No Rejection!

Prayers answered--no rejection at my 1 month bronch/biopsy!

I won't know results of fungus, bacterial cultures, etc for a few days/weeks. Trach is out and seems to be doing OK. I hope it heals nicely, I'm told it takes a few days/weeks to close up.

I notice that I'm feeling a bit better each day and getting less short of breath with exertion. I hope the trend continues. Those first few months post-transplant can be a bit bumpy, but so far, so good, so praise God for that!

I am still totally dependent on tube feeds. We even crush my meds up and mix them water and put them through the tube. I will be glad when that step is behind me and I'm able to swallow pills whole and able to eat regular food. It will happen, and my lungs are doing well, (as far as I know), so I'm going to focus on the positive!

This next week I will be doing a swallow test on Tuesday, see the post transplant doctor on Thursday, as well as do all of the labs, chest xray, pulmonary function tests, etc on Thursday too. The Thursday visits will be a weekly occurrence for some weeks from what I understand. I also have rehab every afternoon, M-F. I'm looking forward to rehab and gaining some strength back!

That's it for today. Updates as there are any available. Have a wonderful week!   J

2/19/14

Just a quick update. Yesterday I had a bronchoscopy done and they also removed my trach!!!

This bronch was the 1 month bronch, so they go in and look a little deeper then the bed-side ones I had, so I was sedated for the bronch. It actually was nice to not be awake and they pulled the trach while I was out as well! Praise for that! Another praise is that I always get sick from whatever they use to put me under, but this time, not so!!!

I would love to ask for your prayers that no rejection or nasty bugs will show on the 1-month bronch and also for prayers for healing for my trach site. They just leave a hole in your throat covered with a bandage and it eventually heals up by itself. A nurse is coming by this morning to change out the dressing and to look it over. I'm going to try to get more sleep, but wanted to update quickly.

God bless and thanks!
Lynda

2/16/14

I hope you all had a good weekend. It was a snowy weekend around here. Because of the weather, and the fact that the city shuts down, pretty much, when it snows, I have 2 shipments that contain medical supplies that are MIA! They should have shipped them via FedEx, then they would be here! lol I had to borrow some tube feed supplies from a fellow lung transplantee and neighbor here in the complex to get me by until tomorrow!

My doctor's appointment went well. He tweaked a couple of my meds and is ready to get my trach out, as am I. I have my 1 month bronch scheduled for Tuesday, so Dr thought it would be good to leave the trach in to make the bronch easier, then they can remove it after the bronch if they felt comfortable in doing so after seeing the results of the bronch. I will be at least lightly sedated for this bronch, as they take samples to check for rejection, and I'm not sure what else during these. Prayers appreciated that all goes well, please. I also have quite a relationship with pretty much all anesthesias, and get sick to my stomach afterwards, so I hope I do OK, as I certainly don't want to aspirate anything into my lungs!

My blood sugar was too high to exercise at pulmonary rehab, but I had a consult to learn what I’ll be doing anyway. I hope I can get a better handle on these blood sugars. A couple of the medications I’m on really can raise them!

I’ve been doing pretty well. My back really starts talking to me after I’m upright for too long, whether it be walking, sitting, whatever, so a few rest breaks throughout the day are needed. I still get a bit winded, but it seems to be getting better. It will be interesting to see how I do with the trach removed. I think I’ll do OK, hopefully I will be able to breathe better! 

I feel like I’m rambling now, so will sign off. I hope you all have a wonderful week filled with God’s blessings!

Hugs
Lynda

2/13/14

Everything is going well at the apartment. It seems the days are busy between doing tube feeds, mixing the meds to go into the tube (21 meds total each day), I'm doing (1) IV every 6 hours, (which is what most CFs have to do post-tx, to keep our old bugs at bay with the new lungs, just in case any of the old bacteria/infection was still in the old airways and sinuses). I'm not sure how long I will need to continue to do the IV. I've been sleeping pretty well, however, as I'm home and more active, I notice more aches and pains and pulls, but it's all working towards the goal of getting these new lungs into shape!

Today, I set the kitchen timer and walked around the apartment to try to stay in shape some-what. We have had a winter storm here the last 2-3 days and the ground is white. In case you didn't know, they're not used to snow out in NC and this town shuts down when it snows! They just don't have the equipment to keep the roads clear and the roads are all hilly, so that presents a whole set of issues in icy/snowy weather too. I'm glad Garry's not been out working in this!

I have a doctor's appointment tomorrow and start pulmonary rehab on Saturday, so prayers appreciated for good check-ups and for all to look and check out well, please. I have to complete 23 sessions of pulmonary rehab to "graduate", and if I'm healthy at that time, then I should be able to return home shortly thereafter.

