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Message |
Sean B
Member
Username: Sean_b
Post Number: 1
Registered: 10-2010
| | Posted on Monday, October 25, 2010 - 01:52 am: | 
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My name is Sean Bagan, I am a 19 Year old male who lives in Vancouver. I have always been very healthy growing up, with no family health problems. I have played high level competitive hockey my whole life. In September 2009 I left to the University of Calgary and In december 2009 I was omitted to the Calgary hospital with heart failure with an EF (ejection fraction) of 7. I was then medical evacuated by plane after 3 weeks in the calgary hospital back to vancouver where all my family is. I was let out 2 days before Christmas. I was then on the road to recovery, and all of a sudden my body shut down and have several things wrong with my body. These included gallbladder failure and i had to have a drain coming out of my body draining my gallballder. I also had kidney failure, a stroke and many other serious problems. My heart was getting worse and worse and they decided to put a VAD (Ventricular Assist Device) in my body after 2 months of being hospitalized. The surgery was successful and i have now had the VAD for 7 months... unfortunately my heart still is not getting better and I am most certainly going to be put on the transplant list for a new heart in mid November. I don't know what to expect out of this experience considering I am only 19.
I am wondering what are the best steps in how to prepare myself mentally for the whole situation. This is the last thing that i expected to happen to me, and I just want the whole process to go smoothly.
If anyone has any tips on how to deal with this mentally please respond and inform me! thank you so much! |
Rise
Board Administrator
Username: Rise
Post Number: 14719
Registered: 05-2003
| | Posted on Monday, October 25, 2010 - 06:12 am: |
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Hello Sean
Welcome to TransplantBuddies I am glad that you shared your story with us. Our members will be able to relate to you and share with you their personal experience in the hopes to prepare you for your upcoming transplant.
Please introduce yourself again in our NEW to TransplantBuddies forum or Click on Heart-lung forum and share there.
I will make sure that others see your message. Please write back this way more people will respond to you. mutual feedback brings in many messages here.
I wish you the best. Remember this, you are young and you will get through this.
Stick with us
Best regards
Rise'
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nana
Member
Username: Nana
Post Number: 44
Registered: 12-2008
| | Posted on Monday, October 25, 2010 - 10:02 am: |
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Hi Sean I waited for a kidney for eight years and a half and have had my kidney know for 11 years and hope in January, it will be twelve and the way I handled my self mentally at an age of twenty two when I got sick and it shock me because I was a working in a beauty shop making lots and lots of money until my health fail all at one time till I could not work. I did not have family support so I continued to learn how to encourage myself and stay busy and stay in church and around my church family. I had to find strength within myself. It is not easy but you have to be tough and be strong because alot of people dont understand us and sometimes, I dont understant myself either so that is why these support groups helps and it helps me to know that I am not by myself. Find all the support groups you can. I love reading the stories on this site.
| To my donor, may God bless your soul |
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tommybass 2.0
Member
Username: Tommybass
Post Number: 1
Registered: 10-2010
| | Posted on Monday, October 25, 2010 - 01:35 pm: |
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Sean,
My name is Tom and I had Dilated Cardiomyopathy for 17 1/2 years(1993). I received a Heart Transplant @ Cedars-Sinai Medical Center on September 5, 2010. It was a long road. I was able to get through it by maintaining a positive attitude, trust in God that he had a plan for me, and diligently following the advice of a brilliant team of Doctors and their associates and staff. I also have an incredibly supportive family and circle of dear friends who helped me along they way. You are not in this alone. Hopefully the LVAD will keep you healthy until you get listed, and ultimately get your new heart. This is a great support site and it's good that you found it.
Stay positive and good luck!
Tom
Tom (tommybass 2.0)
Heart Tx 9/5/10 @ Cedars Sinai
ICD 12/06
Idiopathic (viral?) Dilated Cardiomyopathy 1/93 |
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Hostess Meagan
Forum Leader
Username: Newheart14
Post Number: 1435
Registered: 01-2009
| | Posted on Monday, October 25, 2010 - 01:43 pm: |
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Hi Sean,
Welcome to Transplant Buddies. I am also Canadian, living in Ontario. I received a heart and liver on Valentine's Day, 2008. I did not have a VAD but I got severe congestive heart failure. I have some websites for you to check out that will give you a bit of an idea of how to prepare for transplant:
http://www.healthytransplant.com/health_maintenance/prep_heart.aspx
This site contains information on how to maintain good physical and mental health:
http://www.healthytransplant.com/health_maintenance/preparing_for_transplant.aspx
One thing I might mention, in Canada when you get on the list, the transplant team will give you a list of your potential medications and you will have to contact your insurance company to see if they are covered, particularly valcyte (valganciclovor), but not to worry your insurance is probably like mine and will cover everything.
You will probably be given a pager, but they will call your land line first, then try you on your cell phone first, then the pager.
I am sorry you are going through all of this at such a young age. But I know you will do fine and feel amazing when you get your new heart.
I hope you continue to post any questions you have. If I can remember or anything else, or find further info on the web, I will post it here for you.
All the best to you,
Meagan
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF
- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan
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Hostess Meagan
Forum Leader
Username: Newheart14
Post Number: 1436
Registered: 01-2009
| | Posted on Monday, October 25, 2010 - 01:49 pm: |
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Hi Tommybass,
Welcome to Buddies. I am so glad you joined us.
