The nurse called us yesterday and told us to go to admitting at Ochsner between 2-3 pm today. They are admitting him tonight for observation and pre-op prep for surgery tomorrow. We don't have much information yet about what's going to happen tomorrow. The nurse told me that there are two issues...the first that needs to be corrected is the mysterious problem they see on the CT. It's either fluid/pus/or infection trapped toward the bottom of his sternal incision and they believe that's the cause of the majority of his pain. The second issue is the non-joining of his sternum. We (or the nurse) doesn't know if his sternum will need to be re-broken to heal properly or if the removal of whatever fluid type stuff is trapped in there will help the sternum to heal properly on its own. We just now got in a room (7:15 pm--sat in admitting since 3:30 pm) and haven't seen the on call doctor yet. He or she may or may not know details of the plan for tomorrow. The good news is that the surgeon doing the surgery tomorrow knows exactly what's going on!!
Ok--so the doctor on call tonight just came in and has no idea what the deal is. He's going to call the heart team and tell them Danny's in a room and see what needs to be done tonight. As frustrating as it is (not really for us because we are used to it), I can tell this is going to be a "fluid" hospital stay. We probably won't know what's going on until tomorrow morning...or maybe not!! None of that maters to us very much. We are just grateful to be here and the surgeon will do something tomorrow to begin to solve the problem!!
I will post again when I have more info...Pray for doctor's wisdom, successful surgery, pain relief, information for us so we can tell family... thanks! ~T
Now it's about 10:00 pm. An anesthesiologist just came in to get release signed. He had no idea what type of surgery Danny is having...all they know is who the doctor is so they don't ask questions. He had Danny sign releases for 2 types of anesthesia so they're prepared to do whatever they need. Then a heart surgeon on call came in and said surgery is at 7:00 am but that's really all he knows. He's not sure if Danny's sternum will need to be broken open again for this surgery or not. So all we can do is wait and see what the surgeon finds tomorrow!! We really like this doctor and feel very comfortable with whatever he needs to do.
D will have pre-op tests and labs throughout the night tonight...
Will add more when I know more!! ~T
Wednesday, February 26, 2014
Monday, February 24, 2014
Mystery complication solved
Danny and I went to New Orleans today and saw the doctors. The surgeon was able to look at the actual CT film today (Danny had the CT done in Baton Rouge so Friday the doctors were only looking at a digital image) and identified the source of pain without needing an MRI.
Danny has a surgical non-union of the sternum. In simple terms that means that after the transplant his sternal incision did not heal correctly. Apparently this is not a RARE complication, but it isn't a COMMON one either. It's somewhere in between. The surgeon who did Danny's LVAD (unfortunately he was out of town the day of transplant or he would have done both surgeries) is going to repair Danny's sternum. The doctors also think there is fluid trapped inside of him, which could likely hold infection. We are not yet sure when the doctor is going to be able to surgically repair his chest but certainly hope that it's soon as Danny is in excruciating pain. The nurse is going to call tomorrow to let us know the plan. We aren't happy that his chest incision didn't heal correctly (either by error or by no fault), but are happy that the doctors see the problem and will be able to fix it. I would imagine that the recovery from surgery #3 will be faster and easier than the first two.
I will update tomorrow when I know more details...
Thanks for being faithful to pray for Danny and our family!
~Tricia
Danny has a surgical non-union of the sternum. In simple terms that means that after the transplant his sternal incision did not heal correctly. Apparently this is not a RARE complication, but it isn't a COMMON one either. It's somewhere in between. The surgeon who did Danny's LVAD (unfortunately he was out of town the day of transplant or he would have done both surgeries) is going to repair Danny's sternum. The doctors also think there is fluid trapped inside of him, which could likely hold infection. We are not yet sure when the doctor is going to be able to surgically repair his chest but certainly hope that it's soon as Danny is in excruciating pain. The nurse is going to call tomorrow to let us know the plan. We aren't happy that his chest incision didn't heal correctly (either by error or by no fault), but are happy that the doctors see the problem and will be able to fix it. I would imagine that the recovery from surgery #3 will be faster and easier than the first two.
I will update tomorrow when I know more details...
Thanks for being faithful to pray for Danny and our family!
~Tricia
Complication?!
