"Not motivated for a heart transplant".
Seems Tyler and I might be a bit to grouchy for a heart transplant. I guess our interview with the transplant social worker didn't go so well. Hmmmm, why were we grouchy that day? Okay, we got word that Tyler isn't on the transplant list yet. Wasn't a final no, just some concerns. The leg issues and narcotics for the pain is one and valid. As for not being motivated or not understanding the importance of a transplant..... not buying that one. If so, then I'd rather be in the Caribbean being unmotivated. We just had a bad interview (wasn't horrible, but we have been a bit frustrated lately). Dr. Brieke (Cardiologist) and Kathe (one of the VAD coordinators) are fighting for us. Kathe is even checking up on my health and I think has become my "Stephanie" (St. Luke's transplant coordinator) in Colorado. That is a big compliment, but I don't want to fan any flames of competition between Denver and Houston!
Tyler has an appointment with a director of the list April 19th so that the UCH staff can meet Tyler and get to know him and our situation better. We will meet the transplant team more as time goes by and everything will be fine. Sometimes I think Tyler and I can be a handful for the hospitals! I even mentioned that I was going to have to "re-engage in this full time again" if things didn't start progressing better. Tyler is handling his care and I want Tyler to control his "destiny", but I may be getting a bit impatient. Must.... control.... my.... control... issues!
Tyler has taken great strides in developing the strength in his bad foot. The neurologist thinks it is stronger than his "good" foot. He also continues to try and gain more weight (up to a limit...I mean we are talking about Tyler and you know, god forbid he gets fat.) He has also gained more independence and is able to make short errands by himself. He still gets tired and takes naps that are usually 2 hours or so.
There was another comment concerning listing on the transplant list: "... he is doing fine on the LVAD". Tyler's response was "...let them have an LVAD as see how fine it is.". I, on the other hand, went through the stages of coping in about an hour. I'm getting much faster at it. I went from "What?!" to "....I'm going to bomb so and so", to "eh, it will happen when it happens" pretty quick. And it will happen when it is ready to happen. We just need to "meet" the staff at UCH more. I forget that my "meeting" with St. Luke's was intense and they were able to figure us out since there was so much "quality" time together! I still miss my Houston team, but Colorado will pull through....no doubts.
Disability payments haven't started yet for Tyler and maybe they will in May. The will only go back to a March date since there is a 6 month period before being eligible for payments.
We have had some bigger fights and both have wanted to just walk away. But, we get over that intense moment or moments and keep moving forward. We still have days of depression and it appears I have taken to grinding my teeth in my sleep at night but only about 3 times so far. We tend to alternate depression days. But we are still kicking (and screaming) along....
We had another "alarm" event. We were being graciously treated to a dinner out with his parents from Lucy and Andrew at Elway's restaurant. It is a very nice restaurant and was wonderful treat. During salads we heard the battery alarm beeping. This was the '15 minutes' remaining alarm. Tyler and I went outside and swapped the batteries. Decided we shouldn't do that in the middle of the restaurant. I think we worried a couple of people but for us it was just another day. We have become used to this and take it in stride, but it still tends to freak out some people. For me at least, it is still better than last fall.
Robert
Wednesday, April 14, 2010
Tuesday, March 9, 2010
Looking for a rock.....
.....to crawl under.
What has been/is going on:
Then for me there is the intermittent wondering, when things are very quiet, if Tyler is still alive or just napping. I know the last statement was pretty heavy and it isn't as if I'm scared that would be the case, but the thought does run through my mind every now and then. Just part of this experience.
Then there is the uncertainty of what we will be able to do since our relationship is "unrecognized" by the federal/state governments. Okay, a political moment. We are in this together but we have to make sure that if we aren't entitled to any "benefits" in this relationship, we are also not required to satisfy the "responsibilities" of a recognized relationship. Sorry, the government can't have it both ways. Okay, they can, but it doesn't mean I have to like it.
