PLEASE take a few minutes to go to the link below and read the article. I could never express the process, feelings, stress, gratitude as well as is done in this read. There is much good information here and I encourage you to pass along the information to others. It is another good reminder also to please consider being an organ donor and encourage others to do the same. A heart donor must be 45 years of age or LESS.
A good heart: An organ transplant and a hidden message www.azcentral.com
Friday, May 9, 2014
Tuesday, April 29, 2014
Prayers are answered. PTL!
This is life on the Heart Transplant Waiting List. We have our ups, our downs, our winding paths of uncertainties. Today, Lee was scheduled for a right heart catheterization to measure the pressures inside his heart. The procedure is not without risk and we were told to expect to spend at least one night in the hospital & very possibly much longer.
Because of the prayers of many, the procedure went flawlessly, and with the best result we could ask for. The doctor said his pressures are "not good," have worsened since the last cath (in December) but are still in the "ok to go home" range. Lee and Guido (see 12/04/2013 post) are still together and will stay on milrinone for now. Lee is feeling fairly well, just very tired.
Thank you all so much for your thoughts, texts, emails, cards, calls, visits, love, and most all, prayers. They mean so very much to us. Please continue to pray for us, and for a new heart for Lee soon.
Praise the name of the Lord; for His name alone is excellent. Psalm 148:13
Because of the prayers of many, the procedure went flawlessly, and with the best result we could ask for. The doctor said his pressures are "not good," have worsened since the last cath (in December) but are still in the "ok to go home" range. Lee and Guido (see 12/04/2013 post) are still together and will stay on milrinone for now. Lee is feeling fairly well, just very tired.
Thank you all so much for your thoughts, texts, emails, cards, calls, visits, love, and most all, prayers. They mean so very much to us. Please continue to pray for us, and for a new heart for Lee soon.
Praise the name of the Lord; for His name alone is excellent. Psalm 148:13
Wednesday, April 23, 2014
April 22, 2014 - another side trip on the journey
For the past month or so, Lee has not been feeling very well. It's subtle at first. A little less energy in the afternoon, sleeping longer in the morning, trouble focussing. My radar goes up & I begin to check his blood pressure more often, ask him more questions about how he's feeling, watching his appetite, listening when he's sleeping, waiting for him to wake up. Two weeks ago, at the Mayo appointment, we mention that he seems to be more lethargic but at that point, we weren't sure if this is the "new normal" ("normal" changes for us on a regular basis) or perhaps just residual weakness from the bacterial infection & treatment in March.
Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Shortly after the last Mayo appointment, the symptoms became a little less subtle and the routine for Lee has fallen into: getting up from bed between 9am - 10am, eating some breakfast & reading, back to bed before noon to sleep for an hour or 2, back up and around for a few hours, another 2 hour nap in the late afternoon, then dinner and off and on dozing until bedtime. Pretty exciting, eh? His blood pressure has been coming down as well; averaging around 90/60. Medication changes back in September and again in December, had brought his bp up from 82/58 to the high 90's/mid 60's. This has been a good bp for Lee. Yesterday, at the appointment, his bp was 82/60. There are also subtle changes in the labs done yesterday. It's tricky business determining when it's time for more tests and procedures.
It's possible that the milrinone (which Lee calls "rocket fuel", quoting Dick Cheney from his book "Heart") is losing its effectiveness. Lee says the rocket (his heart) is now re-entering the atmosphere and decay has begun. We have to use analogies that make sense to us and have a little fun with it too.
The doctor had Lee reduce the dose of one of his heart medications (Carvedilol aka Coreg) to see if that would help reduce some of the extreme fatigue. He had already reduced the dose earlier this year as his heart failure symptoms increased. It's odd how the same drugs that have prolonged his life and quality of life are now contributing to his extreme fatigue.
The doctor had Lee reduce the dose of one of his heart medications (Carvedilol aka Coreg) to see if that would help reduce some of the extreme fatigue. He had already reduced the dose earlier this year as his heart failure symptoms increased. It's odd how the same drugs that have prolonged his life and quality of life are now contributing to his extreme fatigue.
