November 12, 2016
Things have progressed since I last updated here. It has been an emotional whirlwind to put it mildly. The best that could have happened did happen. COLLEEN RECEIVED A NEW LIVER. Just 3 days after arriving at the Cleveland Clinic, she was told they had a match and since the donor was brain dead, they could do the transplant the next morning. We were just blown away, and in fact, I still get tears in my eyes whenever I think of how things played out this past month. The theme here is God had a plan and we saw the whole thing play out. It truly was a miracle to say the least. All my doubts of if she would ever get her transplant, seem like a total waste of my time. I truly was a doubting Thomas. Let me explain why, and perhaps you will understand.
1. Colleen’s condition was getting worse by the day. She was much sicker than most realize. Besides needing a new liver, other organs were being severely effected. Most of the concern besides her liver, were her kidneys. Her kidneys were in stage 3 and close to becoming stage 4. This often happens as your liver gets worse. NEWS FLASH: Her kidneys have bounced back.
2. While I haven’t mentioned this before, she was also suffering from Hepatic Encepalopathy. There were many times, she had trouble thinking clearly, and she wasn’t herself. This would come and go and was becoming more frequent. It became apparent early on that I would need to do much of what she couldn’t do. Besides all her medical issues, I had to handle her finances, make sure she took the necessary meds. Make sure she ate the proper foods. Make her doctor appointments and consult with the Transplant Team. I was reassured by the medical community, that this would all go away once she was transplanted. GOOD NEWS: She is returning to her old self.
3. It was more than frustrating getting her on the list. With many bumps along the way, she was finally listed. Being listed changed everything, and it didn’t seem to be in a good way. I soon learned that we had to be ready to get her to their facility at a moments notice. We would have less than 4 hours to get there. We understood that they would arrange for an air flight when a liver became available. THIS WAS NOT HOW IT WAS TO BE. We would have to make arrangements with a private company ourselves to get her there. This would cost between $10,000 and $13,000. There were some non-profit organizations that would be free, but I called several and the time frame would have been very difficult for them. It was all so complicated and we would never know if a plane would even be available at the time we needed them. Our next option we had finally decided on was to relocate to Cleveland temporarily. It would have been expensive, but it would have meant she had a better chance of getting her transplant, because we would be there.
4. As God's plan unfolded, we could see that He truly was in control. Colleen told me while in Glens Falls, she was feeling very down and she prayed to God and told him she was leaving it all to Him. Nothing seemed to be going her way. A day later she found out she was being transported to Cleveland due to the recent jump in her meld score and Dr. Yarze felt it was a good sign that she would get a liver very soon while there.
It has now been 6 week since her transplant. We had to stay in Cleveland for a month to make sure all was going well. We are now home and she is doing great. All of her bloodwork since the transplant shows the new liver is functioning very well. She does, however have to be very careful of germs as her immune system isn't great right now. Also, she is having a problem with her eyesight. She can't see well and has been diagnosed with Cystoid Macular Edema (fluid in the macular retina area of both eyes). She has seen a retina specialist and is receiving treatment. Hopefully it will clear soon. We will be going back to Cleveland for an appointment with the transplant team on December 14. Thank you again to everyone who has donated and has prayed for her. We are all so appreciative of all of your support. She still has many expenses but the funds she has received so far as well as the fundraiser has helped tremendously. Again, I can't thank you all enough.
August 6, 2016
On July 18 the Hartford Council of Churches held a fundraiser for Colleen. It actually was a joint effort by many people including the Town Band. Over 100 items were donated by businesses and organizations for a silent auction. It is hard to know who to thank because so many people helped to make this fundraiser a giant success. It was held at the firehouse in Hartford. Besides the wonderful band and singers who participated, we also had Phil Jessen as Abe Lincoln. The people who organized this had a huge task, and it was a lot of work, but they managed to create a wonderful event. There were baked goods and hot dogs plus Stewarts Ice Cream. It seemed like the whole town showed up as well as family and friends. Colleen was just thrilled and we can't thank everyone enough. Thank you, thank you, thank you from the bottom of our hearts. God bless each and everyone of you!
