Share this:

Transplant stories that inspire: What's yours?

Posted by @keggebraaten, Oct 23, 2017

Good morning everyone! As everyone in this group has seen, stories from people who have been through transplant can be inspiring to those who are about to go through the process, and even to those who have been through it already.  I thought maybe we should have a thread for entirely that topic – patient stories! You all can tell your stories here, and people like me who work for Mayo can post stories we think you might find interesting. Inspirational and caring stories and comments are what makes this group so special…Keep up the great work everyone!

Our first story to lead off this discussion is about Larry Rawdon. You may have heard about Larry before, as his story has been in the media many times. Larry had a double lung transplant and used the harmonica to strengthen his diaphragm and aid in his recovery. This technique worked so well for Larry, he now teaches harmonica lessons to other lung recipients to help them gain strength and recover more quickly. Read more about Larry’s story:

HARMONICAS HELP TRANSPLANT PATIENTS LEARN TO BREATHE AGAIN

Every transplant recipient and donor has a story. What’s yours?

REPLY

I agree that this story about Larry Rawdon is an inspiration. As a child I had a harmonica, and I thought it was just a fun toy. I never could never have imagined that it could provide so many benefits to so many people. Thank you for presenting this to us.
I find it amazing how many transplant recipients help and support others after their own transplant. I love reading about them and I respect and salute every effort, both large and small.

As for myself, after my transplant, I have chosen to become a mentor and offer some support to others as they travel through the roller-coaster like journey to transplant. In my everyday home life, I have picked up my violin again after years of neglect. I have worked out many of the squeaks and I continue to regain some technique and confidence. For around 5 years, on Sunday mornings, I play during the 8 AM mass at my church. I do miss on the days when I am away from home to go hiking. Members tell me that they like to see and hear me because they remember praying for me. For me – I do it because I enjoy it. A real bonus is that some people have told me that because of what I do with my post transplant life, that they have chosen to become registered organ donors!

I regularly see our members sharing events from their own inspiring stories throughout our transplant discussions. I invite anyone, recipient or donor, to add their story along with my story and Larry’s.
Rosemary

How wonderful that you chose to pick up the violin again after your transplant. Music is such marvelous to express gratitude that is beyond words sometimes. Having said that I also want to acknowledge the gift you have with words, especially as a volunteer mentor here on Connect. I see many members following your example, and appreciate the supportive community here in the Transplant group and on Connect as a whole.

@chattykathy @contentandwell @2011panc @davidgenebarnes @eileenheart @amynewheart @bsox1901 @doogie02 @coastalgirl @dglass4040 @fauneconner @hlweber1 @sandyblair @scottb32 What part of your transplant story would you like future transplant recipients, donors and supporters to know?

@colleenyoung My response to what I would like future recipients, donors and supports to know about my transplant story: I have a strong faith base and know myself well. I was not afraid and was very ready to the transplant. My organ became available much sooner than anticipated, in about 6 months. Keep yourself open to whatever comes, because your future cannot be predicted. You acceptance of whatever may come will help you immeasurably. We live 10 hours away, so getting there in time during the winter was tense. Fortunately for me, the organ I received was almost a perfect match and has worked perfectly from the beginning. I had a pancreas transplant, and from what I have heard that is one of the most difficult organ transplants to recover from. It was more difficult for me because during the first year we discovered many other underlying diagnoses that were hidden by my diabetes. I had to come to terms with the fact that in order for me to receive a pancreas, someone had to die. There can be guilt associated with that knowledge and my faith helped me understand that I was not responsible for that death and that the donor intended that their death should help as many people as possible to live a better life. I have met my donor’s family and know that was the case for my donor. It was not the preference of all of her family, but they carried out her desire, to my benefit. I am now 7 years out and doing well.
Donors, you also need to know yourself and be prepared for the loss, fear and grief you may feel. Lastly, supporters; be honest. Don’t offer platitudes and empty promises. If you say you will help, make sure you are there to help. It may not seem like much to you, but it means a great deal to the recipient and their direct caretakers to have some respite from the massive shift of duties and care that takes place after a transplant. Reheatable food is a blessing and allows more independence sooner for the recipient, A 10 minute drop-in to say hello is worth much more than you probably know. The isolation of recovery can easily become overwhelming. If you are not nearby, cards and calls are also helpful, just don’t expect much of a response. For example, one relative called me during the first year of my recovery. I remember her call and her initial words, “long time no see”. Other than that I do not remember her call. Several years later she told me that she felt blown off. Please remember that recipients are not their same robust selves that they were before their transplant surgery.

