WHAT has HELPED You COPE Before, During and After Getting a Transplant ?

Replies to This Discussion

Permalink Reply by Teresa Dixon on January 4, 2010 at 1:18pm

Probably the things that have helped me the most are...1) My Faith in God - He has been there for me every step of the way though at times I even questioned that 2) Friends - Different friends have met different needs along the way - some were soft and gentle with me and others were wonderful coaches to me - direct, to the point, yet lovingly firm when I sometimes needed it - I had my selfish days as I waited 3) Sites like this one - a place that I could go to review stories and questions of those that have gone before me 4) A supportive family - this has happened to them too - a balance in supporting one another 5) A very supportive Transplant Coordinator - she was available and knowledgable and reminded me that my fears and concerns were normal and has given me permission to take one day at a time - often reminds me how very necessary that is in this process.

▶ Reply to This

Permalink Reply by Bobbiejo Winfrey on January 5, 2010 at 5:19am

I think what you are doing a great idea, and I hope that the responses you get will be helpful both to you and the others with whom you share this. I had a multivisceral transplant about four years ago. My list would probably be this: 1) My faith in God more than anything helped me to get through, especially at those moments when I was in the ICU (due to complications I stayed in the ICU for almost four months) and could not see as much family (my mother and father could mostly only come down for weeks at a time, one at a time while the other worked), and I felt most alone. I had a tiny little New Testament and Psalms that I could easily hold in my hands which brought comfort even when I could not concentrate to read because it reminded me that I was not alone, both because of God and all the prayers I knew that were going out on my behalf. 2)A very good supportive structure of people who helped me through, including my family (especially my parents and sister, although only my parents were actually able to visit me in the weeks of recovery in Miami as the rest of my family lives in Louisville, KY and could not afford to come see me then although since I have been home, their support have only seemed to have grown), the transplant doctors in whose hands I felt very safe and my local doctor who is trying his best to handle me, one of his difficult cases. I have also found tremendous support from people online in helping me to deal with my health problems long before the transplant and continue to support me now, and I have also found more online support groups such as this one here. I know that they have helped me tremendously by helping me not to retreat and withdraw and thus become depressed, especially as I am still trying to build up weight and energy to get out more often and still am not able to do so a whole lot, especially not on my own as I cannot drive. 3)Music has helped me get through a great deal whether this is simply listening to someone else sing or perform on an instrument. I have often found it to have given me energy and uplift of spirits that I did not see anywhere coming until I made the connection with the music. Listening to music during my long stay in the hospital post transplant recovery helped me get through moments when I did not feel up to doing much, and one cherished CD that I listened to over and over again while in the ICU and later was Sarah Brightman's Harem CD which happened to also have songs whose themes seemed fittingly appropriate on hard days in the ICU when it did not seem I was making any progress on the ventilator. I also just got a new music stand for Christmas, and look forward to trying and play my violin again which I have not really played a great deal since I first became ill, but it is continuing to call to me because creating music in this way has its own benefits and is probably better for the world in general (I do not have much of a singing voice although it does not stop me from singing sometimes as long as no one is around or I am not bothering someone else (the latter does not happen a great deal) 4) Humor has been a great essential to have throughout everything. The ability to look at everything in a new light and be able to laugh at myself is a very precious gift. I also had two large books of a humorous comic, the Far Side, which provided frequent laughter and because the comics were short, they were a wonderful book to turn to during my stay in the ICU when I guess due to all the medication, it was hard to concentrate to read long works (although I enjoy very much doing so now). Humor has helped me to deal with both the ups and downs in my illness that allowed me to handle each better, and besides humor can also be good at connecting people together too. 5) Keeping an open mind to new ideas and new ways of looking at things and keeping mostly positive while not denying any negative emotions or thoughts, as a realization that they are normal and disregarding them or trying to only makes me feel worse, but rather trying to find ways to channel them into more creative venues and productive emotions, such as supporting causes such as organ donation or charities that support the environment or those who have gone through similar illnesses, for example, or working to bring about changes in how I am treated in medical situations in the hopes that others may not have to go through the same, exercising or walking which both can be so therapeutic to the mind, having a good cry once and a while as a release, just always making sure not to linger in it, using what I have learned to help others and fuel my desire to study more about medicine and the medical sciences so that I may be able to give in return for all that has been done for me. This basically involves for me finding a purpose in this life, but not sacrificing what comes in between that end goal by looking just at the end, but by appreciating the steps that get me there, even if it comes in the form of a morning song of a bird that reminds that it is a new day with new possibilities and my heart is waiting to sing to if I only pause to let it listen intently and relook for the beauty in each matter, small and large, and then allow these notes to provide the music to let myself dance onward. Best of wishes to all.

▶ Reply to This

Permalink Reply by barbara Perry on February 26, 2010 at 8:57pm

So beautifully said and so inspirational to me as I lie in hospital @JMH , 2nd admission since liver transplant on 12/19/09. God is my answer to all, even though I've gone through the very dry places lately too. Keeping positive while not denying any neg emotion or thoughts.. Thank you so much. Tears of joy for your wonderful sharing
Love, Barb Perry by the way how can I save this so I can read it over and over/ not so savvy with these sites