Danny has been having excruciating chest & abdominal pain along his incision. The pain has been there since his transplant (12/17/13), but up until fairly recently we thought it was normal pain associated with two open heart surgeries. There is significant bruising along the incision, specifically at the bottom and a little at the top. We have told the doctors and nurses about how much pain he is in and up until last week we were told to remember that Danny just had his chest cut open twice and it's a marathon not a sprint. Last week their feelings changed and they became concern about the way his chest looks and his level of pain. He shouldn't be hurting the way he is at this point! Danny had a CT last Thursday and the doctors reviewed the results on Friday. Apparently something was visible but they could not agree on what...Two surgeons, a couple of the doctors on the heart transplant team, & infectious disease were all arguing according to the nurse. They decided that Danny should take Advil around the clock, begin an antibiotic and go to New Orleans Monday for an MRI. MRI's show soft tissue so whatever the problem is, it should be visible.
We are now in New Orleans waiting to be seen. The surgeon (the one who did the LVAD) looked at the CT films this morning and has spoken with a cardiac doctor. We will see her in about 30 minutes and she will hopefully be able to explain what the problem is. Last week, before the CT, the surgeon was thinking it was incisional hernias and thought it would be easy to see on a CT. If that's what it is, I have no idea why they couldn't figure it out on Friday. Anyway, we are anxious to see the doctor to find out what is going on. Our prayer is that there is something wrong that can be fixed. The alternative would be seeing a pain management specialist with the worst case scenario being something like a Morphine pump...that would be terrible!! Danny just needs relief from this severe pain...last week the surgeon was upset and said "we gave him a new heart which is working great, but because of his pain, he can't even use the heart!!" That's exactly how Danny feels...At this point, he felt better with the LVAD, which is pretty bad because he did not enjoy that part of this journey at all!!!
We are now in New Orleans waiting to be seen. The surgeon (the one who did the LVAD) looked at the CT films this morning and has spoken with a cardiac doctor. We will see her in about 30 minutes and she will hopefully be able to explain what the problem is. Last week, before the CT, the surgeon was thinking it was incisional hernias and thought it would be easy to see on a CT. If that's what it is, I have no idea why they couldn't figure it out on Friday. Anyway, we are anxious to see the doctor to find out what is going on. Our prayer is that there is something wrong that can be fixed. The alternative would be seeing a pain management specialist with the worst case scenario being something like a Morphine pump...that would be terrible!! Danny just needs relief from this severe pain...last week the surgeon was upset and said "we gave him a new heart which is working great, but because of his pain, he can't even use the heart!!" That's exactly how Danny feels...At this point, he felt better with the LVAD, which is pretty bad because he did not enjoy that part of this journey at all!!!
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| The bruising/redness at the top and bottom of his incision is where his pain is located. |
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| Last week Danny had a left heart cath (angiogram). They went in through the vein in his right wrist and fed the tube all the way up and over to his heart. They check for any plaque or problems that his new heart might have to serve as a baseline for comparison with future routine tests. He is soooo tired of being poked..but very grateful and blessed for modern medicine!! In addition to praying for Danny, we have an unspoken prayer request...It's not something I want to share publicly, but certainly the Lord knows what we need and will understand your prayers!!! Thanks~T |
Thursday, February 6, 2014
Long time, No Post!!
Well, I've dropped the ball and haven't blogged in a while. We were sent home from the Brent House (hotel attached to Ochsner in New Orleans) last week when a big (for Louisiana...lol) ice/snow storm was predicted to come through. The hospital was cancelling and sending home as many non-critical patients as possible. We were still in New Orleans awaiting another biopsy, a left heart cath (he's never had one of those--only right heart caths), and some other tests before the doctors were going to release us to go home. The nurse called us at about 5:00 pm to tell us to go home and by the time I packed and loaded everything, it was almost 7:00 before we left Nola.