Kristin, thank you for beginning this thread! We were just discussing this very topic in Transplant Support Group at St. Marys Hospital last week. A few of the themes of inspiration we heard …
– Transplant patients feeling inspired and driven to fight through their illness for their children and grandchildren
– Patients waiting for their transplant being inspired by the peers and friends they meet at Transplant Support Group. There they can meet patients who received their transplants years ago and have gone on to live amazing lives filled with travel, family gatherings, weddings, births, holidays, and the glorious simple things in life.
– For patients waiting in the hospital for their heart or lung transplant, they’ve been inspired by their peers/friends on the unit also waiting for transplant. They motivate each other to keep fighting.
– Caregivers described feeling inspired by their patient loved ones’ resilience.

For me, it’s all of these patients and stories which inspire me!

Danielle, MSW
Transplant Social Worker

Danielle,
I appreciate your telling us by the themes that inspire at the in-person transplant support group. These themes are definitely echoed here on Mayo Clinic Connect. It definitely underlines the value of peer support in person and online — however people can get it. Many sharing here on Connect have also attended or still attend in-person support groups.

@colleenyoung

How wonderful that you chose to pick up the violin again after your transplant. Music is such marvelous to express gratitude that is beyond words sometimes. Having said that I also want to acknowledge the gift you have with words, especially as a volunteer mentor here on Connect. I see many members following your example, and appreciate the supportive community here in the Transplant group and on Connect as a whole.

@chattykathy @contentandwell @2011panc @davidgenebarnes @eileenheart @amynewheart @bsox1901 @doogie02 @coastalgirl @dglass4040 @fauneconner @hlweber1 @sandyblair @scottb32 What part of your transplant story would you like future transplant recipients, donors and supporters to know?

Jump to this post

@colleenyoung it’s taken me some tome to think how to respond to this, and even after much thought I do not see anything remarkable or particularly inspiring about my journey, so I will just try to sum it up as best I can.

My journey apparently started long before I realized it! The first symptoms I had that weren’t vague were episodes of confusion, some minor and fleeting and some more serious that put me in the hospital. Even with that it took almost a year and a half for me to get diagnosed. When I did finally have a diagnosis I was able to see how many other symptoms I had that were basically not given serious consideration – lowering platelet count that had been occurring for about 10 years, trembling hands, diagnosed as “essential tremor” (my hands no longer shake), worsening handwriting, cold all the time, sleep difficulties, diabetes and I think there are a couple more but they elude me right now.

The diagnosis was finally made when an HE episode put me in the hospital. My neurologist suggested liver problems (I was seeing him because my PCP thought these episodes were neurological). They tested my ammonia and it was quite high, which led to a CT scan and the diagnosis. So, with what led up to that I know now that I will never again go without a diagnosis for more than a few months, I will get myself to a major medical center. When I went to Boston the hepatologist there felt that I had probably had cirrhosis for about 10 years!

Second lesson, if people gift you with a special, costly wine, DRINK IT! I had some very nice wines that I put aside for special occasions but then suddenly I could no longer have alcohol ever again, despite my cirrhosis being from fatty liver, not alcohol. Some friends were recipients of some very nice white wines and champagnes. This last part of course is my attempt at some levity.

I started seeing the hepatologist in Boston in June of 2015. On my frequent visits there it was suggested that it would probably be April of 2017 before I would get a transplant. At the next visit the prediction was after the first of the year (2017). Then at the next visit it was November (2016) at the earliest. Starting in Mid -August things went downhill. I was miserable with extreme edema and ascites. My husband and son thought they were going to lose me (of course I didn’t know that until after my transplant). I got the call on September 22 and was transplanted on the 23rd. Hallelujah! From the reaction of my hepatologist and her NP I think they too may have thought I wouldn’t make it. They were beyond excited for me. Since then life has been wonderful. Having that second chance at life changes you more than you can imagine. Only problem now is that I had a knee replacement 3 weeks ago and am still in a lot of pain, much worse than I anticipated. This too will pass though.

