Hi...
I thought I would update everyone on what's up these days with Allee. She is feeling good. The doctor gave us encouraging news when we were last in Rochester, Minnesota at the end of July. Unless something comes up he doesn't need to see us for 1 year. We have to keep up with her Coumadin therapy being a good level and taking care of herself but that is good news. Her right renal vein remains completely occluded or blocked by clot but he doesn't think it will cause a problem. If it does, we should be able to tell due to the pain it would cause. We are also doing regular lab work to make sure her levels are good relating to the kidney. I have to say it still 'bothers' me but I'm just trying to have faith.
So Allee started school on August 19th. She is at a local college close to home and getting certified to be a cosmetologist. She has already learned how to cut hair to trim hair and is loving it. She is fatigued alot due to the Monday - Friday 8-2:30 schedule. But she is staying true to her commitment to God by continuing to go to weekly Bible studies as well as the regularly scheduled services. I appreciate her zeal for the Lord. It is very inspiring.
On one sad note, we got blood tests back last week that Allison's older sister, Ashleigh, has the same blood clotting disorder. It is called Factor V Leiden. She has shown no reaction yet like that of Allison so Ashleigh is only taking an 81 mg. aspirin daily for now. The future, for both of them, regarding the possibilities of children one day will be impacted by this disorder. It can be managed with daily shots of heparin in the stomach for the entire pregnancy. We aren't at that point yet so we'll just face it when it comes. We're glad to know about Ashleigh too. It changes how she does things just a bit. But she is strong.
We are just thankful for the good things we have and try and deal with the not so good things as well as we can. We know God has put His hand of protection on Allison and Ashleigh for some time now. We are so humbled by His love for us.
Have a great rest of the week and remember to love those close to you with all you have. Seek God first in every aspect of your life. And never take one minute with family and friends for granted.
Jennifer
Tuesday, September 1, 2009
Wednesday, August 5, 2009
+
Hello Everyone....
I just wanted to take a few minutes to update you on our daughter, Allison Pressnell.
Allison is doing well. Her surgery in Rochester, Minnesota at St. Mary's Hospital with the Mayo Clinic went really, really well. The 8 stents the doctor placed inside her lower inferior vena cava and iliac veins in April looked great, haven't moved and show NO build up on them which is really great. That was a concern due to her blood clotting disorder. Dr. Bjarnason was just thrilled with that. She continues to have a completely clotted off right renal vein but her body, in the amazing way God created our bodies, has grown multiple, multiple collateral vessels that sprout off the kidney and get blood back to the IVC and to the lungs for re-oxygenation. He doesn't anticipate any problems from that blockage. He doesn't expect it to shrivel up like the IVC did when it was clotted. He said we need to keep routine checks on her kidney function tests and always be aware of it but otherwise, good to go. While she was there and they were in there, they checked out her heart, which can be of concern with IVC abnormalities and problems. I had NO IDEA this was coming so I literally saw it on the consent she signed about 2 minutes before going back to the surgery suite. It alarmed me but I held myself and didn't let her know I was concerned as I had very good confidence in the doctor. She was semi-sedated for part of the procedure where she had to hold her breath and push down to test the strength of the stents and other areas so she heard them say, "Ok, we are in the right atrium, let's go into the right ventricle, etc." She said, "I thought, wow, they're in my heart". I thought that was cool. Her arteries were clear, no plaque or signs of clots and so the heart gets an A too. The doctor, Haraldur Bjarnason, and his assistant, Timothy Scribner, were just ecstatic with the results. They could be just faking it but it really feels like they care about her. Mr. Scribner called twice yesterday and once today to check on her. He actually talked with Allison today and she was beaming from ear to ear that he would call and talk to her.
They gave her some hefty doses of Heparin to thin her blood at the end of her surgery. Her INR was 1.3 and that is dangerously low for someone with her disorder. So they wanted to get it back up as soon as possible. She had to then have Fragmin shots in her abdomen for a few days. She took her last shot yesterday. We went to her doctor in Birmingham today because the day we left to go to Minnesota she was beginning to feel poorly, like a cold. She has asthma which has had a hard time controlling for the past 7 weeks or so. So Wednesday she had 'that cough' that I know is her asthma. Travelling on a plane isn't good and changing environments doesn't help that. It didn't hinder her surgery but by Thursday evening I knew we needed more medicine. So I got some there at the Mayo Clinic Pharmacy and then on Friday, while we were still in Minnesota, I called her doctor here and explained the situation and they called in antibiotics and a stronger inhaler for her and my family picked it up so that when we got home to Alabama, we would have it. She has pretty much been in the bed since coming home until this morning. Today her doctor was testing her INR to see where it is so we can get it back in what they call "therapeutic range" of 2.5 to 3.5, mainly around 3 or a little above. He also gave her a shot and more medicine for her asthma for her nebulizer and such.
So....she is doing good and got a good report from her surgery. They will call us about when to come back but anticipate the next time to only do ultrasound testing and such, but nothing invasive, unless it warrants it. I feel very good about her doctor here. He is in communication with the doctors in Minnesota and he communicates well with Allison and me too. Allison is really getting to a good place of 'owning' her own health issues. Our next "thing" will be getting her in to a specialized doctor for her PCOS (polycystic ovarian syndrome) and endometriosis. We have to see a reproductive endocrinologist for this. Her womb is also slightly heart shaped and so all of those things combined with her Factor V Leiden status require a more in depth doctor in that area. As far as her stents and venous system she should be able to have children one day, if she and her future husband (whoever that may be) should choose but that is why we have to go for further testing and evaluation this way. At one point we were told she should just have a hysterectomy and never consider it. That was within the last year. So those issues are kind of in her head and things we will only begin to address now that we have the more pressing matters situated.
Thank you SOOOOOOO much for all the love and support everyone has extended to us. The prayers are the most important of all and Allison got a message from someone in South Africa last week telling her they, at their congregation, had been praying for her. I can't tell you what that does for my child's faith. It is truly a blessing and gift. Additionally, Barry, Allison and I would like to thank everyone, everyone, everyone who has helped us financially with the costs back and forth and the part we've had to pay, etc. We are SOOOOOO blessed to have that support as well. Someone asked me why we would even consider such an expensive treatment (travel, etc.) for her when we KNEW up front that we couldn't pay. And my only answer was that having exhausted ALL other avenues locally and even on a state level and in Florida too that I KNEW when they called and asked us to come to Rochester, Minnesota for them to evaluate and help Allison that my God WOULD make a way. I don't mean that in any haughty or irresponsible way either. I just knew that if it came to money being the thing stopping us that it would work out. So for the financial help so very, very many of you have given for the initial trip in April and/or the recent trip last week, we are humbled to the point of disbelief (if that makes sense) greatly. WE have learned so many, many lessons in this 'journey' as I'm sure many of you have in various health trials you've been through. One of the things I would mention now is the generosity and love and GENUINE concern expressed by everyone, specifically through financial assistance. These trips have been costly. We are thankful that Barry's employer has allowed him all the time off he needed. We are thankful for the insurance that has definitely paid the greatest portion of the medical costs (The first trip for JUST the doctor visits, testing and surgery cost close to $80,000).
Barry and I want to say a special thanks to Greg and Nancy Picogna. They have generously given of their time and assistance to be a 'center reference' for collecting funds and asking for funds on our behalf. This at a time when BOTH of their fathers have been seriously, seriously ill and continue to fight for their lives. We have been friends with them for many years and they are both people of Christian character. Thank you to them for ALL their help, love and assistance.
There are many others to thank but I'll not try and name them because I know I'll forget someone. Just know that we truly and deeply love, appreciate and thank our wonderful and most high God for you in our lives. Primarily for the prayers, love and concern but the physical blessings you have bestowed on us as well.
In Christian Love,
Jennifer & Barry Pressnell
I just wanted to take a few minutes to update you on our daughter, Allison Pressnell.
