Day 67 Post Transplant

This last week has been a challenge. Last Tuesday we went to the clinic and it was a very rough day. We woke up in the morning and Jim kept passing out. He was so week, I kid you not, 4 people (2 men and 2 women)had to carry him to the car. Realize that means an indoor flight of stairs and an outdoor flight of stairs. Jim is a large man so that was a chore. When we got to LDS Bonemarrow clinic, they almost admitted him. His blood counts were very off and his platelets were dangerously low. He got 2 units of blood and platelets. The MD thinks that because his brothers blood type is A+ and Jim's was b+ that Jim's blood is trying to convert over. Apparently he is 90% converted but there is a part of Jim's B+ blood that is attacking the A+ blood. This is not a rejection of the transplant but just a hurdle to get through. Also the medicine that they are giving him for the CMV infection is depleting his platelets. Also his white count is low. So, Wednesday he felt a little better now that he had some blood. We are just watching him very closely now and went to the hospital for blood draws on Thursday and Sunday. He needed a white blood count stimulator (shot) on Thursday and Sunday. On Sunday his platelets were even lower than on Tuesday and he needed more platelets. Today he feels pretty bad again so I am expecting that he will need more blood tomorrow. Hopefully we can forgo the carrying to the car part. The MD told Jim that he is a work in progress. She told him that this will be a tough time, but they will get him through it. I think on these transplants they are used to things coming up and just putting out fires as they come.

On Sunday Sarah had a talk in church, Nate was being introduced for graduating from primary and I couldn't go to church because I had to take Jim to the hospital for a blood draw. These kids are troopers. I heard Sarah's talk was fabulous. I told the kids I was so proud of them doing all of these things even when their parents can't come. Spencer said "Parents, we have parents?" It definitely is taking a village right now to raise my kids. Sunday afternoon the bishop came over and Jim sat at the side of the bed and ordained Nathan a deacon. It took all of his strength to sit there and place his hands on Nathan's head but it was a very special experience.

Tomorrow, we have a clinic appointment at LDS Hospital so we will see where we are at.

Today, I AM THANKFUL FOR special friends that I can call and say "Help me carry my large husband to the car, or friends that come running when I say "I am having a melt down" or friends that show up with dinner when we are delayed at the clinic until 8:30 at night. We don't even have to ask. Most of the time I don't even know what we need. So it is nice when friends and family are in tune enough to know what we need before I even know we need it. (Does that even make sense?) Love you guys!

60 Days Post Bonemarrow Transplant

Things are pretty much still the same. Jim has been home 1 month tomorrow and we don't see a lot of progress. Jim mostly remains in our room. He has been down to our family room twice since he has been home. He generally feels pretty crappy. We continue to go to the clinic at LDS Hospital once or twice a week. That is a huge ordeal because his mobility and energy is very limited. It takes at least 15-20 minutes to get him from our room and down the stairs to the car. Once we get to the hospital it is quite a comical routine. I drive to the front, run in and get a wheelchair, help him into it, wheel him to the lobby, go back out to the car, park it across the street, walk back across the street, then we are off to his many appointments. You don't realize what people go through that are mobility challenged, handicapped or as my son Brendan puts it handicapable. Its not very convenient and things take twice as long. At one of our appointments last week Jim needed to use the rest room. It was not a standard appointment so we were not aware of the facilities. We were directed to the hall. Keep in mind Jim is in a wheelchair. We can not find a handicap accessible restroom. We see a men's room and a women's restroom. What to do, what to do. Well, I do what needs to happen. I enter the men's restroom with my husband. We take care of business and I am just happy no one has come in. Just as I am wheeling him to the sink to wash his hands, a man walks in. I apologize and explain that we are just finishing. The man is friendly and states "no problem." He then proceeds to the urinal and relieves himself right in front of me. At that point I know I have hit the bottom. Funny!

We found out last week that Jim has a virus that has reactivated. About 80% of people have CMV virus in their blood. It is not a problem with a healthy immune system. Jim and his brother who gave the stem cells both had it dormant in their blood. Now because he is on steroids for the graft vs host, the CMV has activated. He has it in his blood and in his gut. So that could also be contributing to alot of his issues.

We wheeled into the clinic last week and helped Jim into a chair. He has to wear a filtration mask so it is obvious he has had a transplant. There is a brother/sisterhood at the clinic. A woman was sitting in a chair. No mask but obvious her hair was not fully in. She asked Jim how far out of transplant he was and he stated 50 something days. She watched him struggle from the wheelchair to the regular chair. It is pretty rough on him. She stated that she was a year and a half out. She looks at Jim and says "Can I just tell you, the first year just sucks." It actually was good to hear because it took the pressure off. Jim was frustrated that he had been home 3 weeks but did not feel any progress. So now we just know, it is a very sloooooooooooow process.

