First week in Boston

7/28/09 Went to Boston Medical Center - Moakley Bldg for blood draw to check INR, cholesterol & triglyceride levels. The Moakley bldg is where the Amyloid Treatment and Research Program and Stem Cell Treatment Center are housed.

7/29/09 Today Joe had to have a transfusion of blood platelets due to his INR levels being too high, they will not be able to put the catheter into his chest if the INR level does not come down. We met with the nutritionist today to go over the neutropenic diet ( low bacteria ) that we will need to follow after Joe has his Chemo and Stem Cell Transplant. Bye - Bye blue cheese, fresh fruit and veggies. Hello well done meat and individually wrapped processed food. Triglyceride level keeps going up it is over 500, this is one of the symptoms of Amyloidosis. Before Joe had this disease his cholesterol levels were great. They will change his medication to try and bring his level down. If not the problem of collecting more fat cells then stem cells will be an issue but they say it will not change the treatment plan. After the transfusion was completed they retested Joe's INR and the level came back low enough to do the cath placement tomorrow yeah!!! We met with Lisa Yanarella, NP in the stem cell unit we just love her she went over Joe's treatment calendar with us and all the emergency contact information. Then both she and Dr. Quillen gave Joe a head to toe exam. Long day but Joe is holding up well.

7/30/09 Catheter placement today had to be over at BMC - East Newton Campus at 7:00 am catheter placement went well, very little bleeding. Joe is sore but doing well. I have to keep an eye on it for bleeding if more than a dime size that will not stop with pressure we will head over to the emergency room.

7/31/09 Not to bad of a night last night neither of us sleep very well ...but no emergency. I managed to cover up the cath with press and seal and medical tape so Joe could shower and we had no leaks. Joe starts his growth factor injections today he will have one in each arm. The G-CSF injection helps move the stem cells out of the bone marrow and into the blood stream. He receives two injections because he is given three times the normal dose of G-CSF in order to mobilize enough of the stems cells needed for the transplant. These injections will continue until they have collected the required amount of stems cells (4-5 days). He will receive these injections again after the stem cell infusion. Common side effects of G-CSF are: Bone pain, joint pain, headache, low blood pressure and fluid retention. So today we went to the Moakley Bldg to the Stem Cell unit this is where we will be everyday during the week. Joe said the shots felt like bee stings, not to bad. His catheter looked good, and it made all the blood draws a lot easier. We seen the doctor again talked about a few issues that Joe is having but for the most part Joe is still in pretty good spirits and the nurses love him.

8/01/09 On the weekends we will go to the hospital for Joe's injections this is at BMC - East Newton Campus. Joe was a little achy this morning his bones are beginning to hurt. We meet the nurse on the 7th floor and she checks Joe's weight and blood pressure and then gives him his shots then we can leave. He starting to feel the shot side effects more and more but Tylenol seems to help some. Joe slept a lot today; I caught up on laundry and did some grocery shopping.

8/02/09 We were up early today about 5:30 Joe was having a problem sleeping, just not feeling well; achy and said his back was hurting. His heart has been beating fast from his Afib said he can feel it. We will talk to the doctor some more about it on Monday. Gave him some Tylenol and he laid back down. Left at 10:00 am for the hospital for injections, weight and BP check. We had a quiet day most of the day Joe watched the Yankees game and rested on the bed. We had dinner and he started to not feel well about 8:00 pm very sore all over and started to feel like he was getting a fever and the chills. I gave him some more Tylenol and some hugs and kisses. Joe went to bed early needs lots of rest big day tomorrow they will start collecting his stem cells. We need to be there at 8:00 am and will be there all day until 5:00 pm. We will do this for the next two or three days until they have enough stem cells collected for the transplant. Thank you everybody for your prayers we love you...