On Tuesday morning, Lee will have another procedure done at the Mayo. The procedure the doctor will be doing is a "Swan-Ganz right heart cath." Swan-Ganz catheterization is the passing of a thin tube
(catheter) from the vein in the neck, into the right side of the heart and the
arteries leading to the lungs to monitor the heart's function, pressures, and
blood flow. We were told to expect to stay at least one night in the
hospital after the procedure.
Depending on the findings, the doctors will determine which of the following will be best for Lee:
1) increase the milrinone doseage ( we can increase it one more
level)
2) swap out milrinone for another inotrope, dobutamine (this med
is sometimes better at keeping blood pressure up a little)
3) keep the "Swan" (neck catheter) in place, give both
inotropes, milrinone AND dobutamine intravenously.
The third option, will require staying in the hospital until a
heart is available for Lee. It will put him on the transplant list as 1a.
1a is the status for the most urgently needed hearts. It's good, in
that it means Lee will get a heart sooner than later. It's hard because
it means staying in the hospital until that time. That's no fun.
*** an update on how Lee is feeling. He is actually
feeling better this afternoon (with no nap!!) He normally takes
Carvedilol twice per day, so last night he took the lowered dose and this
morning as well. Perhaps we will be able to delay the heart cath
procedure?? We know that this IS the path we will be going down, whether it is
next Tuesday or next month or ... ... ...
We are steadfast in our faith in the Lord and His plan for us. It
is still a difficult journey. Your prayers and support are coveted more
than you can imagine.
Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Tuesday, April 8, 2014
Lee is back on The List!!
Lee is back on the Heart Transplant Waiting List, as a 1b.
On Friday, we made a run up to the Mayo Clinic to have blood drawn to be cultured for infection. That's a little different from the normal labs Lee has drawn. The blood is drawn from both arms (2 vials each) very slowly. Lee says the bottles they put the blood into look like tabasco bottles. As of this afternoon (96 hours later) there is NO sign of any bacteria/infection in his blood. Praise the Lord!
Lee is feeling much better and is even getting out to walk a little. For now, we will be going to the Mayo every 2 weeks, as he has been on the Milrinone 4 months now and needs close monitoring. Our prayer is that a heart for Lee will come soon. Waiting is hard, but we are continually thankful for family and friends who encourages us, check in on us, call, text, and email us. It does help to keep the spirits up.
We had a nice visit from Lee's brother, Mark last week. The visit had been planned for a couple of months and we were really glad Lee had gotten out of the hospital so he was able to really enjoy the time with Mark. The timing was perfect, as Lee had just infused his last dose of the IV antibiotic when Mark arrived. They had a "guys day" and drove down to Casa Grande to hang out with Seth. It was too short a visit, but we'll take it and cherish it and look forward to the next visit.
On Sunday, my cousin Carole and her husband, Stan stopped by for brunch. They had wintered over in Mesa (about an hour east from us) and were heading north to British Columbia. We jammed a lot of fun & laughter into that short visit!
This week's task is to get some bids on new air conditioning units. What FUN that will be, eh? The days are heating up and our a/c unit is winding down, so we'll be looking to replace it soon.
Matthew 11:28 Come to me, all you who are weary and burdened, and I will give you rest.
On Friday, we made a run up to the Mayo Clinic to have blood drawn to be cultured for infection. That's a little different from the normal labs Lee has drawn. The blood is drawn from both arms (2 vials each) very slowly. Lee says the bottles they put the blood into look like tabasco bottles. As of this afternoon (96 hours later) there is NO sign of any bacteria/infection in his blood. Praise the Lord!
Lee is feeling much better and is even getting out to walk a little. For now, we will be going to the Mayo every 2 weeks, as he has been on the Milrinone 4 months now and needs close monitoring. Our prayer is that a heart for Lee will come soon. Waiting is hard, but we are continually thankful for family and friends who encourages us, check in on us, call, text, and email us. It does help to keep the spirits up.
We had a nice visit from Lee's brother, Mark last week. The visit had been planned for a couple of months and we were really glad Lee had gotten out of the hospital so he was able to really enjoy the time with Mark. The timing was perfect, as Lee had just infused his last dose of the IV antibiotic when Mark arrived. They had a "guys day" and drove down to Casa Grande to hang out with Seth. It was too short a visit, but we'll take it and cherish it and look forward to the next visit.
