Kim and Jim Knudson
1244-12 Westerly Parkway
State College, PA 16801
Wednesday, February 25, 2015
Tuesday, February 24, 2015
Support from my friends at NSGIC
The National States Geographic Information Council mid-year meeting is being held in Annapolis this week and my friends were kind enough to send me a short video of support.
Catching Up
A lot has been going on in our lives!
Kim accepted a new job at Penn State's Applied Research Lab in State College and started at the beginning of February. We're staying with Kim's mom where we have our own bedroom in the basement. I have been working mostly remotely for the past month, which makes it easier to get my 40 hours in. I'm very happy that Baker has enabled me to do this in order to wrap up my projects prior to starting my disability retirement.
I've had numerous doctor's appointments in Mechanicsburg and Hershey this past month so I have been commuting a fair amount and staying overnight, loading up the car with boxes every time I drive back to State College. Kim, mother-in-law Jean and my family have expressed concern about being here on my own but I have been very careful.
We have a large pile of "stuff" in the basement that we will ask the Salvation Army to come pick up some day soon. I am also giving away most of my large library of books so we don't have to move them and figure out where we are going to put them. I got rid of books from 3 full 5 shelf bookshelves and am keeping 2 5-shelf bookcases.
We listed our house in late January with one of my former GIS colleagues and it sold this past Sunday for close to our asking price. Closing is scheduled for 4/10.
We started working with a realtor in State College who is another former colleague from my first and second jobs. Unfortunately, the housing options in our price range in State College are quite limited and there are not many building lots either, so we may be looking for a while.
My surgery for a diaphragm pacemaker to help my breathing and a feeding tube to help me maintain my weight is next Tuesday morning 3/3 at 7:30AM, the first surgery of the day for Dr. Pauli. We'll have to be there around 6AM, so we will spend the night at the house in Mechanicsburg.
Two weeks ago I had to go back to the pulmonary lab at Hershey to get an updated lung test. My scores at my December clinic were too good to qualify for the pacer for my insurance company. My new breathing scores showed a fairly significant decline - 52% of normal when tested sitting upright whereas my December score was 84%.
Lying down my score was 22%. I struggle the most to breathe at night in bed. There are only 4 positions that work some of the time to be able to breathe well enough to sleep. I have to breathe through my nose in order to sleep. For a long time there were only 2 positions that worked for me - lying on each side with my head at a certain angle so I can breathe through my nose. That has been how I have slept for the last 10 years. However, prior to getting sick I slept better on my right side. Now I sleep better on my left side. The other two positions are sitting upright in bed, which isn't very easy to sleep, and most recently, on my back at a fairly low angle, but usually only in the morning for a few hours after I have been trying to sleep sitting up. These sleeping positions work because they are the most comfortable for my weakened diaphragm and my sinus condition.
I met with Dr. Simmons at the ALS Clinic last week to discuss my disease progression and talk about the pacer vs. a bipap device to help me breathe better. Since my mouth muscles are so weak, I have trouble getting a good seal on the breathing device and I leak, which affects my scores. In the end we decided to move forward with the pacer surgery as planned.
Last week I met with Dr. Pauli to discuss the operation and also met with the anesthesiology team. The surgery normally takes about 2 hours. There are a few risks to the surgery and PALS are often at a higher risk when anesthetized. I am a little worried - the only previous surgery I have had was rhinoplasty in 2004 and I didn't stay overnight. On Wednesday morning we will meet with a representative of the company that manufactures the Neurx Diaphragm Pacer device and they will teach us how to use it. If everything goes okay, we'll be back in State College Wednesday afternoon to start my recovery. The ALS clinic has already ordered a case of formula for my feeding tube that we will take home with us.
My next clinic appointment is 3/11 and we'll see Dr. Raheja instead of Dr. Simmons since she specializes in the pacer and bipap devices.
My brothers and my mom are coming for a short visit at Jean's house this weekend, leaving Monday when we have to leave for Mechanicsburg. It will be wonderful to see them. I am very appreciative that Jean is accommodating all of us. Kim and I last saw Chuck and Margaret at Thanksgiving in Charlotte, and I saw Forest for our Colorado trip and mom and Kim saw him in August for our NC family reunion. Jean hasn't seen them for many years.
Next up after surgery - MOVING! Fortunately part of Kim's job offer was a relocation package, so we will hire a moving company to pack and move our belongings, which will be a huge benefit. We just have to figure out when we can do it and will probably have stuff in storage for a few months until we figure out where we are going to live in Happy Valley!