Congratulations on your brand new heart and bless your donor and their family.
Your history sounds like mine. I had idiopathic dilated cardiomyopathy since 1991, then CHF, and received my heart (and they threw in a liver also) on Valentine's Day, 2008.
You may want to introduce yourself on our New To Transplant Buddies forum where many people will welcome you.
I hope you and your new heart are doing well.
Take care,
Meagan
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF
- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan
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Jack R
Member
Username: Jack_r
Post Number: 51
Registered: 08-2010
| | Posted on Monday, October 25, 2010 - 02:02 pm: |
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Hello Sean. I am a heart xplant but a lot older then you therefore I had already contended with my mortality. The reason I mention that is given your youth, vitality, etc., it is a shock to be in this position. I had a lot of years to prepare given a heart attack and 5 way by-pass operation in 1993. I knew what lie ahead and, after 4 years on the waiting list, I received my Heart Transplant 6 years ago this month.
For your consideration:
- savor the opportunity that you have a second chance
-accept the fact that very few people have any concept of what you are dealing with and that some may even avoid the issue or you (their problem not yours)
- this isn't just about you for this journey concerns yourself, family (caregivers) perhaps a girlfriend, relatives, your staff at the Transplant Center, and a Donor and their family.
-Always keep that in mind KNOWLEDGE IS POWER - use the internet as a search engine
-explore this site thoroughly
- ask questions, write them down in advance of appointments - if the ? is not answered to your satisfaction ask it again - also your parents etc., will have a lot of ?'s - it is ok to have a parent or loved one in the room with you during general appointments
- understand the process - in my case I was on the OR table for 10 hours (unusually long) but up walking within 18 hours, discharged from Johns Hopkins within 13 days.
-accept that you are trading one set of medical problems that have no good ending for medical issues(post transplant) that are very manageable and you will ALWAYS have a medical realtionship with your Transplant Support Team.
- your going to have, post-transplant, an interesting first year and we ALL get through it - steroids are a real trip
- You have a Heart Transplant Recipient from Canada who currently participates in World WideTriathalons - regretfully his name escapes me - I just, for my age group, participated in several events at the U.S. Transplant games and Canada has their own games.
- REMEMBER THIS - young Heart and Lung Transplants, because of this experience, tend to think they are immortal and:
-can't resist the peer pressure to do things or go places (Rave clubs etc.,) they shouldn't do
-you MUST take your medications on a REGULAR basis and IT IS especially so with the (post transplant) Immune Suppression Drugs
-Accept the fact it is ok to be scared and the only "dumb question" is the one not asked
- on weekends explore the CHAT room for we have several Heart Transplants present
- find out if your Providence has a Organ Procurment Agency and contact them to join their meetings.
- tell your parents you love them and you and they will get through this
- explore the Library about the Immune Drugs, steroid etc.,
- check out United National Organ System (in the U.S) www.UNOS.com for statistics or if Canada has a similar system.
Sean your already ahead of the game - your on a waiting list and found this site. I believe you will do and be fine.
any ?'s please reach out to me or the site itself.
Have a good day.
On behalf of the Heart Transplants on this site We expect to hear from you. |
Jack R
Member
Username: Jack_r
Post Number: 53
Registered: 08-2010
| | Posted on Monday, October 25, 2010 - 06:41 pm: |
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Sean, I had one other practical consideration. This journey is best traveled by those who want to participate in their care for it allows some control. those who sit in the front of the bus wanting to know who, when, what, when, and even why do much better then those who want to go along for the ride. |
Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4970
Registered: 07-2007
| | Posted on Monday, October 25, 2010 - 09:41 pm: |
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Sean:
Welcome to Transplant Buddies. My goodness you have been through a lot in your young years. I can understand why this is the last thing that you expected to happen to you. I remember thinking the very same thing when I was told at age 40 that I would need new lungs. I was a lot older than you, but found it just as unbelievable.
You have found a wonderful place here at Transplant Buddies to get all your questions answered, make friends, and get support while you wait for your new heart. Please feel free to ask any question that you may have. Someone on here will be able to answer it for you.
I like what Tom said about keeping a positive attitude and trusting that God has a plan for you. Just remember that you are not alone in this journey.
I hope you continue to visit. We look forward to getting to know you.
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4974
Registered: 07-2007
| | Posted on Monday, October 25, 2010 - 10:00 pm: |
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Tom:
Welcome to Transplant Buddies!! Congratulations on your new heart! That is fantastic. I wish you the best recovery. You deserve it.
You gave Sean great advice. Thanks for jumping in there even when you are still in recovery mode yourself.
I hope you continue to visit. We look forward to getting to know you.
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Allie
Member
Username: Alliebuggy88
Post Number: 9
Registered: 06-2010
| | Posted on Saturday, October 30, 2010 - 02:40 am: |
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Hi Sean,
I am 22 years old and I just got a heart transplant 11 months ago. The surgery was not as bad as I thought it was going to be. The journey has not really been that bad as long as you keep a positive out look. There are a lot of things you have to manage, such as medications, appointments, and taking your vitals, but you get used to it and after a few days it all becomes a routiene. If you have any questions don't hesitate to email me privately.
Allie |
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