Update 5/24/2012 Port Problems again.

I almost hate to post this as it is much more fun reading everyones notes after a good report. But I did say I would post when I had something to report. As you know from earlier post Gennie had trouble with clots and they had to remove her port on her left side. They replaced it, installing another in her right side. This was done last week. Well things have not gone so well with that port. When she showed up in clinic on Wednesday for her daily clinic visit the nurse took one look at it and fetched the NP. She looked at it and fetched the Doctor. They all agreed we had a problem. Sent us home and told us to put ice on it overnight. No labs that day. Today we went again and they were short a doctor.  We waited three hours to see the one doc there and were sent to IR (the folks that put the port in last week) to see a doctor there and get his imput. He took one look at it and said it had to come out and quickly. He had no idea she was on blood thinners. He explained that with some folks these ports don't work well. In particular folks who are very thin or who have very thin skin. Well most of you know Gennie. She had both of those factors covered. His recommendation was to put in a Hickman port. This is a much more long term acess point that will hang from her chest just under her collar bone. They work very well but are a bit more limited in the capabilities. We were happy to hear they had an option. So here is the schedule for the next few days. Tomorrow at 7am they are going to put in another PICC line in her right arm. If you remember it was a PICC line in her left arm that possibly caused some of her problems with clots. This new PICC will be temporary. It will be replaced with a Hickman probably next Tuesday. At that time they will also remove the port. Until then the PICC will give them access so they can get back to Labs everyday. Gennie has been handling this pretty well. It has been stressful but at least we now have a plan. I can not tell you how sore she is. With the removal of one port and the mess of a second port it looks as if a truck has run over her chest. She certainly take pain much better than me. Last night for the first time she actually got out of bed and went looking for her pain meds. Normally I have to make sure she takes them. Hopefully after they remove this  port she will start to live pain free again. She has probably forgotten what that feels like.
Anyway that is what is happening up here. Now you all go have a wonderful holiday weekend. Just kidding, we both really do want all of you to enjoy your Memorial day. In my mind it is one of the most  sacred holidays we have.
That's all for now, Bob

Update 5/20 Things change on a dime.

Hello all, It is day 54 post transplant. Things were going along great, until... Gennie was having trouble with her left arm since the geginning. It is where the clots are. It has been painful and swollen. The doctors decided to remove her picc line first then remove her port and move it to her right side. They say these could be contributing to the clot problem. The port was removed last Tuesday. Wednesday we went to clinic and things seemed to be going fine. The new port worked and other than some pain from the surgery she was doing OK. Her right arm was still swollen but that was to be expected. Removing the port is not in itself a cure for the clots but hopefully will help prevent them from forming more. She resumed her meds on Wednesday. She had gained a couple of pounds but nithing to worry about. She was 94lbs that day (up 3 to 4 pounds). Friday at clinic things were much the same with a bit more weight. Friday she weighed in at 98lbs. That is eight pounds in a couple of days. Her arm was really hurting and both arms were now swollen. She was sent to the NP for an exam. Shari, the NP, did a complete exam and sent her for another doppler. It showed pretty much the same as before. She also listened to her lungs and all seemed fine. She did need blood for the first time since starting clinic. Her hemoglobin was 7.6 and when it goes below 8 they are going to give you a transfussion. All of this is pretty normal stuff. We arrived back at the apartment around 5pm. I gave her her 5PM meds and as she was sitting in her chair she had a very serious chest pain. It passed and she ate her dinner. The problem with clots is we are very worried about one of them breaking loose and causing a major problem. At 8PM I gave her more meds and within ten minutes she was throwing them up. She was pretty uncomfortable. She also had more chest pain. I decided to call the clinic but realised they close at 4:30. When this is the case we are instructed to call the 10th floor and speak with the nurse in charge. She decided to call Dr. Chung and call me back. We were instructed to give her some pain meds and come to the clinic first thing Saturday morning. We were supposed to have Saturday off and report Sunday for our normal clinic visit. Well it was a long night for both of us. Gennie was sick several times and her chest hurt if she took a deep breath.
I stayed up most of the night just because it was difficult to sleep with her hurting so much. We were at clinic when it opened. Dr. Chung was there and sent us for a chest xray. This only took maybe fifteen minutes and before we were back in clinic Dr. Chung already had the results. Her lungs both had fluid in them. Dr. Chung who is normally very casual and fun was in business mode. Still pleasent but focused. His decision was for Gennie to be admitted for a few days. As he stated "we have some work to do". Gennie's part is to void the fluid Dr. Chung's part is to figure out why it is there and correct that.
I took yesterday to go back to Poquoson for a few hours. Spent most of the afternoon with my daughter and saw a few friends. Picked up some clothes we needed up here and most importantly picked up my golf clubs. It was nice to see home again. I got back around 9:30 got some sleep and now need to get back to the hospital.
As you can tell things can change on a dime with all of this going on. Gennie had not had any problems with the transplant until she did. I have every confidence these folks will figure it out and handle it. I would say "never a dull moment" but to be honest most of our moments are dull. I guess a better comment would be "just another challange to overcome".
Well anyway that is what is going on here. Hope all of you are doing well and as always thank you for your thoughts, prayers, cards and support. It is very much appreciated.
Once again I am not going to proof this as it makes it much more fun to read.
That's all from here folks,
Bob
 

Update 5/9/2012

Hello from Richmond everyone. Gennie had her first Doctor appointment since the transplant yesterday. The great news is her transplant is going beautifully. Her biopsy showed she had 100% donor cells and no signs of the MDS. The are still waiting for genetics to get back to make sure she does not still have the abnormal DNA. We should have those results very soon. Do date she has not shown any signs of GVHD. They have said it is a bit early but it is probably coming.
Now the not so good news. Every since she had a PICC line in her left arm she has had swelling and pain in that arm. They took repeated doppler scans of the arm and found nothing. Well they removed the PICC and the swelling and pain continued. Another Dopple and they found what we thought was one clot. Yesterday we were told it was several clots and they were getting worse. This is apparently a possible problem anytime you put in PICC lines or central ports. On Monday they are going to remove her double port and put in a new one on the right side of her chest. Everything to date has been on her left ide because back when she had cancer fourteen years ago they removes lymph nodes from under her right arm. However they have run out of choices and need to place the port there. Once they do this procedure they will begin using the new port immediately. She will resume using coumadin and I will continue to give her belly shots of enoxaparin each day to help disolve the clots. I call this her LOVE shot as the brand name for it is Lovenox. This could take quite a while. Obviously they will keep a close eye on this. My first question to the doctor was "What happens if clots develope on the other side once the port is moved there?" He said we will deal with it. I guess that answered that.
Things here in Richmond are going fine. I am pretty sure we have a family of baby elephants living above us. IF you follow the news you may have seen that Richmond was voted the second most obese city in the nation. I can attest to that as they are all living above me.
I will be going back to Poquoson this Friday to play in our Exchange Club/Michael Green Scholarship golf tournament. I am looking forward to seeing some friends. Shannon will be coming up here to stay with her Mom for a couple of days.
That's all for now folks, Bob
ps.. I have not proofed this or checked spelling or anything... so there!!