Allison is doing well. Her surgery in Rochester, Minnesota at St. Mary's Hospital with the Mayo Clinic went really, really well. The 8 stents the doctor placed inside her lower inferior vena cava and iliac veins in April looked great, haven't moved and show NO build up on them which is really great. That was a concern due to her blood clotting disorder. Dr. Bjarnason was just thrilled with that. She continues to have a completely clotted off right renal vein but her body, in the amazing way God created our bodies, has grown multiple, multiple collateral vessels that sprout off the kidney and get blood back to the IVC and to the lungs for re-oxygenation. He doesn't anticipate any problems from that blockage. He doesn't expect it to shrivel up like the IVC did when it was clotted. He said we need to keep routine checks on her kidney function tests and always be aware of it but otherwise, good to go. While she was there and they were in there, they checked out her heart, which can be of concern with IVC abnormalities and problems. I had NO IDEA this was coming so I literally saw it on the consent she signed about 2 minutes before going back to the surgery suite. It alarmed me but I held myself and didn't let her know I was concerned as I had very good confidence in the doctor. She was semi-sedated for part of the procedure where she had to hold her breath and push down to test the strength of the stents and other areas so she heard them say, "Ok, we are in the right atrium, let's go into the right ventricle, etc." She said, "I thought, wow, they're in my heart". I thought that was cool. Her arteries were clear, no plaque or signs of clots and so the heart gets an A too. The doctor, Haraldur Bjarnason, and his assistant, Timothy Scribner, were just ecstatic with the results. They could be just faking it but it really feels like they care about her. Mr. Scribner called twice yesterday and once today to check on her. He actually talked with Allison today and she was beaming from ear to ear that he would call and talk to her.
They gave her some hefty doses of Heparin to thin her blood at the end of her surgery. Her INR was 1.3 and that is dangerously low for someone with her disorder. So they wanted to get it back up as soon as possible. She had to then have Fragmin shots in her abdomen for a few days. She took her last shot yesterday. We went to her doctor in Birmingham today because the day we left to go to Minnesota she was beginning to feel poorly, like a cold. She has asthma which has had a hard time controlling for the past 7 weeks or so. So Wednesday she had 'that cough' that I know is her asthma. Travelling on a plane isn't good and changing environments doesn't help that. It didn't hinder her surgery but by Thursday evening I knew we needed more medicine. So I got some there at the Mayo Clinic Pharmacy and then on Friday, while we were still in Minnesota, I called her doctor here and explained the situation and they called in antibiotics and a stronger inhaler for her and my family picked it up so that when we got home to Alabama, we would have it. She has pretty much been in the bed since coming home until this morning. Today her doctor was testing her INR to see where it is so we can get it back in what they call "therapeutic range" of 2.5 to 3.5, mainly around 3 or a little above. He also gave her a shot and more medicine for her asthma for her nebulizer and such.
So....she is doing good and got a good report from her surgery. They will call us about when to come back but anticipate the next time to only do ultrasound testing and such, but nothing invasive, unless it warrants it. I feel very good about her doctor here. He is in communication with the doctors in Minnesota and he communicates well with Allison and me too. Allison is really getting to a good place of 'owning' her own health issues. Our next "thing" will be getting her in to a specialized doctor for her PCOS (polycystic ovarian syndrome) and endometriosis. We have to see a reproductive endocrinologist for this. Her womb is also slightly heart shaped and so all of those things combined with her Factor V Leiden status require a more in depth doctor in that area. As far as her stents and venous system she should be able to have children one day, if she and her future husband (whoever that may be) should choose but that is why we have to go for further testing and evaluation this way. At one point we were told she should just have a hysterectomy and never consider it. That was within the last year. So those issues are kind of in her head and things we will only begin to address now that we have the more pressing matters situated.
Thank you SOOOOOOO much for all the love and support everyone has extended to us. The prayers are the most important of all and Allison got a message from someone in South Africa last week telling her they, at their congregation, had been praying for her. I can't tell you what that does for my child's faith. It is truly a blessing and gift. Additionally, Barry, Allison and I would like to thank everyone, everyone, everyone who has helped us financially with the costs back and forth and the part we've had to pay, etc. We are SOOOOOO blessed to have that support as well. Someone asked me why we would even consider such an expensive treatment (travel, etc.) for her when we KNEW up front that we couldn't pay. And my only answer was that having exhausted ALL other avenues locally and even on a state level and in Florida too that I KNEW when they called and asked us to come to Rochester, Minnesota for them to evaluate and help Allison that my God WOULD make a way. I don't mean that in any haughty or irresponsible way either. I just knew that if it came to money being the thing stopping us that it would work out. So for the financial help so very, very many of you have given for the initial trip in April and/or the recent trip last week, we are humbled to the point of disbelief (if that makes sense) greatly. WE have learned so many, many lessons in this 'journey' as I'm sure many of you have in various health trials you've been through. One of the things I would mention now is the generosity and love and GENUINE concern expressed by everyone, specifically through financial assistance. These trips have been costly. We are thankful that Barry's employer has allowed him all the time off he needed. We are thankful for the insurance that has definitely paid the greatest portion of the medical costs (The first trip for JUST the doctor visits, testing and surgery cost close to $80,000).
Barry and I want to say a special thanks to Greg and Nancy Picogna. They have generously given of their time and assistance to be a 'center reference' for collecting funds and asking for funds on our behalf. This at a time when BOTH of their fathers have been seriously, seriously ill and continue to fight for their lives. We have been friends with them for many years and they are both people of Christian character. Thank you to them for ALL their help, love and assistance.
There are many others to thank but I'll not try and name them because I know I'll forget someone. Just know that we truly and deeply love, appreciate and thank our wonderful and most high God for you in our lives. Primarily for the prayers, love and concern but the physical blessings you have bestowed on us as well.
In Christian Love,
Jennifer & Barry Pressnell
Thursday, July 30, 2009
Great News
Allison had her surgery and follow-up today and the doctor says everything looks very good. He did not have to add anything to what was done in April.
They will get in touch with us about when to come back next.
Thanks again for all the well wishes and prayers.
Barry and Jennifer
They will get in touch with us about when to come back next.
Thanks again for all the well wishes and prayers.
Barry and Jennifer
Back At Mayo Clinic
Well, we are back in Rochester, Minnesota for a follow-up procedure for Allison. This is a scheduled thing and fact finding mission. We hope to find out that all the stents that were placed when we were up here in April are functioning properly. There is a possibility that they may have to place one or two more. She went back for surgery at 8:21 am central time.
We really appreciate the prayers that have been and continue to be offered up on her and our behalves. Thank you all for your support.
Barry and Jennifer
P.S. We will update later after she comes out of surgery.
We really appreciate the prayers that have been and continue to be offered up on her and our behalves. Thank you all for your support.
Barry and Jennifer
P.S. We will update later after she comes out of surgery.
Wednesday, May 20, 2009
The Latest On Allison - 05/20/09
Hello Everyone :)
I hope you are having a great week. We are doing good over here :) Some have asked for an update on Allison and I heard from her doctor at the Mayo Clinic yesterday so I thought I would take this opportunity to update.
Allison is feeling better, much better than before her surgery. As the doctor had explained, she continues with back pain that ranges from tolerable to some days very painful. We are going to try and start journaling her activities to see if we can find a pattern to what may make her feel worse some days than others. Dr. Bjarnason had predicted a minimum of 6 weeks of pain due to the nerves surrounding her IVC being irritated from stretching the IVC back open. And nerves are difficult to get under control. So, we are just taking one day at a time. But as I said, she see's, as do I, great improvement from the leg pain and abdominal pain from before. God has blessed her so much. ;) :)
Dr. Bjarnason's assistant emailed me yesterday informing of our "next step" regarding this healing process for Allison. She is scheduled for another venogram at St. Mary's Hospital in Rochester, MN, on Thursday, July 30, 2009. We are to arrive in Rochester on Wednesday and she will have her procedure on Thursday. If all looks good then we can probably leave on Friday, July 31st. It just depends on what Dr. Bjarnason finds. His purpose is to see if the stents are where he placed them, to examine them for any "build up" that can occur on any stents in anyone, and see if the 4 inch area of the IVC behind her liver has opened back up to normal size. He felt, at the time, it was shrinking down due to lack of use because of the large clotted off are of the lower IVC. If it is still smaller than he likes then she will have another procedure to place more stents in. He is also going to examine the right renal vein that comes off the IVC. It was completely occluded (clotted off). The right kidney is working well due to collateral vessels that have grown off the clotted vein but it is still something that has to be monitored.
So, that is our update. Allison has registered for classes at a local community college and classes there begin August 19.