August 1, 2016
Colleen finally is listed on the Transplant list for a new liver at the Cleveland Clinic. It seems like it has taken a long time to get there, but she finally made it. Now we will need to gather all the information from them as to what is expected of us. I'm sure there is much to this. We haven't delved into all of this as we have just been taking everything in stride, one day at a time. However, now we will need to change our focus on what we need to do when a liver becomes available to her. There is to be an air transport that will take her there and I will probably be the one to go with her. This is very costly and we are going to find out what is covered by her insurance, if anything. When she receives her liver, she will be a patient in the hospital there for about 2 weeks. During that time, Al and I will find housing so we can be close to the hospital. It is required that someone be there and be at the hospital with her, throughout the day. After she is discharged, we will need to be within close proximity to the hospital. I think you can be 30 miles or so away, but need to stay close enough in case there are any problems. Plus, she will need bloodwork regularly and will have a weekly appointment at the clinic. This will be for an additional 4 to 6 weeks. In light of all that has been going on in the past, we have not had time to check into all this. However, we will be receiving some information in the mail very soon, and someone is assigned to her case who will be contacting us shortly. All this is very exciting, but at the same time it is a little scary as well. She was also asked if there were any family members or friends willing to donate part of their liver for her. Now is the time to let her know. Please know that she is not asking anyone to do this for her. But she has had a couple of people who have mentioned the possibility. I will add that you must be 55 or younger and have blood type A or O. Other stipulations also that I am unaware of. Please keep her and also us in your prayers. As I've said in the past it is a bit overwhelming at times and it's about to become even more so.
July 12, 2016
We just returned from the Cleveland Clinic. It was a very long, but productive day. Colleen's been cleared finally to be on the list for a new liver. She was deferred back in April when it was discovered that she had a heart condition called SVT. Before being approved for a liver transplant she needed to see their cardiologist. She had an appointment for June 9, and unfortunately the cardiologist had to reschedule the appointment. Of course, we were disappointed because we knew she would probably be on that list, had this recent change in her health status not happened. We finally met with the cardiologist yesterday, July 11, as well as the liver doctor (gastroenterologist). We are very happy to report that both doctors have now approved her for the liver transplant and the liver doctor is recommending to the board that she be listed. The cardiologist explained that they could not list her until they were sure she could survive the transplant. Though we have been discouraged at times, we understand the need to make sure she will make it through the surgery. Both doctors agree that she should indeed be listed as soon as possible. The board meets every Friday and we are hoping we will know by Monday if she is on the list. I know this has been going on now for some time, but at this point we are the most hopeful we have been so far. Keep praying that she makes the list. Our friends and family mean so much to us and we really appreciate all your prayers on Colleen's behalf.
July 6, 2016
It has been awhile since I last posted. We just returned from Massachusetts General Hospital last Friday. Colleen met with three different specialists. It turned out to be a good day, and it was very informative. We feel we are moving forward, but there is so much red tape and hoops to jump through. We had a very good trip, and Colleen did very well traveling. Next Monday, July11. we will meet with the Transplant team at Cleveland Clinic. So, we will leave here on Saturday in order to give her a day to relax before her appointments on Monday. Will update again after her appointments in Cleveland.
May 24, 2016
Strange how things can change for a person overnight. We had these great plans to combine a trip to Massachusetts General Hospital with a nice little RV stay at Salisbury Beach State Park. Unfortunately, as many already know, we were unable to make that trip. A few days before we were due to leave, Colleen felt great, and she was excited for a little vacation at the beach. We were all looking forward to some lobster, as well as some walks on the beach before going to Boston to see the Cardiac Specialist. Unfortunately, the very next morning after feeling so good, she collapsed in her room. She was non responsive, so we immediately called 911. These last 10 days have been pretty rough. She was on a ventilator and remained unconscious for a few days. Her ammonia levels had gotten very high and this was the reason she was in this condition. She had been doing everything right and taking all her meds, even the dreaded Lactalose. We couldn't understand how this could happen. Like I said, it has been a rough 10 days. She will have a good day, and you feel like she is getting better only to have a set back the next day. Her ammonia levels have now dropped to a safe level and the doctor said today that she should be coming home soon. We will need to re-schedule her appointment in Boston, but meanwhile we are making plans to go to the Cleveland Clinic on June 8 to see a cardiologist there. Please continue to pray for her. This was a very scary thing to go through with her. We are praying she will be on the list very soon. Her meld score has gone up considerably, which should qualify her to get on that list. People keep asking if she is on the list, and it is so frustrating that it has taken this long. However, many many people are also waiting just to get on the list. Hard to believe she isn't sick enough to make the list, but that is how it is. Your prayers are so appreciated, as well as any amount you feel you may be able to donate. Besides all her health issues, one of the most worrisome things is figuring out how she can pay for everything.
