Went for my monthly routine nephrologist appointment, which went fine as usual. The difference was a comment made while looking over my records. The comment was that due to my body mass PD is not a sustainable method of dialysis once my native kidney function decreases. Best guess is 6 months to 1 year for this occur.
So this means I either obtain a transplant, or face hemo dialysis. I recall having this conversation prior to PD placement, but now it seems even more urgent.
Friday, December 19, 2008
Thursday, December 11, 2008
Death...
My mother died last week. She died waiting for a liver transplant. Without getting into much detail, I strongly feel she's in a better place. My mother suffered greatly, especially in later years from various sickness including cancer. Although, I miss her deeply and wish I had more time with her...I know she's free of pain and hopefully looking down on me in happiness. We had our struggles, but I hope she knew I loved her deeply despite our past issues.
Jane K. Lewis
9/24/50- 11/30/08
Mom, we miss you greatly. No words can express the empty void of a lost mother...it pains me think you are gone.
Love,
Your only son...
Jane K. Lewis
9/24/50- 11/30/08
Mom, we miss you greatly. No words can express the empty void of a lost mother...it pains me think you are gone.
Love,
Your only son...
Tuesday, November 25, 2008
Thoughts...
While reading current events yesterday I came across an article about Eric Breed. Eric Breed was a rapper...his stage name was MC Breed. The thing that caught my attention was how he died and his age. Mr. Breed died of kidney failure at the age of 37.
Breed was rushed to the hospital in early September of kidney failure. The rapper was on life support for two days before slightly recovering. In late September, he conducted a phone interview with his publicist where he talked about his health crisis. Fast forward two months, he was found dead at a friend's house in Michigan.
This really made me think about the severity of this illness and how if left untreated it can, and most certainly will end you life. In retrospect I personally seem to doing ok on dialysis up to this point. The process of dialysis has grown to become my necessary beast of burden. I now reflect on this burden and wonder had it not been available, how long it would have taken to succumb to full blown kidney failure and it's associated complications. It seems a morbid thought at first glance, but I now truly realize I'm surviving on borrowed time. Had it not been for artificial means I would most certainly be dead or dying.
Well enough talk of death, life is for living. Which reminds me to call Emory to arrange for my final transplant exams. Once complete I should be fully cleared for transplant, whether it be from a living donor or otherwise.
So that's it for now...remember life is way to short to be unhappy any minute of any day!
Breed was rushed to the hospital in early September of kidney failure. The rapper was on life support for two days before slightly recovering. In late September, he conducted a phone interview with his publicist where he talked about his health crisis. Fast forward two months, he was found dead at a friend's house in Michigan.
This really made me think about the severity of this illness and how if left untreated it can, and most certainly will end you life. In retrospect I personally seem to doing ok on dialysis up to this point. The process of dialysis has grown to become my necessary beast of burden. I now reflect on this burden and wonder had it not been available, how long it would have taken to succumb to full blown kidney failure and it's associated complications. It seems a morbid thought at first glance, but I now truly realize I'm surviving on borrowed time. Had it not been for artificial means I would most certainly be dead or dying.
Well enough talk of death, life is for living. Which reminds me to call Emory to arrange for my final transplant exams. Once complete I should be fully cleared for transplant, whether it be from a living donor or otherwise.
So that's it for now...remember life is way to short to be unhappy any minute of any day!
Wednesday, November 19, 2008
Quick update...Turkey Day coming fast!
Well it's over the hump day, and here I sit at home working. I don't recall ever being thankful on here about the ability to continue working by means of remote access, but I truly am thankful. When this situation (kidney failure) first occurred I had concerns about how I would be able to continue to contribute to the family. Fortunately, I work in a role where it isn't necessary for me to physically occupy space at the office. This freedom has allowed me to continue working, along with the flexibility to attend various doctor appointments throughout the month (which can be numerous, especially with the transplant program).
So, it's been about five months since I went under the knife. It seems like it's been much longer. When I think back on the stress and anxiety leading up to the surgery, it seems sort of silly. I think this situation has really matured me in a way I never expected possible. I now have no problem getting my blood drawn, in the past I have my wife hold my hand during lab test. Now the idea of surgery does not bother me, I actually look forward to my next time on the table to receive a good kidney. This is absolutely amazing to me hear that come from me...before I was diagnosed the thought of surgery repulsed me. But, my PD placement experience was flawless without any complications. The test fill and drain in the hospital was textbook. From what I can remember post surgery pain was very limited, in fact I was up walking around 2-3 days out of the hospital ( with the use of some pretty good pain meds ).
Oh, I wanted to tell Suzann to hang in there and keep her husband in good spirits. I found the most difficult issue to manage is the mental component. The best advise I can provide is to not allow him to feel depressed for long periods of time. The longer I live with this condition, the better I am able to cope with the changes that have happened in my life. I still have bad days both mentally and sometimes physically, but I feel fortunate to still be here and able to look forward to better days.