Thank you so much, once again (and I really cannot say it enough) for all the prayers that have been offered on our behalf. We KNOW and feel as though we have SEEN the power of prayer in all this.
Love to All....
Jennifer
I hope you are having a great week. We are doing good over here :) Some have asked for an update on Allison and I heard from her doctor at the Mayo Clinic yesterday so I thought I would take this opportunity to update.
Allison is feeling better, much better than before her surgery. As the doctor had explained, she continues with back pain that ranges from tolerable to some days very painful. We are going to try and start journaling her activities to see if we can find a pattern to what may make her feel worse some days than others. Dr. Bjarnason had predicted a minimum of 6 weeks of pain due to the nerves surrounding her IVC being irritated from stretching the IVC back open. And nerves are difficult to get under control. So, we are just taking one day at a time. But as I said, she see's, as do I, great improvement from the leg pain and abdominal pain from before. God has blessed her so much. ;) :)
Dr. Bjarnason's assistant emailed me yesterday informing of our "next step" regarding this healing process for Allison. She is scheduled for another venogram at St. Mary's Hospital in Rochester, MN, on Thursday, July 30, 2009. We are to arrive in Rochester on Wednesday and she will have her procedure on Thursday. If all looks good then we can probably leave on Friday, July 31st. It just depends on what Dr. Bjarnason finds. His purpose is to see if the stents are where he placed them, to examine them for any "build up" that can occur on any stents in anyone, and see if the 4 inch area of the IVC behind her liver has opened back up to normal size. He felt, at the time, it was shrinking down due to lack of use because of the large clotted off are of the lower IVC. If it is still smaller than he likes then she will have another procedure to place more stents in. He is also going to examine the right renal vein that comes off the IVC. It was completely occluded (clotted off). The right kidney is working well due to collateral vessels that have grown off the clotted vein but it is still something that has to be monitored.
So, that is our update. Allison has registered for classes at a local community college and classes there begin August 19.
Thank you so much, once again (and I really cannot say it enough) for all the prayers that have been offered on our behalf. We KNOW and feel as though we have SEEN the power of prayer in all this.
Love to All....
Jennifer
Thursday, May 7, 2009
May 7, 2009 Update
Hello...
Alot has been going on since my last update. We went to Tampa for our oldest daughter, Ashleigh's, graduation from Florida College. We drove and Allison flew. We had purchased her tickets quite a while back because at that time she absolutely could not ride in a car for any length of time. Now she can but we still have to be very careful. It really felt like a whirlwind trip because it takes about 10 hours to drive and on the way we got caught just outside of Atlanta in the traffic that was stopped for about 1 1/2 hours due to that 18 wheeler truck being stolen and the truck driver riding on the back of the cab while the man who stole it drove across Georgia. So that was interesting. We felt like we would NEVER get to Tampa. Allison was there way before us. Ashleigh graduated on Thursday night and we had planned to come home Friday morning but that didn't work out. When we finally got everything loaded in her car and the van it was around 2 p.m. so it felt pointless to pack up at the hotel, drive 6 hours, get another hotel and then drive the remainder on Friday. So Ashleigh stayed out and did some more visiting with her friends and Allison, Aimee, Barry and I went to Anna Maria Island which is about 45 minutes from Tampa. We had about 3 or 4 hours there and it was nice. VERY relaxing. Allison couldn't get wet because her incisions haven't healed completely but she just laid on the beach and rested. Of course we were in our knee shorts and shirts. :)
Allison is doing pretty good. She has good days and bad days. Her pain was aggravated by the travelling, really from Minnesota to flying to Tampa and then riding back with us. That was her plan and her choice. The doctor okayed it. We stopped about every 2 hours and such but it took its toll. I don't know if I mentioned or not but she is severely anemic right now. Her hemoglobin is 8 which is half of what it should be. We are still working on getting her blood at a therapeutic level on the Coumadin and the doctor will address the anemia in a bit. Alot of the iron rich foods are foods that also thicken blood so that is complicated. We will get through though. We are so thankful for her opportunity for surgery and that it seems to have been successful. I only say 'seems' because we won't know for certain until our next Mayo visit and then the next milestones are varied over the next two years.
So....that is our update for now.
Have a great day :)
Love,
Jennifer
Alot has been going on since my last update. We went to Tampa for our oldest daughter, Ashleigh's, graduation from Florida College. We drove and Allison flew. We had purchased her tickets quite a while back because at that time she absolutely could not ride in a car for any length of time. Now she can but we still have to be very careful. It really felt like a whirlwind trip because it takes about 10 hours to drive and on the way we got caught just outside of Atlanta in the traffic that was stopped for about 1 1/2 hours due to that 18 wheeler truck being stolen and the truck driver riding on the back of the cab while the man who stole it drove across Georgia. So that was interesting. We felt like we would NEVER get to Tampa. Allison was there way before us. Ashleigh graduated on Thursday night and we had planned to come home Friday morning but that didn't work out. When we finally got everything loaded in her car and the van it was around 2 p.m. so it felt pointless to pack up at the hotel, drive 6 hours, get another hotel and then drive the remainder on Friday. So Ashleigh stayed out and did some more visiting with her friends and Allison, Aimee, Barry and I went to Anna Maria Island which is about 45 minutes from Tampa. We had about 3 or 4 hours there and it was nice. VERY relaxing. Allison couldn't get wet because her incisions haven't healed completely but she just laid on the beach and rested. Of course we were in our knee shorts and shirts. :)
Allison is doing pretty good. She has good days and bad days. Her pain was aggravated by the travelling, really from Minnesota to flying to Tampa and then riding back with us. That was her plan and her choice. The doctor okayed it. We stopped about every 2 hours and such but it took its toll. I don't know if I mentioned or not but she is severely anemic right now. Her hemoglobin is 8 which is half of what it should be. We are still working on getting her blood at a therapeutic level on the Coumadin and the doctor will address the anemia in a bit. Alot of the iron rich foods are foods that also thicken blood so that is complicated. We will get through though. We are so thankful for her opportunity for surgery and that it seems to have been successful. I only say 'seems' because we won't know for certain until our next Mayo visit and then the next milestones are varied over the next two years.
So....that is our update for now.
Have a great day :)
Love,
Jennifer
Thursday, April 23, 2009
Thursday Update On Allee
Hi Everyone....
Sorry for no update for a couple of days. We've just been trying to get caught up on sleep and take care of Allison. She is doing as well as to be expected. Her pain seems to be staying around a 7 or 8 when her medication wears off. This is normal and to be expected. We are still doing the Fragmin shots and the Coumadin by mouth to try and get her INR to a therapeutic level. She needs to be at 2.5 - 3.5 and currently she is at 1.7. We saw the doctor here in Birmingham Wednesday morning and he increased her Coumadin dose. We will go back to see him Monday. We're hoping for good news. She has come down with 4 or 5 swollen lymph nodes and a sore throat so the doctor gave her an antibiotic on Wednesday to knock that out. She is still moving slowly. The incisions are in the bends of both legs and her abdomen is completely black and blue due to the Fragmin (Louvenox type) shots being given there. That is one thing we did not expect at all. Only a couple of more days of that though.
Additionally she is very anemic. Her hemoglobin is currently 8. The doctor does not want to begin addressing this yet until we get the thickness of her blood under control. I can tell it is affecting her. She is pretty weak and tired and tires VERY easily. All things considered I know these things aren't too terrible and we are thankful. They are somewhat annoying for her but given what great news we got with the successful surgery and no need for any artificial grafting we can get through it. :)
Allison's spirits are doing okay. She is VERY thankful for the relative simplicity of her procedure and such. There is no doubt for that. She already feels physcial improvements and that is wonderful :) I think she is just ready to get going with her life if that makes sense. Lord willing she will go back to college in the fall. She'll be going close to home. She was able to get out for worship services last night and that was good for her. She is hoping to feel well enough to make it to her big sister Ashleigh's graduation from Florida College in Tampa next Thursday. The doctor told us that it would be physically safe but it is just how she feels.
Well, I'll stop for now. I'm sure you can all tell from the differences in posts that I'm a 'talker' and Barry isn't - haha.
