It seemed that my mind was in constant motion during my "wait" period.
It was at this time I discovered "wait" was a four letter word. Being on oxygen and at deaths door per se, thinking was all I could do. I had moved back in with my parents in Jacksonville mainly because I needed help, but I also needed a positive family influence to keep me going.
And my family exudes positiveness to the nth degree. I thank God constantly for blessing me with such a family.
I remember my Mom, God Bless her, would bring a cooler to my bedroom with a sandwich and drinks before she went to work. I was tied to an oxygen concentrator and the kitchen was too far to walk with no help. She also brought in all the crafts and books I wanted for the day.
Facing ones mortality at 28 years old is tough. It's tough for anyone, but I think more so when you're so young. You have to think about things you shouldn't have to worry about for another 40-50 years. How to disburse your estate..What estate? What could a person of 28 possibly have? ALOT, believe me. I bought a large Aluminum hurricane proof storage unit, had it delivered, tied down, electricity ran to it and my dad was going to put in an air conditioner. This held all my worldly possessions. The furniture I'd need to re-start my life post transplant among other items. I never contemplated that I wouldn't survive. It was just not an option. I planned for if I didn't, just in case. This unit still sits in Mom's backyard, now holding all her craft projects.
October 1, 1991
I'm thinking of making out a Living will at Dr. Chinoy's office. This is a really big dilemma for me, for in the living will I have to sign whether I want life support or not. If I end up in the hospital before the transplant, it will most likely be on life support (respirator). The only reason for this would be to keep my vital organs and lungs oxygenated while I wait for the transplant. If I state no life support, I can't get the respirator. BUT I don't want to be hospitalized indefinitely on a respirator.
If I do opt for the respirator, I'm afraid if I feel it's my time to go and ask for the plug to be pulled the courts/Dr. won't allow it to be done. Mainly because my mind will still be functional (I hope) and I'm asking to be freed. Not only this, I don't think my parents or family would have the strength to pull that plug. Especially if my mind is active and I'm alert.
If I am comatose it might be easier. I can only hope.
My last and most important wish would be: If I'm on life support for an extended period of time, and feel it's time to go Home that someone will have enough compassion for me to just turn the respirator off. I'm sure when it's time God will let me know.
When it happens, I pray someone will hold me in loving arms while freeing me from my medical bonds. My last breath will be whispering I love you to someone who's very special in my life.
I received my first lung transplant exactly 22 days later.
Facing your mortality is not easy, but it has to be done. We-none of us is immortal.
Talking it over with my parents did bring us closer, and we shared our wishes with each other regarding end of life.
My mom showed enormous courage in carrying out my Dad's wishes when it was his time. He did not want to be kept alive through force feeding.
In being selfish I can only say I'm glad it fell to her.
I celebrated my Daddy's freedom, but didn't have the strength to be the one to let him go.
I'll regret that forever.
How can I expect someone to have that strength for me, when I couldn't muster it for the most important man in my life?
Saturday, August 22, 2009
Friday, August 14, 2009
Everything eventually comes flooding back
I've been remiss in posting mainly because my little dog DB has started with a terrible cough.
We tried the old remedy recommended by the veterinarian to no avail. To no avail right... Have you ever tried to give a dog Robitussin??? I hate the stuff so I can only imagine how this poor little 10 lb. dog feels. I even went the gamet of getting childrens flavored!
So after a week of the cough calming down, he got worse. Me being the worrier I am, after all this is one of my boys. I took him back to the vet.
With all our exercise, walking and looking slim the vet found a significant heart murmur.......
Not only a heart murmur, fluid was backing up into his lungs causing the cough. When I heard this a flood of teenage memories flooded my consciousness all at once
Then the vet handed me 2 packs of meds. One was a heart pill and the other was Lasix. OMG! I looked at the dosage of 12.5 mg and said : "Wow, I only took 25mgs at the most at my worst times and he's only 10 lbs.." I was then told DB was in crisis mode and we had to prevent the fluid from leaving his lungs and going into his heart.
Another flood... a major one... My sweet, little, holy terror was suffering from some of the complications I had endured for many years!
I then and there made a promise to God. I will spoil my little one even more, I will be protective, I will also give equal time to my other 2, and I will NOT lose my little Dibs.
Our walks are much slower now. This is difficult for me as thanks to Prednisone I run on Hyper mode constantly. We used to walk at around 2.5-3 mph. Now we meander and sniff every blade of grass and let the other brothers chase squirrels and lizards, and when he starts lagging behind and breathing heavy, he lets me know it's time for a ride in my arms.
Carrying him can be a major feat in itself while trying to control 2 other holy terrors!
A fellow crafter makes slings to carry babies with. She will be my next email. He will receive his very own custom designed carry all sling for walks.
Since the vet says this will only get worse, he deserves the best.
Memories like these hit us at the most unbelieveable times. We accept them, because they made us the survivors we are today. We learn from them, and they help us to help others facing the same crisis in their lives. I just never thought I would be helping my dog.
What are some of your memories???
Wednesday, August 5, 2009
Jerry Dinnan
This morning I want to tell you about Jerry. I never got the chance to know him other than the volunteer work we did together at LifeLink, but that doesn't matter. You see, there is a special "kin-ship" between recipients and candidates for an organ transplant.