About two weeks ago I finally felt glad to be home. There were just to many adjustments/responsibilities to go through at the beginning. But we are home. I do miss my Houston buddies .... St. Luke's staff, Janet and David, and all the great people that helped me through the beginning of this. We haven't met other transplant patients in Colorado and it was nice to be able to commiserate with Janet. David had his own scary issue come up due to a staph infection. Luckily it didn't infect the drive line and his is okay.
I miss the days of just getting a cold.
It was hard to put out posts to the blog in the past month because I wasn't sure what to write and wanted to concentrate on work. The challenges also seem/seemed overwhelming and I feel like I'm whining. And it isn't fun to write about being depressed. But I haven't really been in the mood to do the "keeping our chins up", "hoping for the best", "we'll pull through", type of writing. But, I keep trying to remember that if I can believe that bad unexpected things can happen (cancer, heart attack....), then I need to believe that good unexpected things can happen. Like having Ed McMahon show up with my Publisher's Clearinghouse prize.....oh, wait a minute, he's what? .....damn! Guess that isn't going to happen.
Unfortunately for my mother, we had two consecutive phone calls where she caught me at my lowest. She thought I should ask my doctor about taking anti-depressant pills. I joked with her saying my doctor said that was what mothers were for. ;-) I appreciate the concern, but I'm not quite ready for pills. Amazingly I think Tyler and I still have fight left in us. I'm not sure what the other side of this will end up being, but sometimes I wish it would just get here faster.
Robert
What has been/is going on:
- Three consecutive days of heart transplant evaluations planned for March 16th - 18th. University of Colorado Hospital (UCH) wants to do a full slate of evaluation tests before placing Tyler on the transplant list. Of course Anthem Blue Cross doesn't want to pay for evaluations that were already done in Houston. UCH and Anthem are supposedly working out what tests will be done and paid for. Otherwise we would have to come up for the money to pay for the tests. And if the tests aren't done, no listing on the transplant list.
- Still waiting on Anthem Blue Cross to approve, deny, or partially pay the Cozumel medical expenses including the air flight. We are stuck waiting for them to play the paper work shuffle games before we can file with the travel insurance. Even if Anthem would just deny the claims we would be better off, since we could send what we need (again) to the travel insurance company.
- My kidney stone surgery. Surgery went well and I had thought it went extremely well since I never felt any pain. Found out I still haven't passed the fragments. They are still sitting in my kidney. I would like just one of our ailments finished off. Maybe I'm asking to much? I'm sure the fragments will pick the most appropriate time to pass (like during a business meeting).
- Tyler caught his drive line in a car door. Also fell down a couple of exterior concrete steps and skinned his knee (yes, the knee on the bad leg). Luckily he is on blood thinners....oh wait a minute. Tyler called me to let me know what had happened so I figured since he was talking there was no reason to panic. He thought the same thing. Amazing what doesn't cause a panic anymore. He only split the cord cover a bit and barely exposed the internal wires. Went to the hospital and they taped it up and did an x-ray. Luckily none of the actual wires were damaged. They tested to see if there was damage to particular wires in the cord. Certain wires interact with the batteries and others to the power base unit. So you could cut some wires and have the batteries still work but not main power, or vice versa. Previously, if the cord was damaged, it would mean replacing the LVAD by having open heart surgery again. Thankfully there is now a repair-kit approved by the FDA. You can pick it up at any local hardware store....
- Been to a couple of VAD clinics at UCH. Anne and Kathe, VAD Coordinators, are great and funny. So far Tyler's blood work has remained in the range they want. Dr. Brieke, his primary cardiologist now, has a very nice laid back style. We have also met Dr. Reece and Dr. Cleveland, the heart transplant surgeons.
- A new year started for my insurance coverage and I have already had to meet the yearly deductible due to charges for oncology CT scans and x-rays, and the kidney stone surgery.
- Tyler not wild about going through a heart transplant and sometimes feels like he would rather stay with the LVAD. I still would like him to get the transplant. No more wires, can sleep in whatever position he would like, and (the most important) he could use the vacuum cleaner again!