We surprised the kids and they were both so excited when Danny and I walked in the door. Snowball, the dog, was hysterical with happiness. It took a few days to get the house back in order and I've been completely exhausted with that and just getting back into the routine of being a mom and house keeper. Taking care of Danny is a full-time job in itself because his medicines (and snacks) occur all throughout the day and his pain is still not good. He's still having a significant amount of incisional pain and some pretty bad pain on the right side of his chest--located sort of opposite his heart. Danny has mentioned the pain to the nurses when they call to check on him, but they say to remember that he's had his chest cut open two times in the last four months and pain is normal. So, we've just been trying to manage the pain and cope. Danny had the transplant 7 weeks and 2 days ago, which seems kind of unbelievable! Probably two weeks ago, the bottom part of the chest incision began swelling and bruising. That's also where the extreme pain is located. We've been trying not to worry about it and keep reminding ourselves that he's had two open heart surgeries, but often times the pain is disabling for him.
He still spends much of his time in bed. I try to get him out at least once a day but that doesn't always happen because he doesn't feel well enough. He is also very shaky and still falls down, though the falling is less. Some days his shakiness is so bad that he can't eat soup or anything liquid really. The shakiness is a side-effect of the medicines as is the extreme pain in his extremities. I don't think he usually hurts in his arms and legs at the same time, but it's always either one. they burn (like a fire coming from inside his bones), cramp, and ache. He asks me to rub his arms/legs but then cries because touching him hurts. Apparently these medicines always have some pain associated with them, but the severity Danny is having is not a common.
Yesterday the surgeon that did the LVAD (a different guy did the transplant because the first guy was out of town that particular day) called me to check on Danny. When I told him about the pain, swelling, and bruising he wasn't happy. He wasn't surprised to hear about the side-effects Danny is experiencing in his extremities, but was surprised about the incisional issues. He wants to see Danny when we are in New Orleans next for testing to check the incision and told me to call him immediately should any chest symptoms worsen.
On another note... a few days ago my dad, some friends, and I teamed together to move a really heavy armoire in our house. During the move, the mirrored door (which is the heaviest part of the armoire) fell on my friend Kelsey's big toe and my foot. I assume the corner landed on her toe and the side of the door landed on my foot. Her toe is broken...it's split from the tip to the knuckle. My foot is not broken, but is badly bruised and swollen. I feel so terrible that she was hurt and wish it was my toe instead of hers!! Anyway, now Danny and I are in this weird predicament of trying to take care of each other. I can finally walk without excruciating pain, but shoes are still not my friend! On a positive, the armoire did get completely moved and reassembled, and looks beautiful in its new spot--where it's staying forever...
Danny has a personal goal of returning to work at the beginning of March. Hopefully the doctors will sign off on that plan. Thankfully, software developing is more brain exercise than physical, so he should be okay. The trickiness will be keeping Danny away from sick people. Danny has to wear a face mask anytime he is outside of our home for at least a year. In addition, he isn't supposed to be around anyone who is sick. Having a suppressed immune system isn't something to take lightly! I don't know the logistics of how he will manage working around other people who may be sick, but the company he works for is amazing and has already done more for us than we could have imagined, so I know returning to work will be okay too!!
Baton Rouge has had 3 snow/ice days in the last couple of weeks...This is how south Louisiana kids dress for snow~HAHAHAHA...that's an icicle in Maggie's mouth!
It's great to be home again with these two kiddos... :)
We surprised the kids and they were both so excited when Danny and I walked in the door. Snowball, the dog, was hysterical with happiness. It took a few days to get the house back in order and I've been completely exhausted with that and just getting back into the routine of being a mom and house keeper. Taking care of Danny is a full-time job in itself because his medicines (and snacks) occur all throughout the day and his pain is still not good. He's still having a significant amount of incisional pain and some pretty bad pain on the right side of his chest--located sort of opposite his heart. Danny has mentioned the pain to the nurses when they call to check on him, but they say to remember that he's had his chest cut open two times in the last four months and pain is normal. So, we've just been trying to manage the pain and cope. Danny had the transplant 7 weeks and 2 days ago, which seems kind of unbelievable! Probably two weeks ago, the bottom part of the chest incision began swelling and bruising. That's also where the extreme pain is located. We've been trying not to worry about it and keep reminding ourselves that he's had two open heart surgeries, but often times the pain is disabling for him.
