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UPDATE Saturday, August 3, 2019 4:10 p.m.
Charles and I are both so grateful for the support we have received already with the fundraising efforts. Thank you, thank you, thank you! If you have not donated yet and have been intending to, thank you in advance. We're grateful for any amount that you send.
Just to update you on the latest with his situation, he underwent surgery a few days ago by a board-certified vascular surgeon from Sound Vascular in Federal Way. The procedure was necessitated by a failed procedure that had been done at St. Joseph Hospital two months prior. It had been performed by a PA-C, not an MD. The vascular surgeon had to go into Charles chest and remove the original tunneled dialysis catheter, which had failed to remain in its proper position, because (as the surgeon discovered) it was the wrong size that had been used previously and wasn't long enough. Consequently, over the two months it had been in place, it had worked its way out of position and sort of doubled-back on itself becoming blocked and preventing Charles from being able to undergo dialysis.
Thankfully the board-certified surgeon knew exactly what had been done wrong the first time down in Tacoma. He was able to remove the device and then use a balloon catheter to clean out the large vessel before performing the procedure to place a new one -- of the proper size and length -- and then sutured it into place anchoring it securely.
Immediately following the surgery, I drove Charles to the DaVita Dialysis Center in Tacoma and he was able to undergo dialysis. Typically a patient dialyzes three times a week (M-W-F or T-Th-S) so it is virtually every other day. Because of the mishap with the tunneled dialysis catheter that resulted in the need for the additional surgery, Charles did not receive dialysis until the 5th day after his last treatment. That is a life-threatening, dangerously long interval for a dialysis patient to wait between treatments; meanwhile all of the toxins are building up in a person's bloodstream. It puts a person at terrible risk.
The day after the vascular surgery, Charles was seen in follow-up by his primary care physician at Kaiser Permanente in Tacoma.
He underwent dialysis again on Thursday and one of the lines that his blood has to flow through clotted-off again. Thankfully, a nurse at the dialysis center was able to fish out the clot and get the hemodialysis machine running again to filter Charles' blood.
Friday it was back to Kaiser Permanente for Charles to see his nephrologist, the physician who supervises his dialysis treatment and other kidney-related issues.
Today I took him to dialysis again. He sent me a joy-filled text a couple of hours later that, "Everything is going well! Thank you for bringing me." Whew! What a relief to have one day when everything is going according to plan with no new crises. Hopefully we can turn this into a pattern of good days and treatments without complications.
He's still dealing with the massive hematoma on the back of his right thigh and calf. It is slowly healing, but he may yet have surgery to drain it.
The other upcoming thing is that in the third week of August he will undergo ultrasound 'mapping' of his right arm to select a site for placement of a new dialysis fistula. It's a brilliant surgical procedure where an artery and a vein are connected end-to-end. The higher blood pressure in the artery is what drives the success of this procedure. The vein has lower blood pressure, but it has thicker walls. It creates a 'head-on' collision of the blood coming from two different directions. When the blood runs into the 'fistula' it creates a swirling motion and that (over time) stretches the wall of the newly created vessel so that the thicker, tougher tissue of the vein increases in size and provides more surface area for the large needle-sticks that are necessary for dialysis. Once the surgery is done, it requires a waiting process before the fistula can begin to be used for dialysis.
It will take about six months of the blood swirling at that new junction to mature and expand the surface area of the vessel to create the desired size and strength for use for the repeated needle-sticks for dialysis to connect Charles to the machine. The needles are a large bore in order to facilitate the high volume of blood flow that is required by dialysis. To me, the needles are reminiscent of roofing nails, if you're familiar with the size of those. There are two (2) needles inserted into the fistula (one for venous blood flow and one for arterial blood flow) during every dialysis treatment and the needles have to stay in place for four (4) hours for the duration of the dialysis session.
The total volume of a patient's blood will be circulated and re-circulated through the tiny filters of the artificial kidney several times during the course of a single dialysis treatment. Even so, all of the impurities and toxins in the blood are never completely removed; only a certain percentage can be achieved at each treatment. That's why it can be life-threatening to miss even a single treatment.
Once all of these dialysis-related issues are managed and stabilized, then at some point down the line (months from now or perhaps next year) Charles still needs to undergo open-heart surgery to replace his aortic valve.
