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Dear Friends,
[Caveat: It has taken a week for me to write this. Meaning? I am still very slow. While I truly appreciate hearing from you, please don’t hold it against me if you do not get a rapid (or expansive) response.]
It has been a momentous time over the last six weeks.
From the despair of not knowing how I was going to get home from my visit to Stanford to undergoing a double lung transplant to working my way through recovery.
On June 20th I underwent a nine and a half hour surgery and received a new set of lungs to replace those destroyed by pulmonary hypertension.
I was sitting in my hospital room at about 6 pm when the nurse came in to say that the doctor was calling me with good news. For the life of me I could not imagine what good news the doctor could have for me. Shortly thereafter, a Doctor Forester called and said that they had found a donor who was an excellent match and did I want the lungs. I was stunned. I had thought I was too far down the list to be transplanted. I asked if they were really a match and he said “an excellent match.” I asked if I could have fifteen minutes and he said “Yes.”
I immediately called Kelly to tell her the news and ask her input. She was also stunned, but ecstatic, and said “Of course.” I was still just stunned. We spoke a few minutes more and I got off the phone. Kathi (Kelly's sister and my dear Sister-Out-Law who had come with me on this trip to Stanford) had come with me for the Stanford check up to get the lay of the land in case she came down to help me when I had a transplant. Little did we know how soon that would happen. So it was truly a gift when Kathi promised to stay with me. This was a huge comfort as I was scared of going through all of this alone. However, it was above and beyond the call of family for her to set her life aside for almost a month to stay with me and then to help Kelly get oriented and settled in. Meanwhile Kelly was doing a whirlwind preparation to move us to Stanford and leave the house in some decent condition for Cory and Conrad - all while being desperately worried about me and sick as all get out from an abscessed tooth.
I could not believe the energy in the hospital room. It was palpable … a vortex of energy that was undeniable and left me little time to be afraid of what was coming. The doctor called back and I said that I indeed wanted the lungs. That set in motion a whirlwind of activity between getting me scrubbed down for surgery to calling family and Kelly again and celebrating with Kathi in between. Kelly and Kathi were willing to learn my spirit song and promise to sing me back from the surgery. Before I knew it, or had too much time to think ahead, I was being wheeled out to surgery with Kathi at my side.
There were a few final health questions (of which I have no recall) from the surgeons and I was wheeled into the surgery.
There were several times I came to in extreme pain - two of which I swear were in the surgery. And several that I came to in the ICU and saw the clock, but even with the clock I did not know day from night or day from day. It was a disorienting time which I soon found was less than a day after the surgery. I later learned that it was common for folks to remain out 3 - 4 days. However, I had asked Kelly and Kathi to sing me back and they had done so. My concern had been that if I was out there too long I would not (or would not be able) to come back, and also that it was very possible that I might need to fight to stay alive. I believe that both were true.
That first week was … difficult. Starting with the intubation which left me unable to communicate and still leaves me with difficulty swallowing. I really needed to communicate. I tried everything I could think of to communicate including signing the manual alphabet and pantomiming paper, pencil, and writing. The nurses just kept telling me to “quit waving my hands around.” It was not until Kathi showed up and understood that I wanted to write that any progress was made. Of course, I was so shaky that nobody could read what I wrote. Finally the tube was removed, but it would be a couple of days before I could really say much.
I could not believe how little I could breathe. The respiratory therapists and others kept telling me to cough. I told them that you had to be able to get breath in your lungs in order to cough. The breathing did not improve. They tried a nasal pharyngeal vacuuming of my lungs. While unpleasant, it helped some. They placed me on a Bi-Pap machine. This is a piece of equipment that forces air into your lungs every time you breathe. My experience of it was that it was “pushing” me. The pattern of the Bi-Pap was just that - puff puff on each breath. When I got off the machine, my lungs had picked up that pattern - filling one at a time. It drove me crazy and sent my nascent claustrophobia off the scale. By the evening of day three, I was losing ground again. Late night 3 or early day 4 I went into respiratory crisis. Alarms were ringing and I was gasping like a fish out of water. My pain level was off the chart. At that point I thought I was going to die and the pain was bad enough that if that was the case I hoped it would be soon.