He still spends much of his time in bed. I try to get him out at least once a day but that doesn't always happen because he doesn't feel well enough. He is also very shaky and still falls down, though the falling is less. Some days his shakiness is so bad that he can't eat soup or anything liquid really. The shakiness is a side-effect of the medicines as is the extreme pain in his extremities. I don't think he usually hurts in his arms and legs at the same time, but it's always either one. they burn (like a fire coming from inside his bones), cramp, and ache. He asks me to rub his arms/legs but then cries because touching him hurts. Apparently these medicines always have some pain associated with them, but the severity Danny is having is not a common.
Yesterday the surgeon that did the LVAD (a different guy did the transplant because the first guy was out of town that particular day) called me to check on Danny. When I told him about the pain, swelling, and bruising he wasn't happy. He wasn't surprised to hear about the side-effects Danny is experiencing in his extremities, but was surprised about the incisional issues. He wants to see Danny when we are in New Orleans next for testing to check the incision and told me to call him immediately should any chest symptoms worsen.
On another note... a few days ago my dad, some friends, and I teamed together to move a really heavy armoire in our house. During the move, the mirrored door (which is the heaviest part of the armoire) fell on my friend Kelsey's big toe and my foot. I assume the corner landed on her toe and the side of the door landed on my foot. Her toe is broken...it's split from the tip to the knuckle. My foot is not broken, but is badly bruised and swollen. I feel so terrible that she was hurt and wish it was my toe instead of hers!! Anyway, now Danny and I are in this weird predicament of trying to take care of each other. I can finally walk without excruciating pain, but shoes are still not my friend! On a positive, the armoire did get completely moved and reassembled, and looks beautiful in its new spot--where it's staying forever...
Danny has a personal goal of returning to work at the beginning of March. Hopefully the doctors will sign off on that plan. Thankfully, software developing is more brain exercise than physical, so he should be okay. The trickiness will be keeping Danny away from sick people. Danny has to wear a face mask anytime he is outside of our home for at least a year. In addition, he isn't supposed to be around anyone who is sick. Having a suppressed immune system isn't something to take lightly! I don't know the logistics of how he will manage working around other people who may be sick, but the company he works for is amazing and has already done more for us than we could have imagined, so I know returning to work will be okay too!!
Baton Rouge has had 3 snow/ice days in the last couple of weeks...This is how south Louisiana kids dress for snow~HAHAHAHA...that's an icicle in Maggie's mouth!
It's great to be home again with these two kiddos... :)
Friday, January 17, 2014
Emotions
Yesterday and today (so far) have been fairly emotional for me. Yesterday, a pastor and a member of a church of which we don't belong came to visit and pray with us. To drive to New Orleans for people they don't know is such an expression of God's love and I am humbled and overwhelmed!
When Danny had the LVAD, we had direct contact (direct phone numbers) to the doctors and nurses on call. Both Danny and I were in the clinic on a regular basis and the staff was very involved with how he was doing and feeling. They also placed a lot of emphasis on the role of the caregiver and therefore included me in all discussions and visits. A large emphasis was put in the area of social work because the pressure on an LVAD patient and his/her caregiver is enormous. The social workers were incredible and both Danny and I truly appreciated the wonderful conversations we had. She cared about how Danny was doing, but also cared about me. We were spoiled...The team of doctors is the same now that Danny has had a transplant, but the nurses and coordinators are different ladies. Danny was discharged from the hospital (to the Brent House Hotel connected to Ochsner) on 12/31. If I'm not mistaken, he has been seen in the clinic one time since then…and that's when we called because fluid was squirting our of his chest incision. The nurse that is assigned to Danny's case while he's here in New Orleans does call him at least every couple of days--and sometimes daily to check on him. He does routine blood work in the lab at Ochsner, which the doctors and pharmacists follow closely and then the nurse calls to change medicines as needed.(which is often) We were told before being discharged about specific problems to call immediately for--to include if he feels anything that's not the same or just feels weird…He body can (and will according to them) reject at any point and any tiny change can indicate rejection. The nurses told me to be very aware of how he is acting/feeling because I will probably notice changes that he doesn't that may be an indicator of rejection.
