Thanks everyone for your comments and prayers. I'm settled into a room. While I'm not happy being on a different floor, I'm thankful that I'm here and on my way to feeling better! Hopefully the antibiotics will kick in quick and I can be back at my internship on Monday. Please pray that everything goes ok with this doctor. As you know, we have major issues between us, and I really don't want to deal with him. But I don't have a choice. I'm praying he doesn't bring up anything from last time. I'm a little surprised he actually admitted me when my chest xray was clear. The last few times I've called or seen him in clinic, he's just brushed things off (even when I've had a fever). I'm guessing he either did this because I had lots of other symptoms and I really did look sick OR because my Dad was with me?? Who knows! Just pray that everything goes ok. All I know is that God knows the truth, and he will work everything out for the better!!!
My family and I have decided to get a primary care doctor for me. I've never had a primary care doctor. When you are a CF patient, you basically go to your CF care doctor or call them for anything. And that's what my CF center wanted. So that just carried over to transplant. There are lots of transplant patients that do see the transplant team for everything. But a lot of the transplant patients are older adults, and already had a primary care doctor before transplant. So in order to get seen and the treatment I need and to avoid calling transplant so much, I'm going to start seeing a primary care doctor when I get sick and it's a non-clinic day. I'm curious though...for you CF patients and/or CF and transplant patients, do you have a primary care doctor???
Anyway...I'll post again tomorrow and update. I haven't had a fever since about 3:00 today...so that is progress!! I guess the 2 IV abx kicked in fast!!
Oh yea..I have a CF/transplant friend in the hospital with me right now (not literally with me--but same hospital). He was admitted with pneumonia but is awaiting bronch results. He keeps desatting (sats dropping) into the 50s. He's on full-blown oxygen through a nose cannula and through a mask. He is feeling a lot better, but still having a difficult time breathing and can't get his sats back up. Please pray that his sats will go up and he will feel better. His prograf level has been extremely low (around 3) for several months (they didn't know til they went to clinic), so we are afraid that there is some sort of rejection going on. They have him on 4 IV abx, and Solumedrol. I'm a little concerned, but know God will work everything out!
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4 months ago
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Reilly has a primary care physician, but we only see them for non-CF related things. Things like ear infection, rash, or if I think someone needs to listen to her chest, but I don't think she is sick enough for CF clinic. Although, I will say that if there is something lung related going on, they will often throw up their hands and say, "I don't know what to do, I think you should call your pulmonologist!" I really think they are scared because it is out of their normal realm, and they don't want to screw up.
Hopefully the PCP will help you out. I know you have issues with that doc, and if you don't get along with your doc, it makes everything so much worse. It stresses you out, which is something else that you do not need.
I will continue to keep you in my prayers, Katey!
We are praying for a speedy recovery for you!!
xox
I have an Internist for a Primary Care, but I mostly see him for unrelated things. The one I had in PA was great and seemed to understand a bit about CF and worked great with my CF dr. at Johns Hopkins. Since I moved 2 yrs ago I can't find one who knows anything about CF or works with my CF dr.
Since I am older, I have things come up that I'm not sure if they are CF related or age-related. Like my legs hurting all of the time.
I just wrote about this on my blog. I don't have a primary care doc, but am planning on getting one in the next month or so. My tx docs aren't wanting to handle everything now.
I am praying that you get better soon. I'm really glad you haven't had a fever since 3. Hopefully you won't get another one!! I'll be praying for your friend too.
I live in the Netherlands and overhere everyone has a GP (a homedoctor as we call it when I literally translate it English). There is one or are more GP's in every town.
I see my GP for everything and only call my tx clinic for transplant related things. I sometimes have my GP listen to my lungs when I don't feel well and a few times she has called my tx clinic or she told me to call them just in case, to hear their opinion.
My transplant team doesn't want their patients to call them with non-transplant related things. They are busy enough :-)
I did call my transplant hospital 2 weeks ago on Saturday night at 2 am. As I was coughing really chesty and had a high fever that came up in a few hours. When something like that happens they want you to call them right away. They prescribed me antibiotics that my dad had to get from the pharmacy at 3 am. And I was admitted to my tx hospital Sunday morning. I had pneumonia but luckily no pseudo this time so I felt better really quickly. I was in for a week cause I was already scheduled to come in 2 days later for some scans to rule out PTLD and to start Rituximab to treat a very high EBV level.
I'm glad to hear that your fever had gone quickly. I hope you'll be and about and able to go home quickly.
Katey,
I'm just now reading all the blog updates. I hope you are home and feeling better.
Even though Melissa is little the CF Clinic wanted her to have a primary doc. It is hard for me to call him when Melissa is coughing. But for everything else we go to the primary doc.
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