I Am Still Blessed.....

After all I have been through since coming to Duke in June, I have to say I am very fortunate to still be here. Just a recap of my journey I received my double lung transplant on July 1st. Not long afterward I developed a seroma which is a fluid filled pocket, this was located in my groin area. I wore a wound vac pump for three months until it finally healed. In the meantime, I battled a bout of mild rejection which formed as fluid around my lung. Once that was taken care of, I was on the mend, until my left hip developed a stress fracture. The only assumption is that I got it from prolonged steroid use. Currently, I am still recovering from the hip surgery and it is going great only now I have a bowel blockage from too many pain meds. I've had an ng tube down my nose into my stomach with no food only ice chips, until earlier today. I finally got cleared to have clear liquids and laxatives and an enema. Oh yay! I also had mild rejection again with the last bronchoscopy. I've been treated again with solumedrol (iv steroids). This is not uncommon after lung transplant so I am not alarmed. I am breathing good and this is another techicallity keeping me from getting home to MS. At least I am seeing the light at the end of the tunnel again and hopefully will be getting out of here by the weekend (back to the hotel). I am still optimistic because compared to how sick I was before I got here, what I am dealing with now is minor compared to where I was only four months ago. God Is Great!

I haven't been on the computer for a couple days so when I logged back on to check blog updates I see inspiring and heartbreaking news. It makes me stop in my tracks and say a prayer for the families that are having much harder times than my own. People like myself tend to be selfish when we don't feel good physically or things aren't going the way we want them too. That was me until today. I read about a fellow Cfer who lost his battle waiting for a lung and liver transplant. I also read of the great progress another fellow Cfer is making from receiving her double lung transplant. I'm so happy for her and her family and so sad for his lose to this terrible disease.

Fractures, Rejection, and Home, Oh My!

Well I made it through another surgery with nothing eventful that happened this time, whew! Right now my leg isn't hurting too bad, just a dull ache. Thsnk You Dalaudid, I can barely keep my eyes open,but don't want to sleep. At least the pain is minimal.
One thing that is going to drive me crazy is I can't get out of the bed until tomorrow. You know what that means, a bedpan. Thankfully I'm catherized and hopefully I won't have the urge to need the bedpan for the other, LOL! I have no shame anymore since my transplant :0

Also found out that my last bronch shows mild rejection (A1 is how they classify ie: A1 A2, etc.)which I was told will be treated like the rejection I had last time. Three days of IV steroids then taper down to my regular dose. The preliminary plan is to start the iv steroids on Sunday (cause they want to wait a few days after any surgery). So I'll take dose one on Sun., dose two on Monday, get discharged and take the last dose at the hotel. That is the plan, it doesn't mean that's what will happen. Well, it will give me more to rant/talk about:)

This brings me to the conclusion of my title, going home. Our hopes and plans from the time of transplant were to be able to leave around the first of October. Then it got pushed back to the middle of Oct. Now, it's the middle of November! I'm still hopeful that this time we will be leaving. The Orthopedic docs are saying it won't hold us up. Lets just pray nothing else goes wrong!!!

Bubble Busted!

I try not to talk ugly, but dammit I was ready to go home today. That's not going to happen for another 2-3 weeks. I've had a pain in my left hip for three weeks now. The first week it started hurting I got an xray of the area and it didn't show anything unusual. I was scheduled for an MRI, but it wouldn't be until this past Tuesday (a week later) so I've been walking around on my leg when I shouldn't have been. Turned out to be a stress fracture. I knew it wasn't a pulled muscle because it NEVER gets better. The pain is the same. I have started taking oxycodone to cope with it. I have faith in the doctor's to get me fixed up tomorrow.

I can only say that as many problems that I have had, none of them have involved my lungs (inside the lungs). I had fluid around my lung, but all of the biopsies have been clear. I thank God everyday for allowing me to survive by the miracle of transplant. I pray for the donor's family and am forever grateful for their loved one's generous, selfless gift. I Can Breathe!! Please continue to pray for me. Love To All!

