Meeting with Donor Family!

I first wrote to my donor family just before the 1 year anniversary of their loved ones passing. Shortly thereafter, I received a letter back. I learned that my donor’s name is Adrian, and that Adrian was a young 22 year old that passed of meningitis. Losing a child at any age is hard, but losing one so young must be doubly hard to handle. Shortly before his passing, Adrian had told his mom that he would like to be an organ donor, should anything happen to him. Little did they know that they would be faced with this situation just a couple of months later. From what his parents have told me, he was an outstanding young man, a college student, full of life and loved by many.

His parents (Tony and Maria) are lovely people. Garry and I quickly bonded with them and they are very close to our age, so we found some things in common. Maria and I even have the same taste, as we have the same shirt and a purse with just one detail different! Lol We did some touristy things in Denver and had a nice time. On a whim, I put a stethoscope in my suitcase, and I’m so glad that I did. Both Maria and Tony listened to Adrian’s lungs and it meant so much to them. As you can imagine, there were a few tears.

We are so glad that we met them! Garry and I plan to visit them in California when time/finances permit. Please keep this family in your prayers, as grieving can be a long, difficult process.

My lungs are doing well. My next visit to Duke is in April. I have to have a pulmonary function test done locally in December. I have had some issues with anemia, which required a unit of blood the end of August and an iron shot. My creatinine level is a bit high (indicator of kidney function).  I will see a specialist regarding both of these in the near future. Prayers appreciated.

Thank you for checking in and may you have a blessed day!

~Everyone smiles in the same language~ one of Adrian's favorite quotes

No rejection :)

We had safe travels to Durham and back and my bronchoscopy reflected no rejection!! It will be days/weeks before I hear back on the cultures they took to check for any kind of infection. 
Thanks for the thoughts/prayers!!  :)
Lynda

1 Year!

Today is the 1 year anniversary of receiving my transplanted lungs! I'm so thankful to God for this gift. I'm still doing well and have my 1 year check up next week at Duke. It's been a good year and I feel so blessed, as some of my fellow transplant friends have had a some-what rocky path post transplant.

My quality of life has vastly improved and I'm so grateful for that! I'm also so very thankful for your prayers and support for myself and my family during this last year.

Please keep us in your prayers for safe travels to Durham this weekend and for good checks next week! Thank you!

Here's to a great 2015--for all of us!
Hugs,
Lynda

Donor Family

I would like to ask for prayers for my donor family today. My guess is that this is the 1 year anniversary of them losing their loved one, as my transplant was started in the wee hours of the 20th. I can't imagine what they've gone through and I sincerely hope and pray that they can start to heal as they pass this milestone and I am SO appreciative of the decision to donate their loved ones organs. May God bless them all.

Merry Christmas!!

Boy, what a difference a year makes! I keep reflecting that last year at this time I was completing pulmonary rehab and jumping through final hoops to be listed for transplant and Garry, Shelly and I were celebrating Christmas (with our little Christmas tree), hundreds of miles away from Dakota and other family.

Quality of life this year is SO much better and I am so thankful to God and to my donor and his/her family for this gift. If I could, I would ask you to please say a prayer for my donor's family as they are going through the first Holiday Season without their loved one. The one year anniversary is also coming up next month (seems hard to believe!), so I am mindful of their grief during this time as well. I did write a letter to my donor family and I so appreciate their generosity during most likely the most tragic time of their lives. As you can imagine, it was a hard letter to write, as there are no words to thank someone for saving your life...

It's during the small things in life that I reflect and rejoice over the changes; walking up stairs without stopping to take a breath, walking on the treadmill (quickly, I might add! lol) without oxygen tubing being draped over the rail, going to the mall with Dakota and not having to look for the nearest bench to rest on, laughing without having a coughing fit, walking in a doctor's office and not needing to find a place to catch my breath as soon as I get in the door, even checking the mail at the end of the driveway without needing to put on oxygen first.  It's just been amazing, and if you can do these things with ease, please take a moment to appreciate it :)  Although this may not be possible, my wish is for all of my CF friends to be able to have a successful lung transplant some day. I have met many others suffering from other respiratory illnesses that I wish this for as well.

God Bless you all as we celebrate the birth of Christ this year! Merry Christmas from our family to yours!

