Progress 7/27/2012

     Today is day 122 post transplant. This week has been a challange for Gennie. Monday was a clinic day and a appointment with her lady part doctor. All's well there. Tuesday was a scheduled bone marrow biopsy and clinic. Her sodiun was low for the first time and the nurses told her to eat more salt. We bought pretzels. She broke a tooth in half that night. Wednesday was clinic and a visit to the dental section of the hospital. The doctors decided the best action was to pull the tooth. Thursday was clinic and a visit to our friends in IR. She had another central line put in. To be honest she has been handling all of this pretty well. Ah the wonders of medicine!! Today was, yes you guess it, Clinic and a doctors appointment.
     Now the best news in a long time. The doctors are very pleased with her progress. Even though her weight stays in the low to mid eighties most of her counts look good. She told the doctor today she was beginning to feel like herself for the first time in a long time. He asked us if we had any questions and Gennie asked for an explanation of systemic GVHD. We have heard that used to describe what is happening with her and the reason for photophoresis which will start next Thursday. He said it is an indication that she is showing small signs of GVHD in several areas or systems. This is actually encouraging as it shows that her transplant is working. Whenever a patient shows signs of scleraderma GVHD these doctors go to photophoresis to help protect from worse scleraderma later. It also will help keep her off of high dose steroids for the condition. After this discussion he gave us off until Tuesday. That is the first three day span off we have had. It has been a long time coming. I then pushed our luck and asked if at some point soon we would be allowed to return home for a day trip. He said they normally do not agree to this but in our case maybe it could be worked out. So I then asked about this weekend. He just smiled. It will not be this weekend but soon we may be able to come home, stay a night, and return the following day. I would love for Gennie to see home if only for a few hours. We are working on it.
     For now our spirits are high. She seems to have turned a corner. We are all to aware of the two steps forward on back thing and we will deal with whatever steps we need to make. As always thank you for your thoughts and prayers.
That's all for now, Bob

Update 7/12/2012

Hello everyone,
     It has been a month since I last brought you up to date with Gennie's progress. I have been putting brief updates on Facebook but I realize many of you do not follow there. It has been a difficult month for Gennie. She spent eighteen days back in the hospital. This was due to problems with her gut. Without going into to much detail she was going number two to often. For much of the time on the tenth floor she was NPO. At first they were only giving her fluids and after about six days they started giving her nourishment. It was not working very well. She got as low as 83 pounds. Finally they identified a bacteria and started treating her for it. It apparently is a very rare one that they do not see often. Leave it to Gennie to throw them another curve. They have also not ruled out GVHD of the gut. They did a test but only checked about three feet of her intestine and there is twenty two feet that the little bugger could be hiding. She did respond to two new drugs and finally decided she could return to outpatient status. I will tell you that it sucks when she is not here. I know it is more work with her here but mentally it is much more difficult. For the last twenty five years we have een together pretty much 24/7. In the first six months of this year we have been apart more than ever. I do not like this. If you are wondering what Gennie thinks , well, she may have a different opinion so we will not ask her.
     There is still much thought going in to how to treat the scleraderma. The latest is that they have still not decided. White she was on floor ten she was visited by the wound care folks. (plastic surgery folks). They came to access how her old port sites were healing. Thankfully they are slowly getting better. The original site is much better and the second one is coming along. She now has four bumps on her chest. Sorry a LITTLE sick Bob humor. Dr. McCarty would like her to have another port installed. They are holding off because it still has not been determined if she is going to need photophoresis. If she does then a port is the best way to go. I will tell you Gennie and I are both a little frightened with the thought of another port. She has not done well with them. However if it is what is needed we are OK with what the doctors decide. I guess we will know sometime soon. If you are reading this trying to figure out how any of this applies to your situation with MDS and BMT STOP!!!!. The one thing I have learned is that no two cases are the same. The one thing I will say is that everyone here is going through something. Some of these folks are incredible. They have a strength I have never seen. There are days when the best medicine is a smile from a nurse, fellow patient or fellow caregiver. All of these folks have a story and all of them are inspirational. It is funny how IV's in your body seem to make everyone equal. In that sense it is sort of a study in humility. No pretense here these folks are all equal, these folks are all deserving, these folks are all courageous these folks are all inspirational.
     Since Gennie has been out we have been to Clinic almost everyday. They did give us the first weekend off and the resulted in a nine hour day last Monday. That day one side of her picc line would not flush. The next day they were able to draw blood from the other side but fifteen minutes later it wasn't working either. That day we spent six hours in clinic for nothing. Wednesday we had her picc line replaced. It failed after a month. Once again the luck of Gennie with central lines. Today we had a five hour day and then on to a new doctor. This one was for her eyes and was at a location near our apartment. The good news is she does not show any signs of GVHD of the eyes but she is getting older and has cataracts. These will have to be fixed in the future but not until she is further along with her transplant and stronger. That leaves us wondering what is causing the headaches she has been having pretty much all the time. I guess it now goes back to the team to figure it out. Gennie has been taking oxycodone-acetaminophen 5-325 daily to help with this. Not her style, but it helps. That brings us to tomorrow when we have a chest CT scan (scheduled) and a pulmonary function test (also scheduled) and then on to clinic. Another long day.
     As for me I am doing fine. While Gennie was in he hospital I did go home a few times. Went to a party at the yacht club (fun). Played golf one day with a good friend (also fun) and then had an invitation to play golf with several friends at Kingsmill River Course, (lots of fun and very generous of these friends). I really am doing OK. I miss my boat and the fun that summer brings but that will have to wait for next year. My brother and sister-in-law came to visit for a few days and I played golf again. It was very thoughtful of them to travel this way to see us. The support I receive from family and friends is so helpful and I will never really know how to thank everyone. We miss all of you. As always thanks for your thoughts and prayers.
That's all for now, Bob