Charles has been through so much! Thank you again for your loving and thoughtful gifts, cards, prayers and good thoughts. We are grateful for your support.
#ThankYou #Gratitude #Donate #BloodDonor #OrganDonor #ESRD #EndStageRenalFailure #CKD #ChronicKidneyDisease #CHF #CongestiveHeartFailure
........................................................................................................................................................................................................
Every day is a miracle that Charles is still alive. We are thankful for organ donors and blood donors. No way to express just how thankful we are or what it means to us...
Getting right to the point: Charles is in a fight for his life. It’s a full-time job for me keeping him -- the love of my life -- alive. We are holding on for dear life and need your help urgently. (see detailed Review below)
We are blessed in so many ways and thankful for the friends who have done so much for us; countless prayers have been answered through crisis after crisis.
One friend suggested reaching out with a GoFundMe campaign.
I’m hoping that Charles’ complex medical issues will soon become stabilized enough that I can safely return to work and he will be okay. But right now, we need your help -- urgently.
Recently, I was given a referral/recommendation for a job in Seattle as a writer. I was eager to submit my application for it. The person who referred me said I’d be “perfect” for it. That meant so much to me.
Our Dell desktop PC has served our needs for an incredible 16 years, but in the midst of my application process, it crashed.
I switched over to Charles' laptop and it crashed. The 10-year-old laptop was kaput.
What are the odds that BOTH of our computers would FAIL on the same day after a combined 26 years of usage?!? It has been an absolute nightmare. I was stymied on being able to complete that important application without access to my resume, files with writing samples, references, etc. The one ray of sunshine was that all of our files were safely backed up with Carbonite. The files were safe even though the computers were shot.
Replacing the computer was essential to be able to connect with the outside world. A very kind, dear old friend with a big heart gave us his two old laptops, but they have aged out of service to the extent they cannot connect to the internet. We are grateful to have them, but still hamstrung. (Perhaps a small IT museum is in our future...) Thanks to everyone's initial donations we have been able to replace the desktop computer. What a huge relief that is! We are so grateful!!!
Our cell phones are 7 years old and various apps and websites can no longer be updated or accessed. Most critically I am no longer was able to access LinkedIn or any of my business and professional contacts. Argh! Thwarted again from a business standpoint.
Speaking of aging equipment (myself included LOL) our car is 28 years old.
1991 Volvo. We call her “Red Beauty” -- not that she’s beautiful to anyone but us, but we went for two years without a car.
Charles was driving an elderly friend to visit her husband in an adult family home when they were struck broadside by another car that ran a red light. That T-bone impact was so hard, it spun the car around and resulted in it being a total loss.
Charles sustained several herniated discs, as did our friend. Due to high mileage on our car, even though we had insurance, it was not worth hardly anything when paid off. We ended up on foot or on the bus for the next two years. That's why we are so very grateful that we have a car at all now and to us she is “Red Beauty.” We are so thankful to get from Point A to Point B (mostly doctors appointments or hospitals, as it seems recently), but it is always worrisome “what if…the car breaks down?" We have no backup resource.
The only alternative was to take Uber. Sadly, now that our phones are so outdated, we can no longer even update the Uber app. Consequently, if “Red Beauty” were to break down, we cannot even request Uber. We are just plain stranded. We are living living by faith -- hoping and praying -- minute-by-minute to just get by.
Most are not aware that I underwent cardiac catheter cryoablation last June at Virginia Mason Hospital in Seattle. That procedure involved freezing part of the inside of my heart to prevent the transmission of electrical impulses that had been causing atrial fibrillation for 10 years. It worked. It was successful until about a month ago when the a-fib returned with a vengeance. Cardiac Catheter Cryoablation
My heart awakened me from sleep at 2 a.m. ...
Ironically, I had just brought Charles home from the hospital after he had been discharged for treatment of pneumonia and pericarditis. Charles had literally only been home for 4 hours following a 9-day stay in ICU. We had gone to sleep at 10 p.m.
I awoke at 2 a.m. with my heart beating at 180 beats per minute. It would not slow down. I dreaded the thought of having to go to the ER I didn’t want to risk leaving Charles home by himself or of taking him with me back to the hospital.
