October 2, 2017
We were expecting Kevin to have a bronchoscopy today but it turns out it was scheduled for tomorrow. This is routinely scheduled for three weeks post transplant to do a biopsy to check for any rejection.
Kevin still has two chest tubes. This is all that is keeping him in the hospital. They cannot remove them yet due to the pneumothorax that he has. They increase and decrease in size.
Today they will put the right one on wet seal and keep the left one on suction. If the X-ray indicates that they remain stable then the may remove the right tube. That would bring him one step closer to home.
We appreciate your continued prayers for healing and recovery.
September 22, 2017
Kevin continues to heal. Pain is becoming more of an issue since they removed his epidural. Everything is s process of reevaluation.
This morning he is having a bronchoscopy. Hopefully this will relieve some congestion.
Later we will meet with the pharmacist for med training. We are still trying to sort out issues with certain Meds that are thousands of follies more than we were originally quoted.
We appreciate your continued thoughts and prayers.
September 19, 2017
Belated update as the previous one was accidentally deleted.
Kevin has new lungs!!
On Wednesday, September 13 we got the call that there was an offer of new lungs. We were advised to arrive at Mass General between 8 and 9 the next morning.
We arrived at 8:15 am and waited till 8:30 pm before they took him to the operating room. At 9:30 I got the call that the new lungs were good and surgery was a "go". The surgery started at 11:30 pm and the doctor called me at 4:30 am to let me know that the surgery was over and Kevin was doing well.
He added that Kevin was fortunate because the lungs were young and a "perfect fit".
I went to the ICU to wait to see him. It felt like forever. At 7:00 am they came to tell me that he had significant bleeding and that he was been taken back to surgery.
More than 4 hours later I found out that the surgery had tea pair two bleeds. Kevin had almost "bled out" internally and we would wait to see what that meant.
Today, four days later, he is breathing on his own WITHOUT oxygen, talking, eating real food, and walking. There is still a lot more healing to do but he is making amazing progress.
He has shed more than a few years of joy and gratitude. Some of his first words when he could talk was to tell his friend who is considering a transplant that "it was worth it!"
We appreciate your contained prayers. Please consider sharing this post and even with organizations that you know or that might help.
August 11, 2017
We were all blessed as a family when Kevin made the decision to be baptized on Sunday, August 6, 2017. Facing debilitating, life-threatening lung disease has brought about many changes for Kevin. Being placed on the transplant list after overcoming many hurdles has filled him with thankfulness. We appreciate all your prayers and support and hope that your share in our joy over this wonderful event.
August 10, 2017
On July 31 we were given the official placement on the transplant list. At that time Kevin was listed as number 16. We are told that the usual wait is about 39 days. That would mean that he could receive a transplant by September 5. This is mind boggling. We have a lot to do to get ready and a lot of money still to raise. This is in God's hands,
July 28, 2017
Wow! This has been quite a journey!! Kevin has had over 90 vials of blood drawn, two major oral surgeries, successful prostate surgery, and a stent due to coronary artery disease!
Tests upon tests have finally readied him for the final journey in this process.
We are thrilled to report that we received word this week that Kevin will be placed on the transplant list tomorrow!!
Details will follow, but we have been told that patients that are listed usually receive a transplant within 39 days. We are also told that it is not unusual to receive the call to go to the hospital for a transplant and then to be sent home if the conditions and/or the lungs are not just right. The doctors take every precaution to insure the best possible outcome.
Please pray for us and with us as we prepare for the next step in this incredible journey!!!
June 9, 2017
We have been in s holding pattern and haven't posted for a while. Today I sit in the waiting room in the cath lab at MGH while they prepare Kevin for the placement of his stent. He is fine but I'm a little anxious. It is considered a routine procedure but his current health increases the risk. After thus we wait for 6 weeks while the blood thinners do their trick. Then we return for 4 appointments on July 19 to redetermine the level of eligibility. Then we wait!! Lots if waiting. Thank you for your prayers and contributions. Both are blessings.
May 2, 2017
Kevin has had some "dumps in the road" toward his lung transplant. First he had to have prostate surgery due to urinary retention. That surgery was successful in spite of a UTI that required that this normally out patient surgery had him in the hospital for four days.
The following week a routine cath lab discovered that he has coronary artery disease that will require a stent to be put in before he can be considered for a transplant. That was scheduled for last Thursday but was postponed until June due to what turns out to be routine bleeding from the prostate surgery. This was considered a risk due to the plavix that he will be on for 6 weeks following the insertion of the stent.
Currently he is scheduled to have the stent inserted in early June which will put the possibility of a transplant out until sometime in the end of July or beginning of August.