Update 6/11/2012 GVHD

Hello everyone. Things here in Richmond continue to progress. Since last post Gennie has beeen doing well. For the time being she has a PICC line in her right arm. There has been some ongoing swelling in that arm and the PICC will have to be removed soon. The doctors are considering what type of access they will use next. There are different types they can select that we have not heard of before today. (more on that later) Gennie was to have her sixty day biopsy two weeks ago but with all the problems with her ports the doctors decided to put everything on hold until she had some time to recover. The biopsy is now scheduled for tomorrow. This will give us an update on how her transplant is going. In earlier post I have mentioned Graft vs Host Disease. Most Allo transplant patients develope some sort of this condition. We have been waiting to see how it would manifest with Gennie. We don't have to wait any longer. We saw the doctor today and he confirmed she has a case of it. Her left arm where the clots developed has been swollen for almost three months. We and they thought it was due to the origional PICC lince and then the clots. It probably was due to that. Now it is because of a form of GVHD. I do not know much about it but I am sure we will learn more very shortly. The treatment for this and other forms of GVHD is steriods (prednisone) , photophersis ( http://en.wikipedia.org/wiki/Photopheresis) and tacrolimus (her anti rejection drug). In the past Gennie has had difficulty with Prednisone and she is very concerned about taking it now. Problem is she does not have a choice. The use of Photopheresis will limit her need for high doses of Prednisone. If the team decides she will start Photopheresis that will dictate what type of access port they install. This GVHD in her arm may not and probably will not be the only GVHD she experiences it is just the first. We will deal with them as they show up. This is in many ways the most difficult part of recovery. We have seen many patient dealing with all sorts of this. It can go on for years and possibly the rest of your life. It is not to be taken lightly and will not be. One probem Gennie is having with her arm is range of motion. She can not extent her arm fully. The Doc wants her to do stretching excercises daily. This is easy to do and she has already started.
As always thanks to all for your thoughts and prayers.
That's all for now, Bob

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!!

Update 4/25/2012

Hello all, Just a short update this morning. Everything has been going well the past week. Gennie has had a few small issues but nothing serious. She is visiting the clinic everyday for several hours. This will continue for sometime to come. Today she is having her first bone marrow biopsy since the transplant. Once we get the results in a few days we will know more about how engraftment is going. It is still early to see any graft vs host issues but we are getting closer. As you can tell from this post there is not much going on. We are thankful for that. The experience of coming here each day and seeing what some folks are going through is interesting and difficult. There are so many folks having a difficult time and it is sad to watch. You can tell some folks are struggling with the whole ordeal but having trouble staying upbeat. It is not hard to understand when you learn they have been dealing with issues for years in some cases. On the other had there are folks who seem to be doing great. It warms your heart when you see someone going through all of this and has a smile on their face. Right now Gennie is one of these people. I am going to do my best to make sure she stays one of the inspirations. With her it is not a difficult task keeping her smiling for others. As always thanks for the thoughts and prayers. We miss all of you but want you to know we are doing fine. I will post more when we get the results of the biopsy. That's all for now, Bob