Kim accepted a new job at Penn State's Applied Research Lab in State College and started at the beginning of February. We're staying with Kim's mom where we have our own bedroom in the basement. I have been working mostly remotely for the past month, which makes it easier to get my 40 hours in. I'm very happy that Baker has enabled me to do this in order to wrap up my projects prior to starting my disability retirement.
I've had numerous doctor's appointments in Mechanicsburg and Hershey this past month so I have been commuting a fair amount and staying overnight, loading up the car with boxes every time I drive back to State College. Kim, mother-in-law Jean and my family have expressed concern about being here on my own but I have been very careful.
We have a large pile of "stuff" in the basement that we will ask the Salvation Army to come pick up some day soon. I am also giving away most of my large library of books so we don't have to move them and figure out where we are going to put them. I got rid of books from 3 full 5 shelf bookshelves and am keeping 2 5-shelf bookcases.
We listed our house in late January with one of my former GIS colleagues and it sold this past Sunday for close to our asking price. Closing is scheduled for 4/10.
We started working with a realtor in State College who is another former colleague from my first and second jobs. Unfortunately, the housing options in our price range in State College are quite limited and there are not many building lots either, so we may be looking for a while.
My surgery for a diaphragm pacemaker to help my breathing and a feeding tube to help me maintain my weight is next Tuesday morning 3/3 at 7:30AM, the first surgery of the day for Dr. Pauli. We'll have to be there around 6AM, so we will spend the night at the house in Mechanicsburg.
Two weeks ago I had to go back to the pulmonary lab at Hershey to get an updated lung test. My scores at my December clinic were too good to qualify for the pacer for my insurance company. My new breathing scores showed a fairly significant decline - 52% of normal when tested sitting upright whereas my December score was 84%.
Lying down my score was 22%. I struggle the most to breathe at night in bed. There are only 4 positions that work some of the time to be able to breathe well enough to sleep. I have to breathe through my nose in order to sleep. For a long time there were only 2 positions that worked for me - lying on each side with my head at a certain angle so I can breathe through my nose. That has been how I have slept for the last 10 years. However, prior to getting sick I slept better on my right side. Now I sleep better on my left side. The other two positions are sitting upright in bed, which isn't very easy to sleep, and most recently, on my back at a fairly low angle, but usually only in the morning for a few hours after I have been trying to sleep sitting up. These sleeping positions work because they are the most comfortable for my weakened diaphragm and my sinus condition.
I met with Dr. Simmons at the ALS Clinic last week to discuss my disease progression and talk about the pacer vs. a bipap device to help me breathe better. Since my mouth muscles are so weak, I have trouble getting a good seal on the breathing device and I leak, which affects my scores. In the end we decided to move forward with the pacer surgery as planned.
Last week I met with Dr. Pauli to discuss the operation and also met with the anesthesiology team. The surgery normally takes about 2 hours. There are a few risks to the surgery and PALS are often at a higher risk when anesthetized. I am a little worried - the only previous surgery I have had was rhinoplasty in 2004 and I didn't stay overnight. On Wednesday morning we will meet with a representative of the company that manufactures the Neurx Diaphragm Pacer device and they will teach us how to use it. If everything goes okay, we'll be back in State College Wednesday afternoon to start my recovery. The ALS clinic has already ordered a case of formula for my feeding tube that we will take home with us.
My next clinic appointment is 3/11 and we'll see Dr. Raheja instead of Dr. Simmons since she specializes in the pacer and bipap devices.
My brothers and my mom are coming for a short visit at Jean's house this weekend, leaving Monday when we have to leave for Mechanicsburg. It will be wonderful to see them. I am very appreciative that Jean is accommodating all of us. Kim and I last saw Chuck and Margaret at Thanksgiving in Charlotte, and I saw Forest for our Colorado trip and mom and Kim saw him in August for our NC family reunion. Jean hasn't seen them for many years.
Next up after surgery - MOVING! Fortunately part of Kim's job offer was a relocation package, so we will hire a moving company to pack and move our belongings, which will be a huge benefit. We just have to figure out when we can do it and will probably have stuff in storage for a few months until we figure out where we are going to live in Happy Valley!
Tuesday, February 10, 2015
Surgery scheduled
In December when I was at my third ALS Clinic at Hershey, the doctor, nurse, and dietician all suggested that I have a feeding tube installed. The doctor also suggested that I have a NeuRx Diaphragm Pacer installed at the same time.