Long story short: My heart continued to beat at 180 beats per minute for the next 2 weeks until I could get scheduled at Virginia Mason Hospital to undergo “cardioversion” where electric shock was used to stop and restart my heart to put it back into a normal rhythm at a reasonable rate.
The same day that I was scheduled for “cardioversion” at Virginia Mason, Charles was also scheduled there for ultrasound mapping of his right arm for creation of a new fistula (dialysis access) in expectation that at some point he would be going back on dialysis.
We were so fortunate that Charles’ friend Albert was available to drive the two of us up to Seattle and back that day. We just did not know how soon Charles would need to be starting dialysis. As it turned out, it was on an emergency basis, the following day in Tacoma at St. Joseph Hospital.
REVIEW of what Charles has gone through since last October...
Those lumps and bumps on his left arm and chest were a massive aneurysm that developed. The vascular surgeons who treated him said that in their 20+ years of practice they had never seen anything like that. It was more than 4-inches in diameter. It took 45 staples to close the incisions all the way up to the base of his neck. He underwent that risky surgery and transfusions to in October. He still needs another operation to deal with a hematoma that formed in the surgery site after that procedure.
In November, he began having episodes of amnesia. This was so bewildering -- terrifying to me, as I didn't know how to help him.
In February, he underwent a heart cath to be cleared by cardiology to undergo general anesthesia for robotic surgery to remove his left native kidney because they had found renal cell carcinoma (kidney cancer) in it. The cancer had been growing for more than a year.
In March, he had cancer surgery and the kidney was removed by the robotic-assisted technique. Thankfully, they got all of the cancer. Sad news though is that now with having had cancer, and with the complete failure of his kidney transplant, he will not be allowed to be put back on the Waiting List for another kidney transplant until he has been “cancer-free” for 3 years.
Grand mal seizures were the next development. Never had a seizure before in his life. He fell and suffered numerous injuries and ended up in ICU for trauma for 9 days at Tacoma General. It turns out that he is the 1 person out of 100 who will have seizures as a reaction to EPO, the medication he's being given to treat his severe anemia. The anemia is caused by the kidney failure, so he has to take the injections despite this complication.
We are so thankful that there was one alternative medication to the EPO and he has been started on it with no bad reactions, no more seizures and now his anemia is improving. What a blessing! It seemed so hopeless. It now seems miraculous. Hooray that he can drive again!
Next, his kidney transplant (from 22 years earlier) failed completely.
He was admitted through the ER for lifesaving surgery to place a port in his chest to begin emergency dialysis. (see the image showing the tubes protruding from his chest; they will be in place for six months for dialysis access) During the initial phase of this hospitalization he was treated with dialysis daily. Now he is on a Tuesday, Thursday and Saturday evening schedule as an outpatient.
The day after the surgery in his upper left chest to place the “tunnel catheter” (port) for dialysis, they discovered almost 2 liters of fluid had collected around his heart. Another emergency surgery followed STAT in the Heart Cath Lab. An incision was made through the left side of his chest and into the sac around his heart to drain the fluid and install a "window" drain and catheter to continuously drain fluid from his heart. The heart surgeon told me afterward that if that had not been done right then, that Charles would have died; his heart was drowning. I have never known a doctor to be quite so candid or blunt. It was a very close call. Again, so thankful that Charles survived.
Seventeen more days in ICU and daily dialysis while hospitalized. The amount of fluid overload from the kidney failure was significant. His weight was 211 when admitted and 180 when discharged. His blood pressure is still running in crazy high numbers though like 210/110, so worrisome for stroke and not yet controlled.
The port in his chest will remain in place as his "lifeline" for six months. Those tubes protruding from his chest are his 'lifeline'.
He needs yet another surgery to create a dialysis access site in his right arm. That is scheduled in late August, if his condition has completely stabilized by then.
Sometime after that in the months ahead he will tentatively undergo open heart surgery to replace his aortic valve.
He was discharged to home a little over a week ago with 10 new prescriptions. Now that he is in total kidney failure and back on dialysis, many of his meds have changed. He has 19 prescription meds altogether. It's all so complicated.
Countless prayers have been answered that he has even survived all of this so far.
Thank you in advance for your consideration -- even if you are not currently able to provide the financial assistance -- but we will be so grateful, if you can. Prayers are ALWAYS welcome!
Nearby, a tiny church has the perfect comforting message on its reader board. It spoke to my heart. "Even at your wit’s end, God is there."
