This is a GOOD day. Lee has been officially placed on the Heart Transplant List with the Mayo Clinic in Phoenix.
Today we met with one of our transplant coordinators (an RN who specializes in heart and kidney transplantation.) We reviewed the procedures, requirements and expectations. Lee will be listed as STATUS 2. Please see the previous post, "THE LIST" for an explanation of what that means.
We will be followed at the Mayo Clinic and the Phoenix VA Cardiologist. For the most part, we will alternate between the two and be seen approximately every 6 weeks. It is a long road and we will be keeping close to home in Buckeye, AZ. We have amazing next door neighbors who keep an eye on us both. We have a new church home & have found some new, supportive friends there too. We are blessed.
Please keep us in your prayers. We appreciate them more than we can say.
2 Corinthians 1:11 "and you are helping us by praying for us."
ORGAN DONATION
We hope all of you reading this will consider organ donation. In the previous post, THE LIST, there is quite a bit of information on how the procedure works. Nearly everyone can be an organ donor. Even LEE, is an organ donor. Of course, he couldn't donate his heart, but his other organs, tissue, etc. can be donated.
Of note: heart donation can only come from someone 40 years old or younger (with some exceptions, up to 45 years old) It is important to encourage our younger generation to be organ donors. Other organs do not have the same age restrictions.
In Arizona, please register online at: https://www.azdonorregistry.org/
In Washington and Oregon: http://www.donatelifenw.org/content/donor-registry
Friday, April 5, 2013
The VA: the good, the bad, and the ugly.
Lee served in the US Air Force during the Viet Nam era. He has received his primary health care through the Veteran's Administration since early 2003. For the most part, the care has been very, very good. The worst part of dealing with a big agency like the VA is the maze of paperwork and people to work through to get into see a doctor. As a general rule, once we get into the doctor, the care is excellent. We've been to the VA facilities in Seattle, Loma Linda, Tucson and Phoenix.
On February 15, the Mayo Clinic doctors accepted Lee as a heart transplant patient. We had only 2 requirements to complete prior to officially being listed.
1) Have a dental exam & evaluation confirming there is no infection of the mouth, teeth or gums. (We found a local dentist in Buckeye that we would HIGHLY recommend to anyone needing dental care. They took care of Lee right away and were extremely helpful, caring, AND QUICK to get the required documentation to the Mayo Clinic.)
2) Get the Shingles vaccine. Once the shingles vaccine was given, we would be required to wait 30 days before Lee could be listed on the transplant list because the vaccine is a live virus.
The BAD: the primary care doctor knew ahead of time that this would be a requirement. As soon as we were accepted, we called and left messages (multiple times) with no call backs. The weekend hit, so we emailed the doctor (a new system with the VA & it works quite well SOME of the time.)
The UGLY: a week later and after a trip down to the VA (35 miles from home) we STILL had not gotten an appointment for the shot. There were more phone calls & FINALLY we had a date set (but only after requesting help from the patient advocate.) It was a full 2 weeks before that little task was completed. A two week delay for being listed. SAD .... and quite frustrating.
The GOOD: In the midst of all of this craziness, Lee's ICD needed to be replaced. There is a battery life on all pacemakers and defibrillators & his was in need of replacement. We want to make sure there's enough "juice" left in the defibrillator to ZAP him if he needs it! We had previously scheduled this day surgery & it was performed on March 25 in the Cath Lab at the VA in Phoenix. The doctor was amazing. He is also a surgeon at St. Luke's Medical Center in Phoenix and highly regarded. He completed the surgery in under an hour and Lee was home by 7pm. We have had no complications or problems (other than the expected post-op pain & recovery) & give high praise to the entire team. From the pre-op nurses, to the anesthesiologist who sang during surgery, to the surgeon, to our wonderful post-op nurse: ALL did an amazing job. THANK YOU!
------------------------
Surgery notes:
Lee is on anti-coagulants because of his mechanical aortic valve. This makes even the simplest of surgeries, more complex. To make matters even MORE exciting, Lee doesn't follow the "norm" when it comes to drawing down or ramping up his anti-coagulant medication. He can't be without an anti-coagulant or his blood could form a clot in the mechanical valve (and that would be very, very bad ... as in deadly.) The prescribed protocol is to stop the oral medication about 4 days before a surgery (or certain medical procedures) The patient then injects himself in the belly, twice daily, with a short acting (12 hours) anti-coagulant (Lovanox) up until the day of surgery. After the surgery, the patient begins the oral medication again along WITH the Lovanox injections in the belly for another 4 or 5 days.
Lee is not "normal." Ha! My kids will love that!
His chemistry requires him to begin his injections 6 or 7 days ahead and continue them for 7 or 8 days post op. He has had to cancel and reschedule 2 surgeries because of problems with getting the correct coagulation combination. It's not a fun process. His poor belly looks like it's been used as a punching bag. He's black and blue and yellow and purple. I am always amazed at how calmly and patiently he goes through this process. He is made of tough stuff, he is!
When the surgeon (let's call him Dr. H) came out after the procedure, he told me that everything went really well, Lee slept through the whole thing, and that there were no surprises. Hallelujah!!
When LEE came out of surgery and we went to his room for a little R & R, he told me he was awake during the entire thing. He said his eyes were closed & he was relaxed but he heard the doctor (I think it was the anesthesiologist) singing to the oldies that were playing in the O.R. He heard the nurses talking back and forth and the most interesting thing (to HIM --- I was horrified) was listening to Dr. H as he examined the wires (leads) and plugged in the new device. One of the leads was too short so Dr. H had to put in a new, longer one. Lee could hear the crimping tool being applied. He also felt the pressure and scraping sounds of the scar tissue being removed in the "pocket" in his chest where the new device would be implanted. YOW!!
