Update

[Beverly]

Hi all,

Sorry I haven't been on in awhile. I have to say I have been busy getting my family back on the Mommy schedule and doing rehab 3 times a week. I am able to exercise 45 minutes to an hour. I started to run 2 weeks ago. You see my 10 year old son and I have a race scheduled for the end of this year and I need to kick his little behind. My kids don't know what to do with Mom back in charge. My husband is loving me being back in charge and his responsibilities decreasing. God has given me my life back and my husband's wife and my kids Mom. We are feeling very thankful.

My journey has truely been a blessed one. I have had a few bumps in the road but nothing major. I have not had any rejection and have lost about 5 meds already. I'll be off steroids next month. I've lost 20 pounds and still have plenty to lose but at least I can see the light at the end of the tunnel.

I have learned about my donor. She was a 20 year old that had a cocaine overdose that caused a seizure and she never woke up. All eight of her donateable organs were successfully donated. I was called to do an article with family in the DesMoine Register. I have done the interview and the article should be out in a few weeks. I will post it when it's done. I have also been asked to do an article in one of our local papers. I told my husband that I felt like God would want me to use my story to increase awareness of HCM and organ donation. I haven't had to seek anything out the situations have sought me out. Please keep my donor's family in your prayers during this healing time.

Aimee and I were transplanted 2 weeks apart. She had a very long difficult journey. I advise you all read her story. She has come thru the transplant of all transplants. We actually were finally able to meet this past Monday face to face. We talked over 2 hours of Magnesium which is common for transplant recipients to need. Keep her in your prayers, she will have a very long road to final recovery.

Please feel free to ask any questions you may have about my situation or transplants in general. Hope all is well for the other HCMers, you are all in my prayers always.

Take care and God bless!
Beverly

[Linda]

Beverly - Thank you for the update, for sharing your experience. I'm so happy for you. Aimee, your young donor, and her family will certainly be in our prayers. Best wishes to you and your family - I'm thrilled for you all. Linda

[shirleymahoney]

Beverly

I'm so happy for you and I bet you are loving being with your kids more, I will keep you and your Donors family un my prayers

Shirley

[Largehearted]

Beverly.

Thanks for the great report!

Leon

[Midge Rollins]

Beverly, what a wonderful story. I am so glad you are back being a mom, and wife. I know how hard it is to not be active in that role. It sounds like you are doing great. Isn't it wonderful to exercise. I just signed up to swim in the transplant games in Louisville Ky., in June. Congratulations and God Bless all Donors and families.

[Lisa Salberg]

Bev,
I am so happy for you! We all know you have been though some difficult times to get to where you are today but that wonderful attitude helped you get to where you are today!
Lisa

[Pam Alexson]

Beverly , that is wonderful news to hear. I am so happy for your progress and what you have achieved . Keep doing well and letting us know of your progress . How wonderful to get your life back.. these are true miracle stories and reminds us all of hope and faith and how important keeping a positive spirit is.

Pam

[jmurray]

Beverly,

I'm glad to hear you are doing so well. Organ transplant (especially heart) absolutely amazes me. I'm glad you have been so blessed. Take care and keep us updated.

John:)

[Burton Borrok]

Dear-heart,
When I get around to feeling sorry for myself it’s people like you who remind me how lucky I really am.

Live a long, long happy life – and enjoy spoiling your grandchildren when the time comes.

All the best to you, your family, your heart and your heart’s family.
Burt

[karen cicconetti]

Dear Beverly

Isn't it great being a mommy again!! For me that was the greates feeling in the world. I was finally able to do the things I was never able to do with my son. Enjoy and God bless.

Karen

[Stuart Schwartz]

Beverly,

It's good to hear from you. Glad to hear all is going so well.

Kick that 10 year olds but!

Might we see you in NJ in June?

Stay well,
Stuart

[Aimee]

Hello everyone,
I am catching up as I settle into my new life. I am so happy to be alive and able to share with each of you. I just read Beverly post. It was so fun to meet her. We have been on the other side of the curtains in the cath lab but never met until our last visit. She looks fantastic. I just want to get up and get going with her. I have had one bout of rejection and it was not fun..The weight just piled on over 3 days ...20 lbs easy and I felt tough. You know you just pull yourself up and get going, follow the orders and the meds. In 5 days it was almost over but I ended up with an extra trip to the cath lab. My poor neck. On Monday the 27th of Feb I will go to surgery again, my 8th trip with this new heart. This time is to close the sternum and remove the wound pump. I am so excited to get rid of this 6 lbs of albatross hanging off me. I am slowly getting my meds weened, they were zoomed up after the rejection and so were my bloodsugars. Yesterday I walked 2 blocks, and I can tolerate my arm exercises and 2 sets of stairs. To most this is not a lot but I had a rough journey and had to relearn how to walk, talk, swallow, chew etc. It was a result of 16 days with the vent, and many ICU days and not to mention all the surgeries. I believe this heart is here to stay. Beverly remember when you run , do a few steps for me!! aimee

[Linda]

Aimee - Wishing you the best - Hope the recovery course moves more quickly from here on, and no more complications! Linda

[Pam Alexson]

Aimee,

Sending you lots of strength and prayers for you to get well soon. I can only imagine how rough it has been for you. Keep doing well.