It was decided to vacuum my lungs out again. They asked me if I would do that. I had no air to answer and just nodded. I didn’t see any other possibilities. So up my nose and into my lungs and they vacuumed what little breath I had right out of me. I am sure it was just a few seconds, but it seemed an endless stretch of time. Then the hose was back out and I continued choking, but I could get small gasps of breath. They wanted to put me back on the Bi-Pap and I resisted. They said I really needed to do it - even if just for an hour. I negotiated down to 30 minutes. So the time started and I tried to not watch the clock. However, you had better believe that at 30:01 I was waving and pounding to get the damn thing off of me. Two more times they got me onto the Bi-Pap (never for more than thirty minutes) before I refused to let it anywhere near me. My claustrophobia had set up residence.
That was the crisis point for me, and successfully moving past it meant a relatively steady progress in my breathing. I was still struggling, but little by little I was getting enough breath to start coughing the “packing material” out of my lungs. There is some solution they put the lungs in (or in the lungs) and I am still coughing up remnants of it. Either that, or my donor lived some place with sky high pollution because I have coughed up two lungs of an icky grey/green/brown crud that you definitely do not want in your lungs.
Ultimately I was moved to the floor (I believe it was day 7) and there continued my respiratory therapy and breathing exercises and slowly increased breathing capacity. What became increasingly clear was that my heart was not settling down. It was galloping along at a resting rate of about 135 and going up from there. The doctors said that it was due to the surgery and also that my heart needed to “remodel” after pumping against the high pressure in my lungs due to the pulmonary hypertension. They started me on a low dose of metoprolol and have increased it up to 50 mg twice a day. It is helping, though my heart rate is still too high and I get easily winded.
I have had various problems with the medications from unstoppable diarrhea and nausea, to neurological problems and a drop foot. So I have gone through several medication changes to address the digestive issues. The neurological issues they hope will resolve with time and therapy.
I am exercising daily and getting stronger day by day. However, I am having a hell of a time gaining back the 27 pounds I lost during the process. It is down right frightening how much weight and muscle I have lost. By the time I got out of the ICU, I had lost about 20 pounds. The other I lost because I wasn’t able to get enough food in me to do any good even maintaining my weight.
I take a ton of pills a day and they still upset my stomach and they still “fill me up.” They also make virtually everything taste like various flavours of cardboard. So eating enough is still an issue. I am told that my taste buds will recover with time.
Kelly and I are currently living in a “studio” apartment, though that is a generous interpretation. It measures under 280 square feet - including bath and kitchen. We are sitting in each other's laps and the place is very difficult to live in. We are supposed to be moving August 8th to a 1 bedroom. YAY!!! That should make life more comfortable, and give each of us a little privacy.
Meanwhile, “recovery” is both time and energy demanding and keeps both of us occupied. Dealing with the Kaiser pharmacy has become the bane of Kelly's normally calm and loving nature (along with trying to keep everything in its place in this closet that is our current “home”). Thankfully, Kelly and Kathi discovered the Goodwill. Kelly has had great luck getting things we need cheaply and also in getting some well deserved “hunting and gathering” therapy.
Kelly has succeeded in making this closet into a slice of home. Her efforts have made me feel connected to our home where we hope to return in October. I can’t believe how wise she was in her selection of what to bring from home to meet the needs of soul and psyche. She also does an amazing job keeping this place livable and feeding me despite my lacklustre response to almost any food. It makes me feel guilty how little help I am. I have started doing dishes and cooking a bit. Unfortunately, I can’t even get the food out of the refrigerator (it is a dinky thing with low shelves and I cannot bend over or lift anything over 4 pounds).
I want to give a huge thank you to Kathi who stayed with me through the surgery and helped Kelly get oriented to the area. She has drawn numerous pictures which have captured her experience of this process, as well as to help us all deal with the challenges of this mighty transition.