Charles and I are both so grateful for the support we have received already with the fundraising efforts. Thank you, thank you, thank you! If you have not donated yet and have been intending to, thank you in advance. We're grateful for any amount that you send.
Just to update you on the latest with his situation, he underwent surgery a few days ago by a board-certified vascular surgeon from Sound Vascular in Federal Way. The procedure was necessitated by a failed procedure that had been done at St. Joseph Hospital two months prior. It had been performed by a PA-C, not an MD. The vascular surgeon had to go into Charles chest and remove the original tunneled dialysis catheter, which had failed to remain in its proper position, because (as the surgeon discovered) it was the wrong size that had been used previously and wasn't long enough. Consequently, over the two months it had been in place, it had worked its way out of position and sort of doubled-back on itself becoming blocked and preventing Charles from being able to undergo dialysis.
Thankfully the board-certified surgeon knew exactly what had been done wrong the first time down in Tacoma. He was able to remove the device and then use a balloon catheter to clean out the large vessel before performing the procedure to place a new one -- of the proper size and length -- and then sutured it into place anchoring it securely.
Immediately following the surgery, I drove Charles to the DaVita Dialysis Center in Tacoma and he was able to undergo dialysis. Typically a patient dialyzes three times a week (M-W-F or T-Th-S) so it is virtually every other day. Because of the mishap with the tunneled dialysis catheter that resulted in the need for the additional surgery, Charles did not receive dialysis until the 5th day after his last treatment. That is a life-threatening, dangerously long interval for a dialysis patient to wait between treatments; meanwhile all of the toxins are building up in a person's bloodstream. It puts a person at terrible risk.
The day after the vascular surgery, Charles was seen in follow-up by his primary care physician at Kaiser Permanente in Tacoma.
He underwent dialysis again on Thursday and one of the lines that his blood has to flow through clotted-off again. Thankfully, a nurse at the dialysis center was able to fish out the clot and get the hemodialysis machine running again to filter Charles' blood.
Friday it was back to Kaiser Permanente for Charles to see his nephrologist, the physician who supervises his dialysis treatment and other kidney-related issues.
Today I took him to dialysis again. He sent me a joy-filled text a couple of hours later that, "Everything is going well! Thank you for bringing me." Whew! What a relief to have one day when everything is going according to plan with no new crises. Hopefully we can turn this into a pattern of good days and treatments without complications.
He's still dealing with the massive hematoma on the back of his right thigh and calf. It is slowly healing, but he may yet have surgery to drain it.
The other upcoming thing is that in the third week of August he will undergo ultrasound 'mapping' of his right arm to select a site for placement of a new dialysis fistula. It's a brilliant surgical procedure where an artery and a vein are connected end-to-end. The higher blood pressure in the artery is what drives the success of this procedure. The vein has lower blood pressure, but it has thicker walls. It creates a 'head-on' collision of the blood coming from two different directions. When the blood runs into the 'fistula' it creates a swirling motion and that (over time) stretches the wall of the newly created vessel so that the thicker, tougher tissue of the vein increases in size and provides more surface area for the large needle-sticks that are necessary for dialysis. Once the surgery is done, it requires a waiting process before the fistula can begin to be used for dialysis.
It will take about six months of the blood swirling at that new junction to mature and expand the surface area of the vessel to create the desired size and strength for use for the repeated needle-sticks for dialysis to connect Charles to the machine. The needles are a large bore in order to facilitate the high volume of blood flow that is required by dialysis. To me, the needles are reminiscent of roofing nails, if you're familiar with the size of those. There are two (2) needles inserted into the fistula (one for venous blood flow and one for arterial blood flow) during every dialysis treatment and the needles have to stay in place for four (4) hours for the duration of the dialysis session.
The total volume of a patient's blood will be circulated and re-circulated through the tiny filters of the artificial kidney several times during the course of a single dialysis treatment. Even so, all of the impurities and toxins in the blood are never completely removed; only a certain percentage can be achieved at each treatment. That's why it can be life-threatening to miss even a single treatment.
Once all of these dialysis-related issues are managed and stabilized, then at some point down the line (months from now or perhaps next year) Charles still needs to undergo open-heart surgery to replace his aortic valve.