Again, totally spoiled. I've only met the nurse the one time he was in clinic. Danny has had pitting edema in his ankles and feet for a couple of days now and his blood pressure has been running higher than it should be. These are issues that would have been caught already when he had the LVAD because they spoke with both of us often and returned calls immediately The truth is that the patient doesn't always give completely accurate information for whatever reason…which is why it's important to have the care giver present. Danny didn't call about the edema two days ago because even though he knew I was concerned, he wasn't. I had a minor melt down last night because his legs and feet were close to the same width from his knees to his toes--which is a LOT of fluid retention for Danny…he's a skinny man!! In his effort to "fix" my "meltdown", he paged the doctor on call (who was happy to hear from him.) She wasn't pleased with his edema and told him to call the clinic first thing this morning. He has left two messages from the nurse so far, and it's 11:31 and she still hasn't called back. I'm not feeling happy! Honestly, if it is so vital that we stay within 30 minutes of Ochsner for 6-8 weeks after transplant, why aren't we able to talk to the nurse when we feel there is a problem?
If I'm honest, I'm feeling sad because I'm not intentionally included in his health care…by that I mean the nurse just talks to him on the phone (on her terms apparently) and doesn't see him in clinic when I would be with him. I"m sure that's because he is doing wonderfully (overall) and they don't need to see him. So I feel like maybe I'm feeling sorry for myself because I'm not included…shame on those LVAD people for making us both feel so special!!! :) Anyway, it's hard and I know it seems selfish, unimportant, etc… Also, LVAD's are meant to be a bridge to transplant meaning the idea is to only have an LVAD for months-a couple of years at most while waiting for transplant. A transplanted heart has a life span of longer than that so it makes sense that the level and type of care we receive would not be as intense and "special" as it was for an LVAD. It would be super hard for the staff to give that kind of attention to patients and their caregiver for a long term thing. Still…I'm sad!
While I'm typing this, the nurse has called and Danny has asked many good questions. I'm excited for him to get off the phone and fill me in with the details.
Details:
Swollen legs and ankles: He is okay as long as in the morning when he wakes up the swelling is down some. If he wakes up and they are just as swollen, it's a negative and dangerous indicator that one of the immunosuppressants is not as a correct dosage. If the swelling persists over night, it indicates that blood vessels are bursting in his legs. But…that's not happening, so he's okay.
She said to remember that he's been through two major surgeries in the last four months and his body is all out of whack. The fluid will figure out were it's supposed to be at some point.
Blood pressure: The high BP is a result of a medicine that they were changing the doses for frequently…it takes a while to determine the best dose for each patient. According to blood work, they feel like they've found the best dose for Danny and therefore his BP should stabilize over the next couple of weeks. They may go ahead and give him a short term BP medicine to help him feel better quickly…they haven't decided yet.
Going home plan: Depending on the biopsy next Tuesday and labs, we may be able to go home next week! They won't have all results back in until Thursday probably, so I wouldn't think he could leave New Orleans until Thursday or Friday at the earliest. Again…that is completely dependent on good results!! yaaaaaayy and scaaaary!! We know from experience that it's hard to leave the safety and comfort of being in the hospital.
So, my concerns have been addressed and I feel better about that. And, it's okay (and good) that I have to lean on the Lord for my comfort when I'm scared and lonely--who needs nurses and social workers!!!!
~T
When Danny had the LVAD, we had direct contact (direct phone numbers) to the doctors and nurses on call. Both Danny and I were in the clinic on a regular basis and the staff was very involved with how he was doing and feeling. They also placed a lot of emphasis on the role of the caregiver and therefore included me in all discussions and visits. A large emphasis was put in the area of social work because the pressure on an LVAD patient and his/her caregiver is enormous. The social workers were incredible and both Danny and I truly appreciated the wonderful conversations we had. She cared about how Danny was doing, but also cared about me. We were spoiled...The team of doctors is the same now that Danny has had a transplant, but the nurses and coordinators are different ladies. Danny was discharged from the hospital (to the Brent House Hotel connected to Ochsner) on 12/31. If I'm not mistaken, he has been seen in the clinic one time since then…and that's when we called because fluid was squirting our of his chest incision. The nurse that is assigned to Danny's case while he's here in New Orleans does call him at least every couple of days--and sometimes daily to check on him. He does routine blood work in the lab at Ochsner, which the doctors and pharmacists follow closely and then the nurse calls to change medicines as needed.(which is often) We were told before being discharged about specific problems to call immediately for--to include if he feels anything that's not the same or just feels weird…He body can (and will according to them) reject at any point and any tiny change can indicate rejection. The nurses told me to be very aware of how he is acting/feeling because I will probably notice changes that he doesn't that may be an indicator of rejection.
