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What next?

I'm a 68 y/o male and have had COPD for a few years. I had an exacerbation in 2018 that cleared up very well. That's when I quit smoking. I had an exacerbation (I thought) after cleaning out my garage this past July and now cannot get over it. Spent 3 days in the hospital getting stabilized. I now find myself on oxygen 3 lpm. I was found to have severe pulmonary hypertension so, after evaluation, I was rejected for Zephyr valves and told I needed a transplant.

Was just rejected for a transplant because I only have 80% of one kidney left after Renal Cell Carcinoma and it has only 35-40% filtration rate and, in order to get a transplant, I must have at least 60% filtration because the anti-rejection drugs damage your kidneys by at least 40-60%. So I was rejected for lung(s) transplant.

Now what? Just this last week I experienced a setback that I cannot explain -- I had been doing at least 15 minutes on my treadmill every day with my O2 Saturation going no lower than 91%. On Saturday, I was fine and did my treadmill. On Sunday, my O2 Sat dropped down to 77 just going upstairs to the treadmill. Once I recovered and got on the treadmill, I could only do 3 minutes before dropping to 87 O2 Sat.

It continues to be this way now. I can maintain 98-99 O2 Sat sitting at my desk or in my recliner but, as soon as I get up and start moving (with 3 lpm in my cannula), my O2 Sat drops like a rock. I walk through 2 rooms and I'm at the mid 80s in O2 Sat. Again, this bad situation came on suddenly.

My pulmonologist just tells me to go to the emergency room if I go below 85 O2 Sat. I do that all the time and cannot spend that much time in the ER. The Dr. who evaluated me for the lung transplant said he thinks it may be more hypertension related than COPD. I tend to agree.

What do you think?

  1. Hi. Thank you for sharing your personal experience with COPD with us. I am sorry that you are having to deal with all of this. It does sound like you have been doing all the right things to manage your condition. I am wondering if perhaps you might benefit from seeing a second pulmonologist, who may have other ideas to help you manage your COPD and pulmonary hypertension. Has your current physician mentioned any of the newer treatments for pulmonary hypertension? Some of these newer treatments are mentioned in this outside link from the Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/diagnosis-treatment/drc-20350702#:~:text=A%20commonly%20prescribed%20vasodilator%20for,on%20the%20belt%20or%20shoulder.) I do know that there are some options out there. Perhaps this may be something worth discussing with your pulmonologist. What do you think? Wishing you all the best. John. copd.net community moderator

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