Thank you, again and a million times, so much for all the love, friendship and support you have all shown to us during this difficult time. God has blessed us far above anything we ever imagined with the help you gave, the love and support you have shown and the wonderful news and treatment Allison received. To Him be all the glory.
In Christian Love,
Jennifer
p.s. Some have asked about sending Allison a card.
Our mailing address is:
PRESSNELL
366 JUSTICE ROAD
WARRIOR, AL 35180
Sorry for no update for a couple of days. We've just been trying to get caught up on sleep and take care of Allison. She is doing as well as to be expected. Her pain seems to be staying around a 7 or 8 when her medication wears off. This is normal and to be expected. We are still doing the Fragmin shots and the Coumadin by mouth to try and get her INR to a therapeutic level. She needs to be at 2.5 - 3.5 and currently she is at 1.7. We saw the doctor here in Birmingham Wednesday morning and he increased her Coumadin dose. We will go back to see him Monday. We're hoping for good news. She has come down with 4 or 5 swollen lymph nodes and a sore throat so the doctor gave her an antibiotic on Wednesday to knock that out. She is still moving slowly. The incisions are in the bends of both legs and her abdomen is completely black and blue due to the Fragmin (Louvenox type) shots being given there. That is one thing we did not expect at all. Only a couple of more days of that though.
Additionally she is very anemic. Her hemoglobin is currently 8. The doctor does not want to begin addressing this yet until we get the thickness of her blood under control. I can tell it is affecting her. She is pretty weak and tired and tires VERY easily. All things considered I know these things aren't too terrible and we are thankful. They are somewhat annoying for her but given what great news we got with the successful surgery and no need for any artificial grafting we can get through it. :)
Allison's spirits are doing okay. She is VERY thankful for the relative simplicity of her procedure and such. There is no doubt for that. She already feels physcial improvements and that is wonderful :) I think she is just ready to get going with her life if that makes sense. Lord willing she will go back to college in the fall. She'll be going close to home. She was able to get out for worship services last night and that was good for her. She is hoping to feel well enough to make it to her big sister Ashleigh's graduation from Florida College in Tampa next Thursday. The doctor told us that it would be physically safe but it is just how she feels.
Well, I'll stop for now. I'm sure you can all tell from the differences in posts that I'm a 'talker' and Barry isn't - haha.
Thank you, again and a million times, so much for all the love, friendship and support you have all shown to us during this difficult time. God has blessed us far above anything we ever imagined with the help you gave, the love and support you have shown and the wonderful news and treatment Allison received. To Him be all the glory.
In Christian Love,
Jennifer
p.s. Some have asked about sending Allison a card.
Our mailing address is:
PRESSNELL
366 JUSTICE ROAD
WARRIOR, AL 35180
Tuesday, April 21, 2009
Sweet Home Alabama :)
Hey Everyone...
We got home around 10:30-10:45 last night. I was exhausted and couldn't think straight to do the computer thing. We saw the doctor who organized the whole evaluation and treatment of Allison yesterday morning at 10:00. He was able to see some blood work that had been ordered did not get done so we went for bloodwork and then were free to leave. I think when we sat down in the Minneapolis airport we were around 3 hours until our flights home. It was nice to sit and rest. Allison didn't have to walk because they had a wheelchair for her everywhere along the way. We were also able to pre-board 1st so she got the front seat on each flight which made it easier for her to not be cramped in her seat and to move her legs a bit while sitting for a while.
When we got home my Aimee, mom (dad had picked us up at the airport), Sarah, Lauren, Becky & Billy McDuffee and Allee's friend Mark were all at the house with balloons waiting to see Allee. It was great. My mom had spent the day straightening the house and doing laundry so I feel RICH :)
All in all our trip was such a gift from God. He has blessed us in more ways than we ever knew and protected Allison so much without us knowing she even needed protecting. We give Him all the glory. Completely Him.
Allison's INR is being slow to come back up so she is on Fragmin shots twice daily, oral medication and Plavix. We already have an appointment at 8:00 a.m. on Wednesday with a new Internal Medicine doctor so he can help us.
I'm hoping to rest a bit today.
Thank you all for your love, support, prayers, prayers and more prayers. Knowing you are there has gotten me through on many an occasion. It seems as though we are over the hump and on our way to new horizons.
I love you all...
Jennifer
We got home around 10:30-10:45 last night. I was exhausted and couldn't think straight to do the computer thing. We saw the doctor who organized the whole evaluation and treatment of Allison yesterday morning at 10:00. He was able to see some blood work that had been ordered did not get done so we went for bloodwork and then were free to leave. I think when we sat down in the Minneapolis airport we were around 3 hours until our flights home. It was nice to sit and rest. Allison didn't have to walk because they had a wheelchair for her everywhere along the way. We were also able to pre-board 1st so she got the front seat on each flight which made it easier for her to not be cramped in her seat and to move her legs a bit while sitting for a while.
When we got home my Aimee, mom (dad had picked us up at the airport), Sarah, Lauren, Becky & Billy McDuffee and Allee's friend Mark were all at the house with balloons waiting to see Allee. It was great. My mom had spent the day straightening the house and doing laundry so I feel RICH :)
All in all our trip was such a gift from God. He has blessed us in more ways than we ever knew and protected Allison so much without us knowing she even needed protecting. We give Him all the glory. Completely Him.
Allison's INR is being slow to come back up so she is on Fragmin shots twice daily, oral medication and Plavix. We already have an appointment at 8:00 a.m. on Wednesday with a new Internal Medicine doctor so he can help us.
I'm hoping to rest a bit today.
Thank you all for your love, support, prayers, prayers and more prayers. Knowing you are there has gotten me through on many an occasion. It seems as though we are over the hump and on our way to new horizons.
I love you all...
Jennifer
Sunday, April 19, 2009
Just wanted to let all of you know that Allison got back to the hotel around 1:30 Saturday and is continuing her recovery here.
Her back is hurting her alot but the doctor told her to expect that for around three weeks.
She has two follow up appointments on Monday morning and barring any problems with her blood level, we will be driving north to Minneapolis tomorrow afternoon and flying back to Birmingham tomorrow night.
Thanks for all the well wishes and prayers.
God truly does answer prayers.
Barry and Jennifer
Her back is hurting her alot but the doctor told her to expect that for around three weeks.
She has two follow up appointments on Monday morning and barring any problems with her blood level, we will be driving north to Minneapolis tomorrow afternoon and flying back to Birmingham tomorrow night.
Thanks for all the well wishes and prayers.
God truly does answer prayers.
Barry and Jennifer
Saturday, April 18, 2009
Allison is recovering well so far
Allison had a somewhat rough evening last night with the pain in her back and nausea, but she seems to be feeling alot better this morning after they gave her some medicine for the nausea last night.
She was able to get some good rest and is feeling much better right now.
If things continue to progress well, we will be at the hotel this afternoon and tomorrow. She has two follow up appointments Monday morning and we should be able to fly home Monday evening.
Barry
She was able to get some good rest and is feeling much better right now.
If things continue to progress well, we will be at the hotel this afternoon and tomorrow. She has two follow up appointments Monday morning and we should be able to fly home Monday evening.
Barry
Friday, April 17, 2009
Allison out of surgery
Allison got out of surgery at around 4:35. The surgeon said everything went very well and is very optomistic about the outlook for her complete recovery.
She will stay in the hospital overnight and probably be released sometime tomorrow.
She will have a couple of follow up appointments on Monday morning and Lord willing we will be coming home Monday evening late.
Thanks again for all the prayers.
Barry and Jennifer
She will stay in the hospital overnight and probably be released sometime tomorrow.
She will have a couple of follow up appointments on Monday morning and Lord willing we will be coming home Monday evening late.
Thanks again for all the prayers.
Barry and Jennifer
Allee is in Surgery
Hello everyone. They took Allison in to surgery at 1:15 central time. The surgery should take 3-4 hours.
Her INR (blood thickness) was 1.4 and they had wanted it to be at least 2.4 or lower. She had to eat broccoli last night. She did not like it (haha).
We will update as soon as we can after she gets out.
Thanks,
Barry and Jennifer
Her INR (blood thickness) was 1.4 and they had wanted it to be at least 2.4 or lower. She had to eat broccoli last night. She did not like it (haha).
We will update as soon as we can after she gets out.