I also want to thank Cory and Conrad who have uprooted their lives and moved into our house (deep cleaning and clearing all in their path) and are caring for the dogs. This is a huge gift and we (and the dogs) would be in tremendous upheaval without them. Thanks to Gail who has generously stepped in to stay with the dogs when Cory and Conrad cannot. As most of you know, our four legged family members are truly members of the family. I was terrified of what would happen to them in the event of a transplant. How and who would take care of them over such a long period of time? Who would love them and provide safety and security? Cory and Conrad offered to move into our house, and Gail and Kathi offered their support as well. I could not be blessed with better family and friends, and I know few who would make such sacrifices - even for family.
Thank you brothers Ed and Robert (wink) who provide so much support to both Kelly and myself. The nurses at Stanford were tremendously impressed with my brothers. That made me smile and I told them I was truly blessed. Thanks also to my PCC family who have contributed so generously to my NTAF campaign, and to Powell Boulevard Veterinary Clinic who has been raising funds and had a car wash to help me out.
Thanks to all of you who with your love, healing thoughts, and generosity, have contributed to the healing energy which is so critical to this process of returning to health. Thank you for being a support upon which I draw on a daily basis.
Six weeks ago I was wondering if I would survive the summer. Things were looking pretty grim. I was in such bad shape that I couldn’t figure out how I would get home from Stanford as I couldn’t breathe at the altitude to either drive or fly. I figured the trip home would finish off what the trip down had started - high altitude heart failure. If I made it home it likely would have been on my last breaths. Then the miracle of new lungs based on the generous gift from some poor soul I will never know. New lungs that now offer me beginnings rather than endings. New horizons instead of sunset. Now I will have two birthdays to celebrate. The one that my mother gave me and the one some generous stranger has gifted me with.
The healing is mine to accomplish. Paying the price of the medication issues and recovery from the insult to the body of surgery is mine. Dealing with a life of anti-rejection medications is the price of living with this gift. But I believe that this gift came to me for a reason. There are apparently things I am yet meant to do. So I will follow that small voice inside that directs one's heart on the right path and bless the spirits which have made it possible for me to walk it.
My love and gratitude to you all,
rowan
[Caveat: It has taken a week for me to write this. Meaning? I am still very slow. While I truly appreciate hearing from you, please don’t hold it against me if you do not get a rapid (or expansive) response.]
It has been a momentous time over the last six weeks.
From the despair of not knowing how I was going to get home from my visit to Stanford to undergoing a double lung transplant to working my way through recovery.
On June 20th I underwent a nine and a half hour surgery and received a new set of lungs to replace those destroyed by pulmonary hypertension.
I was sitting in my hospital room at about 6 pm when the nurse came in to say that the doctor was calling me with good news. For the life of me I could not imagine what good news the doctor could have for me. Shortly thereafter, a Doctor Forester called and said that they had found a donor who was an excellent match and did I want the lungs. I was stunned. I had thought I was too far down the list to be transplanted. I asked if they were really a match and he said “an excellent match.” I asked if I could have fifteen minutes and he said “Yes.”
I immediately called Kelly to tell her the news and ask her input. She was also stunned, but ecstatic, and said “Of course.” I was still just stunned. We spoke a few minutes more and I got off the phone. Kathi (Kelly's sister and my dear Sister-Out-Law who had come with me on this trip to Stanford) had come with me for the Stanford check up to get the lay of the land in case she came down to help me when I had a transplant. Little did we know how soon that would happen. So it was truly a gift when Kathi promised to stay with me. This was a huge comfort as I was scared of going through all of this alone. However, it was above and beyond the call of family for her to set her life aside for almost a month to stay with me and then to help Kelly get oriented and settled in. Meanwhile Kelly was doing a whirlwind preparation to move us to Stanford and leave the house in some decent condition for Cory and Conrad - all while being desperately worried about me and sick as all get out from an abscessed tooth.
I could not believe the energy in the hospital room. It was palpable … a vortex of energy that was undeniable and left me little time to be afraid of what was coming. The doctor called back and I said that I indeed wanted the lungs. That set in motion a whirlwind of activity between getting me scrubbed down for surgery to calling family and Kelly again and celebrating with Kathi in between. Kelly and Kathi were willing to learn my spirit song and promise to sing me back from the surgery. Before I knew it, or had too much time to think ahead, I was being wheeled out to surgery with Kathi at my side.