Charles has been through so much! Thank you again for your loving and thoughtful gifts, cards, prayers and good thoughts. We are grateful for your support.
#ThankYou #Gratitude #Donate #BloodDonor #OrganDonor #ESRD #EndStageRenalFailure #CKD #ChronicKidneyDisease #CHF #CongestiveHeartFailure
........................................................................................................................................................................................................
Every day is a miracle that Charles is still alive. We are thankful for organ donors and blood donors. No way to express just how thankful we are or what it means to us...
Getting right to the point: Charles is in a fight for his life. It’s a full-time job for me keeping him -- the love of my life -- alive. We are holding on for dear life and need your help urgently. (see detailed Review below)
We are blessed in so many ways and thankful for the friends who have done so much for us; countless prayers have been answered through crisis after crisis.
One friend suggested reaching out with a GoFundMe campaign.
I’m hoping that Charles’ complex medical issues will soon become stabilized enough that I can safely return to work and he will be okay. But right now, we need your help -- urgently.
Recently, I was given a referral/recommendation for a job in Seattle as a writer. I was eager to submit my application for it. The person who referred me said I’d be “perfect” for it. That meant so much to me.
Our Dell desktop PC has served our needs for an incredible 16 years, but in the midst of my application process, it crashed.
I switched over to Charles' laptop and it crashed. The 10-year-old laptop was kaput.
What are the odds that BOTH of our computers would FAIL on the same day after a combined 26 years of usage?!? It has been an absolute nightmare. I was stymied on being able to complete that important application without access to my resume, files with writing samples, references, etc. The one ray of sunshine was that all of our files were safely backed up with Carbonite. The files were safe even though the computers were shot.
Replacing the computer was essential to be able to connect with the outside world. A very kind, dear old friend with a big heart gave us his two old laptops, but they have aged out of service to the extent they cannot connect to the internet. We are grateful to have them, but still hamstrung. (Perhaps a small IT museum is in our future...) Thanks to everyone's initial donations we have been able to replace the desktop computer. What a huge relief that is! We are so grateful!!!
Our cell phones are 7 years old and various apps and websites can no longer be updated or accessed. Most critically I am no longer was able to access LinkedIn or any of my business and professional contacts. Argh! Thwarted again from a business standpoint.
Speaking of aging equipment (myself included LOL) our car is 28 years old.
1991 Volvo. We call her “Red Beauty” -- not that she’s beautiful to anyone but us, but we went for two years without a car.
Charles was driving an elderly friend to visit her husband in an adult family home when they were struck broadside by another car that ran a red light. That T-bone impact was so hard, it spun the car around and resulted in it being a total loss.
Charles sustained several herniated discs, as did our friend. Due to high mileage on our car, even though we had insurance, it was not worth hardly anything when paid off. We ended up on foot or on the bus for the next two years. That's why we are so very grateful that we have a car at all now and to us she is “Red Beauty.” We are so thankful to get from Point A to Point B (mostly doctors appointments or hospitals, as it seems recently), but it is always worrisome “what if…the car breaks down?" We have no backup resource.
The only alternative was to take Uber. Sadly, now that our phones are so outdated, we can no longer even update the Uber app. Consequently, if “Red Beauty” were to break down, we cannot even request Uber. We are just plain stranded. We are living living by faith -- hoping and praying -- minute-by-minute to just get by.
Most are not aware that I underwent cardiac catheter cryoablation last June at Virginia Mason Hospital in Seattle. That procedure involved freezing part of the inside of my heart to prevent the transmission of electrical impulses that had been causing atrial fibrillation for 10 years. It worked. It was successful until about a month ago when the a-fib returned with a vengeance. Cardiac Catheter Cryoablation
My heart awakened me from sleep at 2 a.m. ...
Ironically, I had just brought Charles home from the hospital after he had been discharged for treatment of pneumonia and pericarditis. Charles had literally only been home for 4 hours following a 9-day stay in ICU. We had gone to sleep at 10 p.m.
I awoke at 2 a.m. with my heart beating at 180 beats per minute. It would not slow down. I dreaded the thought of having to go to the ER I didn’t want to risk leaving Charles home by himself or of taking him with me back to the hospital.
Long story short: My heart continued to beat at 180 beats per minute for the next 2 weeks until I could get scheduled at Virginia Mason Hospital to undergo “cardioversion” where electric shock was used to stop and restart my heart to put it back into a normal rhythm at a reasonable rate.