Thanks,
Barry and Jennifer
Thursday, April 16, 2009
Stents to be placed tomorrow morning
Allison did have her venogram today and the surgeon said her veins look good and predicts a successful outcome to the stent placement.
Her blood was still a little too thin today so we will be back in the morning early for him to do these.
More to come as soon as we know.
Barry
Her blood was still a little too thin today so we will be back in the morning early for him to do these.
More to come as soon as we know.
Barry
Venogram Started
Hello everyone,
Barry here. It is 10:44 am on Thursday and they took Allee back for her venogram about 20 minutes ago. We will not know whether or not they will place the stents today until a little later. If not today, it will be tomorrow.
We will post new information as we are given it.
Thanks,
Barry
Barry here. It is 10:44 am on Thursday and they took Allee back for her venogram about 20 minutes ago. We will not know whether or not they will place the stents today until a little later. If not today, it will be tomorrow.
We will post new information as we are given it.
Thanks,
Barry
Wednesday, April 15, 2009
11:00 Update on Wednesday 4/15/09
So here is the scoop....
Allison DOES HAVE an inferior vena cava. For whatever reason, at some point in her life she developed several large clots. Her IVC is completely blocked with old clots that have shrunk and pulled the vein small from the kidneys down to the iliac veins where it breaks off to the legs. She has a complete blockage of the right renal (kidney vein) but the kidney is functional with several small collateral vessels. She also has a narrowing of about 4 inches of the IVC behind the liver.
The plan is this....
A venogram at 5:30 in the morning. This is a special dye/x-ray test that will take about an hour. It will show exactly what is blocked and how much, etc. They place 2 IVs in the feet and possibly one in the jugular to inject the dye. The x-ray machine is like an arteriogram in an OR.
IF at the end of the venogram they draw blood and her INR (blood thickness) is between 2 and 2.4 then they will then (on the same table in the same room) do an interventional procedure to open with wires, balloons, etc. and place SEVERAL stents in the veins at multiple points. They will open everything up and stretch the veins open and leave stents in place. He said this will give Allison very good resolution of her problems.
IF her INR is still too high (yesterday it was 3.3) then they will conclude the venogram and do the procedure on Friday morning. Dr. Bjarnson is off but he said he will come in to do it. He said don't count our chickens before they hatch and that he is generally pessimistic. There is a 10% chance they cannot fix her. They may be able to help one place and not another. We will just have to see. This procedure would be at least another 3 hours.
Should everything go well then she could leave the next day with us remaining in town a few days and maybe going home at the first of the week. She will leave the hospital on low molecular weight heparin in the form of Louvenox shots daily and taking the drug Plavix.
She will have extensive back pain for 3 - 6 weeks following the procedure. We will have to fly back up here in 3 months for follow-up testing and evaluation.
Should this be successful he see's no problem with her having children in the future. That would only require the heparin shots daily.
I KNOW there is more I wrote down and will want to share but I'll do it later. We are waiting to see a hematologist now. We will have to get another hematologist there in Birmingham.
Please continue to pray for us and I love you all...
Jennifer
Allison DOES HAVE an inferior vena cava. For whatever reason, at some point in her life she developed several large clots. Her IVC is completely blocked with old clots that have shrunk and pulled the vein small from the kidneys down to the iliac veins where it breaks off to the legs. She has a complete blockage of the right renal (kidney vein) but the kidney is functional with several small collateral vessels. She also has a narrowing of about 4 inches of the IVC behind the liver.
The plan is this....
A venogram at 5:30 in the morning. This is a special dye/x-ray test that will take about an hour. It will show exactly what is blocked and how much, etc. They place 2 IVs in the feet and possibly one in the jugular to inject the dye. The x-ray machine is like an arteriogram in an OR.
IF at the end of the venogram they draw blood and her INR (blood thickness) is between 2 and 2.4 then they will then (on the same table in the same room) do an interventional procedure to open with wires, balloons, etc. and place SEVERAL stents in the veins at multiple points. They will open everything up and stretch the veins open and leave stents in place. He said this will give Allison very good resolution of her problems.
IF her INR is still too high (yesterday it was 3.3) then they will conclude the venogram and do the procedure on Friday morning. Dr. Bjarnson is off but he said he will come in to do it. He said don't count our chickens before they hatch and that he is generally pessimistic. There is a 10% chance they cannot fix her. They may be able to help one place and not another. We will just have to see. This procedure would be at least another 3 hours.
Should everything go well then she could leave the next day with us remaining in town a few days and maybe going home at the first of the week. She will leave the hospital on low molecular weight heparin in the form of Louvenox shots daily and taking the drug Plavix.
She will have extensive back pain for 3 - 6 weeks following the procedure. We will have to fly back up here in 3 months for follow-up testing and evaluation.
Should this be successful he see's no problem with her having children in the future. That would only require the heparin shots daily.
I KNOW there is more I wrote down and will want to share but I'll do it later. We are waiting to see a hematologist now. We will have to get another hematologist there in Birmingham.
Please continue to pray for us and I love you all...
Jennifer
11:00 Update on Wednesday 4/15/09
So here is the scoop....
Allison DOES HAVE an inferior vena cava. For whatever reason, at some point in her life she developed several large clots. Her IVC is completely blocked with old clots that have shrunk and pulled the vein small from the kidneys down to the iliac veins where it breaks off to the legs. She has a complete blockage of the right renal (kidney vein) but the kidney is functional with several small collateral vessels. She also has a narrowing of about 4 inches of the IVC behind the liver.
The plan is this....
A venogram at 5:30 in the morning. This is a special dye/x-ray test that will take about an hour. It will show exactly what is blocked and how much, etc. They place 2 IVs in the feet and possibly one in the jugular to inject the dye. The x-ray machine is like an arteriogram in an OR.
IF at the end of the venogram they draw blood and her INR (blood thickness) is between 2 and 2.4 then they will then (on the same table in the same room) do an interventional procedure to open with wires, balloons, etc. and place SEVERAL stents in the veins at multiple points. They will open everything up and stretch the veins open and leave stents in place. He said this will give Allison very good resolution of her problems.
IF her INR is still too high (yesterday it was 3.3) then they will conclude the venogram and do the procedure on Friday morning. Dr. Bjarnson is off but he said he will come in to do it. He said don't count our chickens before they hatch and that he is generally pessimistic. There is a 10% chance they cannot fix her. They may be able to help one place and not another. We will just have to see. This procedure would be at least another 3 hours.
Should everything go well then she could leave the next day with us remaining in town a few days and maybe going home at the first of the week. She will leave the hospital on low molecular weight heparin in the form of Louvenox shots daily and taking the drug Plavix.
She will have extensive back pain for 3 - 6 weeks following the procedure. We will have to fly back up here in 3 months for follow-up testing and evaluation.
Should this be successful he see's no problem with her having children in the future. That would only require the heparin shots daily.
I KNOW there is more I wrote down and will want to share but I'll do it later. We are waiting to see a hematologist now. We will have to get another hematologist there in Birmingham.
Please continue to pray for us and I love you all...
Jennifer
Allison DOES HAVE an inferior vena cava. For whatever reason, at some point in her life she developed several large clots. Her IVC is completely blocked with old clots that have shrunk and pulled the vein small from the kidneys down to the iliac veins where it breaks off to the legs. She has a complete blockage of the right renal (kidney vein) but the kidney is functional with several small collateral vessels. She also has a narrowing of about 4 inches of the IVC behind the liver.
The plan is this....
A venogram at 5:30 in the morning. This is a special dye/x-ray test that will take about an hour. It will show exactly what is blocked and how much, etc. They place 2 IVs in the feet and possibly one in the jugular to inject the dye. The x-ray machine is like an arteriogram in an OR.
IF at the end of the venogram they draw blood and her INR (blood thickness) is between 2 and 2.4 then they will then (on the same table in the same room) do an interventional procedure to open with wires, balloons, etc. and place SEVERAL stents in the veins at multiple points. They will open everything up and stretch the veins open and leave stents in place. He said this will give Allison very good resolution of her problems.
IF her INR is still too high (yesterday it was 3.3) then they will conclude the venogram and do the procedure on Friday morning. Dr. Bjarnson is off but he said he will come in to do it. He said don't count our chickens before they hatch and that he is generally pessimistic. There is a 10% chance they cannot fix her. They may be able to help one place and not another. We will just have to see. This procedure would be at least another 3 hours.
