I am just over 3 years out on a single lung tx. The first 6 months your emotions are not to be trusted too much, the meds you are on are really causing havoc with your emotions. I hope you have a live in caregiver.…"
It is my hope this note finds you in a good state of mind and even better finds you in recovery with new lung(s). Let any anxiety go. When I was finally listed I was so relieved knowing that I was going to have a…"
"Way to go Darlene:
Hang in there, it just keeps getting better and better. You will have ups and downs, just follow the doctors orders and don't get too careless the first year. By that I mean wear your mask, use your hand…"
How are you doing? Any closer to getting the call? Hang in there, it comes when you least expect it. For me it came less than 4 days after being listed. My allocation number was very high.
Stay as active as you…"
My name is Ken and I am a single lung tx. (right) My 3 year aniv. is April 12th.
I wanted to ask you how difficult was it to convince your hospital to do a re-transplant? My hospital is Loyola in Chicago and they make a re-transplant…"
"Thank you for such a nice comment. I have not asked about retransplant but they told me that if I ever needed another one I could go back on the list. I am being evaluated for a kidney now and I too have little use of my left (native) lung. It…"
My name is Ken and I am a single tx with a new right lung. My anniversary is April 12 and it will be 3 years. Drop me a line if you want to chat about the experience. Hope all is well with you.
Please Select Your Transplant - Or Tell Us How Else You Were Touched by Transplantation:
Recipients: In This Space, Feel Free To Write About Those You Are Grateful to for Receiving The Gift Of Life:
I thank God first, I am grateful to my Wife and Daughter second, and all the staff at Loyola in Chicago. And not least of all is my donor who lost her life but was generous enough to be an organ donor. I have thanked her Mother and the family that she left behind. I still remain in touch with them
Recipient: What Type of Donor Did You Receive your Gift of Life From?
Which Transplant Medication(s) Do You Take?
Prednisone, prograf, and imuran along with antibiotics and 12 other medications.
What Do You Do For a Living? What Are Your Passions, Hobbies, Passtimes, Dreams and Goals for the Future?
I was an engineer for a global engineering and construction company. The best company I have worked for in my 33 years.
About Me: Please use this space to tell the community about you and your unique experience with transplantation:
I worked at a chemical plant for 10 years and was diagnosed with pulmonary fibrosis as a result of exposure to pigeon droppings. That was June of 2003, I continued without O2 until February of 2008, my third bout of pneumonia sent me to the hospital and 2 months later i was near death on 15LPM and that could not keep my O2 from droping into the 60% range. I was listed on a Tuesday afternoon about 2:30 and the following Saturday at 5 am I got the call.
Please Help Us Reach Other Members by Telling Us How You Found Transplant Cafe:
What Is Your Relationship Status?
Entertainment: What is Your Favorite Type of Music, Bands, Movies, Art, Books, etc.?
I love all types of music with the exception of rap and heavy metal type stuff.
Favorite movie Citizen Kane
I love to make pastel sketch drawings
JRR Tolken my favorite series of books.
Love my Dachshund Buddy
Very devout Catholic.
I am a Penn State alum, Olivet Nazarene alum and a University of St. Francis alum in 2004.
What is Your Favorite Quote(s)?
Life is short and death is sure the hour of death remains obscure.
A soul you have and only one, if that be lost all hope is gone.
Waste not your time while time shall last for after death it is ever past.
The all-seeing God your Judge will be, and heaven or hell your destiny.
All earthly things will pass away, eternity will forever stay.
Thank you for such a nice comment. I have not asked about retransplant but they told me that if I ever needed another one I could go back on the list. I am being evaluated for a kidney now and I too have little use of my left (native) lung. It holds a lot of infection so when it rears it's ugly head I know it.
Congrat's on your 3 yr anniversary I wish you continued success. Take care and talk to ya soon.
Hi Ken, thanks so much for your comment! I absolutely loved the cruise and am actually going on a family cruise on the new norwegian epic this next wnd :) SO excited!!! I bet your Alaskan cruise was amazing. My sister used to live in eagle river and i would love to go back there in the summertime! I'm so glad you received your liver!! We are truly blessed to be alive. How is everything going for you? Hope you had a wonderful Thanksgiving with your family. We are truly blessed... chat soon my new friend!