The same day that I was scheduled for “cardioversion” at Virginia Mason, Charles was also scheduled there for ultrasound mapping of his right arm for creation of a new fistula (dialysis access) in expectation that at some point he would be going back on dialysis.
We were so fortunate that Charles’ friend Albert was available to drive the two of us up to Seattle and back that day. We just did not know how soon Charles would need to be starting dialysis. As it turned out, it was on an emergency basis, the following day in Tacoma at St. Joseph Hospital.
REVIEW of what Charles has gone through since last October...
Those lumps and bumps on his left arm and chest were a massive aneurysm that developed. The vascular surgeons who treated him said that in their 20+ years of practice they had never seen anything like that. It was more than 4-inches in diameter. It took 45 staples to close the incisions all the way up to the base of his neck. He underwent that risky surgery and transfusions to in October. He still needs another operation to deal with a hematoma that formed in the surgery site after that procedure.
In November, he began having episodes of amnesia. This was so bewildering -- terrifying to me, as I didn't know how to help him.
In February, he underwent a heart cath to be cleared by cardiology to undergo general anesthesia for robotic surgery to remove his left native kidney because they had found renal cell carcinoma (kidney cancer) in it. The cancer had been growing for more than a year.
In March, he had cancer surgery and the kidney was removed by the robotic-assisted technique. Thankfully, they got all of the cancer. Sad news though is that now with having had cancer, and with the complete failure of his kidney transplant, he will not be allowed to be put back on the Waiting List for another kidney transplant until he has been “cancer-free” for 3 years.
Grand mal seizures were the next development. Never had a seizure before in his life. He fell and suffered numerous injuries and ended up in ICU for trauma for 9 days at Tacoma General. It turns out that he is the 1 person out of 100 who will have seizures as a reaction to EPO, the medication he's being given to treat his severe anemia. The anemia is caused by the kidney failure, so he has to take the injections despite this complication.
We are so thankful that there was one alternative medication to the EPO and he has been started on it with no bad reactions, no more seizures and now his anemia is improving. What a blessing! It seemed so hopeless. It now seems miraculous. Hooray that he can drive again!
Next, his kidney transplant (from 22 years earlier) failed completely.
He was admitted through the ER for lifesaving surgery to place a port in his chest to begin emergency dialysis. (see the image showing the tubes protruding from his chest; they will be in place for six months for dialysis access) During the initial phase of this hospitalization he was treated with dialysis daily. Now he is on a Tuesday, Thursday and Saturday evening schedule as an outpatient.
The day after the surgery in his upper left chest to place the “tunnel catheter” (port) for dialysis, they discovered almost 2 liters of fluid had collected around his heart. Another emergency surgery followed STAT in the Heart Cath Lab. An incision was made through the left side of his chest and into the sac around his heart to drain the fluid and install a "window" drain and catheter to continuously drain fluid from his heart. The heart surgeon told me afterward that if that had not been done right then, that Charles would have died; his heart was drowning. I have never known a doctor to be quite so candid or blunt. It was a very close call. Again, so thankful that Charles survived.
Seventeen more days in ICU and daily dialysis while hospitalized. The amount of fluid overload from the kidney failure was significant. His weight was 211 when admitted and 180 when discharged. His blood pressure is still running in crazy high numbers though like 210/110, so worrisome for stroke and not yet controlled.
The port in his chest will remain in place as his "lifeline" for six months. Those tubes protruding from his chest are his 'lifeline'.
He needs yet another surgery to create a dialysis access site in his right arm. That is scheduled in late August, if his condition has completely stabilized by then.
Sometime after that in the months ahead he will tentatively undergo open heart surgery to replace his aortic valve.
He was discharged to home a little over a week ago with 10 new prescriptions. Now that he is in total kidney failure and back on dialysis, many of his meds have changed. He has 19 prescription meds altogether. It's all so complicated.
Countless prayers have been answered that he has even survived all of this so far.
Thank you in advance for your consideration -- even if you are not currently able to provide the financial assistance -- but we will be so grateful, if you can. Prayers are ALWAYS welcome!
Nearby, a tiny church has the perfect comforting message on its reader board. It spoke to my heart. "Even at your wit’s end, God is there."