It's Friday, and I wish the day was over! I originally expected to be home WAY before now!!! I am feeling a little better today. My headache has returned though this afternoon and is really painful and annoying. I did walk down to Starbuck's earlier today with Brandi, which was a nice break!
I just say my doctor a little while ago. It looks like I will be here until Tuesday of next week, which will be a total of 14 days...UGH!!! I really pleaded my case to him this afternoon, but didn't have much luck. He said we might could do home IV's, but didn't sound to positive about it. It's really too late in the game now, since it's the weekend starting tomorrow. It would be difficult to arrange. Another doctor comes on service starting tomorrow, and he happens to be my favorite. So it will be interesting to get his take on things. Dr. Y said today that he didn't want to stop the treatments at 10 days (today). He felt like if we stopped everything, that the symptoms would return and we wouldn't be completely sure if we cleared everything up. And he didn't want things to return and me to get sick again shortly after. I did manage to get my steroids (solumedrol) decreased to 20 mg twice a day instead of 40 mg twice a day. I told him about my headaches. He denied that the Solumedrol was causing them, but I said that I haven't had any headaches until now. He then said that I had probably had enough high dose steroids and it was ok to start tapering me tomorrow. So hopefully that will cure the headaches.
My 02 SATS are still hanging around 92/93. The NP this morning as well as my coordinator confirmed that they were low from the inflammation. A new NP came on service today and told me that there was a LOT of inflammation in the lungs, which was new news to me. It's so hard to tell sometimes how serious something is when you talk to different people. The doctors and NP's come across so differently sometimes. Oh well. I definitely want the inflammation to go away. And more than likely it's been there awhile and been the culprit of my wheezing and maybe attributing to being sick.
I did get to talk/meet with my transplant coordinator today. We discussed the cruise I am going on in August. She said that she is pretty sure it's ok, but doesn't want her opinion to be the final decision. She said she needed to discuss it with the entire transplant team, including the two surgeons, other doctors and other two coordinators. She said that she would want to monitor me very closely over the next few months. And more than likely would want me to come to clinic two weeks prior to the cruise to make sure all is ok, and possibly go on antibiotics just as a precaution. She even mentioned me seeing one of the travel MD's to get his opinion as well and see if there is anything I can do to better prepare me for the cruise. Especially since I'm going to Mexico. Then she proceeded to say if the team said no, that I would probably do it anyway, and we would just have to deal with it. I'm not going to risk my health, but I've been looking forward to this cruise for so long and most of it is already planned. It was planned back in January/February before the streak of pneumonia and hospital stays started. So I'm interested in what their opinions are. I don't usually worry about things too much. I never put my health at major risk, but I don't let it stop me from doing things either. I've always been known as a person that over-does myself. I hate being bored, and I hate not trying things just because there is a chance I might get sick. I guess this issue is starting to sink in more and I'm realizing that I may have to make some changes. It' sucks....and I'm so frustrated right now. This is the 1st year that I've had pneumonia this much and been sick the last 6 or so months. It's always been a mystery to why I get pneumonia so much during the year. But I think now the transplant team is taking it a little more seriously. Also, seeing some transplant patients pass away recently, scares the heck out of me. I've seen how quickly things can take a turn for the worse. I'm ready to get out and ENJOY my summer as planned. Right now I still plan to start nursing school, but may have to think about some things.
One of the benefits that has come out of this hospital stay and the previous ones is that Dr. Y has finally recognized that my health is not great, and I was never lying about being sick. I guess he has proof on paper now and finally is concerned. I still say he was guy-PMSing when we got in to the big argument back in January. We are getting along pretty well now. I still never will approve of what he did and said to me. But I'm glad he is finally taking my health seriously. My coordinator mentioned this afternoon that she was glad he was finally taking notice and up to trying things to stabilize my health.
Ok...that is enough of my rambling! Back to watching TV I guess!
On a side note....Richard, Kori's husband was admitted to the hospital today. I don't know a lot of details yet because Brandi just notified me. I hope to see her later, maybe this weekend! He is just one floor above me. Please keep their family in your prayers as well! Thank you to all who have been praying for me! It means a lot!
I hope everyone has a great weekend!
Hey dad
5 months ago
5 comments:
Sorry you're stuck for a few more days! :( Hope you start to feel better ...
Hey honey! He just needed a tune-up. He's been on Cipro for about 2 months now. And since we are about to interview Hospice organizations he wanted to get one last admission done because once we go on Hospice it will be home IV's from then on out. Hope to see you too. We'll be up there tomorrow. I'll try to come visit. Love ya!
Hey Katey! My link to my blog is
http://swelch-letyourlifespeak.blogspot.com/
It's not near as good as yours though. I love the graphics you have used on yours. I also keep a blog on my myspace. I am about to transport a lot of them over to this one. I am writing a book too. Gah, feel like I am telling you a lot. Ha! But it has just been so long since we have talked! I am close to the middle of my book now. It is about how God has impacted my personal struggle with CF!!
I am following your blog now! I love reading these things! I hope you get to feeling better real soon! =)
p.s. I hate how UAB blocks FB!! What do they expect us to do while we are there!?!
~Summer
I hope that you can go home soon, but I'm glad this visit was a new dawning for your dr. that you definitely do have health issues!
Thanks for letting us know about Richard. This must be so hard on Kori and the boys (and Richard).
I love you sweetie! Hang in there!
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