What I've Been Up To

For the past week I have been trying to keep my lungs healthy without being able to do any cardio work. I haven't been to rehab in over a week, but I did graduate so it's not mandatory anymore. I have some hand weights at the apt. and I've been doing a little yoga. My hip has been hurting so bad I don't even want to get up and move some mornings. I decided to start taking the pain pills I had left over from previous surgeries and it has helped. I just don't want to take them for very long.

Today I had another bronch. It went well, thank goodness. That appt. was at 2pm. I also had an MRI appt. today. It was at 10pm. Yes, 10pm have you ever heard of an appt so late?! When we got back from the bronch, we both layed down and went to sleep and set the alarm to get up. When it went off I thought it was morning. I was sleeping good. Philip asked me if I was ready to go and I said "go where",lol. That was my first MRI, it wasn't bad I just got tired of being so still.

On our way back to the apt., we made a stop by wendy's for a frosty, hee hee. I needed a late nite snack. I'll just have to take a little extra insulin to compensate.

Overall I'm still feeling great except for the hip. We are so hoping that we will be coming home soon, like within the next week. It all depends on the verdict of the tests (bronch, mri). I won't know the results till Thurs. when I go to my clinic appt. Keeping my fingers crossed and praying hard that everything will be alright and I can get discharged to go home!!!!!

Today Is My Birthday

Today is a day like any other these days. Sitting around the room, going to dr. appts., or going to rehab. I couldn't think of anything I wanted this year. Everything I wanted I already have. God has blessed me with a wonderful loving family, great friends, and my health. One thing I do want more than anything these days is to be able to go back home to MS. I haven't been home in at least six months and I'm really missing my mama's cooking. I'm missing so many things in addition to my family and friends. I am ready to get back to the life I had to leave behind over two years ago. I was just existing, not living. It is still hard to think about how difficult my life was just 3 1/2 months ago. Thank You God for allowing me another birthday and that is enough of a present for me.

For all of my Facebook family, Thank You from the bottom of my heart for the Birthday wishes! I have felt so much love today!

One More Step Toward Home

Monday I had a dr appt to meet with my surgeon about my wound vac I've been carrying around with me since the beginning of August. In case you don't know, it was for a fluid filled pocket that burst and then wouldn't quit draining. The wound vac helped the place to heal from the inside out and it only took two months!(can you hear the sarcasm.) Well, it is finally healed! No more wound vac, woo hoo! I look at it as one more step to getting back home. The only thing left is my bronch and my dr visit both are at the end of the month. Right now I am dealing with my left leg/groin area. Apparently, I sprained a muscle last week and it has not gotten any better. I skipped rehab several days because of the pain I was in. I have a pronounced limp because of the pain when I walk. I broke down this morning and called my tx coordinator and got an appt with my doc. I got xrays, but haven't heard anything from it yet. She wanted to rule out a fracture because taking steroids makes bones more susceptible to fractures/breaks. I did get some pain meds along with the xray. I took some and even though after taking it the pain didn't really go away, I just really didn't mind it so much, lol. Everytime I get on the right path something else seems to fall apart. I'm still staying hopeful that it isn't anything that is going to keep me from going home soon!!!! I'll keep you posted........

Happy Week

It's been a good week for me. I will be finished with iv meds as of tonight, woo hoo! I've still got the wound vac on, but I hope to get rid of it Monday when I see the doc again. It is almost healed. Also, when I have my bronch on the 26th if it comes back clear, the doc will take out my hickman (the line in my chest to take iv meds). I'm getting closer to going home. I'm trying not to get too excited because it seems like something always happens. I'm just keeping my faith and looking forward to getting back home! I can't think about what "might" happen. I'm still taking it one day at a time and letting The Lord guide me. :)

I've met some more new people here for their evaluation for lungs. I think back to when I was in their shoes and how far I have come in just 3 months. I think about my donor and their family everyday. It was such a selfless act to give someone else a chance at life. I hope to find out about my donor someday. I have yet to write a letter to the family, but I will. I may never hear from them, but I want them to know how much I appreciate what they did. I feel I wouldn't be here today had I not gotten a lung transplant. I Thank God for His Love and Miracles! God Is Great!