Should everything go well then she could leave the next day with us remaining in town a few days and maybe going home at the first of the week. She will leave the hospital on low molecular weight heparin in the form of Louvenox shots daily and taking the drug Plavix.
She will have extensive back pain for 3 - 6 weeks following the procedure. We will have to fly back up here in 3 months for follow-up testing and evaluation.
Should this be successful he see's no problem with her having children in the future. That would only require the heparin shots daily.
I KNOW there is more I wrote down and will want to share but I'll do it later. We are waiting to see a hematologist now. We will have to get another hematologist there in Birmingham.
Please continue to pray for us and I love you all...
Jennifer
Tuesday, April 14, 2009
Hello again. Barry here again.
Well, we have had a long, long, tiring day here at the Mayo Clinic. Allison had appointments for blood work, CAT scans, ultrasounds and consultations with the Cardiologist and Vascular surgeons.
We have good news that her heart is in good shape and the blood pressure in the veins is good, but that is about all we know that is definite as of now.
We are receiving alot of information about her disorder.
We do not know what the outcome will be, whether she will have surgery or not, but we are getting all the testing and information gathering appointments taken care of that are needed.
The vascular surgeon has ordered a venogram to get a more accurate "road map" as he calls it of Allee's circulatory system. We are not sure when that will take place, but it will probably be Thursday or Friday of this week.
When our schedule was made there had been a tentative time of Friday for possible surgery. While it is still a possibility, it is unlikely that surgery would be performed on Friday. There are just more tests that need to be performed. Once all the tests have been performed, the surgeons, or as they call themselves, the "Team", will get together and discuss the case.
We have told the doctors to order every test they deem necessary to properly diagnose this problem. We also told them that we do not want her to have surgery if it is not required or beneficial to her and of course they agree with that.
We will try to post again tomorrow with any information we may get.
Keep praying for us and the doctors.
Just another thought not about Allison or us. I know we all have our own set of troubles and worries and cares in this life, but when you come to a place like this you can't help but realize how truly blessed we are. There are many, many people here struggling with illnesses much worse and painful than most of us can imagine.
We should all be very thankful for the things we have and the health we and those close to us enjoy.
There is always someone, somewhere that is struggling with bigger and more serious things in their lives than we are.
Thanks,
Barry
Well, we have had a long, long, tiring day here at the Mayo Clinic. Allison had appointments for blood work, CAT scans, ultrasounds and consultations with the Cardiologist and Vascular surgeons.
We have good news that her heart is in good shape and the blood pressure in the veins is good, but that is about all we know that is definite as of now.
We are receiving alot of information about her disorder.
We do not know what the outcome will be, whether she will have surgery or not, but we are getting all the testing and information gathering appointments taken care of that are needed.
The vascular surgeon has ordered a venogram to get a more accurate "road map" as he calls it of Allee's circulatory system. We are not sure when that will take place, but it will probably be Thursday or Friday of this week.
When our schedule was made there had been a tentative time of Friday for possible surgery. While it is still a possibility, it is unlikely that surgery would be performed on Friday. There are just more tests that need to be performed. Once all the tests have been performed, the surgeons, or as they call themselves, the "Team", will get together and discuss the case.
We have told the doctors to order every test they deem necessary to properly diagnose this problem. We also told them that we do not want her to have surgery if it is not required or beneficial to her and of course they agree with that.
We will try to post again tomorrow with any information we may get.
Keep praying for us and the doctors.
Just another thought not about Allison or us. I know we all have our own set of troubles and worries and cares in this life, but when you come to a place like this you can't help but realize how truly blessed we are. There are many, many people here struggling with illnesses much worse and painful than most of us can imagine.
We should all be very thankful for the things we have and the health we and those close to us enjoy.
There is always someone, somewhere that is struggling with bigger and more serious things in their lives than we are.
Thanks,
Barry
We Are Here :)
Good Morning from the Mayo Clinic. (This is Barry by the way) Allison has just gone back for her 3rd appointment of the day and it is only 7:40 AM. Jennifer is back with her right now and that is why I am typing this. (I am not as good a typist as my wife so bear with typos and misused grammer please).
Right now Allee is having an ultrasound in the Gonda Building. This ultrasound is of the abdomen (another to come later today).
This place is HUGE but is also wonderful. They have everything set up in a very organized way. They sent us a schedule with times, places and the tests that are to be done and preparatory instructions for each test. They even tell you what desk to go to (very good for my simple mind).There are many volunteers here and they all seem to be very kind and helpful.
After this test we are off to the Rochester Methodist Hospital Charlton Building at 9:30, where Allee will have a CAT Scan of the Body.
We will update with further schedule a little later.
By the way, technology is wonderful. They have Wi-Fi throughout the hospital. Who would have ever thought that I could be sitting here updating on a somewhat realtime basis.
We continue to pray for good results from this trip and we deeply appreciate all the prayers of everyone.
Our God is a Wonderful God and is worthy of all praise.
Please continue to pray for us and also for our other two girls, Ashleigh, who is in Tampa, Floriday in college worrying, and for Aimee, who is at home spending her spring break worrying about her big sis. We have always been a close family and we also have always gone through big events in our lives together. So it has been hard on both of them not being able to come up with us.
Also pray that we will have the strength and understanding to accept that whatever happens is God's will.
Thank you for checking in and we will add more later.
Barry
Right now Allee is having an ultrasound in the Gonda Building. This ultrasound is of the abdomen (another to come later today).
This place is HUGE but is also wonderful. They have everything set up in a very organized way. They sent us a schedule with times, places and the tests that are to be done and preparatory instructions for each test. They even tell you what desk to go to (very good for my simple mind).There are many volunteers here and they all seem to be very kind and helpful.
After this test we are off to the Rochester Methodist Hospital Charlton Building at 9:30, where Allee will have a CAT Scan of the Body.
We will update with further schedule a little later.
By the way, technology is wonderful. They have Wi-Fi throughout the hospital. Who would have ever thought that I could be sitting here updating on a somewhat realtime basis.
We continue to pray for good results from this trip and we deeply appreciate all the prayers of everyone.
Our God is a Wonderful God and is worthy of all praise.
Please continue to pray for us and also for our other two girls, Ashleigh, who is in Tampa, Floriday in college worrying, and for Aimee, who is at home spending her spring break worrying about her big sis. We have always been a close family and we also have always gone through big events in our lives together. So it has been hard on both of them not being able to come up with us.
Also pray that we will have the strength and understanding to accept that whatever happens is God's will.
Thank you for checking in and we will add more later.
Barry
Monday, April 13, 2009
Welcome To Minnesota ;)
Well, we made it to Minneapolis. We spent the night with a wonderful family, Lance & Heidi Bailles. They were so kind to pick us (and our 6 large suitcases and 4 carry on's) up last night. It was so nice to see two smiling faces welcoming us here. We all slept very well and are looking forward to a home cooked Minnesota breakfast and some visiting before we head out to Rochester today.
Our flights went well. Just long. Allison's feet, ankles and lower legs were really swollen by the time we got here. She propped them up in the airport at Chicago but that didn't really help. They were hurting last night so we all went on to bed around 10:30 and it was nice.
So....that's where we are today. So thankful for being able to come here. We will get settled into our hotel this afternoon and go to Walmart (you have to go to Walmart) to pick up a few things and then just chill. Our first appointments at Mayo begin at 6:35 a.m. on Tuesday.
Have a wonderful day :)
And don't forget to give thanks and praise to our wonderful God ;)
Love,
Jennifer
Our flights went well. Just long. Allison's feet, ankles and lower legs were really swollen by the time we got here. She propped them up in the airport at Chicago but that didn't really help. They were hurting last night so we all went on to bed around 10:30 and it was nice.
So....that's where we are today. So thankful for being able to come here. We will get settled into our hotel this afternoon and go to Walmart (you have to go to Walmart) to pick up a few things and then just chill. Our first appointments at Mayo begin at 6:35 a.m. on Tuesday.
Have a wonderful day :)
And don't forget to give thanks and praise to our wonderful God ;)
Love,
Jennifer
Thursday, April 9, 2009
3 Days Til We Leave :)
Goodmorning Everyone...