On Sunday, my cousin Carole and her husband, Stan stopped by for brunch. They had wintered over in Mesa (about an hour east from us) and were heading north to British Columbia. We jammed a lot of fun & laughter into that short visit!
This week's task is to get some bids on new air conditioning units. What FUN that will be, eh? The days are heating up and our a/c unit is winding down, so we'll be looking to replace it soon.
Matthew 11:28 Come to me, all you who are weary and burdened, and I will give you rest.
Tuesday, March 25, 2014
Home From the Hospital
Well! That was exciting. Not the kind of excitement I'd like to repeat anytime soon though. Most of the details are covered in the previous posts, and on Katie's blog: http://mcpheeandme.blogspot.com/ As long as Lee is on an antibiotic or there is any chance of him being infected, he will be off the active Heart Transplant Wait List and be placed as a Status 7 (inactive/not eligible for transplantation.)
The staph infection was identified as the hominis strain. While still dangerous to have in the bloodstream, it is a relatively "wimpy" (this is the term used by the infectious disease doctor) bacteria, which generally can be treated with the antibiotic, Vancomycin. After Lee had been on Vancomycin for 2 days, blood cultures were done again. When the cultures were still negative for bacteria after 48 hours, a new PICC line was placed. This then allowed us to switch back over to "Guido," Lee's backpack that carries his continuous pump IV medication, Milrinone. When the nurse put the PICC line in, she also included an extra port for drawing labs or for administering another IV medication. This extra port is where we are able to give the IV Vancomycin at home.
The plan is to stay on the IV Vancomycin for 2 weeks at home. When that is completed, we will go to the Mayo for more blood cultures. If the cultures are negative after 5 days, Lee will once again be listed on the Heart Transplant Waiting List as a 1b patient.
Today, Tuesday March 25, our home healthcare nurse came to instruct us on how to administer the Vanco (most of the nurses use this nickname.)
In the photo above, you can see a device (upper left) that looks like a globe with tubing coming out of it. That container holds the Vancomycin. The globe holds the medicine and there is a small pressurized pump in the center that delivers the medication through the tubing and into the port in Lee's upper arm. Our very dear friend, Bert, who lives in North Carolina, has also been in the hospital with a bacterial infection & was released on the same day as Lee. He will be doing the same IV medication routine as Lee, so we had a little fun with them. It's Spring Training time here in Arizona, so PLAAAAAY ball!!
We want to thank all who have been praying for us and for the many texts, emails, phone calls and words of encouragement. Your support is SO very important to us. We are truly grateful and humbled.
The staph infection was identified as the hominis strain. While still dangerous to have in the bloodstream, it is a relatively "wimpy" (this is the term used by the infectious disease doctor) bacteria, which generally can be treated with the antibiotic, Vancomycin. After Lee had been on Vancomycin for 2 days, blood cultures were done again. When the cultures were still negative for bacteria after 48 hours, a new PICC line was placed. This then allowed us to switch back over to "Guido," Lee's backpack that carries his continuous pump IV medication, Milrinone. When the nurse put the PICC line in, she also included an extra port for drawing labs or for administering another IV medication. This extra port is where we are able to give the IV Vancomycin at home.
The plan is to stay on the IV Vancomycin for 2 weeks at home. When that is completed, we will go to the Mayo for more blood cultures. If the cultures are negative after 5 days, Lee will once again be listed on the Heart Transplant Waiting List as a 1b patient.
Today, Tuesday March 25, our home healthcare nurse came to instruct us on how to administer the Vanco (most of the nurses use this nickname.)
 |
| Part of the supplies for our new daily routine. |
 |
| VANCO-ball!! Comin' at ya, Bert! |
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| Got it! Now back to you, Lee! |
... so that the tested genuineness of your faith -- more precious than gold that perishes though it is tested by fire -- may not be found to result in praise and glory and honor at the revelation of Jesus Christ. 1 Peter 1:7
Saturday, March 22, 2014
Update at the Mayo Hospital
First of all, Lee & I want to thank all of you for your prayers. We have prayers and are on prayer chains from Canada to Mexico, from the West Coast to the East Coast and from the states of: WA, OR, CA, ID, NV, AZ, MT, VT, NY, NC, GA, PA ... and I'm certain there are more. Truly, it is humbling and amazing. The Lord heard them and as of now, Lee does not have any signs of bacteria in his heart. PRAISE OUR LORD. Thank you all so much for the texts, email, cards and encouragement. Each and every one is very very much appreciated.