Pam

[Midge Rollins]

Aimee, I am sorry you have had such a rough ride. I hope it gets better. Your attitude sounds great.

[angall]

Hi Aimee

I am sad to read that your have had a rough time after your transplant. It makes me wonder what will happen after mine.

I will include you in my prayers that you do not have any more unexpected events.

God Bless

[Midge Rollins]

Esther, please know that Aimee's case is the exception to the rule. Look, most of us have done just great, Beverly, myself, Scott and Karen. Remember to look at the positive. It sounds like Aimee's road has been a rough one but hopefully she is on the way now to a new life.

[shirleymahoney]

Aimee

I really do hope you have no more setbacks, and you make a full recovery and have a very long life you have been through enough

Thoughts and Prayers

Shirley

[Aimee]

Esther,
Someone had to be the exception to the rules of transplant and I guess God picked me!! 99% go so well and so fast. Home in 1 week. I had a type of rejection not seen in13 years at the University of Min. I also survived and because of what they learned a man with the same type of rejection has now also made it. In the past less than 1% made it. My case gave the MDs. new knowledge and insite , and if this is all God ever asked of me then I am a grateful person. Set your sights, never look back and retain a positive attitude. My motto now "Always and only forward" Aimee

[Aimee]

Hello each and everyone of you! Iam sailing along so good I hate to burst my own bubble!! Today I did 3 flight of stairs and walked around 2 blocks... not bad for a girl who had to learn towalk again just 8 weeks ago!! I'm going to run with Beverly one of these days!! Life is grand ...Aimee

[Midge Rollins]

Congratulations keep on trucking.

[Scott Stanley]

You guys tell me when and I will meet up with you for that run. Oh wait I have to get my foot out of this stupid boot first.

Yes thats right I broke my foot two weeks ago running. Don't ask, it has been a problem for the last ten years.

Scott

[shirleymahoney]

Scott

What a way to get out of exercising lol I really hope it isn't hurting too bad you take care

Shirley

[Laoshur]

Congratulations to both of you, Aimee and Beverly! I admire everyone who is brave enough to go through such a life-changing process, even though it holds the promise of running again!

Rhoda

[dreamcatchinglady]

Dear Beverly,
I'm so glad to hear you are doing well. That race sounds like fun. Us transplant receipients we can achieve so much and go for our goals:) Off 5 meds already wow that's amazing and off steriods soon? Hope I have some off that success.
I am looking into walking the heart walk. Should be fun. My mom and I are thinking of doing for this new heart that I'm thankful for and in honor of my cousin Polly who died a few years ago a few weeks after receiving her heart :( She waited too long to go on the list because she was scared. She's always with me I can feel it. While I was recovering at home I received flowers from some friends and it said Polly's flower shop made me remember her.
That is so exciting that you know about your donor. I don't know anything about my donor except he was a young man. I am trying to find the words for the donor family to express how thankful I am. It's such a gift. My doctors told me to wait 7 months or so to send the letter. I wonder about my donor everyday and God bless him. Take care Beverly Great to hear you are doing well!!

[Aimee]

Great News ...3/14/06 today was my Clinic visit and day at the cath lab for BX. All went very smooth and I am feeling just great. My meds are coming down. Prednisone down..Yeah!! and 5 others are now on a stop order or use as needed. Lasix is cut in half with the goal to eventualy get me off it !! I am so happy and my stomach is also. 23 meds is a meal in it's self. I will start cardiac rehab as soon as it can be set up. I have earned my place there by learning to walk and move again. My muscles are ready and so am I. The lower dose pednisone helps the muscles to tone up. I can walk for 30 min, do 5 sets of stairs ( 12 up and 12 down one set) and when I get done and a small break I walk to my husbands office 6/10 of a mile away (all down hill). So life is grand and I am on the move. Always and only forward Aimee

[Largehearted]

Good for you Amiee.

Leon

[Pam Alexson]

Great news Aimee, keep moving forward.

Pam

[angall]

Hi Aimee

I just love to read success stories!

As you know I am still waiting for a heart, but from reading stories that you and other transplant recipents have posted I know I will be able to do things that I couldn't do or things I could do but as my illness got worse, was unable to do. You all are an inspiration to us that are waiting.

Please keep us updated.

[Beverly]

Hi everyone,

Just wanted you all to know that my article with my donor family should come out this Sunday 3/19. It's in the Desmoine Register and you should be able to look at it online. I will attempt to post it as well. I'm still feeling great and working hard to do right by this new heart. I am so proud of Aimee and it has been so awesome for us to go this together. All others waiting keep your head up and do as your told to keep your heart a float until that new comes. If ever any of you need to talk let Aimee and I know. Also I am getting to go visit my family and friends in Va next week already. How exciting is that!

God Bless!
Beverly

[Midge Rollins]

Aimee, it sounds like you are heading up the right path now. congratulations

[Pam Alexson]

Beverly,

I look forward to reading the article. I am so happy for you !! What a great visit you will have with your family.

Enjoy!!

Pam