It always makes me feel a little weird when I go to my doctor and I am the one asking for specific tests and for exactly what I need. But after living in this body for 39 yrs and dealing with it’s “issues”, I’m starting to get the hang of it. For the past few weeks I have been more tired than usual. I’ve been more short of breath and my heart started to feel like it was working over time. At first I just attributed it to the traveling I was doing. Maybe I over did myself, ate too many tacos or putting my body through hell in higher altitudes from my trip to NM. But after nearly two weeks of being home and not getting better, it hit me…maybe I’m low on iron again! So yesterday I went in to see my doc and asked her to run some labs. More specifically, I wanted to check my ferritin level. Normal is between 12-150. Mine was 34. Yes, I know, that is within the normal range. However, when you also account for my other health issues, pulmonary htn and HF, that’s pretty low! My heart has a hard time pumping 02 as it is, and My UW doc wants my ferritin to be around 100. So here I sit this afternoon, getting an iron infusion. I pat myself on the back today, for being my own advocate. I am also grateful I have a Dr who listens to me and trusts me as well. We have to speak up for ourselves as patients. If you feel something is wrong you need to listen to what your body is saying! If you feel your Dr isn’t listening, get a second opinion!
I am back from NM where I spent two weeks with family. I had a great time visiting family but sorry I wasn’t able to see some. As expected, the higher elevation there kicked my ass. My body felt heavier, I retained more water which made it look like I was pregnant, I felt like I was walking under water, slower and weighted down. Normally it feels like I am breathing through a regular straw, but that straw turned into one of those skinny bar straws with the thinner air. My oxygen saturation would drop into the low 70’s if I took off my 02 for any reason. My heart raced and I had more palpitations. I was exhausted from my body trying to work so hard to get oxygen! Much of the vacation was spent sitting and chatting with people and resting as much as I could. It was nice spending quality time with everyone like watching the birds with my Grandpa, doing a puzzle with my Mom, visiting with my dad and step mom, and eating all the yummy green chile that I could!
While I was gone, I did receive the final word from UCSD regarding lung transplant. The specialists there turned me down. They felt my case was too complicated and that a lung transplant would be too risky. I was certain this would be the case but did not want to discuss it until I had their final answer. The transplant team was absolutely amazing! When we met with Dr. Yung he explained why my case was so complicated. This was crucial for me as the other three places I was referred to just sent me a letter. UCSD wanted to take the time to review not only my records but to meet me in person before making a decision. Dr. Yung felt that was the least they could do for such a big decision. He said that I would make a good candidate for transplant based on my social supports, my intelligence and the fact that I was a former medical social worker. However, he said, that because of my body structure, radiation damage (scar tissue) and potential complications, they cannot in good faith do the surgery. About the “body structure”….along with radiation damage, I also have scoliosis. This was partially fixed with a spinal fusion I had done when I was 14. However, I still have some curvature in which my spine is compressing one of my lungs so that it can not fully inflate. Dr. Yung said that even if they could get a new lung in that space, it is doubtful that do any good because the new lung would still not be able to inflate properly. He also said that if the surgery took more than 9 hours to get my old asshole lungs out, the new baby non-asshole lungs would be dead. That would be no bueno! Then there is the whole, no guarantee the transplant would take and I would risk rejection. Also, I would be trading in one chronic illness for another, taking anti-rejection meds that cause kidney damage and put me at high risk for skin cancer, so I would have to stay out of the sun! If you know me, that is just NOT gonna happen. I LOVE the sunshine. In the end, Dr. Yung said he feels that medication for my pulmonary hypertention would be the best for me at this point to help maximize my lungs and life span.
I am sorry if this makes you sad reading this. I hope it doesn’t. I am not sad about it. Actually, I was relieved. I finally knew why I was being “rejected”. I now have an answer for anyone who wants to know if I can get a lung transplant. No, no I cannot. Honestly, I never wanted one. I felt I had to go through this to feel comfortable saying no. It’s complicated to explain but in essence, I was only willing to consider a transplant for others. And in the end, I found only one good reason to have one and that was for my son. I wanted to be sure that I had exhausted all options to be here for him as long as I can. HE was the only reason I would have gone through the surgery and that is difficult to say to people, difficult to say to people I love and who love me.
So what’s next? Well, I will continue to go see Dr. Leary at the UW for my pulmonary hypertension. I see him again in August and hopefully we can get started on another medication to help me breathe better. I will continue to see my Cardiologist Dr. Everett to monitor my heart. I will take care of myself and continue to seek out alternative therapies to combat my symptoms. But in all actuality, I am just gonna keep living and enjoying life! I will continue to travel as much as I can, while I can! I am sure as my disease progresses that may get more difficult. I will go to every concert I want to, spend time with my family, and be a fully present mother for my son!
Please share my story if you think it would help anyone. Thanks to all the readers, friends and people who reach out to me, it helps keep me going! I like hearing from all of you! And if you could share my gofundme. I am so ever grateful to those who have donated because it has made a huge impact on our lives and not worry about how we are going to pay our bills and health costs! I love you all!