I just wanted to update a little on our 'going's on' before we leave for Minnesota. We have just been packing, preparing things, etc. Running last minute errands and such. We are still excited and nervous but confident in our prayers that God's will be done. It is such a relief for us to have Him to lean on and turn to. And of course all of our spiritual family, physical family and friends too. The love and support from everyone means sooooo very, very much.
We were happy to put together the sheets explaining exactly what Allison's health problem is and the expectations for the Mayo Clinic trip. Several people don't have access to the internet or for whatever reason just liked a piece of paper explaining it better. I will say that we have been informed of a website for people with health issues and treatments, etc. so I will most likely in the next few days create this same blog there. But when I do I will post the new link here. The new site, Caringbridge.com, allows people to make comments easily, send notes, etc. It will even send you an email when I update the website saying there is a new update if you sign up for that. Plus I can get a few pictures on that one too.
I was going over our schedule for all of Allison's appointments and testing and such. It looks like we will have an answer about surgery no later than Wednesday afternoon. So that will be good.
Well I best go get some more done. Allison's legs are hurting a good bit today so she is resting right now. She didn't sleep well last night because of the pain.
I would like to ask you to remember the family of Bob Harber in your prayers. I know his daughter Nancy Picogna really well. He was diagnosed a few weeks back as having what was thought to be a benign mass in his intestines. It was decided Monday that it needed to be removed. They did surgery on Tuesday and it was found to actually be stage 4 cancer (colon I am assuming) that has penetrated the walls of the colon and is found to be in several places throughout the abdomen. This is such devastating news. Please pray for them all.
Have a blessed day...
Love,
Jennifer
I just wanted to update a little on our 'going's on' before we leave for Minnesota. We have just been packing, preparing things, etc. Running last minute errands and such. We are still excited and nervous but confident in our prayers that God's will be done. It is such a relief for us to have Him to lean on and turn to. And of course all of our spiritual family, physical family and friends too. The love and support from everyone means sooooo very, very much.
We were happy to put together the sheets explaining exactly what Allison's health problem is and the expectations for the Mayo Clinic trip. Several people don't have access to the internet or for whatever reason just liked a piece of paper explaining it better. I will say that we have been informed of a website for people with health issues and treatments, etc. so I will most likely in the next few days create this same blog there. But when I do I will post the new link here. The new site, Caringbridge.com, allows people to make comments easily, send notes, etc. It will even send you an email when I update the website saying there is a new update if you sign up for that. Plus I can get a few pictures on that one too.
I was going over our schedule for all of Allison's appointments and testing and such. It looks like we will have an answer about surgery no later than Wednesday afternoon. So that will be good.
Well I best go get some more done. Allison's legs are hurting a good bit today so she is resting right now. She didn't sleep well last night because of the pain.
I would like to ask you to remember the family of Bob Harber in your prayers. I know his daughter Nancy Picogna really well. He was diagnosed a few weeks back as having what was thought to be a benign mass in his intestines. It was decided Monday that it needed to be removed. They did surgery on Tuesday and it was found to actually be stage 4 cancer (colon I am assuming) that has penetrated the walls of the colon and is found to be in several places throughout the abdomen. This is such devastating news. Please pray for them all.
Have a blessed day...
Love,
Jennifer
Tuesday, April 7, 2009
Five Days :)
Hello, Hello...
We leave in five days. I'm in getting everything together and ready to go mode. It looks like I have all the paperwork we need from previous doctor visits and all test records. I'm just trying to pack here and there as I come across clothing. It is colder up there than here. We are excited.
Allison is very upbeat right now. She is spending a lot of time with her best friend, Sarah, and staying at her other house (haha- the McDuffee's). That is helping her keep her mind off things I think so that is good. Saturday Allison will be helping Aimee (her younger sister) get ready for the FC Alumni Spring Banquet which is an alternative to prom. So that will be a girly day.
I have to mention a sad note. I don't personally know the Harris family but they have a daughter, Kelsey, who has been battling a brain tumor (cancer) for a year and 3 months. Kelsey is 16 and she passed away yesterday. From what I've read Kelsey was a child of God and so she is not in pain any longer. I would ask you to pray for her mom and dad, two brothers and sister. Even though they knew it was coming it HAS to be hard.
We'll update later in the week.
Have a great day...
We leave in five days. I'm in getting everything together and ready to go mode. It looks like I have all the paperwork we need from previous doctor visits and all test records. I'm just trying to pack here and there as I come across clothing. It is colder up there than here. We are excited.
Allison is very upbeat right now. She is spending a lot of time with her best friend, Sarah, and staying at her other house (haha- the McDuffee's). That is helping her keep her mind off things I think so that is good. Saturday Allison will be helping Aimee (her younger sister) get ready for the FC Alumni Spring Banquet which is an alternative to prom. So that will be a girly day.
I have to mention a sad note. I don't personally know the Harris family but they have a daughter, Kelsey, who has been battling a brain tumor (cancer) for a year and 3 months. Kelsey is 16 and she passed away yesterday. From what I've read Kelsey was a child of God and so she is not in pain any longer. I would ask you to pray for her mom and dad, two brothers and sister. Even though they knew it was coming it HAS to be hard.
We'll update later in the week.
Have a great day...
Thursday, April 2, 2009
What To Expect
Good morning...
I wanted to post about what our options are for treatment in Minnesota. There are basically three options available to Allison, as far as we know currently.
One, there may possibly some type of vessel in the abdomen that, for whatever reason, failed to open and work at birth. There is a possibility that the physicians could use that vessel, open it up, stent it and make it work. This would be an ideal option as no artificial graft would need to be placed. This is something that Dr. Driscoll said may not be able to be known until they are physically looking inside.
Second, there is no useable vessel in the abdomen so an artificial vessel would need to be placed. This would entail a graft similar to things they use for aorta repair, etc. and it would have to be connected to all the smaller vessels leading off the IVC. This is a good option and there really wouldn't be anything like rejection meds or anything like that. This would be better than nothing.
Third, nothing surgically can be done. Dr. Driscoll was very optimistic about their being able to help Allee but this is still an option.
Obviously we are hopeful for some help for Allee. We are prayerful, though, that whatever the answers are and whatever may or may not be done that we are accepting of it and can process the information and live with it. It is so easy to get lost in the build up of hope that one could be devastated by less positive information.
Allison is doing good. She is getting over a sinus infection and an ear infection.
We are doing good as well. We would ask that you remember our other two daughters in this process. They are not able to go to Minnesota with us so that is hard. We are a very close family. They understand the limitations but it is still going to be hard for them. One will stay with family here in Alabama and the other is away at school in Tampa at Florida College. She will be finishing up her classes and going into final exams through it. We are just hopeful that everything will be wrapped up in time for us to all go to Tampa for her graduation from FC.
Have a great day...
Love,
Jennifer
I wanted to post about what our options are for treatment in Minnesota. There are basically three options available to Allison, as far as we know currently.
One, there may possibly some type of vessel in the abdomen that, for whatever reason, failed to open and work at birth. There is a possibility that the physicians could use that vessel, open it up, stent it and make it work. This would be an ideal option as no artificial graft would need to be placed. This is something that Dr. Driscoll said may not be able to be known until they are physically looking inside.
Second, there is no useable vessel in the abdomen so an artificial vessel would need to be placed. This would entail a graft similar to things they use for aorta repair, etc. and it would have to be connected to all the smaller vessels leading off the IVC. This is a good option and there really wouldn't be anything like rejection meds or anything like that. This would be better than nothing.
Third, nothing surgically can be done. Dr. Driscoll was very optimistic about their being able to help Allee but this is still an option.
Obviously we are hopeful for some help for Allee. We are prayerful, though, that whatever the answers are and whatever may or may not be done that we are accepting of it and can process the information and live with it. It is so easy to get lost in the build up of hope that one could be devastated by less positive information.
Allison is doing good. She is getting over a sinus infection and an ear infection.
We are doing good as well. We would ask that you remember our other two daughters in this process. They are not able to go to Minnesota with us so that is hard. We are a very close family. They understand the limitations but it is still going to be hard for them. One will stay with family here in Alabama and the other is away at school in Tampa at Florida College. She will be finishing up her classes and going into final exams through it. We are just hopeful that everything will be wrapped up in time for us to all go to Tampa for her graduation from FC.