- I sold my car. Just using Tyler's car for now. We'll see how that works out when Tyler is ready/able to drive again. But for now the extra monthly income will help out a bit.
- Tyler's parents coming for a visit. Haven't seen them since I used to live in Texas. I've fallen out of touch with them a little bit because Tyler is able to talk. But it will be nice to see them again.
- Tyler and our neighbor, Karen, took the dogs for a 45 minute walk. Tyler did this without using his cane and it went well. So the leg/foot is still improving. Still painful, but getting stronger. Still need to get his weight up. But he is now off the Nexium (acid reflux) and Furosemide (diuretic) pills.
Then for me there is the intermittent wondering, when things are very quiet, if Tyler is still alive or just napping. I know the last statement was pretty heavy and it isn't as if I'm scared that would be the case, but the thought does run through my mind every now and then. Just part of this experience.
Then there is the uncertainty of what we will be able to do since our relationship is "unrecognized" by the federal/state governments. Okay, a political moment. We are in this together but we have to make sure that if we aren't entitled to any "benefits" in this relationship, we are also not required to satisfy the "responsibilities" of a recognized relationship. Sorry, the government can't have it both ways. Okay, they can, but it doesn't mean I have to like it.
About two weeks ago I finally felt glad to be home. There were just to many adjustments/responsibilities to go through at the beginning. But we are home. I do miss my Houston buddies .... St. Luke's staff, Janet and David, and all the great people that helped me through the beginning of this. We haven't met other transplant patients in Colorado and it was nice to be able to commiserate with Janet. David had his own scary issue come up due to a staph infection. Luckily it didn't infect the drive line and his is okay.
I miss the days of just getting a cold.
It was hard to put out posts to the blog in the past month because I wasn't sure what to write and wanted to concentrate on work. The challenges also seem/seemed overwhelming and I feel like I'm whining. And it isn't fun to write about being depressed. But I haven't really been in the mood to do the "keeping our chins up", "hoping for the best", "we'll pull through", type of writing. But, I keep trying to remember that if I can believe that bad unexpected things can happen (cancer, heart attack....), then I need to believe that good unexpected things can happen. Like having Ed McMahon show up with my Publisher's Clearinghouse prize.....oh, wait a minute, he's what? .....damn! Guess that isn't going to happen.
Unfortunately for my mother, we had two consecutive phone calls where she caught me at my lowest. She thought I should ask my doctor about taking anti-depressant pills. I joked with her saying my doctor said that was what mothers were for. ;-) I appreciate the concern, but I'm not quite ready for pills. Amazingly I think Tyler and I still have fight left in us. I'm not sure what the other side of this will end up being, but sometimes I wish it would just get here faster.
Robert
Sunday, February 14, 2010
No pain, no gain
We are both doing fairly well. Tyler should be placed on the transplant list again sometime next week. Looks like he will be a 1B status. The transplant surgeon commented that typical wait time is between 6 weeks and 8 months, with about a 14 day average recovery.
We met with a neurologist about his leg/foot issue and they will be scheduling a nerve test to further diagnose the nerve damage. But the neurologist felt that the nerve(s) were regenerating and should continue to get better over time. Still trying to deal with the pain medicine so that a good balance between pain and the number of meds can be found.
Tyler continues to do his cardio exercise. Lasha, a friend, comes over about 2-3 times a week and takes Tyler to the gym. His walking is getting better, but since he still can't really feel his foot completely, he is still walking with a cane and can't drive.
I've returned to working more while scheduling Tyler and my doctor's appointments. I had my kidney stone checked out and will be having surgery March 1st. The procedure is Extracorporeal shock wave lithotripsy (ESWL). Basically sound waves are blasted at the kidney stone to break it up, so that it can pass. The kidney stone has been lodged in my kidney since last year. The doctors knew about the stone last year, but wanted to attack the cancer first. The stone is not really causing any massive pain right now but I don't want to wait until it dislodges. Hopefully the surgery will break up the stone enough that it will pass through somewhat unnoticed. So, I finally will get some pain meds also! What a sight our house will be those couple of days! There is also a hydrocele that has developed and may require a hydrocelectomy. I'll let those interested look that up on the web (https://health.google.com/health/ref/Hydrocele).
