Lungs for Mandy

A friend of mine whom I worked out with before and after my surgery in Physical Rehab was transplanted last week after a nine-month wait. Everyone is thrilled at the thought of Patty finally being able to walk without the aid of an oxygen tank.

Patty is from Nebraska (we have a ton of folks from that area of the country) and she is here with her husband Ed. Well, Ed has been when Patty almost 100% of the time since she moved here. Last week he decided he needed to go home to get some employment issues settled. Well, sure enough that’s when Patty got her call. Luckily her landlord was able to deliver her to the hospital and evidently the landlord has done it on several occasions.

Anyway Patty looked really good yesterday. She seemed a little nervous but who wouldn’t after just having a double lung transplant right?

We all hope that her first bronch went well and that her recovery will go well. take care Patty and Congrats!!!!!!!!!!!

When I was at Barnes Weds.  Mom and I decided to drop in on two patients.

Michael: Yes, Michael is in the hospital again which is such a bummer. He looks really good even though he is obviously short of breathe. He has a gained weight which is a really good sign. He even has a belly and chubby cheeks. WOOHOO The fact that he is eating is really, really important! And apparently if things are not glued or taped down HE WILL EAT THEM. Again very, very good.

His port (easily accessible IV) got infected and they had to remove it this created a huge opening in his chest which sounds painful. Susan was disturbed when she saw the opening and could see a portion of his lung–that is how deep it is. He says that is doesn’t hurt anymore, I think it is the Darvocet talking, but either way I hope he isn’t in pain. His lung function has decreased again and he is visually short of breath.  We want his call to come SOON! He needs it! When he is healthy he will make the world a better place I KNOW IT he is actually making it better already. That should be the determining factor when someone is going to live or not. He is an amazing kid and I don’t think I have ever met someone as mature as him. When this is all done and over I know he will be one of those organ recipients who spread the word about organ donation and actually help people. (Probably Mom Susan with back issues since she has been sleeping on a cot for such a long time now) Please keep thinking and praying for him! Maybe if enough of us bother the higher being enough –he (or she) will concede and allow him to have another shot — a real shot that lasts longer than a few weeks/months like the last set.

I don’t want to get into this for too long because it is controversial. But it makes me sick when a child-molester, murderer, rapist or thief is able to live without pain while someone so good lives a life with so much suffering. I know the saying is that life is not fair, but for crying out loud how unfair does it really have to be and how long does someone have to suffer until they get the opportunity they need in order to suffer less? I’m not only speaking of Michael because there are millions of cases like his when you wonder How much more can one person take?

A sweet thing that Michael did yesterday was to offer me pain assistance by way of a pill. I was sitting there telling Susan, Michael and my Mom about my bronc. pain when Michael interjected to offer me a Darvocet. BTW: I didn’t take it.

Please keep thinking and praying! Thank you!  

     Everything went well with all of the testing last Friday and this Weds which a big relief to me. I was stressing a lot about it since school started Monday and I didn’t want to start the semester sick.

     Friday’s bronchscopy went very well. Dr Trulock and the gang did not find anything suspicious or weird. I woke up in pain which wasn’t fun but today the pain has subsided. From what I understand Dr Trulock is rough during bronchs. I have felt that way previous to this visit and the post procedure nurse confirmed my beliefs, but didn’t offer up any pain medication - what a witch Just teasing. there were plenty of other medications running through me and I didn’ t need anymore, but they would have been fun. Anyway the test went well. Weds. I received the results that they biopsies taken showed NO rejection or crazy infections. They will the grow the samples out a little longer, but nothing should appear. My lung function went down 4% due to the bronchoscopy and should go back to normal within a few weeks. I had an EKG that went well. Labwork and Xrays were fine. My A1c was pretty high which is an indication on how my diabetes is being controlled over the last three months. My number was high at 7. something. Understandably because I eat what I want when I should be watching sugar and carbs. I just have major issues with diets. I actually like to eat healthy, but a diabetic diet is not about healthy eating because not all healthy food is diabetic friendly. If I wanted complete control of my diet I’d eat huge helpings of meat. It’s just not my favorite thing. Chicken I can take, but that is as far as I can take the Atkins or South Beach diet. I’ve cut back as much as one can in two days, but it is going to be tough. Yesterday I decided to try the new ice coffee from McDonald’s since I was on my way to class and needed a pick-me-up. Once I took a drink I knew it was loaded with sugar because it was soooo sweet that it could have been mistaken for melted ice cream (mmmm ice cream). I asked the woman if it was flavored and she responded it was not. I asked her what was in it and she held up a bottle of that syrup stuff. To me ice coffee is milk, ice and coffee — Not a McDonald’s, but that ended up throwing my whole evening off. My sugars were 287 last night after class - Normal is 80-120 Simple things like that happen all of the time to diabetics. The only way you know what is in your food or drink is to make it yourself and who has the time for that? So my healthy/diabetic diet is something that I really need to focus on.

My skin continues to be an issue also. I have had several pre-cancerous spots removed. The medications make immune-suppressed people sensitive to the sun and since I lived in the Sun capitol of the United States for several years I have sun damage. Even though I used sunscreen religiously. Anyway next summer it seems that I’ll have to wrap myself in gauze like a mummy if I want to go outside. I refuse to live a life without enjoying the outdoors like the doctors recommended. There is just too much to enjoy. Oooo I could just walk around with a parasol all of the time. Anyway I see several doctors for skin issues and they keep removing what they want and reminding me to wear sunscreen which I always do.

August 14th was my six month lung anniversary and things so far are good. Nothing has changed with my lungs since I posted a while back which is good news.

Tomorrow I my have a six month bronchoscopy, xrays, EKG and blood work- up. It is a little nerve-racking…. the thought that I will again be a patient even if for only six to eight hours. I prefer living a somewhat “normal” life without constant scrutiny of physicians. My main concern is the bronchoschopy. A bronchoscopy is a technique of visualizing the inside of the airways.  This allows the doctors to examine the my airways for abnormalities. Biopsies are taken and used to determine whether or not I am experiencing any type of rejection whether it be acute (level 1-4) or chronic. Chronic rejection is what caused me to lose Mike and Ike. In addition to rejection I am worried about a lung colapse - It has happened to other patients on a few occasions.  I just want everything to go according to plan. School begins on Monday and I want to start the semester fresh and new.

Wish me Luck!

There are moments in life when we feel like things are good even only for a short period of time.    

I had one of those moments or should I say evenings last Saturday. My neighbor/friend/landlord and I decided to have a few beers on his back porch. We ended up spending several hours chatting about everything under the sun. or should I say moon? (ha) He also showed me how to play “rain god” with the sprinkler system  which doesn’t sound fun until you actually do it. You are in essence making it rain with a remote control.  I think it would be cool to turn the sprinklers on when people are passing by on Jamieson while taping there wet reaction on video. I know it sounds mean but I wouldn’t soak them, just freak them out a bit. It would be more like Bloopers and Practical Jokes rather than JackAss. In return for playing “rain-god” for a few moments I taught him a few Yoga moves which hopefully will help him.

Okay back to my point…it’s really nice to have a cool neighbor who becomes a friend.