3 Weeks Later... That was a long nap.
Now, 3 weeks later, I have several updates…
Most important to note is that I do not have Pulmonary Arterial Hypertension (PAH). Yesterday, I underwent a procedure called a Right-Heart Catheterizing. It means that they put me on an x-ray table and insert a probe into the main vein in my right groin area… that probe is moved up through the vein into the heart and then into the main pulmonary artery. The probe is then able to measure, (quite accurately, I’m told), the blood pressure between my heart and lungs. Although preliminary indications were that this pressure was much too high, this test showed that it is well within normal limits.
With Scleroderma, there are several ways for the disease to manifest and create more complex symptoms. PAH is one of the more severe symptoms. Although it is treatable, with several new drug therapies, PAH, (along with renal failure), is perhaps the primary cause of death among Scleroderma patients.
Yup, we were very concerned.
{GEEK UPDATE: Even though I was mildly sedated – because I was scared and I asked them for some drugs! – I was able to see what was happening throughout the process. On a large screen (unknown if it is plasma or LCD) I watched as the probe moved into my heart. I couldn't see my heart but I saw my ribs in the x-ray. It’s amazing. HOW DO THEY KNOW WHAT THEY’RE LOOKING AT? I also saw the graph results of the pressure tests. I couldn't read the values but I heard everyone in the room, and they seemed pleased.
Now that we have these results, we are able to assess our current status. I’ll try to bring you all up date…
1) Still have Scleroderma.
2) Still using oxygen 24 x 7 – although I am steady at 4-5 liters/minute.
3) Coughing is greatly subsided.
When I got home Robbi had the house set up with a hospital bed, Oxygen machines, portable oxygen, visiting nurses, and home health aides, and our friends were mobilized to provide support in any way that we needed. After the first night both of were worried that we might not be prepared for all the worst that we could imagine. We had to figure out so many logistics such as how to change from one O2 set up to another… was I going to be able to get up in the middle of the nite and pee, or should I use the urinal, or the commode? These don’t sound like complex issues but when you can’t breathe well everything feels scary.
On the second nite home, I woke up coughing and then realized that one of the O2 lines had come loose. Later that day, Robbi had a talk with Gordon, our friend and my primary care physician. He helped her realize that she is better prepared than she was feeling. She knows what to do in the worst case scenarios – CALL 911! He assured us that everything else will work out as we get used it.
As we began to settle in and were coming to grips with the intensity of my condition, Gordon came over to have a real heart-to-heart - as my doctor.
This is when it gets tough, and we knew it… No matter how often you say to yourself, or even aloud, it never ceases to amaze me that I have an incurable condition. I don’t think I’m in any type of denial. Perhaps it’s just that we have difficulty relating to the finality of life. Perhaps it is the minds way of keeping us focused on living… maybe it’s denial…
Gordon’s visit was beautifully intense.
First on the agenda was a review of my medical status. At the time, everything was much the same as today, except that the PAH has now been removed from the slate, (at least, for now).
Secondly, we walked through the short term and long term probabilities. No one claims to know how my condition WILL progress. These conversations can only take place within the scope of possible / maybe / could be / and sometimes. Within this context we talked…
After Gordon was quite sure that Robbi and I understood the full scope and seriousness of my condition, he asked us what we knew of Hospice. Like most people, our experience and knowledge of Hospice is related to a dying person. My personal experience was with my mother who was placed in a Hospice 1 day before she died… and my father who spent 2 weeks in a Hospice facility before he died.
What Gordon described to us was nothing like either of those situations. To get the real low-down he recommended that we take a meeting with the UMASS Hospice Group – and we did.
Flo (the director) and Julia (the medical officer) came to discuss and introduce the process. Hospice is not about dying. It’s about comfort. It’s about being prepared to respond to life altering situations with care and knowledge. It’s a caring network of professionals who work with the patient and all of their family. Everyone is an equal part of the process.
As we move through this entire process I will give my best effort to describe and comment on the events.
For now, I will rest, as I often do…
If I have left out things that you are interested in, or that I've left unexplained, please comment to this posting or email me at DSRUBY@VERIZON.NET. I am in the process of closing down the Desktop David website. Soon I will disable the email boxes associated with it.
