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I was diagnosed with Idiopathic Pulmonary Arterial Hypertension(PAH) in June of 2014. PAH is a life threatening disease which causes the tiny arteries and capillaries in my lungs to become narrowed, blocked, and destroyed. I have since been placed on two oral medications and a 24 hour IV medication with the hope that the medications would slow down the progression of the disease. Unfortunately, I have not improved and have slowly worsened over time. My doctors decided it was time to explore transplantation as my best chance for survival.
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Transplanted!
I wanted to try and give an update myself, typing takes me forever so I put it off. Anyways, I am re learning how to eat food, most things make me sick. I mostly stick to soups and things like that for now. Even my precious DR Pepper makes me sick right now :( The surgery took a lot out of me so Im pretty weak right now and need lots of help. My phone feels like a brick lol. I'm moving around more and more on my own, which is fantastic. Every day a little progress is made. I have lots and lots of doctor appointments, the hospital is my second home for now. I go to Pulmonary rehab to help get my strength back. It is really hard work, but I need to do it so I can play with Ben. I just plug along the best I can. Sometimes I get frustrated, which is totally expected, but I also am happy and hopeful. Progress will be slow, but as long as I move forward, that is all that matters. Slow and steady wins the race.
I am officially on the transplant list as of March 20th. I have already had a couple of offers and one dry run. I waited in the hospital for 24 hours and as I was waiting in pre op, the transplant fell through. The donor lungs simply would not function properly. My surgeon said I would have been in the hospital for weeks on a ventilator and could have had many more complications. I am very much ok with the fact that it fell through. I knew that it was a possibility and mentally prepared myself. I need to have a really good set of lungs. After waiting for 24 hours, I was ready to find out either way. It was a relief to get any answer. I hadn't eaten anything in 27 hours and so I was starving and just ready to stuff my face. I think I was 10 minutes away from having visions of my husband as a juicy hamburger. One day I will get another call and hopefully next time they will be the best lungs for me.
Before I got listed I was able to take my family to Disneyland. We really needed a vacation to emotionally recharge and refresh. It was wonderful to just forget about everything for a week and just enjoy time together and have a blast. It helped me and my husband feel much more ready to be on the transplant list. I can't wait to put a photo album together.
It looks like I will be placed on the list right around the 20th of March. They are letting me cross a very important item off my bucket list before I go on the transplant list. It is something I already had planned before I knew I would need a transplant. I am stable enough to go ahead with my plans. It is a little scary to know I will be on the list, and there is nothing wrong with feeling that way. It is also a happy thing as well. There's always a whirlwind of different emotions in situations such as this. I don't believe in only acknowledging the positive emotions. Being mentally healthy means acknowledging all emotions and then releasing them. This is a high stress and emotional time so that is why I focus so much on my mental health. I really am trying to keep myself mentally on the straight and narrow so that I can cope with the surprises that are sure to pop up. I just need to get a couple signatures from my eye doctor etc saying that there are no issues preventing transplant. I have started a blog on wordpress.com to sort of tell my story and talk about the different issues involved in Pulmonary Arterial Hypertension as well as transplant. I'm not really one for writing blogs, but I feel like it could be an important tool to help people learn to have compassion and maybe even help someone like me. It really could help my son know me when he is older.
Last week I met one of the lung transplant surgeons. He seems like a really good person and a really good surgeon. He explained what the surgery would be like and how long I could possibly be in the hospital afterwards. It is a complicated and tough operation, but I am completely confident in the abilities of my surgeon and my other transplant physicians.
I hope to get to know the members of my transplant team better, and I really want them to know and understand me. I think right now that they have a lot to learn about me as a person, and vice versa. It can be frustrating when a patient does not feel understood. Time will fix that issue though.
Right now I am not scared about the surgery. However, I am very aware that I will have times of fear especially when the actual transplant time arrives. There is nothing wrong with being scared. In fact it takes a measure of bravery to admit fear. I know myself well enough to know that I will make it through. I just have to ride out the ups and downs of all the waves. I will cry when I need to cry, and I will laugh when I need to laugh.
In order to properly cope with all the stress, I try to just focus on the here and now. I say try because sometimes it is hard, and I am only human. I have to try to only worry about what I can control in the moment.
There are so many different aspects of receiving a transplant that it all can cause serious brain overload. I have done the best I can to get the proper answers to my questions so that I can have peace of mind and make the best decisions possible for me and my family. I have to have a certain measure of faith; faith that any issues that will inevitably pop up will be resolved. Most of all I have faith in me, and faith in my family to make it through.
I mention my family because they are sacrificing so much to help me get this transplant. It is my family that will have to pause their lives to care for me and drive me to doctor appointments until I am able. It is my family that will help me raise my son until I am healthy enough to do it on my own again. I wish I could accurately describe all their sacrifices. Maybe in future posts.
When times get tough I will just look at my son and remember why I am doing this. A mother will do anything to be with her children for as long as possible. I need my son and he needs me.
1-8-17
I have one more 24 hour test to undergo and a visit with the transplant surgeon. Both will be completed this month. After that my transplant team will get together and decide when I should get put on the list. It sounds like it will be sooner rather than later. However, I have learned that it is impossible to predict what my doctors and transplant team are thinking. I just know that it is coming and that I have to do this to ge with my son and husband.
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A S, Mestre em Fachada em ACM, São Paulo - SP
A S, Mestre em Fachada em ACM, São Paulo - SP
adriano santos
Love you, cousin!! Here's to new lungs and more adventures.
Aliese
Hoping the very best for you and your family. Be strong.
Erica M
Sheila.my name is Barbara I am 14 months post dble lungtransplant .I was transplanted at the u of u .there great surgeons. Your in great hands
Barbara mowrey
Hugs, my friend! ❤❤
Aubrey Taylor
Sheila- you don't know me, but I also have an extremely rare lung disease. I am not at the point of transplant yet, but it is a possiblility in the future. Are you listed at the UofU? I know a few doctors on the transplant team up there and LOVE them. I know that they care about their patients so much and want what is best for you. I hope all goes well.
Bailey Seay
Love you Bela
KT Hatch
I got your back... xoxo
Alicia
You are one of my favorite people in the world and I love you more than you could ever know. Get some new lungs and stick around for a super long time. We have a lot more adventures to go on. You know I'll always help you in any way I can. You are the coolest!
Jennifer Kay
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In honor of Sheila Hall
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100 Matsonford Road
Radnor, PA 19087
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