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
This is the story of my involvement as caregiver to my wife during her ordeal with MDS and bone marrow transplant.
Friday, July 27, 2012
Thursday, July 12, 2012
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
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
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