Pulmonary Fibrosis and visit at Shands

[Kathyfl]

Here is the email we sent to family and friends yesterday.....funny it is easier to write about myself in the third perdson.


As you all know from our last correspondence, we were told that the University of Florida's teaching hospital, Shands, informed us that in order to be placed on the Lung Transplant List, their policy is that you must be in the last 12 months of life. The reason for this is the post transplant mortality rate  makes this operation one of last resort.

Today, Jim, Kathy and Shands agreed to the three days of testing and evaluation that, we believe, will result in her being placed on the Transplant List sometime within the next 30 days.

The good news is that while the trend of deterioration of Kathy's lungs is significant, the Doctors do not believe that Kathy is quite yet within her last 12 months, but rather believe that this time is close upon us and the prudent, safest thing to do is to start the evaluation process now.

We have secured Evaluation dates of May 28th, 29th, 30th for a full 8 hour per day,  three day evaluation.The purpose of the evaluation is for Shands to determine that Kathy is physically, mentally, and medically a good candidate for the transplant procedure. We are confident that Kathy is a good candidate and the evaluation will result in her being placed on the transplant list sometime in mid-June. The average wait for a Lung Transplant is 6 months. During this time, we must commit to staying within 2 to 3 hours reporting time to the medical facility.

After Kathy has the transplant, it is likely that she will spend 1 or 2 weeks in the hospital and 4 to 6 weeks in local accommodations so that she can partake in daily outpatient and evaluation services at the hospital. She will need to be on immune system suppressant medications for the rest of her life.

This is something that we have been expecting for some time and while frightening in its implication, also provides a sense of relief that we are starting the process.

We continue to be hopeful and prayerful in our approach and as always ask for your prayers and support

kathy Fl
IPF 4/07

[maggiemag]

Kathy, thanks for the update.  I will continue to pray for you and your family.  Shands knows what they are doing, and I hope you get listed soon and get a new lung with a speedy recovery.
Margaret