I can only say that we need to be grateful for every day, and also we need to take the best possible care of ourselves that we can. I had let myself get very overweight while raising my son and daughter and very out of shape. I don’t think I will ever let that happen again. The weight was the cause of my problems. I knew it could cause heart problems but I never realized how many other problems it can cause. I’m a bit wiser now. It’s never too late to start an exercise program. Sure, you have to start slowly, but it’s a start.
JK

@colleenyoung

How wonderful that you chose to pick up the violin again after your transplant. Music is such marvelous to express gratitude that is beyond words sometimes. Having said that I also want to acknowledge the gift you have with words, especially as a volunteer mentor here on Connect. I see many members following your example, and appreciate the supportive community here in the Transplant group and on Connect as a whole.

@chattykathy @contentandwell @2011panc @davidgenebarnes @eileenheart @amynewheart @bsox1901 @doogie02 @coastalgirl @dglass4040 @fauneconner @hlweber1 @sandyblair @scottb32 What part of your transplant story would you like future transplant recipients, donors and supporters to know?

Jump to this post

Colleen thanks for that information and your story. I didn’t know much about my liver when l first got the diagnoses l was shock since it didn’t run in my family. Some of the things you experienced I did too. I had the tremors but it was said to me it was the antidepressants which l knew l shouldn’t have been on. And tried to let them hear me to know avail either that or go back to the mental hospital. My hands were cold but it always have been a lot of my relatives have cold hands so that didn’t mean anything to me but l was told l was anemic. Then as falling l had been falling since my tub and when it got worst my doctor didn’t listen so l finally tore my acl.praise God l had a wonderful orthopedic he does survives on some of the professional players. Then it was bipolar then schizophrenia to find out it was actually symptoms of viral and autoimmune encephalitis and now it’s HE, which is not in my family but when l asked my previous gasterentogist he said it was the medicines. So it could be the antidepressants which they have taken me off since this diagnoses or it could be from ibuphron, diuretics, or maybe seizure or high blood pressure meds. Who knows?? So that’s why l wanted to know why l was going to the gastroenterologist/ hepatologist since l only seen the gastroenterologist before. Yes my stomach is hurting my upper stomach hurts and l am gaining so much weight. I was never this heavy only since l was taking the antidepressants and told about my HE and when l tell the doctors and l have told more than one they don’t seem concerned. Only the vascular medicine doctor and the Mayo Clinic. He told me about my shunt that is open. So l didn’t know if it’s a slow bleed or what. He told me if everything was ok he would call me but he didn’t l was just setup up with a consult and not told why. And l asked why l was having a consult but of course they won’t tell you. You must talk to a doctor in that department and the doctor who sets it up and they don’t tell you over the phone. So l was wondering what was the difference but only told they do both. But l said why l am not seeing just the gastroenterologist and l was told he specializes in the liver. I wanted to know if that ment another TIP surgery or if it was more than just that? So l guess l will find out next week but l just wanted to be a little knowledge about it because you know how they explain things and you have to tell them to break it down to layman’s terms. But l do want to know about when you had to wait for your liver were you on dialysis or you had to take special meds? But it seems like you overcame and you got the victory…

@colleenyoung

How wonderful that you chose to pick up the violin again after your transplant. Music is such marvelous to express gratitude that is beyond words sometimes. Having said that I also want to acknowledge the gift you have with words, especially as a volunteer mentor here on Connect. I see many members following your example, and appreciate the supportive community here in the Transplant group and on Connect as a whole.

@chattykathy @contentandwell @2011panc @davidgenebarnes @eileenheart @amynewheart @bsox1901 @doogie02 @coastalgirl @dglass4040 @fauneconner @hlweber1 @sandyblair @scottb32 What part of your transplant story would you like future transplant recipients, donors and supporters to know?

Jump to this post

Hi Lisa, Just to clarify, that inspiring story about her liver transplant was written by JK @contentandwell.

Hello everyone,
Recently, our face transplant recipient was able to meet the family of his donor at Mayo Clinic. We thought you might enjoy this video – make sure you have your tissues ready!
If you’ve had a deceased donor transplant, have you had the honor of meeting your donor family?

https://newsnetwork.mayoclinic.org/discussion/mayos-first-face-transplant-patient-meets-donors-family/

Have a wonderful weekend!
-Kristin

I want to share a mini story, an inspiration that I received at my church this morning.

I met a visitor before the service. I introduced myself and he extended his hand in greeting (a ‘no-no’ – especially in flu season). So, I very politely told him that I choose not to shake hands because I’m an organ transplant recipient. Then, instead of the usual awkward response, he surprised me with a smile and eagerly told me about his friend who also has a liver transplant. We had a short conversation and he told my that his friend transplanted 19 years ago! and that she continues to do well.
🙂 I am smiling today because of that inspiring moment.