We both keep plugging along looking for the end of this tunnel. Most days are just about getting through the day and are pretty uneventful. There are days that both of us express just packing up and running away. Tyler continues to try and deal with the medical bills coming in and whether they are correct or should be paid for. Still waiting for information about disability payments and insurance reimbursements. I've sold my car and we have re-financed Tyler's car to get the monthly payments lower.
The Univ. of Colorado Hospital is doing pretty well so far. The VAD coordinators are great and we are just trying to learn a new system of who to bug about what and when. In comparison to St. Luke's I think what I miss is the "built-in" staff of doctors. The cardiologists, neurologist, pain medicine doctor, surgeons, fellows, physical therapists, etc. But basically we just have to set up that group in Colorado and rely more on the VAD coordinators, who will guide us through this process.
We had a small glitch when Tyler's Fentanyl patch strength was increased from 12mcg to 100 mcg. A little to much to say the least. Made Tyler clammy and nauseous and made him vomit. We went back to one of the 12mcg patches and are getting a new script for just 25mcg. This is in hope that with the slightly higher Fentanyl dose, he can reduce the Vicadin tablets.
So, my hope that 2010 would be all good news isn't quite coming true. But we are still here, in our house, and with our pets. Hopefully the good news for 2010 will be a new heart so that Tyler doesn't have to carry around batteries, I remain cancer free, and no more surgeries for Robert (and just one more for Tyler).
Robert
We met with a neurologist about his leg/foot issue and they will be scheduling a nerve test to further diagnose the nerve damage. But the neurologist felt that the nerve(s) were regenerating and should continue to get better over time. Still trying to deal with the pain medicine so that a good balance between pain and the number of meds can be found.
Tyler continues to do his cardio exercise. Lasha, a friend, comes over about 2-3 times a week and takes Tyler to the gym. His walking is getting better, but since he still can't really feel his foot completely, he is still walking with a cane and can't drive.
I've returned to working more while scheduling Tyler and my doctor's appointments. I had my kidney stone checked out and will be having surgery March 1st. The procedure is Extracorporeal shock wave lithotripsy (ESWL). Basically sound waves are blasted at the kidney stone to break it up, so that it can pass. The kidney stone has been lodged in my kidney since last year. The doctors knew about the stone last year, but wanted to attack the cancer first. The stone is not really causing any massive pain right now but I don't want to wait until it dislodges. Hopefully the surgery will break up the stone enough that it will pass through somewhat unnoticed. So, I finally will get some pain meds also! What a sight our house will be those couple of days! There is also a hydrocele that has developed and may require a hydrocelectomy. I'll let those interested look that up on the web (https://health.google.com/health/ref/Hydrocele).
We both keep plugging along looking for the end of this tunnel. Most days are just about getting through the day and are pretty uneventful. There are days that both of us express just packing up and running away. Tyler continues to try and deal with the medical bills coming in and whether they are correct or should be paid for. Still waiting for information about disability payments and insurance reimbursements. I've sold my car and we have re-financed Tyler's car to get the monthly payments lower.
The Univ. of Colorado Hospital is doing pretty well so far. The VAD coordinators are great and we are just trying to learn a new system of who to bug about what and when. In comparison to St. Luke's I think what I miss is the "built-in" staff of doctors. The cardiologists, neurologist, pain medicine doctor, surgeons, fellows, physical therapists, etc. But basically we just have to set up that group in Colorado and rely more on the VAD coordinators, who will guide us through this process.
We had a small glitch when Tyler's Fentanyl patch strength was increased from 12mcg to 100 mcg. A little to much to say the least. Made Tyler clammy and nauseous and made him vomit. We went back to one of the 12mcg patches and are getting a new script for just 25mcg. This is in hope that with the slightly higher Fentanyl dose, he can reduce the Vicadin tablets.