Most important to note is that I do not have Pulmonary Arterial Hypertension (PAH). Yesterday, I underwent a procedure called a Right-Heart Catheterizing. It means that they put me on an x-ray table and insert a probe into the main vein in my right groin area… that probe is moved up through the vein into the heart and then into the main pulmonary artery. The probe is then able to measure, (quite accurately, I’m told), the blood pressure between my heart and lungs. Although preliminary indications were that this pressure was much too high, this test showed that it is well within normal limits.
With Scleroderma, there are several ways for the disease to manifest and create more complex symptoms. PAH is one of the more severe symptoms. Although it is treatable, with several new drug therapies, PAH, (along with renal failure), is perhaps the primary cause of death among Scleroderma patients.
Yup, we were very concerned.
{GEEK UPDATE: Even though I was mildly sedated – because I was scared and I asked them for some drugs! – I was able to see what was happening throughout the process. On a large screen (unknown if it is plasma or LCD) I watched as the probe moved into my heart. I couldn't see my heart but I saw my ribs in the x-ray. It’s amazing. HOW DO THEY KNOW WHAT THEY’RE LOOKING AT? I also saw the graph results of the pressure tests. I couldn't read the values but I heard everyone in the room, and they seemed pleased.
Now that we have these results, we are able to assess our current status. I’ll try to bring you all up date…
1) Still have Scleroderma.
2) Still using oxygen 24 x 7 – although I am steady at 4-5 liters/minute.
3) Coughing is greatly subsided.
When I got home Robbi had the house set up with a hospital bed, Oxygen machines, portable oxygen, visiting nurses, and home health aides, and our friends were mobilized to provide support in any way that we needed. After the first night both of were worried that we might not be prepared for all the worst that we could imagine. We had to figure out so many logistics such as how to change from one O2 set up to another… was I going to be able to get up in the middle of the nite and pee, or should I use the urinal, or the commode? These don’t sound like complex issues but when you can’t breathe well everything feels scary.
On the second nite home, I woke up coughing and then realized that one of the O2 lines had come loose. Later that day, Robbi had a talk with Gordon, our friend and my primary care physician. He helped her realize that she is better prepared than she was feeling. She knows what to do in the worst case scenarios – CALL 911! He assured us that everything else will work out as we get used it.
As we began to settle in and were coming to grips with the intensity of my condition, Gordon came over to have a real heart-to-heart - as my doctor.
This is when it gets tough, and we knew it… No matter how often you say to yourself, or even aloud, it never ceases to amaze me that I have an incurable condition. I don’t think I’m in any type of denial. Perhaps it’s just that we have difficulty relating to the finality of life. Perhaps it is the minds way of keeping us focused on living… maybe it’s denial…
Gordon’s visit was beautifully intense.
First on the agenda was a review of my medical status. At the time, everything was much the same as today, except that the PAH has now been removed from the slate, (at least, for now).
Secondly, we walked through the short term and long term probabilities. No one claims to know how my condition WILL progress. These conversations can only take place within the scope of possible / maybe / could be / and sometimes. Within this context we talked…
After Gordon was quite sure that Robbi and I understood the full scope and seriousness of my condition, he asked us what we knew of Hospice. Like most people, our experience and knowledge of Hospice is related to a dying person. My personal experience was with my mother who was placed in a Hospice 1 day before she died… and my father who spent 2 weeks in a Hospice facility before he died.
What Gordon described to us was nothing like either of those situations. To get the real low-down he recommended that we take a meeting with the UMASS Hospice Group – and we did.
Flo (the director) and Julia (the medical officer) came to discuss and introduce the process. Hospice is not about dying. It’s about comfort. It’s about being prepared to respond to life altering situations with care and knowledge. It’s a caring network of professionals who work with the patient and all of their family. Everyone is an equal part of the process.
As we move through this entire process I will give my best effort to describe and comment on the events.
For now, I will rest, as I often do…
If I have left out things that you are interested in, or that I've left unexplained, please comment to this posting or email me at DSRUBY@VERIZON.NET. I am in the process of closing down the Desktop David website. Soon I will disable the email boxes associated with it.
posted by DesktopDavid at 4:47 PM
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