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TxBuddies Mama
Member
Username: risa
Post Number: 5039
Registered: 05-2003
| | Posted on Wednesday, June 25, 2008 - 09:01 am: | 
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Dear Transplantbuddies
Our beloved MommyMin aka Mindy passed away this passed Sunday June 21. Her health deteriorated quickly and Mindy decided not to pursue further transplant options. I had no idea how sick Mindy became. She called me three days before her decision not to pursue transplant and I could hear an extreme anxiety in her voice. I will always remember our conversation. She asked if I found a home yet and also asked if Karen Range received Lungs. She also told me that I was right about Duke and how strict they were. She said she did not think she could go ahead with the transplant but of course denial set in and I initially ignored her comment
After I hung up the phone, I felt that Mindy was losing the Will to Live and that is why I created the post on the transplant Sharing exchange about The Will to Live. I thought maybe somebody out here would be able to reach her. At the time I was able to reach her family, Mindy had already made her decision not to transplant.
Her husband Mark called me the next day and informed me how sick Mindy was.
I tried to give him advice in ways to help Mindy. He tried everything. When I received an email from her wonderful sister Robin the next morning we were both trying to find answers why Mindy decided not to pursue other transplant centers. Since I have not spoken to the family at length again, I do not have the entire story here.
Since I have had two transplants myself, I thought about her decision and realized how Brave Mindy was to make this decision. I called and briefly spoke to her Mother in Law and she told Mindy how I felt about her decision.
My body is shaking and my face is all tense as I write this post. I have spent the last year talking with Mindy about transplant over the phone. Mindy and I knew of one another through our cf connections all through the years. We briefly met in person in passing when we are in a news article about 12 years ago at our doctors office. She was healthy and pregnant and I just had my first transplant.
Because of the cross contamination issues relating to cf, I never had an in person contact with her but we still developed a strong bond through the phone and especially after she signed up with TransplantBuddies. It took Mindy about a year to convince her to join. I could tell her much she enjoyed all the people here. She was very impressed with our BreathinSteven and Karen Range.
Please keep Mindy and her Family in your prayers. You can read more about Mindy and her history here.
http://www.legacy.com/Herald/DeathNotices.asp?Page=Notice&PersonID=112172018
This part is from Robin, Mindy's sister
"The love and friendship of all of those who attended Mindy's service validate what I always knew about her, she is and was an extraordinary person. I actually looked at her one last time, the coffin was opened only for the family and seeing her like that helped in a way because I felt as though I was looking at one of the dolls my mother buys for Remi, in a packaged box. That was not my sister so I know for a fact she is in a different and I hope more peaceful, magical, safe and comfortable place. Actually, Shari and I planned even before Mindy died that we would go to see a therapist, Mindy and her family have been seeing this women for years and she knows Mindy intimately. It will be good to talk to someone who already understands Mindy's trials and who can appreciate the sorrow we are feeling. I wake up, whether in the middle of the night or in the morning, the first thought is of Mindy and I remember what happened. Naturally, I cry. Mark left her cell phone connected so people can leave a message for her. I intend to call her today as I did every day just to see how she felt and to chat if she felt like it. No matter when I called, I always woke her, it was out running joke. Now I will never be able to wake her again so I can call anytime. At the shiva, people who have seen me before, but upon whom I didn't make much of an impression, suddenly were saying "oh my God, I saw you over there and thought it was Mindy" They were amazed at the resemblance, even the Rabbi whom I have met on many occasions commented about my appearance. It made me happy to think I reminded everyone of Mindy, a much bigger and chubbier version! Mark was standing next to me at one point when one of their friends commented about my looks and I turned to Mark and he said are you kidding, of course I always thought you two looked alike, but for the 17 years I've known him he never said a word about it. I think about the future and I want to sit with Mark when he is ready, sooner than later I hope, to let him know that I want to be part of his life and that of Lee and Remi. I want him to know I will help in any way he needs me to we are family and although they have friends lined up to do all of the helping, I want to be first in line. I'm rambling a bit I know so much going on in my heart and head right now. I'm am not bitter,rather justifiably angry at the way Duke handled my sister's case and led us to believe she would have a second chance. Up to the end, there were assurance by the doctors that Mindy would get the transplant. Death is part of life, doesn't make it any easier to accept." Robin 
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debbie
Member
Username: debbie
Post Number: 741
Registered: 05-2006
| | Posted on Wednesday, June 25, 2008 - 09:22 am: |
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Wow,
I am so sorry to hear of yet another loss to our "family". How sad that she gave up on pursuing the transplant. Was it that Duke did not want to transplant her? I will say prayers for her beautiful family and I hope they know she is now at peace and breathing just fine. God Bless, Debbie
Debbie
Kidney Transplant 12/5/2005
Nebraska Medical Center
Non-related living donor
Forum leader-Kidney/Transplant Sharing
Live, Love, Laugh!!! |
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LadyDi
Member
Username: ladydi
Post Number: 582
Registered: 03-2008
| | Posted on Wednesday, June 25, 2008 - 09:51 am: |
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Oh no! She was so young! This is a terrible tragedy for her family, but at least Mindy now has her lungs and I am sure is singing loud and beautiful with all the angels in heaven. Risa, I appreciate you taking the time to fill us in on this in detail - I know it had to be hard for you to type this message for us.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
We are all faced with great opportunities brilliantly disguised as impossible situations. |
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TxBuddies Mama
Member
Username: risa
Post Number: 5040
Registered: 05-2003
| | Posted on Wednesday, June 25, 2008 - 11:49 am: |
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Hi Debbie
Thank you Debbie and Lady Di for your special thoughts about Mindy.