Again, totally spoiled. I've only met the nurse the one time he was in clinic. Danny has had pitting edema in his ankles and feet for a couple of days now and his blood pressure has been running higher than it should be. These are issues that would have been caught already when he had the LVAD because they spoke with both of us often and returned calls immediately The truth is that the patient doesn't always give completely accurate information for whatever reason…which is why it's important to have the care giver present. Danny didn't call about the edema two days ago because even though he knew I was concerned, he wasn't. I had a minor melt down last night because his legs and feet were close to the same width from his knees to his toes--which is a LOT of fluid retention for Danny…he's a skinny man!! In his effort to "fix" my "meltdown", he paged the doctor on call (who was happy to hear from him.) She wasn't pleased with his edema and told him to call the clinic first thing this morning. He has left two messages from the nurse so far, and it's 11:31 and she still hasn't called back. I'm not feeling happy! Honestly, if it is so vital that we stay within 30 minutes of Ochsner for 6-8 weeks after transplant, why aren't we able to talk to the nurse when we feel there is a problem?
If I'm honest, I'm feeling sad because I'm not intentionally included in his health care…by that I mean the nurse just talks to him on the phone (on her terms apparently) and doesn't see him in clinic when I would be with him. I"m sure that's because he is doing wonderfully (overall) and they don't need to see him. So I feel like maybe I'm feeling sorry for myself because I'm not included…shame on those LVAD people for making us both feel so special!!! :) Anyway, it's hard and I know it seems selfish, unimportant, etc… Also, LVAD's are meant to be a bridge to transplant meaning the idea is to only have an LVAD for months-a couple of years at most while waiting for transplant. A transplanted heart has a life span of longer than that so it makes sense that the level and type of care we receive would not be as intense and "special" as it was for an LVAD. It would be super hard for the staff to give that kind of attention to patients and their caregiver for a long term thing. Still…I'm sad!
While I'm typing this, the nurse has called and Danny has asked many good questions. I'm excited for him to get off the phone and fill me in with the details.
Details:
Swollen legs and ankles: He is okay as long as in the morning when he wakes up the swelling is down some. If he wakes up and they are just as swollen, it's a negative and dangerous indicator that one of the immunosuppressants is not as a correct dosage. If the swelling persists over night, it indicates that blood vessels are bursting in his legs. But…that's not happening, so he's okay.
She said to remember that he's been through two major surgeries in the last four months and his body is all out of whack. The fluid will figure out were it's supposed to be at some point.
Blood pressure: The high BP is a result of a medicine that they were changing the doses for frequently…it takes a while to determine the best dose for each patient. According to blood work, they feel like they've found the best dose for Danny and therefore his BP should stabilize over the next couple of weeks. They may go ahead and give him a short term BP medicine to help him feel better quickly…they haven't decided yet.
Going home plan: Depending on the biopsy next Tuesday and labs, we may be able to go home next week! They won't have all results back in until Thursday probably, so I wouldn't think he could leave New Orleans until Thursday or Friday at the earliest. Again…that is completely dependent on good results!! yaaaaaayy and scaaaary!! We know from experience that it's hard to leave the safety and comfort of being in the hospital.
So, my concerns have been addressed and I feel better about that. And, it's okay (and good) that I have to lean on the Lord for my comfort when I'm scared and lonely--who needs nurses and social workers!!!!
~T
Wednesday, January 15, 2014
Barber Day
Today began with labs and then a visit to the barber. This hospital & hotel feels like a small (very small) city…2 cafeterias, tons of vending machines, gift shop, pharmacy with shopping, barber, beauty salon, fitness center, PJ's coffee, art shows, live music…Today the labs went better than they have been because they only had to stick him once and no veins blew out. He decided to use his right arm today..he hasn't been using it because of the major bruising and pain he had. It;s taken almost 3 weeks for the bruising on that arm to get better.
The pharmacy downstairs sells a bunch of relaxing, lavender products and sets. I look at it all the time but never buy any because I'd rather buy stuff for Danny or the kids. Look what I got in the mail from my aunt!!! It's even from the same company in the pharmacy…yaaaay!! (Danny likes the heated neck wrap…I would have never imagined that!!) She also sent some tulips, which are beautiful!