Have a great day!
http://cota.donorpages.com/PatientOnlineDonation/COTAforLyndaJ/

Out and fund-raising

I officially got dismissed from Duke University Hospital last night. It was 9ish before we got home, and I was already tired, but it was good to be home.  The only thing I miss from the hospital is the bed that inflates to your body, so there are no sore hips, etc. in the morning & I miss someone else preparing my medicine!! It took 45 minutes to prepare it today. I have to crush all the pills, mix them with water, then put them in the feeding tube. Garry crushed them and I mixed and administered them. Luckily, some of the meds come in syrup form, so that’s not so bad. I hope to get acclimated to being at home the next couple of days, then hitting post-surgery rehabilitation the end of the week.

I will be honest; I have lost quite a bit of ground by having the major surgery, then lying around quite a bit the last 3 weeks. I went to kneel on the floor last evening & barely could get up, due to weakness. I’m not complaining, I’m happy to have the new lungs, just giving an insight into how I’m doing.

I also want to share that God has placed what I call “angels” in my path at just the right moments. One time, I was particularly anxious, heart racing, and a pretty black woman came to my room to do an EKG, and as she was leaving, she said a prayer over me, in Jesus name, and my heart immediately went back to normal and I felt a calm. Also, while in ICU, there was a doctor I would see when I was walking, and he was just a quiet, steady presence, and always encouraged me when I walked by, and I’m sure he does that to everyone, but I wonder if he truly knows the impact he has on some of us. Then, today, one of the home health nurses took extra time, just to give me some much needed TLC . And, my obvious Angel, Garry, has been by my side every day, even sleeping at the hospital, the last couple of weeks in a recliner. Shelly had this apartment spic and span, top to bottom and I even noticed our laundry was folded when we got home last night. I have MUCH to be thankful to God for, including you reading this and keeping me in your thoughts and prayers.

On to another topic…some people have offered to help us financially, and after paying for the first month of post-transplant meds before leaving the hospital ($500+!), I have decided that this is a good time to set these wheels into motion! I have set up a fund-raising account with COTA (Children’s Organ Transplant Association). They help with transplant fundraising for children and adults with CF, possibly because it starts as a child’s disease, I’m not sure why?  Anyway, 100% of proceeds earned go to us, they don’t charge a fee, and donations are tax deductible! We had saved up enough money for approx. 3 months stay at a facility, which would cover the typical stay at a transplant center, but Duke requires 23 sessions of pre-transplant rehabilitation and another 23 sessions of rehab post-transplant, so that’s an extra couple of months tacked onto the stay right there. So, long story short, if you’d like to help out, that would be GREAT!  Here is a link to my fund-raising page:

http://cota.donorpages.com/PatientOnlineDonation/COTAforLyndaJ/

As always, thank you for reading my blog and I will continue to update!

Love/hugs/blessings
Lynda

2/8/14

Still inpatient. Now the plan is for dismissal on Monday, barring any complications or setbacks. I most likely will go home on tube feeds and with a trach for just a few more days.

I'm still walking 20 laps daily and have felt pretty well. I have some congestion today that I can't seem to get up, and that's tired me out some, but I try to push on. They do xrays pretty much daily, and I just had one done, so if there is anything to worry about, I'm sure they'll let me know.

Sleep is coming easier, which is a blessing! They still wake me at midnight and 4 am, but I usually can go back to sleep.

If I get out on Monday, I will be starting pulmonary rehab shortly thereafter. I'm looking forward to that and to getting back into some kind of shape.

That's it for today! Have a wonderful weekend!
Hugs & Blessings,
Lynda
Edited to say that "home" means our apartment in Durham. We probably won't be in Kansas until April.

2/5/14

I made 20 laps around the unit yesterday and 17 so far today! 20 laps is the goal Duke likes patients to meet.

They downsized my trach to an uncuffed size 6 today and if hold my finger on the end of the trach, I can talk!! They may be sorry I have a voice back! Lol The doctor suggested that I wait until I get the speaking valve before I talk too much, however.

I am having to have daily bronchoscopies done where the doctor suctions out my lungs. This gets very uncomfortable, but is needed. Thank God for lidocaine, and this is also one time I'm glad to have the trach--doctor just goes thru it vs. my nose or back of my throat! It sounds like just a few more days of bronchs will be needed.

I suppose there's a small chance that I can be released to go home this weekend, you just never know what each day will hold. We will keep you updated.

 My friend, John, walked 20 laps one day and couldn't get out of bed the next, turns out he has some blood clots in his lungs. Prayers appreciated for him, please. I think some complications are more normal than not with such a major surgery. My friend, Cris, is doing pretty well, but I don't think any of us would turn away prayers!

Time for my tube feeds, so I'll sign off. Thank you so much for checking in and for the continued support and prayers.
Hugs,
Lynda

2/3/14

All drain tubes are out! Trach reduced to a smaller size, however I'm still not quite strong enough for the speaking valve. Co2 level is 48--normal range is 35-45. I'm trying to increase my laps walked each day.

Goals right now are: gain strength thru exercise, breathe around the trach easier, be able to eat real food vs tube fed! I am craving a big slice of pizza and a tall glass of ice water! Sometimes your swallowing is affected by the surgery and you have to re-train muscles again so you don't asperate contents into your lungs.

That's it for today! As always, thanks for checking in!
Blessings,
Lynda