 

 

9 months today :)

Today marks my 9 month lung-anniversary! Garry's sister, Kristi, and I just went to Duke for the 9 month check-up and bronchoscopy and lung function was up 15% from my last visit in July and there was no rejection shown on the biopsy taken from my lungs!! Praise God for that and thank you sooo much for the prayers for safe travels and good results! I have not heard yet if there are any infections or fungus brewing in my lungs. Some of those test results can take weeks to grow out. Continued prayers appreciated!

Kristi and I flew to Raleigh and had layovers in Dallas. It has been since the 80s since I have flown and the flying part hasn't changed, but the security part sure has! Luckily we passed through with no problems. We sure got a lot of walking in, especially at the Dallas airport, but it was so nice to be able to do so without having to stop to rest :) 

I did hear someone in the seats directly behind us coughing on a couple of the flights, so I hope my mask did it's job in protecting me from getting those colds/flu! I suspect that I should know today or tomorrow if I caught anything.

As long as I continue to do well, my next visit at Duke will be in January for my 1 year check. My doctor said that if I'm still doing well at my 1 year check that I can continue my follow up care past that point at a transplant center closer to home, so I am strongly considering that. 

Thank you for reading my blog and I hope you have a great week!
God Bless,
Lynda

48!

Today happens to be my 48th birthday. That's almost 50! Eeks! I have been blessed to have cystic fibrosis and be celebrating my 48th birthday. Also blessed to have these new lungs and be able to do things without getting short of breath! I went to the mall this week and it was nice not to have to look for the very closest parking space I could find and not having to worry about taking breaks when I was walking around the store. God is good.

I have been feeling better and have had more motivation since stopping one of my medications, so this is good :)

I hope you're having a good, relaxing weekend and God Bless~
Lynda

Yay!

I got an email from my transplant coordinator today and there was no rejection on my lung biopsy!! Praise God for this!! I assume there was no infection on the initial results and they will let me know if fungus or anything else grows out in the weeks to come.

Thanks so much for your prayers and I would ask for prayers for a safe trip home, if you would please. Thank you.
Hugs,
Lynda

Bronch

The doctor said everything looked good on the bronchoscopy today! We should know by week's end if there is any rejection or infection.

My lung function was down 8% yesterday (compared to April) and lower then what my home machine has been indicating, so I hope it's just due to a different climate or something.

Some of my medications were lowered and a couple were dropped, so hopefully that will help me with my lack of motivation I've been struggling with. The doctor said that I take a number of meds and that a few of them could be making me feel tired.

Thanks so much for checking in, and as always, thanks for the thoughts and prayers. I will update when I hear if there is any infection or rejection.
Hugs,
Lynda

Safe Trip

We arrived safely in Durham and plan to go to the coast tomorrow, then appointments Tuesday and the bronch Wednesday. I will update as time allows. I'm off to bed now.

Thanks for the prayers!
Hugs
Lynda

Almost 6 months!

It has been awhile since I have updated, but there isn't much new news, which is good, that means no set backs! My lungs have felt well. Lung function is in the low 80s, which could be better, but after hearing about some of my fellow transplantees (that received their lungs at close to the time I did) that are still in North Carolina having issues, I'm not going to complain. I have had some issues with motivation lately. I'm going to ask one of my doctors if one or more of the medications I'm on could be causing me to be tired and unmotivated. I could sleep just about anytime of day.

Next week we will be in Durham, NC for a 6 month check-up and bronchoscopy. Prayers for safe travels and that the bronch will go well with no rejection or complications from the bronch itself, please.

Also, while I'm asking for prayers, Garry has had some digestive issues lately and has a colonoscopy scheduled for July 31, so if you could keep him in your prayers, that would be great.

Dakota is doing well. Still working part time and enjoying summer before heading back to college in the Fall. She gets to come to NC with us this time and is excited to visit some states she hasn't visited before.

I will update when I know more. Thank you for the prayers and I hope everything is well in your world.
God Bless J

4 Months!

It seems unbelievable that yesterday marked 4 months since I received my transplant! It's also been 4 months for my donor's family, and I often say prayers for them and know that they most likely are still struggling.

I've been doing pretty good. I have finished tube feeds, am on a regular diet, and am getting my JG tube out next Tuesday. I still have to schedule a FEES (swallowing) test to see if I can drink plain water yet. I've kind of got used to the nectar thickened water and just make the best of it. When I talk to the doctor Tuesday, though, I will get a date nailed down for the FEES test.

