3/25/14

Today my staples were removed! Another baby-step. I saw the doctor yesterday and we have a loose plan of us leaving in April, for sure, and I'm hoping mid-April, but have to remember I'm on "Duke time" when planning things, so it could be late-April. A few things have to happen before I leave. A) a repeat bronch needs to happen to check for the aspergillus again and to check for rejection B) treatment of the aspergillus needs to get under-way (starting a nebulized antifungal soon)  C) check my gastric emptying to see if my stomach is still delayed in emptying. D) hopefully I will pass gastric study and be able to eat normal food and have feeding tube pulled before returning home.

The 24 hour PH study was good, as was the GI mamommetry test. The CT Scan looked pretty good. There was one small area in my right lung where there may be a small focus of infection and/or a small part of my lung is deflated. I didn't understand if both things are occurring, or it could be one or the other.

I didn't know what to expect today with getting staples out, and Garry surprised me by taking the day off to accompany me. Of course, Shelly was prepared to go, but I feel more comfortable holding Garry's hand! lol Turns out, it was a cinch to get them out. There were over 70 staples that were removed!

Lung function was up from my last visit, so that's always nice. The lung function at the clinic compares to my readings I've been taking at home. This may be my new baseline, but I feel good, and that's what's important. I will keep pushing at rehab and take what God gives me, AND be thankful for this chance at an extended life that I've already been blessed with! God is good! J

May God bless each of you!
Love/hugs
Lynda
 

3/16/14

I don't have a whole lot new. I must be doing better, as I see the doctor every 2 weeks now vs weekly. The results of the 24 hour PH Study were not available when I last spoke to the doctor, so I won't know anything on those until my next appt on the 24th. Since I have to pass the gastric study before I can eat, I am not pushing for those results early.

I had a CT Scan of my lungs on Friday and the results of that will determine how they treat the aspergillus. I hope to have word on that before my appointment on the 24th so I can get started on treatment.

As part of the post-transplant regimen, I have to do daily pulmonary function tests (PFT) with a hand-held spirometer here at home. The PFTs have remained stable the last week. Up until that time they were climbing, so I'm a little disappointed, but at least they aren't going down, they are staying steady. This just means I need to push a little harder at rehab. I have graduated to a bike that actually pedals vs a bike that your feet push against and the therapists are steadily increasing my weights, so I need to step it up with walking.

Shelly is back from Kansas and Garry is going to try to return to work this week (here in Durham). I'll sure miss him while he's at work, he's been my constant companion since transplant on the 20th of January. Prayers for him, for safety and for adjustment to working again.

That's it for this update. I hope you all have a good week and don't forget to wear green tomorrow!
Blessings,
Lynda

Results

Clinic today was very insightful. I found out that I have "delayed" gastric emptying, so nothing to eat yet. The reason for this is that they think contents won't empty and I will regurgitate and may aspirate into the new lungs. I had another emptying study while I was inpatient for the transplant and I have improved since then, so they will repeat this study in the near future and hope for more improvement. They did give a concession and will allow me to have "nectar thickened" drinks. This means that I can have water!, tea, milk, etc., but I have to mix a thickener with it. So, while this isn't mashed potatoes and gravy, pizza or fried chicken, it's a start. I have not received word on the 24 hour PH study yet, so those results must not be finalized.

I also found out the mold is one of the ones I don't want; aspergillus. This is probably the worst of the molds, in my opinion, but I am trusting God that all will work out. I asked the doctor if he's seen this in transplant patients before and if he's seen it cured and rid of, and he said he has, so I'm encouraged by that. One of the first thing's I asked is "Is it contagious?", and it's not, so I'm glad about that! 

My lung function was up--I'm up to 65% FEV1, which is a far cry from the 16% I had with my pre-transplant, old lungs! It's been well over 20 years since I've seen these numbers and I'll admit I get a little emotional when I see them!

That's it for today, your continued prayers are appreciated. Thanks for stopping by!
Hugs,
Lynda

3/4/14

I heard back on more of the bronch results. There was a mold that showed up on the fungus report :( They have to let the culture continue to grow to find out what kind of mold it is. There are only 3 or 4 molds that are bad news, so I hope and pray I don't have one of those. The doctor said molds are in the air and people with normal immune systems can rid themselves of the molds, but since I'm seriously immune compromised, I am susceptible to just about anything out there. We will wait to see what grows out. Prayers appreciated for good? mold.

I had the gastric emptying study Friday and am currently doing a 24 hour PH study and will hear results of these tests at my doctor’s appointment this Thursday (at the latest). The gastric study measures how quickly things move/empty through the stomach and the PH study records reflux (I hope I have that right-lol). I sure hope I pass both, so I'm able to eat some real food. I'm sure I've shared that it's been since January 19th since I've had a glass of water or food, other then tube fed, so I'm excited to eat something again. Luckily I'm not hungry, the tube feeds keep me plenty "full", so it hasn't been too bad, just inconvenient.

I did 17 laps at rehab Friday in 20 minutes :) Yesterday's class was canceled due to icy roads. I can't tell you how sweet it is to walk without oxygen on, and for it to be minimal effort! Praise God for these new lungs J  Of course, I remember that they come at a cost to another family and I keep that family in prayers.

More to come after Thursday’s appointment-have an excellent week!
Hugs,
Lynda