Breath

I never realized how precious my ability to breathe was until I was not able to catch my breath, walk 10 feet, sleep without sitting straight up or pick up Adelaide. I thought about it sometimes but breathing really is an automatic process, something I did not think about as I did it, something that just comes naturally, something that is an essential part of being alive.

When I was pregnant with Adelaide I had a hard time breathing. We did not know at the time that I was suffering from Congestive Heart Failure. Matt and I just assumed that was how I was supposed to feel. Then after the birth I had episodes. "Too much fluid on board" is what I thought, take some more diuretics is what my doctor told me. It usually went away. I dealt with it the best that I could, but it usually did not last for more than a day or two.

Well fast forward three years and backtrack about 4 months from now. For almost 4 months I have been sleeping sitting up, not able to walk, not able to go to the grocery store. I am not much for Walmart, but was grateful to be shopping there one evening as they had electric carts that I could ride in. People stare. I do not look like I should need an electric cart.

I have spent the last 4 months in and out of the hospital, emergency room and doctor's offices. Kidney failure, heart failure, multiple rounds of antibiotics, blood work until my veins were collapsing, right & left heart catheterizations followed by 22 hours of not being able to move a muscle (that was close to being in hell), a right heart cath through my neck veins that did not stop bleeding for 4 days, by the time they got it to stop, my skin around 1/2 my neck was peeled off and raw from the bandages, a bronchoscopy, many ct scans, and during that whole time I could not breathe. What is it?? The doctor's as they say are "practicing" medicine. Now I really can not complain, as I do have an excellent team of doctor's that are working with me. My life is in their hands and I do trust the team I have. However it is a process of elimination with me. The radiation has taken such a toll, that it seems that every problem I have is "very unique".

So finally the last week has been filled with blessed good news!! I am starting to get some answers. Not necessarily answers that I want to hear, but answers none the less. At least with answers, I can work at finding a way to live with the problems.

So here is some of the good news, the answers and the things I can do to work with what I have been dealt.

#1 - After a very odd sleep study, I felt like I should be in a sci-fi flick with all the electrodes and wired they had connected to me, they determined that I do not have sleep apnea!! Yes!! Finally a doctor's visit where they do not give me another diagnoses! Anyhow, if I had sleep apnea, I would have had to wear that horrible mask they give to people. I have enough trouble sleeping as it is. It also would have put a strike against me as far as being eligible for a heart transplant. So again.. YES!! Good news!!

#2 - Sleep study determination, I do need the oxygen that I have been wearing at night. This is most likely due to the lung and heart problems that I have. Right now I am on 2Liters and I will be doing an at home study next week to see if I need 3Liters. I am glad I only need this at night.

#3 - I am a candidate for a heart transplant. No, I am not on the list. However, for a while I was not sure if it would even be an option. Well, YES it is!!!

#4 - I do just about everything I can do to control my conditions. As the doctors and nurses at the hospital said "I am the best eyes and ears they have ever had on this floor". I am a very knowledgeable, compliant patient. I take my medications. I know what they are for. I do my research. I listen. I ask questions. I participate in my care. I (and my family) cook the majority of my food from scratch with only naturally occurring sodium. We even grow most of our own food. The one thing I can do to help myself get better and be eligible for a heart transplant is to lose some weight. I must lose 27 pounds to be considered for the transplant list. I would like to lose more, but I am going to set my sites on the first 27. So

GOOD NEWS!!! I lost 7 of those 27 pounds!!! So now only 20 more to go!!!! YAY!!! GOOD NEWS

#5 - Chyloptysis. A very, very rare condition. Actually only about 12 cases in the literature. It is a condition often caused by radiation or lymphoma's (the kind of cancer I did have was a lymphoma). It is where there is an abnormal communication between the lymph system and the lungs. This can be caused by a big hole, a fissure or a thin area where lymph fluid is allowed to go into the lungs. So fat or chyle is pushed from my lymph system into my lungs, causing what often appears to be a fluid build-up, but is actually a backflow of chyle (fat) from the lymph fluid. This can be exacerbated by my heart failure and the fact that both the pressures in my lungs and heart are much too high. So the chyle then is in my lungs, which makes it very, very hard to breath. It solidifies in the bronchial tubes and comes out as sputum in the shape of worms or trees. It is actually pretty cool to see these things I cough up as they are exact replicas of my bronchial airways.

So the fact that I have this, well, it sucks. I thought as a teenager that I wanted to be "unique", well to hell with "unique". I want to be healthy. But since I am stuck with this body that God gave me I am trying to make the best of it. So I have chyloptysis. Adelaide is really into dinosaurs right now. I think it sounds like some prehistoric animal.

I have some more tests to do to work this issue out. Bloodwork tomorrow and lymphangiogram sometime in the future. It is not scheduled because it is such a rare test that they have to figure out how they are going to do it on me, again, tired of being unique.

Good news with this diagnoses is they do have some different treatments that we (my doctors and I) are "playing" around with. First is a nebulizer treatment that I do for about 1/2 hour morning and night. Good news again!! The nebulizer treatment is seeming to work.

I CAN BREATHE!!!!! I CAN BREATHE!!!! I CAN BREATHE!!!!

It is not just the nebulizer treatment though. I also have to stay a little dryer than my cardiologist would like, which puts stress on my kidneys. I have already had kidney failure 3 times in my life, so I really have to watch this. I also have to eat a low fat diet and possibly go on a no fat diet with a liquid fat supplement. The type of fat they would supplement with does not get broken down through the lymph system. I honestly do not know if I can be a compliant patient as far as a no-fat diet....but I will work on eating even lower fat then I already do.

The good news is still that whatever I have to do, for today, for this moment, I CAN BREATHE!!

It has been about 4 or 5 days since this miraculous event. I have been able to go to the farmers market, trick or treating with Adelaide, Matt and my Parents. I have been able to walk around the yard. I even got Adelaide in the car by myself and we went on an adventure.

LIFE IS LOOKING UP!!

I CAN BREATHE!!! I CAN BREATHE!!!! I CAN BREATHE!!!

Thank you blessed God and amazing Universe for once again bestowing the gift of unencumbered breathing upon me.

Thank you also to my wonderful family, friends and amazing team of doctor's who have helped me get to this point.

Please keep the prayers coming!!