From what I know about Duke, before they list you as active you need to complete a few weeks at their center of living. She was unable to exercise due to fatigue and anxiety. This is all I know. Sorry
I could never be accepted at Duke. I am not good at following time schedules. I have to do everything on my own time. Duke is like going to the Military. They have a good success record and whatever works for them. I just wish they told Mindy that she should have pursued other centers before she got too sick. Hindsight is always 20/20. That is why I feel it is important to have another center to go just in case someone out there has a hard time finishing all the workouts and planning. I told Mindy all about this and tried getting her to pursue JMH here in Florida before she moved to N.C.
Fortunately, my tx center Jackson Memorial knows that I have many different exercise equipment at home. They allowed me to go home instead of going to a long drawn out rehab. I proved my success to them with flying colors.
From what I have seen with cf/tx those who have good nutrition and workout do the best.
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Anne70
Member
Username: anne70
Post Number: 64
Registered: 02-2008
| | Posted on Wednesday, June 25, 2008 - 12:04 pm: |
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My heart goes out for her family and for you Risa. I know it must have meant the world to Mindy having you as guiding light. It's hard knowing that she never got her chance but somewhere a butterfly is flying high up in the sky looking down upon us smiling....
Love
Anne |
CiscoKidney07
Member
Username: gregg
Post Number: 743
Registered: 03-2008
| | Posted on Wednesday, June 25, 2008 - 12:41 pm: |
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Risa, I am sorry to hear of one of our sisters passing. I know that many of the centers that are responsible for transplants want to have their patients to follow certain regimen and want them to be in as good a health as they can be. I would assume that after awhile if you have had some set backs, it makes it difficult to continue. May God Bless our sister.
| Still nuttier than a squirrel turd |
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TxBuddies Mama
Member
Username: risa
Post Number: 5042
Registered: 05-2003
| | Posted on Wednesday, June 25, 2008 - 01:47 pm: |
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Thank you Cisco for thoughtful words.
I forgot to add that Mindy mentioned how impressed she was with Patti and how beautiful Patti and Karen were. We had fun on our clothing thread.
As things come back to memory, I will post them.
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Jeff
Member
Username: jeff
Post Number: 729
Registered: 07-2007
| | Posted on Wednesday, June 25, 2008 - 01:50 pm: |
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That is very sad to hear Risa, my thoughts are with her family and friends. I think I can understand her thoughts about not pursuing other tx options. I sometimes feel that some people after a long struggle with an illness just lose the desire to fight it anymore. God forbid that my kidney should fail, but if it should, I know I would have a hard time doing dialysis again. I would be open to another tx, but dialysis I would have to seriously think about, that is one road I would rather not travel down again. As Diane said, she was far too young and I can only imagine the pain her husband, children and family are feeling now. Thank you for letting us know.
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TxBuddies Mama
Member
Username: risa
Post Number: 5043
Registered: 05-2003
| | Posted on Wednesday, June 25, 2008 - 01:55 pm: |
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Thank you Jeff for posting your thoughts. I am sure when her family reads all of these posts, they will realize that Mindy made a difference on this site.