May 12, 2016
We have been rather busy lately keeping up with doctor appointments and procedures. There is so much we need to do lately. Colleen has had some bad days and hasn't felt all that well at times. Today she is having a great day. We are busy packing to go on a little trip together in our RV. She has an appointment next Friday, 5/20 in Boston at Mass General Hospital. She is hoping to be listed on both their transplant list as well as Cleveland. She has an appointment there with the cardiologist. We thought since she loves the ocean, we would go to Salisbury Beach, and enjoy the ocean and hopefully some lobster. Salisbury Beach is only 43 miles from Boston, and this is a place my husband and I have gone to many times. We decided we would like to treat her for her bravery through all of this. Please pray for her that she will feel well while there. She really needs this little diversion right now. She has understandably been down at times, especially when both Cleveland and Boston have such stringent requirements that it sometimes seems like we will never cut through the red tape. We understand the importance of it all, but it's very hard to not feel the frustration. Thank you everyone for all your words of encouragement and all the prayers and donations. We appreciate it more than you can know.
May 8, 2016
I am Colleen's sister Nita. I am now her main caregiver. Sorry this has not been updated in awhile. Colleen is still waiting to be put on the transplant list. It has been a long struggle for sure. Colleen had a little setback before heading to the Cleveland Clinic on April 27. It was discovered that she had a rapid heartbeat and she was diagnosed with SVT. This is not considered serious and her primary doctor here doesn't feel it should prevent her from having a liver transplant. She is now on medication for it. She had a liver MRI while at the Cleveland Clinic and we met with her gastroenterologist as well as a social worker. Since I am new to all this, she wanted to go over everything with my husband and I. The gastroenterologist says her lesions were stable and her Meld Score had gone up from 12 to 19. This is good because it makes it more likely she will be on the list very soon. Unfortunately, due to the fact that she now has a heart condition, we have to go back on June 9 to see the cardiologist. Due to the timing, we couldn't see the cardiologist until then. Even though she did see a cardiologist here, she needs to be seen by theirs. It is a long 8 hour trip (without stops). We weren't looking forward to going there so soon, but we will do whatever is necessary to insure her getting on that list as soon as possible. All this is very stressful to her and traveling is not easy for her. Please keep her in your prayers. Later this month, we will be going to the Massachusetts General Hospital. She is hoping to be on both lists. This seems to be a long process, but I am sure they have to make sure everything is safe for her to have the transplant. She is facing many expenses and they are ongoing. Already, she has incurred some major expenses and when the time comes, she will have to pay for an air transport from here to there. This will cost from $6000-$8000. Her anti-rejection drugs (especially in the beginning), are very high. I'm not sure how much her insurance will cover, but so far, I'm finding that insurance for this type of thing is bare minimum. Any amount will help her. Asking for money is not something I like doing. My husband and I have already used our own funds for some of her expenses. All the money raised on this site, has to go for her medical expenses or expenses related to her illness. She will submit vouchers proving all expenses. This also insures that she won't be taxed on any of it. It is sanctioned by NYS unlike a Go Fund Me account. We wanted to make sure this is all legit.
January 24, 2016
Colleen & I just returned from the Cleveland Clinic yesterday after a week of intensive testing for Colleen. Everything went well. The Transplant team meets every Fri, to nominate people for potential liver transplants. We're hoping Colleen will go before the selection committee this coming Fri. When the time comes for Colleen to receive the transplant, they will charter a flight which will cost between $6000-$8000 providing no special equipment is needed for the flight. We're not sure at this point, weather Medicare Part B, and/or United Health Care will cover any of this expense. We're very encouraged by what we were told at the Clinic. There very aggressive in procuring livers for potential liver canadates. Please continue to keep both of us in your prayers, and whatever God may lay upon your hearts as a monetary donation. God Bless and will continue to update as necessary.
December 11, 2015
I spoke with The Cleveland Clinic this afternoon, and Colleen's Liver Transplant Evaluation will take place the week of Jan 18-22, 2016, as per my previous update, when she was scheduled to go there Dec 28-Jan1.
November 29, 2015
To all of Colleen's & my friends. Here's the latest update on Colleen's situation. Colleen is still awaiting some cardiology stress tests so she'll pass muster (for lack of a better term) to be listed on Mass General's liver transplant list in Boston. We also anticipate going to The Cleveland Clinic of Excellence in Ohio the last week of Dec. for a week of testing, and hopefully Colleen will also be listed on their liver transplantation list. Colleen, to date has her good days and bad ones. It's so painful to watch what my poor wife is going through with this horrendous NON-ALCOHOLIC LIVER DISEASE. As everyone can well imagine, the costs of liver transplantation and post transplantation with the anti rejection medications she will have to be on for the rest of her life will be astronomical. I implore you to search your hearts and with God's leading, monetary donations will be so appreciated to this wonderful HelpHOPELive organization who handles all donations for the associated costs of Colleens treatment. They are IRS sanctioned. Thank everyone for your generous gifts and prayers on Colleen's behalf.