One thing that we have learned is that this is a journey of unexpected events and constant changes, We appreciate your continued thoughts and prayers. We are thankful that these health issues were found so that they can be remedied prior to a transplant which is much safer, We leave all these details in the hands of God and trust His perfect timing.
April 20, 2017
During some of the routine testing that Kevin had at MGH on Monday they determined that he has coronary artery disease. This was a big surprise because no preliminary study had indicated a problem. There is a 60% narrowing in the left descending artery. After a combined consultation of all the doctors involved they made the decision not to consider a bypass at the time of transplant but to put in a stent now. He will have this done next week on Thursday and he will be hospitalized at least over night. We will be heading to Boston on Wednesday for some pre-procedure blood work.
This will postpone his possibility of a transplant by at least two months due to the Plavix that he will need to take because of the stent. He has passed every other test and the only thing holding him back now is the artery concern. Once this is resolved we will have a review of his case. This will be scheduled for five weeks after they put in the stent.
When we first heard this news we were both feeling discouraged but we are trusting God's timing. He has been our guide and our comfort and we trust His will. We appreciate your continued pray and support.
April 14, 2017
Thank you for all your thoughts and prayers. Kevin come through the surgery well and come home last night after the completion of the course of antibiotics. He is doing better than he imagined. He had a medication issue that we had to work out with several different doctors but all is well now.
We go to Boston on Sunday and prepare for his last two days of pre-transplant testing. Monday will be the cath labs and Tuesday some follow up tests and an information class. Our son, Patrick, and our friend, Barbara, will be joining us for that class.
It is nice to have friends and family along with us on this adventure.
April 11, 2017
This is definitely an adventure! Yesterday while we were in Boston for pre-transplant appointments we got a phone call from Kevin's urologist in Manchester telling Kevin that he wanted him admitted to the hospital to get IV antibiotics due to a UTI. After our appointments we went straight to Catholic Medical Center in Manchester, NH and Kevin was admitted. We are presuming that this will allow the prostate surgery scheduled for today to go on as planned. This is normally an out patient procedure but due to Kevin's health issues he will be in the hospital for several days after surgery. This will hopefully resolve his urinary retention issues and he will receive a green light for the transplant.
We are trusting God to guide the doctors in all their decisions. We have been greatly blessed by His grace and mercy throughout this process so far and know that the outcome will be His will.
We have added a goal to our fundraising indicator. This may be subject to change but seems to be a realistic starting place.
April 4, 2017
What an exciting week! I last posted March 29 which was day 2 of 4 days of appointments. This week Kevin will have 3 days of appointments. Next week 4 days including prostate surgery. The following week he has 2 days of appointments which will include another overnight stay in Boston. Sometimes it has our heads spinning!! We are thankful to be on this journey and to be on it together. These are the times when we are reminded of what is really important in life.
It is those little moments that seem inconsequential that accumulate to make this a wonderful life. Last Wednesday Kevin looked out the hotel window at the crack of dawn and saw a whole flock of wild turkeys. This was near the city not the country mind you!
And yesterday, as Kevin was feeling a little worn out, we were surprised when the anesthesiologist was so delighted by Kevin's Mets hat that he went down "memory lane" and he recalled his experience during the 1969 World Series!! It was a delight and reminded me that it is the people that we meet every day that make this journey such a delight. God continues to bring these little treasures into our lives.
Our family and friends, our neighbors and church family, and strangers that become friends along the way are the threads that make this adventure such a beautiful tapestry.
We thank each and every one of you for your love, prayer and support. We are so glad that you are on this journey with us.
March 29, 2017
We are in Waltham at MGH West for a full day of testing. This is all for the gastrointestinal system. The transplant team requires that all systems be in working order before they do the transplant.
Yesterday Kevin had a bladder function test in Manchester. We are thanking God that his bladder function is normal. Tomorrow you goes back for smother test and we may be scheduling prostate surgery at that time. That will need to happen before the transplant.
So Tuesday in Manchester, Wednesday in Waltham, Thursday in Manchester, and Friday in Boston. This is tiring for Kevin but he is in good spirits. We have. Lots of time together to talk about life and all good things. Thank you for your thoughts, prayers, and support. It helps us to know that you are with us through this.
March 24, 2017
We are back in Boston for more appointments and tests. The transplant team has specialists from every discipline and they all have to meet with him and contribute to the decision. If any issues are found they will need to be resolved before he can have a transplant. We have found everyone at Mass General to be kind and encouraging and that makes it all so much easier. We appreciate all you thoughts and prayers.
March 18, 2017
Kevin continues to complete items on the required checklist of tests and procedures. This week included a CT scan to determine the size of lungs that he will require. The lab took 27 vials of blood and the oral surgeon took 8 teeth. Is there anything left?!?