We made it through mine, Sarah's and Nates birthdays. Also through Mother's day. I have not been back to work yet, but I have a shift scheduled for Friday. Jim's sister Nedra is going to come and take care of Jim. I am nervous to leave him. I know Nedra will do fine, I am just used to taking care of him. I know it will be good for me to work a shift once a week though.

Today I AM THANKFUL FOR continued health and mental strength to carry on. I asked Jim what he was thankful for and he also agreed that he was thankful for my mental health.

45 Days Post Transplant

We are still hanging in there. Jim said today that he has been home for almost 2 weeks. He is frustrated because he does not feel any better than he did in the hospital. He is still having blood pressure issues and likes to try to pass out alot. Physical Therapy comes 2 times a week. The clinic visit on Tuesday went fine. The pulmonologist met with Jim to follow-up on his RSV. Jim was telling him how weak he was. The Pulmonologist said "Jim, did I tell you that most bonemarrow patients that get RSV are dead?" He is a funny man and reminds us this every time he sees Jim. I think he is in awe that Jim made it through the RSV. He told us that 80% of bonemarrow patients that get RSV die. It is a good reminder because it puts things into perspective. I think he is pretty much saying "chill, you are alive." I just wish Jim could see some progress. He still just feels lousy. Some days he can walk down the hall a couple of times and some days all he can do is use the bathroom and brush his teeth. Obviously he is weak because of the transplant and RSV but the steroids I guess can make it worse. I know some of the meds must be contributing to the weakness and how he feels but how do you know which of the 25 different prescriptions are doing it? Plus he needs all the meds to stay alive right now. So, I guess that is how we look at it. Progress is being alive. He occasionally will have a moment where he feels ok. He calls that "when all the planets are aligned."

My life right now is pretty much taking care of Jim. I have not been to work for 2 months. I actually have a shift scheduled in two weeks and I am actually looking forward to it. I am able to accomplish things at home but cannot leave him alone. That can make me a little stir crazy. Friday night a friend arranged a "girls night" and one of the husbands had a "boys night" with Jim. We saw a chick flick and got ice cream and it is amazing how renewing that can be. Just getting out and having a little girl talk was great. Jim's "boys night" consisted of watching the Jazz game together while Jim layed in bed. Jim loved it. I am sure he is pretty sick of me. He feels like crap and I am the one telling him "do your leg exercises or you won't get stronger, drink more water or I will have to give you more IV fluids, it's time to take a shower, you need to walk more, are you dizzy, take your pills, are you ok, don't get up alone, no you can't lay in bed, you have to sit in your chair, are you passing out again and etc." I joked with him yesterday that he was going to divorce me when all of this was done. He didn't think it was as funny as I did.

The kids are also pitching in. I can't leave Sarah and Nate totally alone with Jim in case he falls or something but they will sit with him. Sarah is also getting proficient in giving IV medication. She has for as long as I can remember wanted to be a veterinarian. She is very interested in Medicine. So, anytime I have something medical she might like, I teach her. She is not squeamish at all. A few months ago she removed the staples from Brendans head after I showed her. Now she knows how to hook up Jim's IV meds, flush the lines and do line care. It is nice because when I went to the movie I started an IV medication and while I was gone she stopped it and flushed the line. She is only 13, but I trust her way more with this kind of stuff then I do the boys. I think it is good for the kids to do some of this kind of stuff for Jim because it keeps them close with him. They can't do the same kind of bonding activities that they did before with him because of his limitations. Sarah and I both have a birthday coming up and the only thing we wanted was to have a day together. So Saturday, Spencer is going to have a bonding day with his dad. I didn't want it to be a negative thing for Spencer like he was stuck home "babysitting" his dad. I don't want the kids to feel like their dad is a burden. Spencer was very cute about it when I asked him. I told him it was a Father and Son" day and I would get whatever food they wanted. Spencer was in our room this morning and told Jim that they "get" to hang out together on Saturday and that he was going to bring up the Play Station so they could play Crash Team Racing together. I know that Jim was happy that Spencer acted like he wanted to spend his Saturday with Jim rather than dreading it. It will be good for them. The kids all are finding their own way in regards to their Dad. They all handle it different. Some of them won't leave him alone and some avoid him completely because they are afraid they will contaminate him somehow and kill him. Some talk his ears off and some sit quietly beside him doing homework. Others simply drop by the room and provide the necessary care. No matter how they act or what they do though, it is obvious they all adore their dad.

Today I AM THANKFUL FOR the bright moments that touch my heart and make everything worth it.