Speaking of my health...I recently have experienced dips in my energy levels thought out the day. Could be my diet, or maybe I need to workout...whatever be the case I'm working on building more stamina.
I think that's all folks...until next time.
So, it's been about five months since I went under the knife. It seems like it's been much longer. When I think back on the stress and anxiety leading up to the surgery, it seems sort of silly. I think this situation has really matured me in a way I never expected possible. I now have no problem getting my blood drawn, in the past I have my wife hold my hand during lab test. Now the idea of surgery does not bother me, I actually look forward to my next time on the table to receive a good kidney. This is absolutely amazing to me hear that come from me...before I was diagnosed the thought of surgery repulsed me. But, my PD placement experience was flawless without any complications. The test fill and drain in the hospital was textbook. From what I can remember post surgery pain was very limited, in fact I was up walking around 2-3 days out of the hospital ( with the use of some pretty good pain meds ).
Oh, I wanted to tell Suzann to hang in there and keep her husband in good spirits. I found the most difficult issue to manage is the mental component. The best advise I can provide is to not allow him to feel depressed for long periods of time. The longer I live with this condition, the better I am able to cope with the changes that have happened in my life. I still have bad days both mentally and sometimes physically, but I feel fortunate to still be here and able to look forward to better days.
Speaking of my health...I recently have experienced dips in my energy levels thought out the day. Could be my diet, or maybe I need to workout...whatever be the case I'm working on building more stamina.
I think that's all folks...until next time.
Wednesday, October 22, 2008
Ohh yeah...
Here is a picture of my cycler machine. It is taking time to get accustom to operation of the machine, but does allow me more flexibility during the daylight hours which was lost to me doing the manual exchanges. I hope to perfect the usage and begin returning to the office on the limited basis. One of the few downsides of this cycler is the time required to be used. If the cycler alarms it increases the overall time.
Issue...
Well, this has little to do with my kidney problem but I recently had a tragedy occur this week. Apryl took my car on a joy ride and bent one of my 20" custom chrome rims...mind you we live in Georgia...you have to search for pot holes like Bush searched for Osama Bin Laden. Somehow she managed to not only locate this mystery pot hole, but also successfully ram my vehicle into it.
Mind you this did not need to occur. Apryl has her own vehicle, a nice crossover vehicle with big ole tires...but no...she decides to take my super low profile wheels out for a spin.
I have uploaded a picture of damage done to this expensive wheel. Replacement cost is around 350.00, not including remounting, re-installing tire pressure sensor, balancing and 4 wheel alignment. Not to mention if there happens to be tire damage, which would tack on an additional 200.00.
I'm sure this did little for my blood pressure, as it has almost completely soured my mood this week. Look at my beautiful Caddy stapped down on this tow truck!
Sunday, September 28, 2008
Been awhile....
Been a little while since I last posted something here. Let's see, I guess the biggest news is gas shortage in the area. Who would believe there would be lines of people at gas stations in Atlanta?? We're somewhat fortunate that we live outside the city and fuel is bit more plentiful, but as time goes on people are beginning to venture out to the surrounding areas in search of fuel.
I completed the cycler training and should begin using the cycler at home pretty soon. This will free me from doing manual exchanges during the daylight hours. This will also make me more productive during the day.
Although I try everyday to view this as my challenge and not my fate, it does seem to get more difficult as time goes on. In general I feel fairly optimistic, but my future seems murky to say the least.
My would be donor from has been strangely silent as of late. Possibly a change of heart? Not sure but whatever happens at least it made me realize there really are people who put the needs of others ahead of there own. This process has helped change my view society and my place in it. They say god don't make no mistakes, and don't give you nothing you can't handle. I guess this all came about for a reason.
Well, that's it for now...
I completed the cycler training and should begin using the cycler at home pretty soon. This will free me from doing manual exchanges during the daylight hours. This will also make me more productive during the day.
Although I try everyday to view this as my challenge and not my fate, it does seem to get more difficult as time goes on. In general I feel fairly optimistic, but my future seems murky to say the least.
My would be donor from has been strangely silent as of late. Possibly a change of heart? Not sure but whatever happens at least it made me realize there really are people who put the needs of others ahead of there own. This process has helped change my view society and my place in it. They say god don't make no mistakes, and don't give you nothing you can't handle. I guess this all came about for a reason.
Well, that's it for now...
Thursday, September 11, 2008
Updates....
Ok, here we go...been awahile since I updated this blog. Let's see what has been going on...well I successfully completed PET test for the night time cycler. Looking forward to cycler training and eventual usage very soon.
Oh, I'm currently playing Mr. Mom. Apryl is away on business trip to Boston. Guess I will have a few days of daddy bonding time with lil Marlee.
