Transplants

[Beverly Dearly Departed Find all posts View Profile Close Beverly]

Hi all,

Most of you know that I'm 27 and have been diagnosed since age 14 but have had symptoms my whole life. See the message board (My wife diagnosed with end stage hcm). I have been on the transplant list since the end of September and get sicker every day. It sucks but I keep my faith in Christ that he will pull me through. What I've noticed lately is we are needing more transplants. Sounds like the 1-3 percent has increased to more like 10 percent of us will need them. I'm just praying that people realize that being a donor is the ultimate gift. I know it is hard to have to make a decision when your losing a loved one that's why we need to have more people make the decision before that time comes. The way I see it is that it's up to God when it's our time to go and in heaven we don't need our body. It's just a shell of our earthly remains. What a way to continue God's grace by being a donor. May God be preparing all the hearts we need and may the families feel the blessing behind the giving. I know mine is on it's way just a matter of time. Everyone keep your spirits up and take the best care of yourself now so hopefully you don't get to this point. Merry Christmas and God bless!

Beverly

[Debbie Major Contributor Find all posts View Profile Close Debbie]

Beverly,

Thank you for your wonderful post. It is just filled with God's love, and a message of hope.

I wish you the very best, and I hope that you have a Merry Christmas and that the Lord will provide you with your new heart very soon.

Debbie

[shirleymahoney Brave Heart Find all posts View Profile Close shirleymahoney]

That was a wonderful thing to say and i know deep down it is coming for you also Beverly and hopefully for myself, please take it easy and know i'm thinking of you everyday, and i hope you and your family have a wonderful Christmas season

Shirley

[Reenie Super Moderator Find all posts View Profile Close Reenie]

I agree with the wish that more people would choose to donate their organs to help others, but I'm not sure more of us are needing heart transplants. Please remember that many people seek out the HCMA when they're either first diagnosed or when they really feel bad. There are a lot of people out there with HCM who don't even know the HCMA exists. Others know, but since they don't have daily problems, they don't care. I think that this is like much of the old data about HCM that was taken from hospitals where the sickest people went. The percentages are a little skewed. That being said, I do have a donor card and I hope that most of you do too.

Reenie

[Beverly Dearly Departed Find all posts View Profile Close Beverly]

Reenie,

I agree that the HCMA has opened a lot of peoples eyes mine being one and that is why people are finding out more about thier individual cases. Thank God for the HCMA! But I saw Dr. Barry Maron and I got my statistics from the horses mouth. And I have followed the HCMA for a while now and yes there are more people coming on saying they need a heart transplant and having to be told that is very scary and the emotions won't stop until you get that transplant so it is not something to be taken lightly. I myself being on the transplant list will fight even after my transplant for more donors and for more HCM patients to be aware and realize how serious of a disease this is.

Beverly

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

Beverly,

I pray that the New Year brings you a healthy heart, and that your transplant brings you everything you deserve in life. You are a fighter... that much is apparent... and i just know that everything will work out for you!

I'm an organ donor myself... but God only knows who would actually want any of them! LoL. I have an HCM heart, i lost a kidney to cancer, my liver is probably all but pickled from years of boozing, and anything else that is leftover when i die is probably a far cry from what anyone would consider healthy. But i still got the ol' baby blues, and they still seem to be working fine. So i keep myself on the donor list if for nothing else but my eyes.

Please take care, and enjoy your holidays!

Jim

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Beverly, I wish you and others on the list better health this next year and that your wait be over soon. I can only imagine how scary this is for you since I've never been through it personally. I didn't mean to offend you, nor take your comments lightly. I just wanted to point out that I wondered if the data was skewed to show the sickest of patients. However, that being said, if Dr Maron says more with HCM need hearts than ever before, then I believe that completely.

Reenie

[Pam Alexson Moderator Find all posts View Profile Close Pam Alexson]

Beverly, and all those waiting. May the wait be shorter then expected , the time waiting be not too uncomfortable and the results of getting a new heart be better then ever imagined . Many many blessings for the New Year.

Pam

[Danielaeh Contributor Find all posts View Profile Close Danielaeh]

Dear Beverly,

I hope this waiting period will go quikly!
I know this is a difficult time.
My prayers are with you.

[Midge Rollins Moderator Find all posts View Profile Close Midge Rollins]

Amen to Beverly about keeping your faith. That is what got me through it. I continue to speak to churches, groups, employers to encourage organ donation. To all of you waiting for a heart, waiting is the hardest part of the whole transplant issue. It has been 9 mos and I am doing so well. Exercising daily (almost). Yes, there are bumps in the road but at least there is light at the end of the tunnel. I have not spoken much about my donor. He was 26 years old. He died in a car crash. He is survived by 3 beautiful small little girls. I have been in contact with his mother who appears to be next to a saint. She is so happy and grateful for me. One of the guys that lived with me at the transplant house in Rochester received his liver from the same donor. Emotionally, I continue to struggle and probably always will about how he died so I could live. Donating organs is giving the gift of life. I end all my speeches with "Don't take your organs to heaven, heaven knows we need them here. I was thinking of driving from Ia. to SC by myself (our daughter is moving there). But even though I feel good, decided I did not feel that good or stupid. My husband is driving the moving truck and I was going to follow and then we were going to go on a little trip. And now that common sense has set in. I will be at home. We will still take a trip but unsure where. I go back Jan.3rd for another biopsy and tests. Decided not to push my luck. So, all of you transplant waiters. Keep the faith. It will come. I waited 18mos. Beverly, are you on a Milrinone pump yet?

[Beverly Dearly Departed Find all posts View Profile Close Beverly]

Midge,

NO and they don't want to put me on one ever. I'm not sure other than I'm HCM and not HCOM. WE have discussed the pump but they just say I can't be on one. Why did they put you on yours? OH and my plan for after transplant is to be on Oprah or Dr. Phil and bring awareness to HCM and to organ donorship. God made the way for our family to get to MN in a matter of 2months so I believe he will provide for us and that includes a heart when the time is right. And he has a will for me to minister to others about this experience I just need to be patient and listen. So tell me about your recovery from start to finish so I know what to expect and why you were on the pump? Take care and Keep doing God's work!

Beverly

[Midge Rollins Moderator Find all posts View Profile Close Midge Rollins]

They tried the pump not knowing if it would help me. But believe me that Milrinone was great stuff. For 2 months I felt great and then as I got worse they increased it but I got my heart with in 48 hours of the increase. Apparently Milrinone is not really used in HCM, but they said they would try it as it got me to a 1B. If it did not work they would have taken the pump out and I would have been a 2 again. It sure was worth the try. They were glad it helped me as it maybe will make them know on the next HCM transplant. I am going to Rochester this Monday the 3rd. Take care.

[angall Member of 1000 Post Club! Find all posts View Profile Close angall]

Hi Midge

I'll include you in my prayers for a great progress report on Monday.

I'm sure you are doing a tremendous job speaking, first hand, about transplants. Keep up the good work.