Ken, I just wanted to say hi and welcome you to the cafe. This site is amazing and you will find so much support and meet a lot of wonderful people here. I'm so glad you received your gift of life! Life is truly a blessing. Click here to join my kitchen for some delish recipes and tips on how to stay healthy. Also click here to join my awareness group! Take care and enjoy the site :)
I’d like to welcome you to the Transplant Café. You are now a member of a warm, friendly, supportive, caring, understanding, sensitive and informative site. If you have any questions please don’t hesitate to ask and I’ll be glad to help you out. So glad you are here and again welcome to the Transplant Café. Also, if you could please add a photo of yourself or something that represents you or your experience with transplantation, or a pet, etc. to your profile so we can get to know you better. It's really easy! Just click this link for the new members guide where you'll find instructions on how to add a photo.
Here’s a link that might help you get started: www.transplantcafe.com/forum/topic/show?id=2024407:Topic:2985
1972 & 2007 imikimi -
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Welcome to TransplantCafe.com - The Gift of eLife!
Hang in there - I have been caregiver to my husband for 7 years, and he's been through many surgeries and illnesses....and we both have our worries and down days. I will keep you in my thoughts - and hope for the best possible…"
Hi,First post folks. I'll begin with quick background: My 15-year old daughter had a heart transplant 6 months ago after having severe dilated cardiomyopathy with left ventricular noncompaction (now known to be a result of a genetic mutation original to her). Anyway, transplant was at the highly acclaimed Columbia/NewYork-Presbyterian Hospital - to which we moved for waiting for the heart, transplant, and follow-up care. Now, 6 months after transplant, we moved back to our home. Our medical team has a different protocol for checking for organ rejection.Whereas NYP's protocol is cardiac biopsy every month for first year, every 2 months for second year, and every 3 months for third year, our hospital's protocol moves to every 3 months after 6 months, then every 6 months after a year and every year after 3. Bottom line- much fewer cardiac biopsies.I'm wondering if you know the different protocols in checking for solid organ rejection / heart - and how they differ from different medical…See More
Hi, My wife had a double lung transplant, 16 years ago this Sunday. At the age of 27, dying from CF, she was gifted life by the transplant team at MGH in Boston, and two non-related living donors. We've been together for 8 years and I play both roles of husband and caregiver.Although her sweet 16 "Lungaversary" is Sunday, on Monday she goes for a major surgery (not pulmonary related). I sure am nervous. I've witnessed her resilience, self efficacy and recovery from multiple pneumonias, illnesses and painful secondary ailments caused by medications. But this total open abdominal procedure will really immobilize her and expose her to infection (inpatient or out). I'm scared, but can't fully express it because she is scared and seeks emotional comfort and strength from me. Every day I "should" be grateful, not worrying.I apologize for writing so much on my first post. I hope to find some support and insight here.StefanSee More
I recently injured my hand and now have to have surgery on it to repair it. They are going to be putting me out for the surgery. Now grant it, I, on a regular basis go to my transplant center for different procedures(ie;allomap, biopsies, heart caths, etc) and feel completely at ease in doing so, it has been 4.5 years since my heart transplant, Yet I have found myself with a lot of anxiety going into this surgery, one that they are putting me under, two, it is not at my transplant center but at another hospital. It is really weird that i seem to have more anxiety concerning this surgery then I did about my transplant. The faith I have been granted affords me to have confidence in my eternal destiny to be with Christ and that is what/and has guided me through my entire transplant journey. Can anybody shed some light on their experience they have had with other surgeries following transplant. With a grateful heart, JeffSee More
"Hi Phil, Before transplant I had hepatic encephalopathy which my gastroenterologists treated with medication. My reflexes were slow and my judgement was often faulty. Until the fall before my following Spring transplant these episodes were few. They…"
"Hi there! I notice people are not that active on this page. I had acute liver failure, had a transplant in 2011. I take 3mg of Prograf only. I also, on the advice of my Mayo Clinic transplant surgeons take the vitamins Calcium, E and magnesium. I…"
I lived with stage 4 (end stage) liver disease for 15 years. The fall of 2010 was the beginning of a rapid decline. I received a transplant in May of 2011. As you know a transplant gives you a new life but does not cure the hepatitis C, it begins its damage of your new liver immediately. Thanks to the incredible staff of the Mayo Clinic Liver Department and new drugs Solvaldi and Olysio I have been virus free for over 5 months and hope that my 6 month blood test will be still be negative. Interferon and ribovarin would show no virus and then a month or so it would rear it's ugly head. I had no side effects from the two new drugs. These drugs are very very expensive but I was fortunate that Mayo knew where to go for help with these two drugs whose combined costs is $58,000 per month for 3 months. $174,000.
A group for those of us who had a liver transplant due to acute / fulminate liver failure. Here we can discuss our experience with this unexpected form of organ transplant including psychologically, physically and all else that goes with it.