Plans are for a 6 month visit to Durham in July. I'm excited to talk to the doctor then and get his opinion on a couple of things. For one, my lung function is down some since returning home and I've told the transplant coordinator more than once, but I don't get a sense of urgency from her, so having a dip in lung function may be normal (another question to ask!) I think she thinks (and it's very possible) that it could be allergy related. The wind has been non-stop in Kansas pretty much since the day we arrived home. There has probably been 1, maybe 2 days when it wasn't windy since we returned, and with drought conditions, it's been dusty at times as well.

I have been working out at a gym 5x a week and enjoy that! My goal is to keep pushing myself and to get these lungs in shape and get some improvement out of them, God willing!

That's really all I had. If there is anything new to report, I will.  Enjoy your summer--let's hope it's not going to be too hot!
Blessings,
Lynda

Home

We made it home safely last evening. Been unpacking all day and still have more to go. Thanks for the safe travel prayers :)                                                    

Going Home!

God willing, we plan to leave tomorrow to return to Kansas! I ask for your prayers for safe travels and also for peace of mind as I leave the safety net of the transplant team here in Durham. Thank you for standing by us through this journey. We should arrive in Kansas late Friday. I will update my blog as time allows.

Hugs,

Lynda

No Rejection :)

Praise The Lord, no rejection was seen on the 3 month bronch biopsy! It will be a little bit before they see what/if anything grows out from the cultures.

As for the gastric study, I passed the 1 and 2 hour goals, but was a bit delayed in emptying at the 4 hour mark. My doctor still approved my eating, but wants me to eat a number of small meals with soft foods, However, I also had a swallow test today and had good and bad results. The good is that I am approved for eating all kinds of food, the bad news is that thin liquids (water, milk, etc) are still wanting to go down the wind pipe at times. I started out all gung-ho, but as I went along, my throat muscles got tired and didn't cooperate as well. Because of the good clearance, I should be able to wean off of the tube feeds, which is great!! Of course, I have to hear this from the doctor first. I should hear something tomorrow.

The doctor is working to get us able to "head west", as he says, so there's a very good chance that we will be home by week's end next week :)

Thank you for stopping by my blog, and for the continued prayers. I will update at least once more before we head home. 
God Bless,
Lynda

4/11/14

I didn't hear anything on the gastric emptying yet. It will be next week. I was hoping I would hear that I passed it and could enjoy some real food this weekend. Ah well, I will know for sure next week.

In other news, my FEV1, which is a measurment of lung function, was 83% today! I think I shared before that I get a little emotional when I see these numbers. Praise God!

I started at a new gym this week and that's going well so far. It's actually the Duke University Health Center. After they graduated me from pulmonary rehab a few weeks ago, I could only come work out late in the day and I had an IV, tube feeds and medications all that had to start at 5 p.m. and I wasn't home from rehab yet.

Speaking of IVs--I'm done with the IVs for the mycobacterium I had pre-transplant! It's so nice to not have to get up at 6 a.m. to do an IV. I had been doing that for 5 months total pre/post.

I have my 3 month testing and bronch on Tuesday. Prayers for no complications or rejection from the bronch and for good results, please and thanks!

Have a wonderful weekend :)
Love/Hugs
Lynda

4/6/14

I thought it was time for an update, although there's not a whole lot to update.

I'm still doing well. I started a nebulized treatment for the aspergillus. It must be some wicked stuff--if anyone else is in the room while I am nebbing it, they have to wear a mask. I have been opening the window right next to my desk and that has worked well. I do this treatment 2x a week and hope it's successful. I have my 3 month bronchoscopy on April 15th. Prayers for no rejection or mold or growth of new stuff appreciated!

Also, I have another gastric study this Wednesday. I'm not sure if the test will be the liquid emptying test or solid emptying test. If I can pass this test it will determine what I can eat/drink, so prayers appreciated for that too, please.

Now on to praises! I had been at a plateau with my lung function, but the last few days it has been a bit higher, so praise God for that! :) It has been so nice to be able to walk, take the stairs, etc. without oxygen and without getting very winded! I'm so grateful to God for this chance and to my donor for the life-saving decision they, or their family made. Of course I know that they are still grieving and hold them up in prayer.

I think I mentioned before that we hope to be home by the end of April. We gave our 30 day notice for the end of April, so I hope it works out or we will be living in a hotel again!

If I may ask for prayers for one more thing; my best friend of 30 years has recently lost her sister to cancer. Her sister was my age. May I please ask for prayers for Tosha, and for her brother, Clint, through this dark time. Thank you.

Thanks for checking my blog and enjoy your Sunday!
Blessings,
Lynda

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