Lungs for Mandy

Tuesday was the big day. I went to hospital for testing to find out if the course of treatment provided worked. Well the did it right!! (I never doubted them) Everything is good. The x-ray looked good, my labwork was fine and most importantly my lung function increased to a few points higher than before the actual infection/rejection. The increase is probably due to the high amounts of steriods I’ve been taking, but whatever the reason my lungs are not severly damaged. In addition to that good news my steriod dosage has been lowered from 50mg to 25 and eventually back down to near 10 mg in two weeks. I am very happy about that bc my sugars will stay low enough to cheat a little. I enjoy eating healthy, but its hard to get everything fresh, cleaned, cooked and prepared to take to school. Now I have a little bit of openess with my diet. I haven’t gone as far as Popeye’s chicken, but everytime I pass by my nose tries to carry me there. And I WILL NOT EAT HEALTHY THERE NO MATTER WHAT THEY HAVE! I want the extra crispy, extra fattening, extra spicy chicken w/ the works. However I did stop on the way from the hospital to buy cookies and ate half of the box before I arrived home.

I feel so fortuante for what I have been given. Before my appointment I was so stressed because I thought ‘Oh know my lung function is ruined and there are so many  more things that I WANT to do. Fortunatley things worked out and I think the reason is that there are so many things that I have to do in the world.  Sometimes its hard to see through the thickness but if you make it through it you feel so good. That is how I am feeling. The hospital I to is so wonderful and make me as if I am family when family is so far away. I feel if I need anything they will provide “it” for me or find someone that can help me find it myself. In that way they have made me a stronger person personally not to mention all that they have done for my physical being.  I thank you guys very much! And I would like to say that  Jim, the social worker is a wonderful addition to the team!

School is coming along fine. I have been doing a lot of catching up so I don’t think that my assignments have been as good as they possibly could be, but it is the beginning of the semester and I will have time to study and create better work. All of my professors have been great and I really enjoy all four of the classes I am taking. I dropped the Yoga class that I was most excited for bc it was too advanced for me, but that  is my main disappointment with the semester. We take a field trip and camping trip during the semester in Geography and I am looking foward to it.

Last but not least Jake - my nephew turned seven  yesterday! Happy Birthday Jacob and have a wonderful party at the skating rink and try not to fall too much.

Take care Amanda

I am back at school, still behind a bit but I’m sure it will all work out. I think school really helps me. I need to stay busy to make sure not to think too much about things I can not change. I guess you would say that I am sort of “dweller”, but when I am busy I don’t have those thoughts. I am on this real high dose of steriods and its a bit uncomfortable, but I have to take it. Next week I go back to perform a PFT at that point we will see how much my lung function has improved. I can feel that it is better, but not like before the issues began.

Take care Amanda

I made it out of the hospital last night around 3 or 4 and I am pleased to be home! Getting back in the swing is going to be difficult since I missed a week if school. I lightened my load and dropped a class so that may help. I still feel overwhelmed a bit because my health is not 100%. It will take a few weeks to adjust the medications I am on and will soon be on. Plus my sugars are going to be tough to moniter from the high dose of steriods I am on (50mg a day) compared to 7.5. I pretty much have dropped concentrated sugar and any type of white flour from diet to help with the carbs and sugars. I can’t say that is easy but I am trying the best I can to relax and not worry. How do you turn your mind off?

Plus to perfect my day I received a ticket for parking on the street on street -sweeping day and it will cost $47. Yikes

I had a bit of time and computer today so I thought I would send an update. I was suppose to get out today, but my blood sugars are high and they want them under control before I can leave. Luckily they will be checked again in a hour and the number determines whether or not I stay or leave. I think I will get out bc I have been checking on my own personal moniter and the numbers are going down.

Thursday I came in for the broncoscopy and there is not huge pnemonia or anything too bad, but there is a presence of rejection. I feel much better physically, but I want to be home with my own things and Sosa. When I go the docs have just upped my steriod and added Zithromax a common antibiotic. NO IV’s!!! But the steriod amount is about the same as when I left here last year after my surgery and I didn’t like that feeling. But I dealt with fine. I’m not sure if I mentioned this before or not, but my pulmonary function numbers are comparable to when I left here last year. Low but not as low as before the surgery.  Since I feel better I assume that number is going up which is a good thing. I will know for sure on the 20th when I get another PFT.

I just hate the emotional feeling I get when I am told I may leave and it doesn’t pan out. I should be so happy that I have made 1 year and a few months without any problems or hospitalizations. What is one day, why does it seem so difficult? One day…..

I hope those of you that are reading this are well.

Take Care — Amanda

Well I’m sending news to let you know my body may be rejecting Mike or Ike. No it is not like when you give your # to a cute guy/girl and they never call. I wish it were that simple, but it isn’t. It is when your body doesn’t want to accept the “new organ”. There is a 95% that I am going throught rejection. I will know 100% tomorrow after a brochoscophy, (a gross medical procedure I’ll enlighten you about on another day) whether it is rejection or that 5% chance it is something else. Its actually very common in organ recipients in the first year after the surgery to experience rejection. I’m so lucky I got a few extra months. Anyway there are a ton of medications that I can take, but I will getting them in a hospital by IV. I have trust and confidence in my hospital and the team that has been taking care of me for almost two years, everything is going to be just fine. I could die of boredom though since I don’t feel a bit sick. I was told I would be in the hospital for a minimum of two days, I could use your thoughts and prayers. I just don’t understand why my body doesn’t want Mike and Ike? Who wouldn’t love them?

If you want to read more about rejection here is a area on medline you can look at. I typically find this kind of website disturbing because they give worse case scenarios.

http://www.nlm.nih.gov/medlineplus/ency/article/000815.htm

-Mandy