There were a few final health questions (of which I have no recall) from the surgeons and I was wheeled into the surgery.
There were several times I came to in extreme pain - two of which I swear were in the surgery. And several that I came to in the ICU and saw the clock, but even with the clock I did not know day from night or day from day. It was a disorienting time which I soon found was less than a day after the surgery. I later learned that it was common for folks to remain out 3 - 4 days. However, I had asked Kelly and Kathi to sing me back and they had done so. My concern had been that if I was out there too long I would not (or would not be able) to come back, and also that it was very possible that I might need to fight to stay alive. I believe that both were true.
That first week was … difficult. Starting with the intubation which left me unable to communicate and still leaves me with difficulty swallowing. I really needed to communicate. I tried everything I could think of to communicate including signing the manual alphabet and pantomiming paper, pencil, and writing. The nurses just kept telling me to “quit waving my hands around.” It was not until Kathi showed up and understood that I wanted to write that any progress was made. Of course, I was so shaky that nobody could read what I wrote. Finally the tube was removed, but it would be a couple of days before I could really say much.
I could not believe how little I could breathe. The respiratory therapists and others kept telling me to cough. I told them that you had to be able to get breath in your lungs in order to cough. The breathing did not improve. They tried a nasal pharyngeal vacuuming of my lungs. While unpleasant, it helped some. They placed me on a Bi-Pap machine. This is a piece of equipment that forces air into your lungs every time you breathe. My experience of it was that it was “pushing” me. The pattern of the Bi-Pap was just that - puff puff on each breath. When I got off the machine, my lungs had picked up that pattern - filling one at a time. It drove me crazy and sent my nascent claustrophobia off the scale. By the evening of day three, I was losing ground again. Late night 3 or early day 4 I went into respiratory crisis. Alarms were ringing and I was gasping like a fish out of water. My pain level was off the chart. At that point I thought I was going to die and the pain was bad enough that if that was the case I hoped it would be soon.
It was decided to vacuum my lungs out again. They asked me if I would do that. I had no air to answer and just nodded. I didn’t see any other possibilities. So up my nose and into my lungs and they vacuumed what little breath I had right out of me. I am sure it was just a few seconds, but it seemed an endless stretch of time. Then the hose was back out and I continued choking, but I could get small gasps of breath. They wanted to put me back on the Bi-Pap and I resisted. They said I really needed to do it - even if just for an hour. I negotiated down to 30 minutes. So the time started and I tried to not watch the clock. However, you had better believe that at 30:01 I was waving and pounding to get the damn thing off of me. Two more times they got me onto the Bi-Pap (never for more than thirty minutes) before I refused to let it anywhere near me. My claustrophobia had set up residence.
That was the crisis point for me, and successfully moving past it meant a relatively steady progress in my breathing. I was still struggling, but little by little I was getting enough breath to start coughing the “packing material” out of my lungs. There is some solution they put the lungs in (or in the lungs) and I am still coughing up remnants of it. Either that, or my donor lived some place with sky high pollution because I have coughed up two lungs of an icky grey/green/brown crud that you definitely do not want in your lungs.
Ultimately I was moved to the floor (I believe it was day 7) and there continued my respiratory therapy and breathing exercises and slowly increased breathing capacity. What became increasingly clear was that my heart was not settling down. It was galloping along at a resting rate of about 135 and going up from there. The doctors said that it was due to the surgery and also that my heart needed to “remodel” after pumping against the high pressure in my lungs due to the pulmonary hypertension. They started me on a low dose of metoprolol and have increased it up to 50 mg twice a day. It is helping, though my heart rate is still too high and I get easily winded.
I have had various problems with the medications from unstoppable diarrhea and nausea, to neurological problems and a drop foot. So I have gone through several medication changes to address the digestive issues. The neurological issues they hope will resolve with time and therapy.