Have a great day...
Love,
Jennifer
Wednesday, April 1, 2009
Counting Down
Well, April is finally here. For a long time it seemed 'far away.' Yesterday Allison and I went to see the pediatrician to knock out a sinus infection and ear infection she has. We don't need anything in the way when we go to Minnesota. We then ran errands trying to pick up a few things we need for the trip. Both for us in our travels and then Aimee here at home. I'm a list person so we just went here and there going down the list. Allison woked over the weeekend and was on her feet a good bit so she had a good bit of leg pain Monday.
We've been having some good discussions about what we might face. Many times with this disorder there is a cardiac aspect that exists. She will be thoroughly evaluated by Dr. Driscoll when we go. There is a little bit of intrepidation as to what that may reveal but we are just determined to face it all head on.
I hear Minnesota is still cold. That is interesting coming from Alabama where everything is blooming out and it was over 70 today.
Have a great evening...
Jennifer
We've been having some good discussions about what we might face. Many times with this disorder there is a cardiac aspect that exists. She will be thoroughly evaluated by Dr. Driscoll when we go. There is a little bit of intrepidation as to what that may reveal but we are just determined to face it all head on.
I hear Minnesota is still cold. That is interesting coming from Alabama where everything is blooming out and it was over 70 today.
Have a great evening...
Jennifer
Monday, March 30, 2009
Thank You, Thank You, Thank You
I wanted to say a quick thank you to all who have helped us raise money for the trip to Minnesota for treatment. We literally could NOT go without your help. It is so encouraging to be blessed by so many. We don't know who did what but you know and we thank you.
Please, please continue to pray for us. God has protected Allison thus far, even at times when we didn't know she needed it. We have complete that whatever is best for her will be done.
We love all of you so much.
Have a great day tomorrow.
Love,
Jennifer
Please, please continue to pray for us. God has protected Allison thus far, even at times when we didn't know she needed it. We have complete that whatever is best for her will be done.
We love all of you so much.
Have a great day tomorrow.
Love,
Jennifer
What The Problem Is Exactly...
Today I thought I would post about what exactly Allison has. It is a very rare disorder called Congenital Absence of the Suprarenal Level of the Inferior Vena Cava. As the diagram shows, her IVC stops at the level of the kidneys. There is an approximate 5 or 6 inch segment that isn't there and never was from birth. It is not uncommon for it 
to not be diagnosed in someone until they are in their 20's-40's
because the body compensates by using other vessels called
collateral vessels. The inferior vena cava is a large 1"+ vessel that carries all the blood from the organs and lower parts of the body back to the heart for re-oxygenation. The complications from having a missing segment are chronic venous insufficiency
in the legs due to the large volume of blood trying to be pumped
back to the heart through many small vessels. There is also
discoloration of the legs with dark spots, ulcerations developing
on the legs due to poor circulation and a great deal of pain in
the legs with just normal standing and walking. Allison seems to have fatigue as well, probably due to the poor circulation. The options are to rest as much as possible (she is 18), elevate the legs regularly (again, she is 18), lose weight to reduce the pressure on the legs and wear compression stockings (again, she is 18) regularly. If you google CAIVC you will find a few documented cases of the disorder and I found only two surgical interventions being reported in the U.S. of someone with Allison's exact disorder. In both of those cases the result was 'complete resolution of symptoms'. It took me a bit of time to process in my brain that we couldn't do anything. We went to the head of vascular/endovascular surgery here in Birmingham at a great hospital and he simply said, "There is nothing I can do." And even after I read and re-read the reported cases I didn't think to put it together until mid-January that I needed to seek out those physicians who had done this surgery and ask them to help Allison. And that is what I did. I also contacted the Mayo Clinic in Rochester, Minnesota to ask if they could help Allison because they have two things there. A specialized clinic called "The Vonda Vascular Center" and an even more specialized clinic within the Vonda Clinic called "Vascular Malformation Clinic." After having her medical records and studying those and about the disorder and consulting with one another I was called by Dr. David Driscoll, head of pediatric cardiology (as there is a cardiac aspect of her disorder that we haven't had any testing done as of now) and he offered a team of Dr. Peter Gloviski (head of vascular/endovascular surgery), an interventional radiologist, a hematologist and a GYN physician to consult and treat Allison. He was very optimistic that something could be done. They worked to get a time frame of several days together when all the physicans would be in town and available and set testing for 3 days in April with surgery scheduled for Friday, April 17, 2009. The hope and thought is that they can surgically repair the problem by putting an artificial vein in to do the work of what is missing.
We are both excited and nervous. Somewhat afraid of the unknown aspects of what is coming. We just know, however, that God is protecting us and guiding us in all things as long as we put our faith and trust in Him. We are blessed with so many friends, a great family physically and a wonderful spiritual family filled with many we know and don't know. God is so good!!!!
to not be diagnosed in someone until they are in their 20's-40's
because the body compensates by using other vessels called
collateral vessels. The inferior vena cava is a large 1"+ vessel that carries all the blood from the organs and lower parts of the body back to the heart for re-oxygenation. The complications from having a missing segment are chronic venous insufficiency
in the legs due to the large volume of blood trying to be pumped
back to the heart through many small vessels. There is also
discoloration of the legs with dark spots, ulcerations developing
on the legs due to poor circulation and a great deal of pain in
the legs with just normal standing and walking. Allison seems to have fatigue as well, probably due to the poor circulation. The options are to rest as much as possible (she is 18), elevate the legs regularly (again, she is 18), lose weight to reduce the pressure on the legs and wear compression stockings (again, she is 18) regularly. If you google CAIVC you will find a few documented cases of the disorder and I found only two surgical interventions being reported in the U.S. of someone with Allison's exact disorder. In both of those cases the result was 'complete resolution of symptoms'. It took me a bit of time to process in my brain that we couldn't do anything. We went to the head of vascular/endovascular surgery here in Birmingham at a great hospital and he simply said, "There is nothing I can do." And even after I read and re-read the reported cases I didn't think to put it together until mid-January that I needed to seek out those physicians who had done this surgery and ask them to help Allison. And that is what I did. I also contacted the Mayo Clinic in Rochester, Minnesota to ask if they could help Allison because they have two things there. A specialized clinic called "The Vonda Vascular Center" and an even more specialized clinic within the Vonda Clinic called "Vascular Malformation Clinic." After having her medical records and studying those and about the disorder and consulting with one another I was called by Dr. David Driscoll, head of pediatric cardiology (as there is a cardiac aspect of her disorder that we haven't had any testing done as of now) and he offered a team of Dr. Peter Gloviski (head of vascular/endovascular surgery), an interventional radiologist, a hematologist and a GYN physician to consult and treat Allison. He was very optimistic that something could be done. They worked to get a time frame of several days together when all the physicans would be in town and available and set testing for 3 days in April with surgery scheduled for Friday, April 17, 2009. The hope and thought is that they can surgically repair the problem by putting an artificial vein in to do the work of what is missing.
We are both excited and nervous. Somewhat afraid of the unknown aspects of what is coming. We just know, however, that God is protecting us and guiding us in all things as long as we put our faith and trust in Him. We are blessed with so many friends, a great family physically and a wonderful spiritual family filled with many we know and don't know. God is so good!!!!
Sunday, March 29, 2009
We're Up and Running Online
Well this is the first post on Allison's new blog page. We are going to use this as a way to keep everyone informed and up to date on what is happening with us as we get ready to go to The Mayo Clinic for treatment and surgery. We will be in Rochester, Minnesota for a while. Testing begins on Tuesday, April 14th and surgery is scheduled for Friday, April 17th. We are both excited, nervous, somewhat scared, anxious and yet very content with God's protection being with us. I'll post more about her disorder and what we expect and what the options are for her soon.
My name is Jennifer Pressnell and I am Allison's mom. She and I both will be adding to the blog from time to time. You may even get dad, Barry, or one of two sisters, Ashleigh or Aimee. Maybe even a Nanny ;)
Have a great week....Jennifer
My name is Jennifer Pressnell and I am Allison's mom. She and I both will be adding to the blog from time to time. You may even get dad, Barry, or one of two sisters, Ashleigh or Aimee. Maybe even a Nanny ;)
Have a great week....Jennifer
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