We've gotten gifts, cards, emails, prayers…we are so blessed by so many people. Thank you!!
~T
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| Arm getting better!! |
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| Nice haircut :-) |
The medicines Danny's on are so powerful…the side-effects are unbelievable! He has severe mood swings, weight gain, fluid retention, extreme hunger, exhaustion, shaking (often difficult to get food into his mouth). His legs and arms feel like they are on fire from the inside and there's not a way to make that go away. That particular side-effect is from the Prednisone. In 18 years of being married, Danny has never once wanted massages but now his body hurts so badly that he would be happy if i never stopped! He was telling me yesterday that one part of the struggle he's having is the balance between being absolutely grateful for the gift of his new heart, but not always feeling "woo hoo!! happy" because of the amount of pain he's in. He feels like people will perceive him to be ungrateful to some extent if he is honest about how he feels physically. He can definitely tell a huge improvement in his heart function--breathing and chest pain--but I know he won't feel the full extent of the blessing that his new heart is until he is much more recovered from the transplant. The nurses and doctors tell him all the time that this is a marathon, not a race, and it will be a long recovery.
So far, all biopsies have been negative, which is pretty amazing apparently. God is so good…and we know that He is answering the prayers of so many…THANK YOU FOR PRAYING!!! The doctors and nurses expect his body to reject at some point. It would be unheard of for it not to…I say lets pray about that too ! They also said that he needs to be prepared (mentally) to be in the hospital once a week for the rest of his life for rejection or other complications…wow…God can handle that too! How can someone prepare for that? That's not leading a normal life at all.
Danny's blood work hasn't been right this past week and they have been changing the dose of one of the immune suppressants a lot. It can get to a toxic level in the body easily so they watch it carefully. The problem is that the results are not able to be seen in the bloodwork for about 2 weeks, so it's a lot of thinking and planning for the doctors and pharmacists. The immunosuppressants and Prednisone effect blood pressure, so that has to be monitored carefully also. He's not on BP medicines yet, but I think that's in the future.
I know I've said this before, but writing this blog helps me to process and cope with information…so I repeat myself. A high concern for heart transplant patients is not necessarily related to heart problems, but all of the other problems that can result from a suppressed immune system. Various types of cancer, viruses, and other things. That's an area where we just really have to do what God says and take those thoughts and worries captive and trust Him with our fears. We must not worry about tomorrow, but rather be thankful for today. On hard days where things are just wrong…a good habit is to write a list of what we are thankful for. There are always blessings to be found.
He's "blossoming" is what the staff here says… :)
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| I was already "blossomed!!!!" |
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| Looking good-healing nicely! |
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| Not happy to wake up for early morning vitals and meds :) |
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| I think his puffiness is cute, but he's not loving it!! |
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| Trying to avoid a picture :) |
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The pharmacy downstairs sells a bunch of relaxing, lavender products and sets. I look at it all the time but never buy any because I'd rather buy stuff for Danny or the kids. Look what I got in the mail from my aunt!!! It's even from the same company in the pharmacy…yaaaay!! (Danny likes the heated neck wrap…I would have never imagined that!!) She also sent some tulips, which are beautiful!
We've gotten gifts, cards, emails, prayers…we are so blessed by so many people. Thank you!!
~T
Wednesday, January 8, 2014
Food
First of all...Danny's 3rd biopsy was negative meaning still no sign of rejection. And, his white blood count on labs was back to normal. Yaaay!! One of the anti-rejection meds was a little high on bloodwork, which can apparently be toxic if it's too high. So, they decreased that dose a bit today. Just as we grew accustomed to everything being fluid with the LVAD, medications with a transplant patient, particularly in the beginning, are also quite fluid! He has labs again in the morning to see if that anti-rejection dose is correct now. Labs are tough now because they need to fill on average 6 vials now, but his veins "blow" after only a small amount of blood is drawn so the have to stick him over and over again. Before all of this heart stuff Danny's veins were fine and drawing blood wasn't a problem, but now it's like his poor veins shrink up and wiggle out of the way anytime a needle comes near!! Danny also has big bruises all up and down his arms. Most of them are from the IV's before, during, and after transplant, but some of them are new. I know he will be so excited when it doesn't hurt to touch his arms!
