do all the testing in those couple of days, the dos there told me that transplant is my only option and to try to keep my body as strong as possible, but should all the testing go well, I should be listed by Feb 2013 and expect to get a transplant not too long afterward. That gives you folks some idea about me, feel free to comment and give me suggestions because I am still a little scared!!

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Good bye

Sadly, I am leaving the group. It turns out It is not what I am looking for. There is very little discussions about tx's. Topics are scattered all over the board. There is no organization. Take care, I wish you all good health.

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Please send a card to Dalton

In Salyersville, Kentucky there is currently a brave little 9-year-old boy named Dalton who has been living with Cystic Fibrosis and has recently become increasingly sick. He recently was allowed to come home, medical supplies in tote to be closer to his loved ones. Dalton’s last wish is to break the world record for receiving the most Christmas cards (which is 35,000). Anyone who would like to participate to send Dalton a Christmas card be sure to include your city and state so he can see how far the support has come from. The earlier the cards the better! THANK YOU all in advance! Dalton will love receiving these cards. 

Sends cards to: Dalton Dingus HC 62 Box 1249 Salyersville, KY 41465 

I don’t know how many people will see this but if you do PLEASE reblog/share to be a part of this little boy’s wish!

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Does anyone get alot of bruises?  I tend to get them but they disappear within a week.  I was told as long as they come and go it was ok.  My concern is I've had one on my lower right leg and it was dark.  I've had it about a week but today I noticed it was bigger and red.  I have an appointment next week.

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happy Sunday

Today is a lazy day my intentions are like every Sunday, to make it to church but since my transplants I've been on a inhailer machine called Tyvaso....its the liquid fourm of Ramodulin....well my schedule for the treatments are 7am 11am 3pm 7pm 11pm and 3am needless to say it wears me out....But later today I am going to a heart transplant Christmas party that my doctors office invited me should be fun they also asked for pictures of me pre and post transplant cant wait to see what this presentation looks like seeing how many other people captured their experience :).

One another note: my doctor called Friday and went over my results from my echo and they are concerned about my heart looking like a possible sign of rejection so they want me to come in tomorrow and have a biopsy done....I so hate those things I always get nervous and they have to give me the "calming" medicine....last time I had this done they sent me straight to the hospital and I had to stay a week.....fingers crossed and my faith in action, they will not admit me into the hospital.

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Triple bypass surgery

Just talked to my dad, he had an appt to unblock a clogged artery...well unfortunately he has quite a few that are blocked and now needs to have triple bypass surgery in the following week. I know he is scared cause I can hear it in his voice, but of course he isn't going to tell me that he's scared....I know he'll be fine because God doesn't give us more than we can handle....So I'm not going to stress over it...I'll just think about what God has brought me through and have faith that he will do the same for my dad :)

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How grateful am I for the heart I recieved in Aug, strange enough on Wed , Aug 15,2012 just 5 days before I got the call, I was at the Cleveland Clinic for a routine check up on the LVAD equ. that I had been carrying for 2 1/2 years. I asked the LVAD team, when is it going to be my turn, am I going to die with this bag around my neck, the only answer given was Greg, sick people get hearts, and your not sick. This was true, I was perfectly healthy, I just had to carry a battery bag around my neck, I was mowing my own yard, playing a little golf, then on sunday 5 days later I got the call.  I was told it was a high risk because little was known about the medical history of the donor, maybe someone else said they did not want that heart and the heart was passed to me since I was given the option to take or leave this heart. I figured I was a couple months from being 59 years old and surely God had not brought me this far in 2 1/2 years to send me a bad heart. I had a calm spirit about this call and I accepted the heart, It was later found there were no problems with the heart or the donor. What do I do now I asked the transplant team, they said take about a 1/2 hour, pack your bags and drive to Cleveland,{ its a 3 hour drive } and then call when I got there, that they would be waiting for me. Sure enough they were waiting for me, , after waiting a couple hours someone walked into the room and said its a go and away we went.  After the transplant I dont remember my first day in ICU, the second day the world opened up to me, my pastor had driven to see me and I chatted with him, not realizing I had no tubes in my throat till later I had a male nurse and across from me was a young lady maybe 30 who had just recieved a LVAD and I was just fixated on her. She had a female nurse working with her, my nurse asked me if I had met her because she was  on my percurment team, {she was one of the people who went to bring back the heart} I asked is that right you went to pick up my heart, yes she replied, so I asked How old was my donor because I am almost 60 years old, was my donor 50--55--60, she replied you donor was between 30-35 years old. I then asked where did the heart come from, Ohio, Michigan, WV. She then said ask me no more Questions I have said to much already. So on the 3rd day they moved me to a regular room, had me walking the halls on the 4th day and out of the hospital in 10 days. I had to stay in the guest house for 3 weeks and after the first  week my wife and I were walking malls all over Cleveland trying to kill bordum. My children live in Savannah, Ga and on we drove there Oct 29th for a visit, I player 18 holes of golf, and later my wife and children went to the pier at Tybee Island and we renewed our wedding vows since our annaversary was Oct 16th. With my son in law reading 1 Cornth chapter13, the love chapter and my 20 month grandson witnessing, my son and daughter taking photos we renewed our vows and my wife married my new heart. after returning home we went to my mother in laws house for Thanksgiving, a tradition for years. On the way home my wife said someone is not having a good Thanksgiving this year! I said what do you mean, her reply was there is an empty chair at someones table this year, that person could have been a brother a sister a wife or husband maybe a parent, one thig we do know that person was someones child. A person who gave you there heart so you could live and our family could be thankful, brought sadness to their own family, we pray dailey for the family of our donor that God will ease there pain and give them strenght. We pray that they know Christ as their personal savior. We sent them a sympathey card a couple weeks after I recieved the heart just to acknowledge that they lost a love one, and I hope some day we get get to know the donor family.

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Need support & prayers

Hi all, hubby is need of a kidney transplant. He is currently on dialysis. We have a 2 month old baby and are dealing with a lot. I am so overwhelmed that cry in the bathroom most of the time. I try to put a brave face in front of my husband. But deep inside i am so scared. His sister is getting tested as his donor, but she has a small 3 mm stone in one of her kidneys. Not sure if she will be selected as his donor. I want all the prayers. please pray for us and i need all the support.


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I sit here, with tears in my eyes, thankful for the many blessings I have received this year. Thanksgiving this year will have a special meaning in my heart as I think of a little girl who lost her life and I was given a new life. I was given more time with my family and friends. This Thanksgiving I think of that little girl, how a part of her lives on in me. I think of her family, and I'm filled with sadness for their loss, but at the same time I am thankful for the friendship they have offered me. I know that little girl,who's name is Heaven Leigh, is watching over her family, and me. She will forever be a part of me. Thank you Lord, for all You have given me, my family, and for watching over Heaven's family.

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Happy Thanksgving to All !

As I think about thanksgivng I Can not forget that donor who gave me the chance to have 15 more thanksgivings with My family.

Please remember the donors who gave us the seond chance at Life.

Mike heart txp april 1998

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Happy Thanksgiving everyone!!!

Today, is my 15th month transplant anniversary! I am doing very well and feeling like I did years ago! I want to wish everyone on Transplant Friends a Happy Thanksgiving! I am Thankful to God, my Donor Family, Surgeons and Nurses, my dear wife, Leah, who stood beside me throughout our journey. Thank you all! I hope everyone will have a wonderful Holiday Season as well.  Life is so very precious. God Bless!

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Each month, it costs $60.00 to operate We greatly appreciate your support.



Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need of a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at Thank You So Much!

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