I wasn't having any noticeable breathing problems then but I am now. Also, I have been struggling to maintain my weight, which is becoming a losing battle. I am down about 10 pounds.
As a result, I decided to go ahead and have the surgery and am finishing up the presurgical testing tomorrow. The doctor will do both surgeries arthroscopically and both devices will stick out of my body. Surgery is scheduled for March 3 at Hershey Med Center. They keep you overnight to make sure there aren't any complications and to teach you how to use the pacer.
In the case of the diaphragm pacer, just a short cable and the lead that connects to the external power and control pack will extend. They provide a 4 inch adhesive bandage that attaches to your side that the lead snaps into. The lead has gold electrodes, so can go in salt water with it.
They start you with 15 minutes several times a day to stimulate and strengthen your diaphragm muscles, building up over time. The doctor told me it has been used by spinal injury patients for several years who would not be able to breathe without it, and Christopher Reeve was the second person who had the surgery. Dr. Pauli trained with the doctor who did Reeve's surgery, and he now trains other doctors to perform the procedure. For ALS patients they say it can add a year of life, on average.
The PEG feeding tube will allow me to ingest nutritional formulas, water and other cold/room temperature liquids, and powdered or liquid supplements directly through the tube into my stomach. Obviously you don't want to dump hot liquids directly into your stomach. I will still be able to eat when I want, but the tube will enable me to make progress on my nutrition and hydration challenges without worrying about aspirating food or liquids into my lungs. At some point if I am no longer to eat or swallow, the tube will enable me to stay alive.
There are some risks. They pump air into your abdomen for the arthroscopic surgery and some air remains in your chest. Sometimes can collapse a lung and they have to reinflate it. Worst case scenario is that the surgery compromises your system and have to have a tracheostomy and be on a ventilator, but that rarely happens.
Typically off work about 2 weeks. There is some pain afterwards and they give you narcotic pain meds. Have to be off them before you can drive a vehicle. I'm not sure I will return to the office after that but may work remotely for a while longer.
I'm planning to take a few days off just prior to my surgery to visit with my brothers, who are planning to fly in to Pittsburgh and drive to State College. My next clinic is scheduled for 3/11.
I wasn't having any noticeable breathing problems then but I am now. Also, I have been struggling to maintain my weight, which is becoming a losing battle. I am down about 10 pounds.
As a result, I decided to go ahead and have the surgery and am finishing up the presurgical testing tomorrow. The doctor will do both surgeries arthroscopically and both devices will stick out of my body. Surgery is scheduled for March 3 at Hershey Med Center. They keep you overnight to make sure there aren't any complications and to teach you how to use the pacer.
In the case of the diaphragm pacer, just a short cable and the lead that connects to the external power and control pack will extend. They provide a 4 inch adhesive bandage that attaches to your side that the lead snaps into. The lead has gold electrodes, so can go in salt water with it.
They start you with 15 minutes several times a day to stimulate and strengthen your diaphragm muscles, building up over time. The doctor told me it has been used by spinal injury patients for several years who would not be able to breathe without it, and Christopher Reeve was the second person who had the surgery. Dr. Pauli trained with the doctor who did Reeve's surgery, and he now trains other doctors to perform the procedure. For ALS patients they say it can add a year of life, on average.
The PEG feeding tube will allow me to ingest nutritional formulas, water and other cold/room temperature liquids, and powdered or liquid supplements directly through the tube into my stomach. Obviously you don't want to dump hot liquids directly into your stomach. I will still be able to eat when I want, but the tube will enable me to make progress on my nutrition and hydration challenges without worrying about aspirating food or liquids into my lungs. At some point if I am no longer to eat or swallow, the tube will enable me to stay alive.
There are some risks. They pump air into your abdomen for the arthroscopic surgery and some air remains in your chest. Sometimes can collapse a lung and they have to reinflate it. Worst case scenario is that the surgery compromises your system and have to have a tracheostomy and be on a ventilator, but that rarely happens.
Typically off work about 2 weeks. There is some pain afterwards and they give you narcotic pain meds. Have to be off them before you can drive a vehicle. I'm not sure I will return to the office after that but may work remotely for a while longer.
I'm planning to take a few days off just prior to my surgery to visit with my brothers, who are planning to fly in to Pittsburgh and drive to State College. My next clinic is scheduled for 3/11.
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