On Thursday, a T.E.E. (Transesophageal Echocardiogram) was performed on Lee. The procedure uses a scope inserted into the throat to look at the heart valve and surrounding tissue. Lee has a mechanical valve (graphite) and also an ICD with pacemaker, including 3 leads (wires), which makes it easy for bacteria to stick and grow on the non-organic materials. Endocarditis (inflammation /infection of heart lining) is a grave concern with the bacterial infection in the bloodstream. It is difficult to treat and requires longer courses of antibiotics to treat.
His PICC line was pulled and that was cultured and checked for bacteria also. It tested positive which was not surprising but also led to greater possibility of the heart being infected.
By Friday afternoon we were told that the heart looks clear of infection. More blood was drawn to be cultured every 24 hours for the next 5 days. We need to have 48 hours of negative results for bacteria and then the new PICC line can be placed. The Infectious Disease doctor is monitoring the process and comes to see us once or twice each day. He said the staph bug was one of the wimpy strains so that is even better news. They identified a couple more strains of bacteria and all can be effectively treated with the Vancomycin that is currently being administered.
If all goes perfectly well (continued prayers for this please), Lee will be released from the Mayo Hospital on Monday. We will be giving Lee iv antibiotics at home for 2 weeks, then back for another T.E.E. and more blood cultures. When all is clear, he can then be placed back on the heart transplant list.
Last evening, Lee was feeling less tired and had less aching in his muscles so the antibiotics seemed to be clearing the bacterial infection. Today he is feeling better still. He is glad to have March Madness to keep him occupied somewhat.
On Thursday, a T.E.E. (Transesophageal Echocardiogram) was performed on Lee. The procedure uses a scope inserted into the throat to look at the heart valve and surrounding tissue. Lee has a mechanical valve (graphite) and also an ICD with pacemaker, including 3 leads (wires), which makes it easy for bacteria to stick and grow on the non-organic materials. Endocarditis (inflammation /infection of heart lining) is a grave concern with the bacterial infection in the bloodstream. It is difficult to treat and requires longer courses of antibiotics to treat.
His PICC line was pulled and that was cultured and checked for bacteria also. It tested positive which was not surprising but also led to greater possibility of the heart being infected.
By Friday afternoon we were told that the heart looks clear of infection. More blood was drawn to be cultured every 24 hours for the next 5 days. We need to have 48 hours of negative results for bacteria and then the new PICC line can be placed. The Infectious Disease doctor is monitoring the process and comes to see us once or twice each day. He said the staph bug was one of the wimpy strains so that is even better news. They identified a couple more strains of bacteria and all can be effectively treated with the Vancomycin that is currently being administered.
If all goes perfectly well (continued prayers for this please), Lee will be released from the Mayo Hospital on Monday. We will be giving Lee iv antibiotics at home for 2 weeks, then back for another T.E.E. and more blood cultures. When all is clear, he can then be placed back on the heart transplant list.
Last evening, Lee was feeling less tired and had less aching in his muscles so the antibiotics seemed to be clearing the bacterial infection. Today he is feeling better still. He is glad to have March Madness to keep him occupied somewhat.
Friday, March 21, 2014
A Bump in the Road
Lee is in the Mayo Clinic Hospital, but NOT for a transplant. This is the life of waiting for a new heart. Lee has a bacterial infection in his bloodstream (sepsis.) The most likely cause is that bacteria entered through his PICC line. Even with all the precautions we take (very sterile conditions when changing the dressing once/week, hand washing to extreme ...) it is not uncommon for this to happen.
PLEASE GO TO: http://mcpheeandme.blogspot.com/ for more information. My brain is a little fuzzy this morning and our daughter, Katie posted all the details and prayer requests on her blog. THANK YOU, Katie!!
.... and now, back to the hospital.
PLEASE GO TO: http://mcpheeandme.blogspot.com/ for more information. My brain is a little fuzzy this morning and our daughter, Katie posted all the details and prayer requests on her blog. THANK YOU, Katie!!
.... and now, back to the hospital.
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