10/28/09

10/28/09 So the last couple weeks have not been real great for Joe, he still is not feeling well and now has a cold. He has had a few good days and we have taken advantage of those. We went for a walk at the parkway and had a coney at Heid's. Joe had his first beer in five months it really did not sit to well in his stomach I will spear you the details. The doctor said it won't hurt him to have one occasionally. The vitamin K twice a week is not helping with thickening his blood so now they have changed it to 3x a week so we will go tomorrow for blood work to see if that helps. Also they have doubled his dose for his thyroid meds. Joe is getting very depressed because he still does not feel (chills, shortness of breath, fatigue) well this is very upsetting for the both of us, it is sad to see someone who was so active and out going be so down. I guess we both thought by now he would be feeling more like his self. We went to the cardiologist last Thursday and he did not like Joes heart beat at all and did not like that his at rest rate was 100 - 105. So Friday he is going in for a trans-thoracic echocardiogram, as opposed to the standard echocardiogram, in which the transducer is placed over the chest wall, in TEE the transducer is passed into the esophagus (the swallowing tube) and is positioned directly behind the heart. The transesophageal echocardiogram (TEE) is an alternative means of producing echocardiograms of the heart. To do the procedure, Joe will be sedated, and the gag reflex will be suppressed by spraying a local anesthetic into the back of the throat. The transducer is then passed through the mouth and throat, and down the esophagus. Once in position directly behind the heart, the transducer bounces sound waves off the heart (just as in the standard echocardiogram), and images of the cardiac structures are produced. Since the esophagus sits behind the heart, the echo beam does not have to travel through the front of the chest, avoiding many of the obstacles like the chest wall (skin, muscle, bone, tissue) and lungs In other words, it offers a much clearer image of the heart, particularly, the back structures, such as the left atrium, which may not be seen as well by a standard echo taken from the front of the heart. One reason they are doing the TEE is they need to get a good look at the heart before they decide on which procedure they are going to do to correct the atrial fibrillation with flutter, they need to make sure there is no chance of blood clots (which with his thin blood the chances are thin) also all along they have said they did not think the amyloid has effected the heart but I think they want to get a better look at the heart for this reason, see if there is any thickening. There is one of two procedures they are thinking of doing either Electrical cardioversion which they will shock the heart back into rhythm or Radio frequency ablationthis procedure, thin and flexible tubes are introduced through a blood vessel and directed to the heart muscle. Then a burst of radiofrequency energy is delivered to destroy tissue that triggers abnormal electrical signals or to block abnormal electrical pathways. So to say the least we are both very worried right now, Joe has not even come close to recovering from the stem cell and now we have to worry about all of this. I hate seeing my husband the person I love with all my heart and soul go through this all I do is pray and ask God to give him his good health back. Joe keeps telling me how much he loves me and thanks me for everything I do for him but I tell him don't thank me I wouldn't be anywhere else but with you. I know he is scared, we both are this road is long, but I know there will be a rainbow at the end and I thank God for giving me all the strength he gives me. I will update you again soon, God Bless, We love you and please keep the prayers coming for Joe.

10/11/2009

10/11/2009 Well the last two weeks have not been real good Joe has not been feeling well, we have been to the doctors several times trying to get to the bottom of what is going on. Joe has been very cold he can not warm up, not like when you and I get a chill and we put a sweater on and we feel better, this is constant no matter what he does he is cold and he is cold to the touch. I have tried everything to make it better for him I have bought him long johns, sweat pants and sweatshirts to wear, I recently bought him a electric blanket that seems to help. He has the heat on and it is like a sauna and still he can not get warm. He is also achy and has been throwing up off and on. Yesterday he was trying to take a shower and had to sit down during it because he was to weak to finish. So to say the least I am worried, the doctors have been trying to figure out what is going on they have run blood cultures twice to see if it is a infection we are waiting for the results from the ones done on Thursday. Joe has the blood disorder factor X (ten) that I explained to you before that makes his blood real thin, during all the testing this week they checked his INR and found that his blood is thinner then they like it to be so they put him on a drug called Vitamin K, so perhaps the thin blood is causing some issues so we will see how it goes over the next week or two on the K. You have to be careful with making the blood too thick when on K so he will get two doses this week of Vitamin K get his blood checked and then see where his level is at then they will tell us what his dose is for the following week. Then there is his thyroid he is now hypothyroid from what we don't know perhaps his heart meds they said or from chemo treatments so they put him on new thyroid meds but that also takes a few weeks to take effect so maybe it is the thyroid causing the coldness. Then it could be a virus and Joe's immune systems is to weak to fight it off. So we don't know and in the mean time Joe feels terrible and I am worried sick. We go to the cardiologist on the 22nd this is to address the Atrial Fibrillation with flutter that Joe has and has had from the start of all of this. I am hoping he will have good news for us and not another procedure for Joe there has been mention that Joe will need to have a ablation done for the Afib as soon as he is feeling well enough. Joe and I really appreciates your cards, phone calls and messages even if sometimes he is not well enough to return the calls and I never have enough time but we do love hearing from everyone. Please continue to pray for Joes recovery he has along road ahead of him still and needs all your prayers, love and support. God Bless and We love you.