The very worst part of the recovery was the "pressure bandage" he was required to wear for 48 hours. I just had to put a picture in to show how big this thing was. The purpose was to apply pressure to the "wound" to prevent excessive bleeding or a hematoma. Because of the aforementioned coagulation issues, this was an "ounce of prevention." Just imagine: a freshly scraped up muscle and incision with a 2 inch block of rigid styrofoam being pressed down into that wound ... for 48 hours. Once Lee was free from that, he stopped the pain medications and only had to take Ibuprofen.
He looks pretty happy, but that's only because I was about to peel off that pressure bandage. Then, after a pain pill, he felt MUCH better.
ONWARD ...
Psalm 40:1 "I waited patiently for the LORD; He turned to me and heard my cry."
On February 15, the Mayo Clinic doctors accepted Lee as a heart transplant patient. We had only 2 requirements to complete prior to officially being listed.
1) Have a dental exam & evaluation confirming there is no infection of the mouth, teeth or gums. (We found a local dentist in Buckeye that we would HIGHLY recommend to anyone needing dental care. They took care of Lee right away and were extremely helpful, caring, AND QUICK to get the required documentation to the Mayo Clinic.)
2) Get the Shingles vaccine. Once the shingles vaccine was given, we would be required to wait 30 days before Lee could be listed on the transplant list because the vaccine is a live virus.
The BAD: the primary care doctor knew ahead of time that this would be a requirement. As soon as we were accepted, we called and left messages (multiple times) with no call backs. The weekend hit, so we emailed the doctor (a new system with the VA & it works quite well SOME of the time.)
The UGLY: a week later and after a trip down to the VA (35 miles from home) we STILL had not gotten an appointment for the shot. There were more phone calls & FINALLY we had a date set (but only after requesting help from the patient advocate.) It was a full 2 weeks before that little task was completed. A two week delay for being listed. SAD .... and quite frustrating.
The GOOD: In the midst of all of this craziness, Lee's ICD needed to be replaced. There is a battery life on all pacemakers and defibrillators & his was in need of replacement. We want to make sure there's enough "juice" left in the defibrillator to ZAP him if he needs it! We had previously scheduled this day surgery & it was performed on March 25 in the Cath Lab at the VA in Phoenix. The doctor was amazing. He is also a surgeon at St. Luke's Medical Center in Phoenix and highly regarded. He completed the surgery in under an hour and Lee was home by 7pm. We have had no complications or problems (other than the expected post-op pain & recovery) & give high praise to the entire team. From the pre-op nurses, to the anesthesiologist who sang during surgery, to the surgeon, to our wonderful post-op nurse: ALL did an amazing job. THANK YOU!
------------------------
Surgery notes:
Lee is on anti-coagulants because of his mechanical aortic valve. This makes even the simplest of surgeries, more complex. To make matters even MORE exciting, Lee doesn't follow the "norm" when it comes to drawing down or ramping up his anti-coagulant medication. He can't be without an anti-coagulant or his blood could form a clot in the mechanical valve (and that would be very, very bad ... as in deadly.) The prescribed protocol is to stop the oral medication about 4 days before a surgery (or certain medical procedures) The patient then injects himself in the belly, twice daily, with a short acting (12 hours) anti-coagulant (Lovanox) up until the day of surgery. After the surgery, the patient begins the oral medication again along WITH the Lovanox injections in the belly for another 4 or 5 days.
Lee is not "normal." Ha! My kids will love that!
His chemistry requires him to begin his injections 6 or 7 days ahead and continue them for 7 or 8 days post op. He has had to cancel and reschedule 2 surgeries because of problems with getting the correct coagulation combination. It's not a fun process. His poor belly looks like it's been used as a punching bag. He's black and blue and yellow and purple. I am always amazed at how calmly and patiently he goes through this process. He is made of tough stuff, he is!
When the surgeon (let's call him Dr. H) came out after the procedure, he told me that everything went really well, Lee slept through the whole thing, and that there were no surprises. Hallelujah!!
When LEE came out of surgery and we went to his room for a little R & R, he told me he was awake during the entire thing. He said his eyes were closed & he was relaxed but he heard the doctor (I think it was the anesthesiologist) singing to the oldies that were playing in the O.R. He heard the nurses talking back and forth and the most interesting thing (to HIM --- I was horrified) was listening to Dr. H as he examined the wires (leads) and plugged in the new device. One of the leads was too short so Dr. H had to put in a new, longer one. Lee could hear the crimping tool being applied. He also felt the pressure and scraping sounds of the scar tissue being removed in the "pocket" in his chest where the new device would be implanted. YOW!!
The very worst part of the recovery was the "pressure bandage" he was required to wear for 48 hours. I just had to put a picture in to show how big this thing was. The purpose was to apply pressure to the "wound" to prevent excessive bleeding or a hematoma. Because of the aforementioned coagulation issues, this was an "ounce of prevention." Just imagine: a freshly scraped up muscle and incision with a 2 inch block of rigid styrofoam being pressed down into that wound ... for 48 hours. Once Lee was free from that, he stopped the pain medications and only had to take Ibuprofen.
He looks pretty happy, but that's only because I was about to peel off that pressure bandage. Then, after a pain pill, he felt MUCH better.
ONWARD ...
Psalm 40:1 "I waited patiently for the LORD; He turned to me and heard my cry."
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