Doctor! Doctor!

The last couple weeks have been nuts.  Not a day goes by that I am not making at least one phone call that has to do with something medical.  It is either speaking with a pharmacy, health agency or a doctor.  Now that I am feeling well enough I am trying to schedule a whole bunch of doctors’ appointments.  I am playing catch up on a few of them, keeping up with others and obviously going to see my transplant doctors.  Plus I am going to PT, I am not happy with my pharmacy, I am sick, and I am having issues with my hair.  Once I catch up and this Pseudomonas goes away things won’t seem so overwhelming.  Feeling sick like this has got me down a little.  I am not writing about this to complain.  As crazy as things seems to be now, I am OK with crazy.  I am able to keep up with everything that is going on.  I would rather be too busy than too sick to do anything.  This side of transplant is much better than the previous.  I just want everyone to understand that a transplant does not alleviate all medical issues. 

I will start with the doctors’ appointments.

• I had my neurologist appointment in October.  I hadn’t seen him in over a year.  I only had to go there for follow ups for the most part so this is one that got put on the back burner. 
• A week before I left for Naples I had an eye appointment.  I hadn’t had my eyes checked in about two and a half years.  I normally get them checked every two years.  I was starting to notice I needed a new script, but transplant was a little more important than new glasses.
• Yesterday I went to my new gynecologist.  That was a pain.  Finding and researching new doctors is not an easy task.  I was comfortable with the one I had and I wasn’t overly thrilled about getting a new one.  My old one however no longer practiced at the office I went to and I wasn’t sure where she went.  I figured it was time to get one that was closer to home anyway.   I was up to date on everything it was just time to go again.  For us girls it is important to keep up on that for many reasons.  Plus that was something I had to keep up with for the transplant list.  I am really happy with the place I picked.  I liked the office woman and the nurses.  The office was recommended by two different people that I know.  There are multiple doctors in that office and the one I picked was recommended by a friend.  I really like her.  She is extremely nice, easy to talk to and I feel comfortable around her.  That is really important for any doctor you see, especially a gynecologist. 
• January third I have a dentist appointment scheduled.  I have a cleaning every six months.
• January thirteenth I am scheduled to see my primary.  I really like her, but I don’t like how long it takes to get in for an annual.  I was technically due for one back in September, but when I called they said they are scheduling annuals out to January. 

So as you can see I am not becoming a stranger to any of my doctors.  Going to all these doctors appointment is no problem at all.  I would rather see the doctors in their offices than in a hospital room.  It was just a little overwhelming setting it all up.  As I was scheduling them I kept forgetting that I can do more than one thing a day now.

My pharmacies are another thing.  Right now I have four different pharmacies.  

• One is mail order for all of my transplant meds.  This is who NY Presbyterian set me up with.
• I get my diabetic supplies from another mail order.  This includes test strips, lancets, and control solution. 
• I use CF Services Pharmacy for my Zenpen (enzymes).  The mail order pharmacy does not carry them. 
• I use Walgreen’s for immediate things like antibiotics.  I am also using them for my insulin.  My local CF doctors are actually taking care of the diabetes.  My blood sugars are under control so unless that changes I do not want to have to get an endocrinologist.   

It may seem like a lot to keep track of, but that is not really the issue.  The issue is the mail order NYP set me up with.  They have become more of a headache than anything else.  The first time I ordered medications it went good.  I ordered everything I needed and they sent it to me.  After that it went downhill.  First I called and tried to set up an account to order meds online.   I found out this place does not have an online ordering system.  I didn’t like that at all.  It is the twenty first century!  Why don’t they have an online ordering system?  I like the convenience of seeing a list of my medications and being able to click on what I need.  I decided I would still stick with them and try doing it over the phone.  The last day in the hospital the resident went over all my medications with me.  She said I could stay with them or switch.  If I switch to a new pharmacy some medications will more than likely be different brands from different suppliers so it might be better to stay stick with them.  