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BreathinSteven
Member
Username: breathinsteven
Post Number: 1082
Registered: 11-2004
| | Posted on Wednesday, June 25, 2008 - 01:57 pm: |
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Mindy has a "guest book" associated with the above link that Risa provided -- I'm sure a note or a thought from anyone here would be welcomed by her family... This is the note I posted:
June 25, 2008
Mindy -- I didn't really know who you were or all that much about you... I knew you through TransplantBuddies -- I knew some of your journey and some of your struggles...
I didn't know you well, but what I did know was a precious, beautiful soul -- someone who was struggling herself, but so helpful to others -- someone with so many kind words for the people surrounding her...
This disease sucks. There is really no better word for it... I wish you lived forever... You didn't deserve all you went through -- all that happened to you -- but you did what you needed to do and I'll always admire your spirit...
You were a good person Mindy -- I have to believe you already have your wings (I think I heard bells ringing, maybe they were yours...)
My thoughts and prayers are with you and your precious husband and family...
Love,
Steve
Steve Ferkau
Chicago, IL
Steve Ferkau (Chicago, IL)
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TxBuddies Mama
Member
Username: risa
Post Number: 5045
Registered: 05-2003
| | Posted on Wednesday, June 25, 2008 - 02:06 pm: |
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Thank you Jeff and Steve for signing our thread for Mindy's family.
Steve, I just signed Mindy's guestbook. Thank you
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TxBuddies Mama
Member
Username: risa
Post Number: 5047
Registered: 05-2003
| | Posted on Wednesday, June 25, 2008 - 02:38 pm: |
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I just had another Mindy memory...
When we last spoke over the phone last week, Mindy told me she was on BiPap. She said it made her feel peaceful. I then told her that if you can handle BiPap you can handle transplant.
Maybe what Mindy was trying to tell me was that she felt peaceful with her decision that she did not want to share with me at the time we were talking?
Perhaps when I first heard her voice filled with anxiety, it could have been that she thought I was going to be disappointed with her decision. She did say, " I do not know if I can go through this" during our phone conversation.
Just wanted to post that I was impressed that she thought BiPap made her feel peaceful. I often wonder about CO2 retention. I remember feeling I was on a high when it went extremely high before I was ventilated.
I was not happy on BiPap maybe because my C02 was not that high?
What really matters was that she said she felt peaceful.
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Karen Range
Member
Username: relivkaren
Post Number: 1064
Registered: 07-2007
| | Posted on Wednesday, June 25, 2008 - 05:17 pm: |
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I am at a total loss for words. I don't do loss well. I want my friends and family around me forever. However, I know that it doesn't work that way. I am so sad. Sad that we lost a friend and sad that the chain of events led to an undesired outcome for all of us - her friends and family. Since none of us really knew what Mindy was afraid of about transplant, it's so hard to know if she gave up or was brave and embraced her death with grace and peace. I guess it really doesn't matter because now she has gone home where she will struggle no more. I loved what Steve said about getting her wings. You know - I think I heard that bell too!
She will be missed terribly. We did have a lot fun and I thought she was a very beautiful, talented, loving young woman. She was a wonderful mother and loving wife. I will probably go back and read every one of her posts over the next few days just to put her memory secure in my mind. I don't ever want to forget any of our Txbuddies and certainly not Mindy.
I love you all!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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TxBuddies Mama
Member
Username: risa
Post Number: 5049
Registered: 05-2003
| | Posted on Wednesday, June 25, 2008 - 05:56 pm: |
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Thank you Karen for sharing your beautiful words.
I know Mindy is smiling down on you.
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Hostess Risa
Member
Username: risa
Post Number: 5104
Registered: 05-2003
| | Posted on Friday, June 27, 2008 - 05:56 pm: |
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This was sent from Mindy's sister Robin
"Risa, I read all the postings, everyone of them amazing and once again Mindy was able to impact the lives of so many in a most positive way. Let everyone know that Mindy was ready for the transplant, in fact she and I and I strongly believe her husband and her long time physician Dr. Schwartzman expected her to be transplanted a day or two after our medivac arrival in NC. She tried valiantly to conform to the rigors of the Duke protocol, I know I was there as her caregiver and peanut gallery rooting her on. No matter how hard she tried, I felt and I think she did as well, that Duke found her efforts unacceptable. Their negativity was pervasive and contributed greatly to her eventual loss of will. Not one of the many (35) tx team members gave her an encouraging word. The final blow was the rejection from their program and at that point she was too tired to go on.I came to understand after many tearful days and nights that we were all being selfish in a way. Yes, Mindy wanted to live to see her children grow to adulthood, to spend more time with her friends and family and to be here to help others live with this horrible disease. Although receiving new lungs would prolong her life, she would never have the magical life we imagined for her. There would always be medications, doctors, invasive procedures and most of all the fear of rejection. She was willing to do that and because she always had handled her illness with such grace and ease, we knew she could handle the transplant.In the end she couldn't and so we had to let her go, which she did with grace and dignity and peace. Her children are a testament to a life well spent here on earth and to a place for her in what ever unworldly place one's spirit goes to when it is so well deserved. I love my sister and always will miss her. Her spirit is in my heart. " Robin
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LouLou
Member
Username: manilaangel
Post Number: 499
Registered: 09-2007
| | Posted on Saturday, June 28, 2008 - 08:08 pm: |
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Wow, this is the first time I opened my mail, and deeply saddened about your news Risa on the demise of our dear friend Mindy.
