Home

I am home!  It feels so good to be here.  I missed my family, my friends and my kitty. Courtney came over when she was done with work.  My family was going to meet me here on Monday too, but we got home too late so they came over on Tuesday and today.  I haven’t seen most of them since right after my transplant.  Everyone is amazed at how different I look.  I look healthy!  It has been awhile since I could say that.

It took a long time to get out the hospital on Monday.  The doctors came around to do their rounds close to 11:00. I thought they would come in, go over my meds and I would be able to leave.  They told me that I had to wait until after they did rounds and someone would come back and go over all my meds with me.  The one woman said she would be back in about an hour.  I was not overly happy by this, but what could we do?  I ended up eating lunch while I waited.  Also someone came by with my knee brace.  He went over how to operate it with us.  After he left I told Jason it was a good thing we had to wait because I had forgotten about the brace.  After all that the woman came in and went over all the medications with me.  She went over the name of each drug, what it did, how much I was suppose to take, how often, and the side effects.    Right now I have quite a list.

• Mycophenolate Mofetil (Cellcept) – this is an anti-rejection drug.  I take 500 mg twice a day.
• Cyclosporine modified (neural) – this is another anti-rejection pill.  I left the hospital with a dose of 350 mg twice a day, but on my way home the doctor called and changed it to 300 mg three times a day.  My body is not absorbing it so they are trying to get the drug to a therapeutic level.
• Prednisone – is a steroid drug that helps prevent and treat rejection. The dose of this drug will be slowly decreased over time. Most of the side effects of prednisone are dose-related. As the dose is lowered, the side effects decrease. .  I am on 40 mg right now, but am being tapered off to 20 mg.
• Baclofen - this is for my spasticity.  I take 30 mg in the morning and 30 mg at night. 
• Humulin N – slow acting insulin that remains in the body for about fourteen hours.   I take 12 units in the morning and 4 units at night.   
• Novalog – fast acting insulin used when sugar levels are high.  I am on a sliding scale starting at 3 units for sugars of 150 and then 1unit/50 after that.
• Clotrimazole – a drug that dissolves in my mouth and used to prevent things such as thrush.   I take one lozenge twice a day.  
• Valcyte – an anti fungal drug used to prevent cytomegalovirus (CMV).  I take 900 mg a day.
• Bactrim – an antibiotic prescribed to prevent a life-threatening pneumonia called Pneumocystis carinii (PCP).  I take one tab every Monday, Wednesday, and Friday.  
• Alendronate (fosamax) – a drug to prevent osteoporosis.  Anti-rejection pills cause bone loss so I take this once a week.
• Calcium citrate – a supplement to keep bones strong.  I am taking around 1,000 mg throughout the day.  
• Magnesium Oxide – a supplement.  Magnesium is a normal body salt that is wasted by the kidneys when taking anti-rejection meds.  I am on 400 mg a day
• Ferrous sulfate (iron) – this is obviously to supplement my iron.  I take 325 mg a day.  
• Lovenox - an anticoagulant used to treat or prevent a type of blood clot called deep vein thrombosis (DVT), which can lead to blood clots in the lungs (pulmonary embolism).  This is to treat the blood clot in my neck.  This is an injection and I hate it.  I am on 40 mg twice a day.
• Lasix – this is a water pill.  There is still some fluid on my lungs again so I have to take 5 mg a day until that is gone. 
• Acetaminophen with codeine – this is a pain killer.  I take one at night before I go to sleep.
• Reglan – a drug that increases muscle contractions in the upper digestive tract. This is to help speed up the rate at which the stomach empties into the intestines.  After transplant this is sometimes slowed.  I am on 5 mg a day.
• Omeprazole – a proton pump inhibitor to decrease the amount of stomach acid.  This is used to prevent acid reflux.  Stomach acid can get into the lungs and damage them.  I am on 40 mg a day.
• Zenpep – a pancrealipase is a combination of three enzymes lipase, protease, and amylase. These enzymes are important in the digestion of fats, proteins, and sugars.  My CF causes blockages in my pancreas preventing these enzymes from making it into the stomach.  Right now I am on once capsule with meals, but we are experimenting with that.
• Senna – a laxative.  Some of the medications have a side effect of constipation.  I take 2 tabs as needed.
• Colace – a stool softener.  I take this as needed.

After we finished going over all the meds a diabetes nurse came by to go over how to use the Humulin pen with me.  After that we were able to leave.  Before we hit the road we had one more stop.  While I was in the hospital my family told me about a security guard named Paris.  I really wanted to meet him because I heard so many great things about him.  I guess he helped my family in a lot of ways while they were here.  He knew their faces and was keeping tabs on me.  I tried to meet him when I got to leave my room with OT, but he was not working that day.  So anyway before we left I went to the desk. He recognized Jason and then he looked down at me.  He was so happy to be able to meet me.  He kissed the side of my head and wished us luck telling us to stop by and visit when I am back in the city for future appointments.  I could see why my family really liked him.  I only spoke with him for a few minutes and he already won me over.  His personality was so cheerful and very contagious.  I told him  I would be seeing him again for sure and we headed out.  It was a great feeling to be outdoors.  It was my first time in a month and it felt great!

The drive wasn’t too bad.  We had to stop at Wal-Mart and get a pillow for me.  I was getting sore during the drive.  The seat belt was hurting my incision and the seat seemed really hard.  I was getting sore on the bed in the hospital too.  I think I have just been sitting too long.  Surprisingly the drive went by relatively fast considering the anticipation I had to get home. I started to get really excited when I could see the Buffalo city lights.  Being on a hill and the fact it was dark, we could see the city from pretty far away.  We still had about forty minutes to go after that.  When we finally got home I called my mom to let her know we were here.  We put some things away and then relaxed from the drive.

Tuesday my mom and gram came over to visit and help me settle in.  We had some chili that my brother made (I had three bowls!  My eating is still crazy.  lol) and then they helped me go through all the meds.  It took me four hours to go through all my medications.  It took so long because I am OCD when it comes to organization.  I wanted everything a certain way. I went through all my old stuff and got rid of anything I wouldn’t need anymore.  I set aside a few things I might need in the near future, and put all my new meds into my medicine cupboard.  I didn’t have to do my weekly pill case, because I did that in the hospital with the pharmacy resident.

Along with the meds I have to take my blood pressure, pulse ox, and temperature every day.  I can’t do blood pressure yet though because the one the pharmacy gave me is too big.  I am waiting for them to send me a new one.  I have to take my spirometry and incentive spirometry readings a few times a day and a weight once a week.   I have a binder where I write all these vitals in to keep track of them.  This helps spot problems quickly.  Some of the medications have a side effect of increasing blood pressure so I have to monitor that.  My spirometry might start going down before I even notice physically. That is the same reason for keeping track of the pulse ox.  This all may sound a little overwhelming.  It could be, but having everything organized as I do, it really isn’t.  Plus this is WAY better than what I had to deal with before.
Some other news…  I walked up the stairs on my own last night!  This is huge because this is something I haven’t been able to do in a long time.  Jason was carrying me up the stairs for some time now.  I did not have enough breath to do it.  He stood behind me to make sure I had the strength and I did!!  As I was doing it my cat was staring at me with confusion and curiosity.  Like he was thinking, “What is she doing?  This isn’t how she comes upstairs.”  Also tomorrow I am going to call the radio station that I interviewed on.  I want to let them and the people who listened know that I had my transplant, I am home and I am doing great.  I am looking forward to telling him about it.