I am exercising daily and getting stronger day by day. However, I am having a hell of a time gaining back the 27 pounds I lost during the process. It is down right frightening how much weight and muscle I have lost. By the time I got out of the ICU, I had lost about 20 pounds. The other I lost because I wasn’t able to get enough food in me to do any good even maintaining my weight.
I take a ton of pills a day and they still upset my stomach and they still “fill me up.” They also make virtually everything taste like various flavours of cardboard. So eating enough is still an issue. I am told that my taste buds will recover with time.
Kelly and I are currently living in a “studio” apartment, though that is a generous interpretation. It measures under 280 square feet - including bath and kitchen. We are sitting in each other's laps and the place is very difficult to live in. We are supposed to be moving August 8th to a 1 bedroom. YAY!!! That should make life more comfortable, and give each of us a little privacy.
Meanwhile, “recovery” is both time and energy demanding and keeps both of us occupied. Dealing with the Kaiser pharmacy has become the bane of Kelly's normally calm and loving nature (along with trying to keep everything in its place in this closet that is our current “home”). Thankfully, Kelly and Kathi discovered the Goodwill. Kelly has had great luck getting things we need cheaply and also in getting some well deserved “hunting and gathering” therapy.
Kelly has succeeded in making this closet into a slice of home. Her efforts have made me feel connected to our home where we hope to return in October. I can’t believe how wise she was in her selection of what to bring from home to meet the needs of soul and psyche. She also does an amazing job keeping this place livable and feeding me despite my lacklustre response to almost any food. It makes me feel guilty how little help I am. I have started doing dishes and cooking a bit. Unfortunately, I can’t even get the food out of the refrigerator (it is a dinky thing with low shelves and I cannot bend over or lift anything over 4 pounds).
I want to give a huge thank you to Kathi who stayed with me through the surgery and helped Kelly get oriented to the area. She has drawn numerous pictures which have captured her experience of this process, as well as to help us all deal with the challenges of this mighty transition.
I also want to thank Cory and Conrad who have uprooted their lives and moved into our house (deep cleaning and clearing all in their path) and are caring for the dogs. This is a huge gift and we (and the dogs) would be in tremendous upheaval without them. Thanks to Gail who has generously stepped in to stay with the dogs when Cory and Conrad cannot. As most of you know, our four legged family members are truly members of the family. I was terrified of what would happen to them in the event of a transplant. How and who would take care of them over such a long period of time? Who would love them and provide safety and security? Cory and Conrad offered to move into our house, and Gail and Kathi offered their support as well. I could not be blessed with better family and friends, and I know few who would make such sacrifices - even for family.
Thank you brothers Ed and Robert (wink) who provide so much support to both Kelly and myself. The nurses at Stanford were tremendously impressed with my brothers. That made me smile and I told them I was truly blessed. Thanks also to my PCC family who have contributed so generously to my NTAF campaign, and to Powell Boulevard Veterinary Clinic who has been raising funds and had a car wash to help me out.
Thanks to all of you who with your love, healing thoughts, and generosity, have contributed to the healing energy which is so critical to this process of returning to health. Thank you for being a support upon which I draw on a daily basis.
Six weeks ago I was wondering if I would survive the summer. Things were looking pretty grim. I was in such bad shape that I couldn’t figure out how I would get home from Stanford as I couldn’t breathe at the altitude to either drive or fly. I figured the trip home would finish off what the trip down had started - high altitude heart failure. If I made it home it likely would have been on my last breaths. Then the miracle of new lungs based on the generous gift from some poor soul I will never know. New lungs that now offer me beginnings rather than endings. New horizons instead of sunset. Now I will have two birthdays to celebrate. The one that my mother gave me and the one some generous stranger has gifted me with.
The healing is mine to accomplish. Paying the price of the medication issues and recovery from the insult to the body of surgery is mine. Dealing with a life of anti-rejection medications is the price of living with this gift. But I believe that this gift came to me for a reason. There are apparently things I am yet meant to do. So I will follow that small voice inside that directs one's heart on the right path and bless the spirits which have made it possible for me to walk it.
My love and gratitude to you all,
rowan
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