Here's some irony. One of Danny's least favorite words is food...and now, because of the Prednisone and other meds, it's one of the main things he thinks about. He is always hungry! We have discovered that he really needs to eat a small meal with some of his meds or he will get sick. The thought of him vomiting this close to transplant makes me cringe!! Him thinking about food more than me is quite a change for us. I'm completely addicted to food. Thankfully, I don't suffer from any other forms of addiction...but my struggle with food is every but as real as a struggle with smoking or alcoholism. Food for me is emotional and physical. I turn to food for a variety of emotions and trying to eliminate sugar feels like what I would imagine detoxing being like. Anyway, because of the medicines, Danny is hungrier than I am and the terrible and completely selfish part of me thinks that's nice for a change! I think this is probably the first time he has ever felt consumed with hunger in his life and I think it will cause him to be more compassionate with my food battles in the future once he's out of this hungry stage.
Danny's face is getting puffier. He doesn't like it at all but I think he's as handsome as ever.
We are going to write to the donor family tomorrow. Finding the words that best express how thankful and blessed we are in the midst of their sorrow will be tough, but I'm looking forward to trying!
On January 1, many LVAD patients (along with many other Americans) lost their health insurance. The medical costs associated with an LVAD are staggering, not to mention the thought of being on a heart transplant list without insurance. I don't know how anyone could possibly pay for that. I'm not sure what Medicaid or Obamacare pays toward LVAD/transplant (if anything), but I know it's not as much as a reasonable private policy would pay. Danny and I gave his dressing change kits we had left over from when he still had the LVAD (about 2 months worth) to a woman who lost her insurance and she cried she was so appreciative. We are also donating his LVAD equipment to someone who won't be able to afford it anymore. We need to never forget to count every single blessing we have because there are people all around us who have so many more needs than we do. I take three medicines every month and the highest copay I've ever had to pay was $25.00. I refilled one the other day and it was more than $45.00. I thought geez...that's just one medicine and I have insurance!
~Tricia
Here's some irony. One of Danny's least favorite words is food...and now, because of the Prednisone and other meds, it's one of the main things he thinks about. He is always hungry! We have discovered that he really needs to eat a small meal with some of his meds or he will get sick. The thought of him vomiting this close to transplant makes me cringe!! Him thinking about food more than me is quite a change for us. I'm completely addicted to food. Thankfully, I don't suffer from any other forms of addiction...but my struggle with food is every but as real as a struggle with smoking or alcoholism. Food for me is emotional and physical. I turn to food for a variety of emotions and trying to eliminate sugar feels like what I would imagine detoxing being like. Anyway, because of the medicines, Danny is hungrier than I am and the terrible and completely selfish part of me thinks that's nice for a change! I think this is probably the first time he has ever felt consumed with hunger in his life and I think it will cause him to be more compassionate with my food battles in the future once he's out of this hungry stage.
Danny's face is getting puffier. He doesn't like it at all but I think he's as handsome as ever.
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| Facial puffiness timeline #1 |
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| #2 |
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| #3 |
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| #4 |
We are going to write to the donor family tomorrow. Finding the words that best express how thankful and blessed we are in the midst of their sorrow will be tough, but I'm looking forward to trying!
On January 1, many LVAD patients (along with many other Americans) lost their health insurance. The medical costs associated with an LVAD are staggering, not to mention the thought of being on a heart transplant list without insurance. I don't know how anyone could possibly pay for that. I'm not sure what Medicaid or Obamacare pays toward LVAD/transplant (if anything), but I know it's not as much as a reasonable private policy would pay. Danny and I gave his dressing change kits we had left over from when he still had the LVAD (about 2 months worth) to a woman who lost her insurance and she cried she was so appreciative. We are also donating his LVAD equipment to someone who won't be able to afford it anymore. We need to never forget to count every single blessing we have because there are people all around us who have so many more needs than we do. I take three medicines every month and the highest copay I've ever had to pay was $25.00. I refilled one the other day and it was more than $45.00. I thought geez...that's just one medicine and I have insurance!
~Tricia
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