No updates from my co-worker donor...not going to pester him with questions.
Well, I think that's it for now.
Oh, I'm currently playing Mr. Mom. Apryl is away on business trip to Boston. Guess I will have a few days of daddy bonding time with lil Marlee.
No updates from my co-worker donor...not going to pester him with questions.
Well, I think that's it for now.
Saturday, August 9, 2008
Day of remembrance
I just saw on the news that Bernie Mac has died. A couple days ago I read an article stating how he was in the hospital but was doing well and would be released within days. The reason I took especial note of his situation is that I drew a parallel to my own condition. I felt as though if Bernie Mac could manage his illness for all these years and still continue to live life, then maybe I could take a page from his book and try to enjoy what I can for as long as possible.
With his passing I feel personally sadden and at a lose. My condolences goes out to his family.
With his passing I feel personally sadden and at a lose. My condolences goes out to his family.
Monday, August 4, 2008
O+ Donor located
Just when things seemed bleek...bang out of the blue someone steps forward with the potential gift of life. Through a seemly random conversation with a co-worker sprang a discussion about when I would be retuning to the office. This prompted me to explain my situation in detail. To my surprise James (the co-worker) stated he was an O+ and willing to donate!
I have heard many times how sometime total strangers donate, but I really did not imagine I would be so fortunate. This has reaffirmed my faith in good people!
So, we're off and running. James called Emory Transplant Center to begin the initial living donor evaluation and is awaiting a return call.
Things are looking up...not say I'm pinning all my hopes on this possible donor...but I'm hopeful.
I have heard many times how sometime total strangers donate, but I really did not imagine I would be so fortunate. This has reaffirmed my faith in good people!
So, we're off and running. James called Emory Transplant Center to begin the initial living donor evaluation and is awaiting a return call.
Things are looking up...not say I'm pinning all my hopes on this possible donor...but I'm hopeful.
Sunday, August 3, 2008
Decent weekend
Had a decent weekend...Apryl convinced me to pull out my ole ten speed bike and take a spin around a local park. It turned out to be pretty nice ride...legs and lungs where hurting but a nice morning ride.
Did not get to ride the motorcycle due in part to the extremely high temperatures and bad weather this weekend.
Did not get to ride the motorcycle due in part to the extremely high temperatures and bad weather this weekend.
Saturday, July 26, 2008
Getting better...
I'm coming out of the dark days...I appreciate the support and encouragement from my friends and family.
I'm thinking about taking the bike out for ride today...been awhile since I hit triple digits...love to hear the sound of the wind and engine at those speeds.
I'm thinking about taking the bike out for ride today...been awhile since I hit triple digits...love to hear the sound of the wind and engine at those speeds.
Wednesday, July 23, 2008
Another Doctor appointment
Well, just returned from yet another appointment. This time they want to stick a needle in my throat!!! And why do they want to plunge this needle into my throat? Because they want to investigate a possible thyroid growth, that seems benign. Every professional opinion seems to believe it's fine, but why not plunge the needle anyway to be sure!
Oh yeah, tomorrow I'm suppose to have an ultrasound of my dice. Who come up with these crazy ass exams? I feel more like a lab rat then a patient at this point.
Once again, I don't know how this is going to work out at this point...hoping for the best, but looking fairly bleak.
Options at this stage, continue dialysis...complete this gambit of strange exams...hope for cadaver kidney over the next five years. And of course the cadaver kidney has a limited lifespan...so I'll end up back in the same situation some years later.
If not already apparent by now I'm still feeling low. Nothing seems to cheer me up these days. I feel as though my entire future and that of my family has been constricted and is held hostage by this kidney failure.
Oh yeah, tomorrow I'm suppose to have an ultrasound of my dice. Who come up with these crazy ass exams? I feel more like a lab rat then a patient at this point.
Once again, I don't know how this is going to work out at this point...hoping for the best, but looking fairly bleak.
Options at this stage, continue dialysis...complete this gambit of strange exams...hope for cadaver kidney over the next five years. And of course the cadaver kidney has a limited lifespan...so I'll end up back in the same situation some years later.
If not already apparent by now I'm still feeling low. Nothing seems to cheer me up these days. I feel as though my entire future and that of my family has been constricted and is held hostage by this kidney failure.
Friday, July 18, 2008
Dark days...
Just returned from my final transplant evaluation and feel less then optimistic. It seems like recently I have had good days and bad days, but more good then bad as of late until today. I heard a lot of doom and gloom during my consults today, which has once again led me to that dark place psychologically. Basically, my hopes of a speedy transplant was dashed with the disclosure that the swap program would not likely yield a potential donor in my situation since the general population on recipients on the list are O blood types as well. This leaves me with zero options on the horizon and that the mercy of the national transplant list.