When I first met Jerry a few years ago we had volunteered to promote donor awareness in Sarasota. We both arrived wearing the same color Lifelink polo shirts and khaki pants as if we'd planned it. As the day progressed we discovered we lived a block away from each other! He was the light shining on the health fair. We joked, talked to others about becoming an organ donor, and wanted to hug all those who said they were already a donor.
The next time I saw Jerry was at a Donor Service of Remembrance held each November at the church he attends. Lifelink brought in donor families from the past/previous years for the donor and their families to be honored. It was at this service I realized deep inside how much I needed to thank a donor family and help some of these families understand how thankful all recipients are for what they have sacrificed.
This blog has taken me a few days to put together. Mainly because as a recipient I and many like me view all candidates & recipients as "family". We have scars, take the same meds, have the same side effects, etc. BUT mos of all we *strive to thrive* with all the daily obstacles, the medical obstacles, and honor our gift of life. When I hear of a candidate of recipient passing away, I not only grieve for the loss of their life and for their family. I grieve because a part of me goes with them. I know the daily struggle and strength each and everyone of us puts forth each second of every day to prove transplantation works. The loss is double. I've lost a friend, extended family member, and fellow kinsman who understands my thoughts without having to explain the medical aspects in detail. Or from the beginning.
Here is part of an email from Lifelink regarding Jerry.
You'll see why he is sorely missed.
I am very sad to inform you that LifeLink volunteer, Jerry Dinnan passed away last Thursday morning. For those of you who knew him you may recall, Jerry was a heart transplant recipient of nine years, was a passionate advocate for organ and tissue donation which few could rival. He was an active LifeLink volunteer, and led the good work of a support group - Transplant Recipients of Southwest Florida – in Ft. Myers. Jerry never turned down a chance to spread the important message of donation – and he touched countless lives by participating in every opportunity presented, including high school presentations, media interviews and other speaking opportunities.
Jerry was incredibly grateful for the gift of life he had been given by an organ donor, and he carried wonderful thoughts of his donor and donor family with him always. As a result, Jerry felt one of his most important roles was as facilitator of LifeLink Services of Remembrance, speaking from his heart to families from throughout West and Southwest Florida whose loved ones had become organ or tissue donors.
Even with his many responsibilities to the transplant community, Jerry found time to be an active member of his local church and a Hospice volunteer, ministering to families and individuals facing end of life issues. Jerry was a beloved husband to his wife, Debbie, for many years, and leaves behind four children, several grandchildren and many friends, who will all miss him dearly.
If you find a few spare minutes this Saturday morning (his services) please look up, smile and say hello to Jerry. He's earned his wings over and over...
When I first met Jerry a few years ago we had volunteered to promote donor awareness in Sarasota. We both arrived wearing the same color Lifelink polo shirts and khaki pants as if we'd planned it. As the day progressed we discovered we lived a block away from each other! He was the light shining on the health fair. We joked, talked to others about becoming an organ donor, and wanted to hug all those who said they were already a donor.
The next time I saw Jerry was at a Donor Service of Remembrance held each November at the church he attends. Lifelink brought in donor families from the past/previous years for the donor and their families to be honored. It was at this service I realized deep inside how much I needed to thank a donor family and help some of these families understand how thankful all recipients are for what they have sacrificed.
This blog has taken me a few days to put together. Mainly because as a recipient I and many like me view all candidates & recipients as "family". We have scars, take the same meds, have the same side effects, etc. BUT mos of all we *strive to thrive* with all the daily obstacles, the medical obstacles, and honor our gift of life. When I hear of a candidate of recipient passing away, I not only grieve for the loss of their life and for their family. I grieve because a part of me goes with them. I know the daily struggle and strength each and everyone of us puts forth each second of every day to prove transplantation works. The loss is double. I've lost a friend, extended family member, and fellow kinsman who understands my thoughts without having to explain the medical aspects in detail. Or from the beginning.
Here is part of an email from Lifelink regarding Jerry.
You'll see why he is sorely missed.
I am very sad to inform you that LifeLink volunteer, Jerry Dinnan passed away last Thursday morning. For those of you who knew him you may recall, Jerry was a heart transplant recipient of nine years, was a passionate advocate for organ and tissue donation which few could rival. He was an active LifeLink volunteer, and led the good work of a support group - Transplant Recipients of Southwest Florida – in Ft. Myers. Jerry never turned down a chance to spread the important message of donation – and he touched countless lives by participating in every opportunity presented, including high school presentations, media interviews and other speaking opportunities.
Jerry was incredibly grateful for the gift of life he had been given by an organ donor, and he carried wonderful thoughts of his donor and donor family with him always. As a result, Jerry felt one of his most important roles was as facilitator of LifeLink Services of Remembrance, speaking from his heart to families from throughout West and Southwest Florida whose loved ones had become organ or tissue donors.
Even with his many responsibilities to the transplant community, Jerry found time to be an active member of his local church and a Hospice volunteer, ministering to families and individuals facing end of life issues. Jerry was a beloved husband to his wife, Debbie, for many years, and leaves behind four children, several grandchildren and many friends, who will all miss him dearly.
If you find a few spare minutes this Saturday morning (his services) please look up, smile and say hello to Jerry. He's earned his wings over and over...
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