The next month I called them on a Friday to order my medications.  She took my order and said it would be sent out Monday and to give them two days for delivery.  I didn’t get it on Wednesday so I called.  Come to find out they didn’t send it out until that day.  She said it was going to be delivered on Thursday.  UPS normally delivers to me around 10:30 in the morning so when I did not have my medications by 3:00, I was getting nervous.  I was going to run out of Cellcept (one of my anti-rejection drugs) Friday after my morning dose.  I called about it again and they tracked it to see where it was.  They said UPS had it and would be delivering it to me Friday.  Again I waited all day and still nothing.  With it being Friday I decided to call my coordinator and let her know what was going on.  She wrote me a script and sent it to my local pharmacy as a precaution.  I ordered from them around 6:00 because the medications were still not there.  It was going to cost me about $75 for a three day supply to hold me over until Monday.  They could not charge the insurance because the other place already had.  I was not happy about this at all, but obviously I could not go without my Cellcept.  Luckily my medications showed up at 7:30 and I was able to cancel the order. 

It turned out OK, but I was pissed.  I ran out of medicine and was freaking out about being able to have enough to get me through the weekend.  It was completely unacceptable.  I complained to my coordinator and told her I was thinking about switching.  She made a complaint to the pharmacy and they called me.  The woman was very nice and apologetic.  She said this is an isolated occurrence and she would find out what happened so it would not happen again.  I decided to give them another chance.  

Last month I ordered about two weeks before I would run out.  I told her what I needed and she asked me how much I still had.  I told her I would be completely out that Saturday.  She replies, “OK we will mail it out to you Thursday and you will get it Friday.”  I told her no. I will be out Saturday and I was not going to go through that again.  I wanted her to mail it out to me now so I have it.  She agreed she would have it sent out right away.  When I didn’t get it after two days I called to make sure they sent the order out.  The woman on the phone said it had been sent out, but she couldn’t track it for me.  I should try and call back the next day to talk to someone else who had the tracking number.  She wasn’t able to access it for some reason.  It came the next day, but seriously?  They couldn’t track it for me?  Plus they are going to mail me medications so close to when I run out?    No, that is not OK with me.  I don’t trust the mail to get things delivered to me the next day.  Things happen.  I HAVE to take my rejection medication every twelve hours.  So I decided to have everything switched over to Walgreens.  This way I can order online and have everything ready for me to pick up that day if I need it.  I don’t need to be stressing about medications.  I called my coordinator and she sent it over.

I still don’t feel too well.  I am getting better, but I am not there yet.  I don’t have a lot of energy and I am napping quite a bit.  My nose is getting clearer, but my lungs are still pretty congested.  My spirometry is down to 200 and the coughing is painful and annoying.  I cough quite a bit in the morning when I first wake up.  Then I will have a few coughing fits here and there through out the day.  You would think coughing would be no big deal me, but three months of no coughing at all and OMG I hate this!

On top of all of this I am worried about my hair.  When I went to NYC with Jay the shower head did not come down and I had my port accessed.  To keep from getting it wet Jason helped me wash my hair under the faucet.  Well while he was helping me he made a comment about how much hair came out.  He actually had a pile of hair on the side of the tub to show me.  As much hair as there was I didn’t think much of it.  Once in awhile I do have a lot of hair fall out after I wash it.  The scary thing lately is it has not been once in awhile.  A lot has been coming out every time I wash my hair and I am cleaning out my brush a lot more frequently.  I will have one day in the shower where very little comes out.  This makes me think that it stopped, then the next day a lot will fall out again.  I have started to notice it when looking at it.  When I put it up in a ponytail I have noticed it is much thinner too.

This is freaking me out.  I know it sounds vain.  I should be grateful for everything I have and not complain, but come on.  I am girl!  Dealing with access hair growth on my body was one thing, but balding too?  That is just cruel.  How can hair be growing crazy yet I am losing it?  That doesn’t make sense.  I am doing a bunch of searching online about prednisone and hair loss.  It is hard to know what to believe though.  Everyone has a different opinion.  I will definitely be asking my doctor about this.  The timing of this sucks too.  I have been planning on giving my hair to Locks of Love at the end of the month.  Erika is coming home for a few days so we are going to do it together.  This is something that I have wanted to do for a long time.  My hair was never long enough for it though.  Right now I have the length and I really want to do this.  I better do this soon before I have nothing to give.