What are some inspiring stories that you have to share?
Rosemary

@rosemarya

I want to share a mini story, an inspiration that I received at my church this morning.

I met a visitor before the service. I introduced myself and he extended his hand in greeting (a ‘no-no’ – especially in flu season). So, I very politely told him that I choose not to shake hands because I’m an organ transplant recipient. Then, instead of the usual awkward response, he surprised me with a smile and eagerly told me about his friend who also has a liver transplant. We had a short conversation and he told my that his friend transplanted 19 years ago! and that she continues to do well.
🙂 I am smiling today because of that inspiring moment.

What are some inspiring stories that you have to share?
Rosemary

Jump to this post

@rosemarya I was surprised at church at how many people did put out their hands to shake. There are churches that have come out and said not to shake hands, and that are only giving communion to a person’s hand. It’s a terrible flu season. they have also said to please stay home if you are not feeling well at all.

I know I plan to be wearing a mask in the airport and on the plane when we go to CA the first weekend in February (to watch the Superbowl with our son, regardless of which teams are playing, but of course we are hoping it will be the Patriots. My husband and son have had this tradition for years, this will be my first time that I will be joining them.). I actually got my husband to get a flu shot on Friday too, he never does. I read that in CA some hospitals have had to turn down patients because they are over filled!
JK

@rosemarya

I want to share a mini story, an inspiration that I received at my church this morning.

I met a visitor before the service. I introduced myself and he extended his hand in greeting (a ‘no-no’ – especially in flu season). So, I very politely told him that I choose not to shake hands because I’m an organ transplant recipient. Then, instead of the usual awkward response, he surprised me with a smile and eagerly told me about his friend who also has a liver transplant. We had a short conversation and he told my that his friend transplanted 19 years ago! and that she continues to do well.
🙂 I am smiling today because of that inspiring moment.

What are some inspiring stories that you have to share?
Rosemary

Jump to this post

@rosemarya that was a very inspirational story.i didn’t know you have to always be conscious of that after a transplant but it was sure a blessing he understood and he told you a story of how a friend of his is still doing well after a transplant.

I have to say guys, I don’t know how long post transplant but this is my 4th kidney and after my three month period, it was just as normal, now granted its flu season and we have to be carful but you just have to be conscious of keeping your hands away from your nose and mouth, I’ve always shaken hands, that’s just me and I’ve only had the flu one time in 10 years , that’s when I had half of my family, about seven people total and everybody was sick but two of us , be carful but enjoy life.

@ca426

I have to say guys, I don’t know how long post transplant but this is my 4th kidney and after my three month period, it was just as normal, now granted its flu season and we have to be carful but you just have to be conscious of keeping your hands away from your nose and mouth, I’ve always shaken hands, that’s just me and I’ve only had the flu one time in 10 years , that’s when I had half of my family, about seven people total and everybody was sick but two of us , be carful but enjoy life.

Jump to this post

@ca426, I myself am a 7 year heart transplant and I still try not to shake hands and both my son and daughter even though they are special needs understand that they can give mom a hig at anytime as long as they are not sick but no shaking of hands unless hands are washed and sanitized first with hand sanitizer and no kisses allowed unless asked I have had people come up and want to shake my hand or give me a hug and I have had to explain I don’t do that because of my transplant but the prolpe I like the most that ask me are the kids as they are so affectionate but they seem to understand why i won’t hug or shake their hands better thwn most adults do so for me its meeting new kids and helping them to understand about transplantation and good hand hygiene i just love them as they are so willing to learn and ask questions most adults won’t ask

@rosemarya

I want to share a mini story, an inspiration that I received at my church this morning.

I met a visitor before the service. I introduced myself and he extended his hand in greeting (a ‘no-no’ – especially in flu season). So, I very politely told him that I choose not to shake hands because I’m an organ transplant recipient. Then, instead of the usual awkward response, he surprised me with a smile and eagerly told me about his friend who also has a liver transplant. We had a short conversation and he told my that his friend transplanted 19 years ago! and that she continues to do well.
🙂 I am smiling today because of that inspiring moment.

What are some inspiring stories that you have to share?
Rosemary

Jump to this post

Great story, @rosemarya ! Teresa

Please login or register to post a reply.