▶ Reply to This

Permalink Reply by Paula M. Rice on January 21, 2010 at 7:51pm

Hi Kats. Before, the hubs simply refused to allow me to give up! His constant statement was "I'm not ready to lose you, yet & neither are the kids & Grandkids!" Sometimes he'd yell. Loudly!! When my 1st. "heart offer" proved unusable, he caught me as I fell, literally & comforted me for hours. I was soooo tired, after fighting to live for almost 50 yrs., most of that time diagnosed by anyone but me. No one believed me! When it finally happened, I didn't believe it until they wheeled me into the operating room. That part I don't remember, since I'd already been drugged, just to calm me down, I was so high on adrenalin!
Afterwards? My fantastic family; Dr's.; nurses, techs. Everyone was always wearing a huge smile. You see, no one expected me to last long enough to make it to the ER! I was their miracle, therefore, I had to live up to their expectations & those of my donors family, who'd just trusted a complete stranger to help their son continue living. I try to remember all these things whenever I get depressed. Sometimes Michael has to remind me. For me & every other person on earth, life is always one day at a time. Some of us are just lucky & Blessed to be given a second chance. hugs &Blessings, Paula

▶ Reply to This

Permalink Reply by Melissa Berry on February 26, 2010 at 9:51pm

the top 5 things
1. i want to watch my daughter grow up
2. having hope of receiving a transplant and living a healthy life
3. my family support
4. the close friends i do have
5. and last im hoping god will help me...

▶ Reply to This

Permalink Reply by Paula M. Rice on February 27, 2010 at 12:49am

All I can say is "Stay strong & positive & when things look their darkest, know that your support group is more than just your immediate family"! We are here for you, too. I strongly believe in the power of prayer & truely believe that & my faith/support group are the reason I am here. Simpy put, God's not ready to takeme home. Remember, All things are in His time, not ours. Hugs & Blessings, Paula Heart 2-14-01

▶ Reply to This

Permalink Reply by Joe Berry on February 27, 2010 at 8:46am

My entire journey I have gained strength from:

1. The never ending support of my wife. She was with me my entire journey. Every time I was hospitalized before transplant she was there every day all day long. At my transplant center she was allowed to sleep there also. All decisions were made as a team. During transplant she was with me every minute, leaving only when they forced her to get some sleep. After transplant she made sure I took my meds, got to my appointments, exercised, drank lots of water, and generally took care of me. Today (28 months out) she is still loving, helping and supporting.

2. My doctors and the entire healthcare team. My local GI doctor and my primary care doctor who advocated on my behalf and the transplant team for their cohesiveness from the time we met until today. Even today, I get a hug whenever I visit my local doctors. My primary care doctor even arranged for my family to stay at his parents empty, but furnished Condo near the transplant center when I had my transplant.

3. My family who were always positive and supportive. They made many trips, phone calls, sent numerous emails and cards.

4. My friends and co-workers who offered support through emails, calls and cards during the entire journey. One even tracked down a medical device for me and was able to get it for me at no cost.

5. God – I wouldn’t be here unless He had a plan for me.

▶ Reply to This

Permalink Reply by Teresa Dixon on February 27, 2010 at 9:17am

These are all so beautiful and encouraging to read - I myself have been going thru a hard time in dealing with "shingles" a side effect of the CMV I came down with while my immune system was too suppressed - the pain has just been terrible. It DOES help to read these posts - Thank for starting the thread and for those that have responded! Teresa

▶ Reply to This

Permalink Reply by Bobbiejo Winfrey on February 27, 2010 at 11:40am

Dear Teresa,
I am sorry that you are dealing with shingles and CMV at the same time. I also developed shingles on my right thigh a couple of years after my transplant, but I did not have any other infection at the time. I hope that the pain associated with it will soon pass for you. I will keep you in my thoughts and prayers. I agree that it has also helped me tremendously to read the posts here, and I appreciate too all that have responded. It is so good that we can be there for each other. Best of wishes and many hugs to all.

▶ Reply to This

Permalink Reply by Paula M. Rice on February 27, 2010 at 1:20pm

Aren't shingles the abslute WORST?! Mine arrived a few days before we left for our youngests' wedding, in Las Vegas! The only upside, apart from the beautiful wedding, was the fact that they got married Oct.10th. & the weather was bearable. Even the Lyrica co-operated, by not making me "too" crazy, for a few hours. It also helped that I refused to take anything except hydrocodone the rest of the trip. The Lyrica isamost as bad as the shingles, where side effects are concened. Here's hoping the miserable thing NEVER raises its' ugly head, again, in the form of "Echoes" &, yes, it is possible. They are like phantom itches; weird rashes & pain. It has visited twice in the past 6yrs. Two times too many. I know. It's never suppose to recur & ir doesn't, in its' true form. Anyone want some Lyrica? I have plenty!!!!! Hugs & Blessings, Paula PS. ALL my doc agreed that my supressed system was the likely culprit for my shingles, as everything else was fine.

▶ Reply to This

Permalink Reply by Teresa Dixon on March 1, 2010 at 7:00am

They are now calling it Postherpatic Neuralgia - they didn't recognize it as shingles at first and the 72 hours passed that they could have treated it with a medication that would slow it down so I now have this - the Dr says it could last as long as 6 months or more, maybe less. I am on Neurontin now and it seems to be helping. It was all caused by the CMV while my body was too immunosuppressed too - Man!!! One day at a a time! Again - it is so helpful to read others stories and to receive words of encouragement from those that understand - Teresa

▶ Reply to This

Permalink Reply by Paula M. Rice on February 27, 2010 at 1:27pm

If God hadn't Blessed me with a support group just like yours, I never would have made it through the process to today, where everyone is still just as supportive! My husband has been my biggest ceerleader & "cattle prod" (at times). We are truely some of the most Blessed people on earth. Hugs & Blessings, Paula TX 2-14-01

▶ Reply to This

• ‹ Previous
• 1
• 2
• Next ›
• Page