So, my hope that 2010 would be all good news isn't quite coming true. But we are still here, in our house, and with our pets. Hopefully the good news for 2010 will be a new heart so that Tyler doesn't have to carry around batteries, I remain cancer free, and no more surgeries for Robert (and just one more for Tyler).
Robert
Wednesday, January 27, 2010
Pictures
A few pictures as I try to get the rest online. I now have a link above to see the pictures from Houston, or you can click here: Pictures
Tyler ready for one of our "pre-release" outings while at St. Luke's.
Tyler and Keith (another LVAD patient) in Tyler's hospital room.
Robert changing Tyler's dressing.
Tyler's scars and cord.
Janet and David (David has an LVAD also). Our neighbors and friends and most importantly, mentors, in Houston. They lived in the same apartment complex. Tyler is in the background doing what Tyler does best....talking.
Monday, January 25, 2010
Colorado - UCH
Tyler and I had our first full appointment with the University of Colorado Hospital staff. We met with the medical doctor, nurse, circ support, and the heart transplant coordinator. Tyler had a 40 minute echo-cardiogram and the LVAD rpms were adjusted a little higher, to 9600, which should give him a little more energy. As if he needed more! Very hard to get him to rest, but as he says .."I have things to do".
The UCH staff was very friendly and jovial. The interaction between them seemed very collegiate. The "appointment" only took four hours. We were very tired afterward and experienced a little of that "information overload" feeling again.
Tyler's blood work came back very good. All the levels are where they want him to be and his anemic level is getting better. After looking over the current medications, we were able to remove the Dipyridamole. UCH sent in the form to our utility company so that if the power goes out we are on the priority list. UCH is also contacting the Wheat Ridge paramedics to inform them of our situation and the LVAD.
We still have to go through a transplant evaluation before he is listed active again on the heart transplant list in the Denver region. That evaluation is now set for February 4th. We found out that there are currently 10 people active on the heart transplant list in the Denver region.
One of Tyler's "things to do" is going through the medical bills, which is becoming the most confusing aspect of this whole event. One bill came with just a line that said "Balance Forward" and no explanation of the charge. When Tyler called about the charge, the comment he got was: "Well, it is complicated." Well, if you want to get paid, uncomplicated it! It will take some more months to sort out what is actually owed and how much insurance is actually going to pay, so in the meantime the bills wll just have to be filed.
I had my oncology scans and am still cancer free. They did find a kidney stone and I'm going to have that checked out today. I guess I'm just trying to see if I can have as much pain as Tyler. It will make for a very loud household!
Robert
The UCH staff was very friendly and jovial. The interaction between them seemed very collegiate. The "appointment" only took four hours. We were very tired afterward and experienced a little of that "information overload" feeling again.
Tyler's blood work came back very good. All the levels are where they want him to be and his anemic level is getting better. After looking over the current medications, we were able to remove the Dipyridamole. UCH sent in the form to our utility company so that if the power goes out we are on the priority list. UCH is also contacting the Wheat Ridge paramedics to inform them of our situation and the LVAD.
We still have to go through a transplant evaluation before he is listed active again on the heart transplant list in the Denver region. That evaluation is now set for February 4th. We found out that there are currently 10 people active on the heart transplant list in the Denver region.
One of Tyler's "things to do" is going through the medical bills, which is becoming the most confusing aspect of this whole event. One bill came with just a line that said "Balance Forward" and no explanation of the charge. When Tyler called about the charge, the comment he got was: "Well, it is complicated." Well, if you want to get paid, uncomplicated it! It will take some more months to sort out what is actually owed and how much insurance is actually going to pay, so in the meantime the bills wll just have to be filed.
I had my oncology scans and am still cancer free. They did find a kidney stone and I'm going to have that checked out today. I guess I'm just trying to see if I can have as much pain as Tyler. It will make for a very loud household!
Robert
Tuesday, January 19, 2010
JOY! JOY! JOY!
