255 days and counting. 8.5 months. After the one year date I will be able to not worry as much about infection. And I will be able to do more without worrying so much. Infection will always be an issue. Using good common sense seems to be the key. But I have to admit I still get freaked out when someone sneezes or coughs around me. Especially since it’s flu season.
The dizziness has finally gone away. My weight has leveled off. I am not gaining but I’m not losing either. I really don’t have much of an appetite. So I am hoping with my prednisone being down to 5mg/day and my suppressed appetite the weight will eventually come off. A couple of the meds I’m on cause sleeplessness, and I am feeling this side effect alot. I have no problem going to sleep. But after about 3 hours I wake up and either can’t go back to sleep or I sleep but don’t feel like I am. YUCK. I have talked to the doctor about this and we have come up with Plan B. Hopefully it will work. I am up to 2 months between clinic visits. We are moving right along.
May 23, 2012
It is now 94 days. WOO HOO!!!!!! The first three months are a biggee as far as rejection is concerned. I am up to 1 month between clinic visits. I have one more bronch. It is in June. After that I will only get one of those again if there is something questionable going on. My breathing test are getting better with each visit. The biggest thing we are battling right now is dizziness and weigt gain. I am gaining weight. Some is water retention but alot is craving carbs due to the steriods. I have been pretty lucky up till about 2 weeks ago. For the last year I maintained my weight. I had only gain 1/2 pound even on steriods. But the last two weeks I have I have rocketed up to 20 lbs more than when I got out of the hospital. Now that was not all in two weeks. I have been bouncing around since I got home but now it is not going up AND down. My weight is only goin UP, UP, UP. Yikes!!! I am on a water retention med. Hopefully that will help some. But I know I have to stop eating carbs. Why is all the good stuff bad for us. I am slowly but surely getting back to my old self. I am getting back some of my “get up and go”. If you look at my picture gallery you can see how fat my feet are.
It is great to realize that the problems we are dealing with are not my lungs. My breathing is great!! My biggest issues are the side effects of the meds. That is a slow process but we can deal with them. I have resently heard of a lung transplant that has lasted 20 YEARS!!! This is so encouraging for me. Getting my weight down is the first step to staying healthy and 20+ years post transplant.
April 11, 2012
It is 59 days since my transplant. I am breathing without oxygen and have been extended to 2 weeks instead of one week for my clinic visits. I got the OK to drive 2 weeks ago. I drove myself to San Antonio last week. Look at me, I’m all grown up. I haven’t driven since last Oct. I have even been up stairs to my sewing studio. I am still dealing with bloated face, facial hair, weight gain ( that wasn’t a problem till this week) and the shakes. We still haven’t figured out if that is due to medications or lack of stamina. We all know how long I was on the couch doing nothing. Now I need to recondition. I’m still not out of the woods. 3 months, 90 days is the magic number. After that, things can be a little less strict. Thanks for all the help and prayers. Keep’um comin.
Breathe-Laugh-Live Donna
Feb. 23,2012
***** Great news ****
On Sunday morning at 1AM we recieved “THE CALL”! Donna has recieved her transplant and is doing great! She is expected to get out of ICU today. She will probably have another 10 to 12 days in the hospital and is now in the process of ‘learning to breath normally again’. Thanks again to everyone! Rusty
Dear Family, Friends and Well Wishers,
As you all know my loving wife Donna McDonald-Tarver is now on the waiting list for a bilateral (double) lung transplant at University Hospital Transplant Center, San Antonio, Texas. We can all agree that Donna is a loving, caring, special woman and a great friend to many. Also I kinda think that she is a wonderful wife. Unfortunately, she and I must ask for your help.
Donna has lived in Central Texas her entire life. She grew up in Austin and graduated from S.F. Austin High School in 1978. Thirteen years ago Donna moved to beautiful Wimberley, Texas where she enjoys small town life and her involvement with the Beta Sigma Phi service organization. For over 13 years Donna has worked as a Registered Massage Therapist in the CLASS program, a State program providing disabled people with medical attention and therapy that they would otherwise have to get residing in an assisted-living facility. Most of her patients were elementary and middle school kids when she first started. One of Donna’s biggest rewards has been seeing these children grow up and graduate from high school. Some have even moved on to college and many are now living independently because of providers just like Donna.
Now, after years of helping others as her work, Donna and Rusty are looking for help themselves. In March of 2011 Donna was seen by a pulmonologist for chest congestion that resulted in months and months of testing, drug treatments, and evaluations. A diagnosis of Donna’s breathing problems was difficult, but in June 2011 she was diagnosed with interstitial lung disease with pulmonary fibrosis. It was hoped the scarring in her lungs could be stabilized, but drug treatments have been unsuccessful in slowing the rapid progression of her disease.
Donna has been on oxygen 24 hours a day since July and her only medical option is a bilateral (double) lung transplant. She was evaluated as a transplant candidate at the University Hospital Transplant Center in San Antonio and has been placed on the transplant waiting list. Her greatest wish is to have a “good belly laugh” without getting short of breath.
As you can imagine, Donna’s pre- and post-transplant medical bills will be significant. Even with medical insurance there are many expenses related to a transplant that are not covered by insurance and must be paid for out of pocket. Transplant reciepents also require a lifetime of anti-rejection medications that must taken on a daily basis. There is also a lifetime commitment of follow-up medical appointments and treatments with the transplant team. Because of this, we must continue to rely on those with giving and caring hearts.
Donna has chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses only. To make a tax-deductible donation to Donna’s fundraising campaign:For more information, please contact HelpHOPELive at 800.642.8399.
Thanks for your support!
Rusty Tarver
