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.
Sep 26, 2016
It has been forever since I posted here. Things have gotten progressively worse in Colleen's condition. She had not been feeling at all well for quite some time. She was unable to keep food down and was eating very little. This caused us a great deal of concern. She was so ill one night that we took her to the emergency room and she was admitted to the hospital. She was there for over two weeks. It was discovered that she had Gastroparesis. This basically means she has very slow digestion. This is caused by her liver condition which was getting worse. During her stay, her meld score went up to 30. At this point the doctors agreed she should be transported to the Cleveland Clinic. We left the local hospital 2 nights ago at 11:30 pm. by ambulance. It is almost 500 miles to Cleveland and she and I arrived there at 7am Sunday morning. My husband drove out there a few hours later. She has received excellent care since she arrived. This place is amazing. She has had many doctors, nurses and aides in and out of her room. Whenever she rings her buzzer someone is right there.This morning we met with the Transplant Team. She was told that her meld score and her condition puts her on the top of the list for a liver transplant. Dr. Cary, the G.I. doctor here told her it should be very soon. She will remain in the hospital until that time. She has become very weak and right now it is best for her to remain there. She is also getting physical therapy as the doctor says it is important before the surgery. My husband and I were lucky to get a little apartment near the hospital. It is called The Transplant House of Cleveland, a non profit organization. It is fully furnished. It costs us $60 per night. Since we will be here for at least 2-3 months, we are concerned about the cost as there are so many other expenses she has. After her transplant, she will be in the hospital for probably 2 weeks then she will also stay here with us for possibly 6 weeks. She needs to be near their hospital to be checked at least once a week and have lab tests done as well. We are required to be here with her as she needs a caregiver. They also want to see my presence at the hospital every day. So thankful my husband Al is here and he also is involved in her care. I honestly don't know what I would do without him. Colleen is in really good spirits in spite of her condition. She is so happy that she in finally going to get a new liver. She is so brave and her faith in God has been so strong. She has never had any doubt that this was going to happen. We do have many concerns about what the costs will be. I plan to look into this further especially the costs of the anti-rejection drugs. She has a very limited income and we are so thankful for all the funds that have been raised so far. Many people worked hard to make her fundraiser a huge success and it is reflected here. She is very appreciative to all the people who have sent in individual donations as well. Please continue to keep her in your prayers. So thankful for each and every one of you for your support as well as all the prayers that have been lifted on her behalf.
Aug 06, 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...
Aug 01, 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...
Jul 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...
Jul 06, 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...
May 23, 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....
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....
May 08, 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. ...
Jan 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...
Dec 10, 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...
Nov 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...