As you all know, from this wonderful blog that Robert has created, that we are now home. I just want everyone to know, once again, how thankful I am for all of the love and support you have shown both of us during this time. I am working on contacting everyone personally.
I have been out and trying to get my strength back.
We will continue to need your prays and support as we get ready for my heart transplant. Thankfully it will be taking place here in Colorado. We are hopeful that we will be put back on the active list at the end of this month.
Again, thank you and we love you all!
Tyler
I have been out and trying to get my strength back.
We will continue to need your prays and support as we get ready for my heart transplant. Thankfully it will be taking place here in Colorado. We are hopeful that we will be put back on the active list at the end of this month.
Again, thank you and we love you all!
Tyler
Saturday, January 16, 2010
Good to be home
Tyler and I made it home on Tuesday the 12th around 4pm. We made the trip in two days and stopped for the night on Monday in Blackwell, OK. When we left Blackwell it was about 20 degrees and heavy fog. The fog lasted for a couple of hours on our drive and started to dissipate once we were on I-70 headed west. The closer we got to Colorado the sunnier and warmer it became. As we crossed the state line into Colorado it was 64 degrees and sunny. I'm counting this as a cosmic sign that we were supposed to be going home.
We are adjusting to being home and starting a new routine. Still unpacking and sorting through the mail that has piled up. I had an electrician install a grounded outlet in the bedroom for the power module and he also put it on a dedicated circuit. The placement is perfect and allows Tyler to reach all the rooms upstairs. The "kids" were very glad to see us and of course Toby was very happy to see Tyler again. DJ stayed at the house the first night and most of Wednesday to help out. He truly has been wonderful and I still can't believe he was able to move into the house during Act I and Act II of Tyler's Heart! Unfortunately for DJ there is some separation anxiety between him and Toby.
We met with one of the VAD Coordinators (Kathe) at University of Colorado Hospital (UCH) on Friday while having blood work done. UCH is located in Aurora which is on the east side of Denver, in a very new medical center/campus, and about 20 minutes away from our house. On January 25th we will meet with the doctors, VAD coordinators, and the transplant social workers. Tyler's results came back and his INR level is 1.5, white blood cell count good, and a bit anemic (but still in a good range).
Friends have started coming by to "lay hands" on Tyler, bring meals, and to start getting trained on the LVAD equipment so that they can take Tyler around town without me. We also were treated to hair cuts by Orlando which was very appreciated! I was able to get my blood work and X-ray done Thursday and have a CT scan on Monday followed by my oncology appointment next Wednesday.
So things are slowly getting to a "new normal" and now Act III starts - waiting for a heart.
Robert
We are adjusting to being home and starting a new routine. Still unpacking and sorting through the mail that has piled up. I had an electrician install a grounded outlet in the bedroom for the power module and he also put it on a dedicated circuit. The placement is perfect and allows Tyler to reach all the rooms upstairs. The "kids" were very glad to see us and of course Toby was very happy to see Tyler again. DJ stayed at the house the first night and most of Wednesday to help out. He truly has been wonderful and I still can't believe he was able to move into the house during Act I and Act II of Tyler's Heart! Unfortunately for DJ there is some separation anxiety between him and Toby.
We met with one of the VAD Coordinators (Kathe) at University of Colorado Hospital (UCH) on Friday while having blood work done. UCH is located in Aurora which is on the east side of Denver, in a very new medical center/campus, and about 20 minutes away from our house. On January 25th we will meet with the doctors, VAD coordinators, and the transplant social workers. Tyler's results came back and his INR level is 1.5, white blood cell count good, and a bit anemic (but still in a good range).
Friends have started coming by to "lay hands" on Tyler, bring meals, and to start getting trained on the LVAD equipment so that they can take Tyler around town without me. We also were treated to hair cuts by Orlando which was very appreciated! I was able to get my blood work and X-ray done Thursday and have a CT scan on Monday followed by my oncology appointment next Wednesday.
So things are slowly getting to a "new normal" and now Act III starts - waiting for a heart.
Robert
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