This is totally shocking to me,and I must admit that I was just crying reading your news and imagine how hard it must be for you. Inspite of the encouragement, there is nothing anyone could have done better than what you had done for Mindy through all these times.
I am sure how difficult it must be for Mindy, and the will to live for her was zero.Sometimes when the physical and mental difficulties overcome us because of our illness, it is difficult really to imagine hope.
I did not realize how sick Mindy was........I would have not know how I would have handled myself if I was in her place.
When one loses the will to live, everything just drops to the bottom.
I am very touched by her sister's message as well.
CF must really be a tough illness and going through the transplant and all that. I am just learning through you and everyone else who has CF.
That is why I admire Karen as well,her strength, and because of her love for her family, she has the will to fight for her life.
May God bless Mindy's family, and now rest assured she is resting in the arms of God, where there is no more suffering, only peace and comfort.
Her family, and most of all Mindy will be in my thoughts and prayers.
I am sorry that we have lost another friend here........there are lessons to learn for every tragedy, for every death, for every suffering, and every illness.
I am sure she has taught me as many others here another lesson in life.
May God continue to keep her and her family in his loving arms.....and I pray that her family will be able to heal from this difficult time.
Love,
Lou Lou
Lou Lou
Forum Leader- Prayer and Inspiration
Kidney Transplant recipient
July 2007
Every Moment is a Gift.
CELEBRATE LIFE each day!
RELAX, REPLENISH and CELEBRATE
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Hostess Risa
Member
Username: risa
Post Number: 5132
Registered: 05-2003
| | Posted on Sunday, June 29, 2008 - 04:16 pm: |
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Hi Lou Lou
We will never know what happened with Mindy and why she decided that she no longer wanted to pursue a transplant. She was a busy person who lived her life to the fullest. She went out with her family and took care of her children. Living with CF end stage is much harder than any lung disease. You have constant thick mucus and if you miss a day of clearing it out, the disease just takes over leaving you vulnerable to more colds and flus. CF is like a crying child. If you ignore it, it takes over and makes your life miserable. If a person cannot keep on top of all aspects of this disease it is practically unbearable to live with.
I had two lung diseases and nothing is worse than CF. That is why a cf patient is top on the UNOS list to get lungs.
Making a choice not to transplant is wise for some. Some people rather live out their days knowing that they made the right decision. Going through a transplant does not work for everyone as we all know.
At first, I thought she was losing the will to live but I was wrong.
Please know that Mindy made the right decision for herself and that is why I believe she was brave in doing so.
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Patti
Member
Username: transplantmommy07
Post Number: 970
Registered: 01-2008
| | Posted on Saturday, July 26, 2008 - 08:18 pm: |
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Wow, this is the first time that I am reading this post because somehow I missed it. It could be that I had just gotten back from WA when this was posted and I wasn't checking a whole lot of things and just passed it by.
I am so sorry that she decided not to persue a transplant somewhere else when Duke (apparently) turned he down. I am so sad right now and sad for her family. I can't imagine what she was going through in her final days when she had been doing all of that traveling and packing to get to Duke and then for nothing to happen. I did not realize that she was so sick. I mean, from some of her posts, I knew that she was bad, but I didn't expect to be reading this. I really thought that she would get Txed and pull through.
Mindy,
I will never forget you! You are a beautiful angel now and can breathe easy! You will be missed.
Patti
Double lung and liver Tx, 1/31/07
1st one at the Cleveland Clinic
www.3organtransplant.blogspot.com
Life is not measured by the breaths we take but by the moments that take our breath away. |
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