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Have You Considered Multiple Listing?
Have you been listed for a long time and concerned about your health worsening? It is possible to list with more than one transplant center which could increase your odds of being transplanted sooner.
My son was listed for a heart and double lung transplant at one transplant center but as we approached almost a year of waiting there was concern about his worsening health. It was recommended that we consider double listing him. The only problem was the 2nd center in which he was going to register could only do a lung transplant, but we were desperate so we started the evaluation process.
Luckily just when he was about to be double listed he received the call at his primary transplant center and he received both a heart and double lung transplant.
Are you double listed or has your doctor discussed this with you? Share your experience with us.
Here is an article that you might find helpful regarding multiple listing.
https://transplantliving.org/before-the-transplant/waiting-for-your-transplant/multiple-listing/
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17 Replies
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Well I missed my chance to be out on a double lung transplant list because of my BMI. It’s just an antiquated way of generically saying how obese a person is without considering 140 lbs on one 5’1” frame isn’t the same as another , but I need to lose weight I have been screaming for help. No one wants to address the whole person because diet is just as important as medicine.
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Ally,
you’re so right ! Diet really is just as important as medicine and our food is similar to the medicines we put into our body because some nutrients really have great healing potential. Have you talked with your team about your willingness to reach out for help for this? They could possibly give you some type of referral to a dietitian or nutritionist. I feel like this would be a good next step for you. Maybe they know of someone who has worked with cardio/pulmonary cases before !
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Yes and my sister and aunt are overweight too. So we are gonna do it together I just contacted my doctor about a diet plan for my condition and possibly cardiac and pulmonary rehabilitation
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I was told by 2 of my physicians that I am not a good candidate for transplant due to age, other health issues and weight. I felt that my old was the biggest issue, next to my weight. I had had issues with sedation and I have evaluated lap band surgery, but I am not comfortable with just this surgery when I have 2 abdominal
Hernias that have troubled me for years. -
@ally1567 and @jimi, I am so sorry that you are both ineligible for transplant. There is a bit of guilt that me and my family feels knowing that so many aren’t given that chance.
I understand the weight issue. Jimi, my husband has considered lap band or other weight loss surgery but is more concerned about the risk involved so he hasn’t proceeded.
I just want to mention that PH and or heart failure, can also cause major water retention and I hope your doctors also keep this in consideration. It can make losing weight that much more challenging. Definitely do as Brittany suggested and ask if there are specialists and resources that your doctor’s can offer to help.
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I have had consultations with 3 different bariatric surgeons and weight
Centers, none seem to be concerned with my hernias, my kidney issues and the protein restrictions. My pulmonologist and cardiologist have committed to being there during the procedure. From family and close associates it is critical to use protein supplements and a specific diet.Being told that I was not eligible for a transplant was the 2nd death penalty, but I understand the success is tied to a younger healthier patient, our society feels that people in their late 60’s and older have lived a full life and need to make room for younger people. I am truly happy for anyone that is eligible to prolong their life and to reach their full potential. I resolved to live whatever time I have left to its fullest
I have had conversations with all my care providers, concerning the effect of all these meds on CHF, BP and resulting BMI, 2 are of the opinion the weight is the major obstacle to improving my health, though I only eat 1-2 small meals a day and exercise as much as possible, until I cannot breathe.
Cannot breathe
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Jimi,
I am sorry that you have these limits in the way of getting a transplant. That must have been really hard to hear. Especially because it really seems like you are doing all your absolutely can for your health and making yourself as good as possible. What are the doctors saying about what may be getting in the way of your weight loss? Do you also work with a dietitian? I feel like I may have asked you about this before but it is important to have dietitians as part of anyone’s treatment team, in my opinion. They are such a crucial part !
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I know right I can lose as much as 30 lbs overnight and also gain 30 or more its water retention my stomach looks like I am 9 months pregnant but I have no weight anywhere else my legs are slim my arms too. I am overweight but not as much as my weight on the scale suggests
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Ally,
UGHHH The darn scale is such a battle! I HATE weighing myself. I get really frustrated and the number on the scale can be very deceiving. At my highest weight, I was extremely athletic built and very muscular due to playing multiple sports at one time. I could keep up well with everyone else and it was admittedly probably the best shape I was ever in. But, according to the scale and the BMI chart I was borderline overweight. I really struggled with weight loss for awhile and lost too much weight too quickly and feel it in my energy levels etc. I wish doctors took other things into account other than the number on the scale like actual body ratios of muscle/ fat/ etc. This makes a huge difference, especially for women.
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Also don’t feel guilty your son is young and has his whole life ahead of him he deserves being ok and healthy. I really don’t want a transplant because to me there are less drastic measures they can take and stem cells could possibly be the cure for us all.
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I know Brittany so you were athletic too? I have always been an active person and love the outdoors and hiking, camping flea marketing and I miss it soo much and I am sure you do. I have never been thin I have always been muscular and short lol but I have never weighed this much even pregnant. It’s from being a very active person to total lethargy and struggling to let my dogs in and out of the house and struggling to make it down the hallway to the bathroom.
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I feel like I really would enjoy hiking when I am able to (if I am ever able to) But yes, I was really athletic through my teen years up until about 21. I was always playing sports . Mostly hockey and soccer and I had a completely different build than I do now. Now I am 100 lbs with fluid retention and mostly just fluid weight and not actual calorie weight. It is hard to have things like that just leave your life and feel like you can’t do much. Is there any activity that you are comfortable with doing?
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I love to do arts and crafts so I make fairy houses out of polymer clay and I love it
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Oh I love that you do that Ally! Do you have a link so we can see some of the fairy houses that you have made? Do you paint them too?
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Yes I do I will see if I can post some pics on my profile
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I made an album on my profile and I think it downloaded
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So awesome that you do this Ally!! Do you sell them too and have an online business or anything? This is such an awesome hobby and so unique. It seems like you find so much joy in doing that !
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