March 16, 2019 at 8:47 am #17781Edna L WilliamsParticipant
Wow, thank you so much for this. I often see people with this disease struggle to gain weight, any very rarely do you hear from someone that struggles from the other end. From the very beginning even before being diagnosed with NISP I was told that my breathing issues were due to my weight. That was news that I didn’t agree with because I was so active, and felt healthy, I was never a thin person but I felt healthy. I worked all day long in a very busy dialysis clinic that kept me moving all day, went for walks on my breaks with co workers, did squats every morning, and continued this until I couldn’t. It seems like once I was diagnosed and started treatment of Cellcept, Prednisone, and oxygen. Things progressed pretty fast just after one year. I can no longer do squats, when I walk it is so slow to keep my heart rate down, and any exertion at all my stats drop low so fast that it scares me to do too much activity while I’m alone. Not to mention the weight gain from the prednisone. I’ve gained about 40 pounds in a years time. A couple of months ago I experienced a flare up, that resulted in my oxygen to be raised to 6 litters and my medication dosage went up as well. During my follow up appointment at the Mayo clinic I learned that my lung function had declined. When going over everything with the pulmonologist he let me know that transplant was not an option because my bmi is at 35 and I need to be 30 or below. He said that it was a very serious surgery and when your overweight you just don’t do well after surgery. That was such a wake-up call for me. Since then I’ve put myself in a twelve hundred calorie low carb diet. The only weight loss I’ve had is five pounds, but I’m struggling with my activity level. I have stairs to get into my house, and they wear me out now and it’s not just out of breath, I get the chest tightness and my head feels like it’s under water. I get this same feeling when ever I do anything over a slow stroll, I even have a hard time getting up from the toilet. My health is very important to me and I’m willing do do whatever I have to for life I’m only thirty six and I have a husband and two children I want to be around for. Thank you for showing me that this too can be achieved with a plan and determination.
March 16, 2019 at 9:07 am #17784Charlene MarshallKeymaster
Thank you so much for your reply and sharing a bit of your story with us! I know @mark-koziol will be happy to hear from you as well, and I am very thankful he posted this content on our site. Connect with him maybe for some additional ideas on how he went about the weight loss, I know it isn’t easy, especially for those of us still on oxygen. We’re here to help if we can though! Mark, do you have any additional tips or encouragement for Edna? 🙂
March 16, 2019 at 10:02 am #17786Mark KoziolParticipant
@williamsedna82 Hello Edna, thank you for reading and commenting on the article. It sounds like you are on the right track with the reduction in calorie intake. I however really didn’t reduce calories. I probably ended up eating more. I ate 5-6 mini meals a day and some of those meals were trail mix, nuts, yogurt, etc. most were nutritious and I tried to stay away from starchy carbs and sweets. I was far from perfect in my approach but I did get the job done. I had some mishaps where I would overeat or eat so called foods that were bad for you. Edna yiu do not have far to go to reach your BMI goal. Please do not get discouraged. You can do this. On the exercise part; I did all my exercises while sitting down or in a standing position. I trained every part of my body but focused on my legs and so glad I did. You will need the strength after surgery. If you have any questions, please message me. Thanks and stay strong!
March 16, 2019 at 5:05 pm #17809Edna L WilliamsParticipant
- @mark-koziol Thanks for all the encouragement it means that much more when its coming form people that know exactly what your going through. Im going to make sure to keep your tips in mind, especially the strength training a lot of which I can do sitting &standing. The support and positive feedback is greatly appreciated.
- This reply was modified 2 years, 8 months ago by Charlene Marshall. Reason: tagging
March 19, 2019 at 10:32 am #17845NikchronParticipant
Hi Edna, I have been dealing with similar issues. What help me greatly was getting O2 equipment to supply 10Lpm around the house while taking care of business. At pulmonary rehab I use 15 Lpm when on treadmill and recumbent bike. I have spiraled down the last three years, was tough just going to the bathroom. Stairs were out of the question. Eliminate sugar and salt from your diet, they are toxic. Apply and do what the transplant doctors recommend even if you don’t qualify for transplantation. Diet and exercise are usually the main focal points. We are in this together!
March 19, 2019 at 7:39 pm #17860Charlene MarshallKeymaster
Such a wonderful and helpful reply @nikchron, thank you for taking the time to message Edna! You’re completely right about the importance of eliminating (or significantly limiting) salt and sugar. I think people often forget about this important step, and it can be hard for folks who are used to consuming a lot of sugar in things they may not even be aware of, including natural sugars. As an example, I know bananas are a fruit and generally considered healthy for us, especially in comparison to other foods, but I couldn’t believe how much sugar and carbs are in just 1 banana. I know people who have dropped weight really quickly just eliminating carbs and sugar from their diets. Not saying it works for everyone, just agreeing with you that eliminating salt and sugar is an important step we often forget about. Thanks again for your thoughtful reply!
April 7, 2020 at 3:00 pm #17675Mark KoziolParticipant
There are certain criteria lung transplant candidates must meet; candidates must meet a weight requirement to qualify for a lung transplant. Many potential recipients are either overweight or underweight. In my case; I was 80 pounds overweight. When it was time to be evaluated for transplantation, I had made the decision I was going do everything in my power to remain on this earth. Guidelines were given by the transplant team in a stern but positive tone. My body mass index (BMI) had to be below 30 and would put my weight at 230 pounds.
I knew what I needed to do and how I was going to approach my goal, losing 80 pounds. In a column written by me in the Pulmonary Fibrosis News; I wrote about how my body changed throughout my idiopathic pulmonary fibrosis journey and subsequent transplant. In the column, I pondered whether my heart beating at an aerobic training heart rate for fat burning when I stood up from a sitting position helped me lose weight? In the following bullets I have listed the plan I used to facilitate my weight loss.
- Ate 5-6 mini meals a day.
- Meals were high in protein and a medium amount of carbohydrates.
- Tried to stay as active as possible; went to work, went to pulmonary rehab phase 2 and phase 3, cooked, and helped my wife around the house as much as possible.
- I could not walk more than a short distance; all of my rehab consisted of me in a sitting or stationary standing position. At exertion, I was using 8 liters of oxygen.
- I lifted weights and rode the recumbent bike; I concentrated mostly on my legs, I knew atrophy would set in the first several days therefore a strong base was necessary. Building muscle also provides more oxygen to your body.
I had a simple yet productive plan; I didn’t overthink the process. It took me 10 months to lose the weight and I currently weigh 250 pounds. I wish I was as diligent now with my eating habits as I was before. In my opinion losing weight is 80% diet and 20% exercise. I was transplanted on December 4, 2015, and I will be forever grateful to my donor and their family for the gift of life I have received.
Has any forum member had to lose or gain weight in order to qualify for a lung transplant? If so, can you share what you did in order to qualify?
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