On a positive note, dialysis seems to be an effective method of treatment. My followup appointment at the center was good...lab test showed significant improvements.
On a positive note, dialysis seems to be an effective method of treatment. My followup appointment at the center was good...lab test showed significant improvements.
Friday, July 11, 2008
Week One...
Ok, week one is in the books. PD training is complete. I have been doing manual exchanges for a few days without any procedural problems. My issues with manual exchanges are time and sometimes nausea feeling after filling. The four exchanges per day pretty much ties me to the house. Each exchange takes an average of 30-40 minutes to complete, with about 5-10 minutes of prep time. With any luck I will only need to endure this manual process for another 3-4 weeks, then comes the cycler.
Began working from home this week...first day was pretty much getting caught up on hundreds of past emails. It's good to get back into the rhythm of work and being productive. Looking forward to the cycler so I can get back in the office...I miss my office.
Need to mention I had low points this week with this whole situation. This has been a hellva transition to say the least. I am fortunate to have a very supportive family and excellent healtcare professionals, but it's still a grim reality when all said is done. Guess it's best to just take it one day at a time.
Think that's it for now...going to try to enjoy the weekend.
Began working from home this week...first day was pretty much getting caught up on hundreds of past emails. It's good to get back into the rhythm of work and being productive. Looking forward to the cycler so I can get back in the office...I miss my office.
Need to mention I had low points this week with this whole situation. This has been a hellva transition to say the least. I am fortunate to have a very supportive family and excellent healtcare professionals, but it's still a grim reality when all said is done. Guess it's best to just take it one day at a time.
Think that's it for now...going to try to enjoy the weekend.
Monday, July 7, 2008
Second half of testing....
Whoa, just completed my second day of transplant evaluation testing. These test consisted of a Thyroid Ultrasound, TTE, and last but certainly not least an MRI. The first two test where non-evasive ultrasound type test. The last one...MRI turned out to be the most traumatic. The MRI began with the tech explaining the various dangers regarding the dye used to contrast the images. These dangers included: death, brain damage, seizure, lose of limb usage, NFS, etc. NFS seemed to be highlighted as the most common issue. NFS is an extremely disabling disease characterized by high blood pressure, burning, itching, swelling and hardening of the skin. NFS can progress to severe stiffness in joints, and can lead to death. At this time, there is no treatment or cure for NSF! This laundry list of potential side effects would make any sane person flinch.
I immediately objected to the use of dye given my degraded kidney function, but was then told Emory has since switched to a new type of dye which has yielded positive results. I must say I felt somewhat under the gun, since this was the final medical evaluation before the my records are reviewed for transplant clearance. After several minutes of question and answer with the techs, I begrudging signed the wavier and scum to the exam.
The tech was very skillful in the placement of the contrast IV, and the MRI itself was uneventful. I now see why this test would be an issue for people who are claustrophobic...it's like being shoved into a round casket.
So, at the end of the day all I can do is trust the professionals at Emory have my best interest at heart and proceed with the process. Speaking of Emory, I must say I've been impressed with the overall experience thus far. Most personnel I come in contact with are genuine and friendly, which helps put me at ease. Radiology seems highly concerned with patient concerns and really go above and beyond to exceed patient expectations. I look forward to many more positive experiences with other groups in the future.
I think that's it for now...have to go an inventory my dialysis shipment which arrived this morning. Couple more days of dialysis training at the clinic then I'll be on my own at home.
If all works out fine, I will begin working from home at the end of this week. One step closer to a normal routine!
Oh yeah, almost forgot to mention Emory now has a donor swap program. This is exciting news since it enables the relative or friend of a kidney-transplant patient who is not compatible as a donor to "swap" organs with another potential donor who also may be an incompatible match for his/her relative or friend. This greatly broadens the pool of organs available from living donors.
I read there are 63,000 patients waiting for kidney transplant...guess I'm now 63,001. That's a big number...but I have hope and I look forward to regaining a new lease on life soon!
I immediately objected to the use of dye given my degraded kidney function, but was then told Emory has since switched to a new type of dye which has yielded positive results. I must say I felt somewhat under the gun, since this was the final medical evaluation before the my records are reviewed for transplant clearance. After several minutes of question and answer with the techs, I begrudging signed the wavier and scum to the exam.
The tech was very skillful in the placement of the contrast IV, and the MRI itself was uneventful. I now see why this test would be an issue for people who are claustrophobic...it's like being shoved into a round casket.
So, at the end of the day all I can do is trust the professionals at Emory have my best interest at heart and proceed with the process. Speaking of Emory, I must say I've been impressed with the overall experience thus far. Most personnel I come in contact with are genuine and friendly, which helps put me at ease. Radiology seems highly concerned with patient concerns and really go above and beyond to exceed patient expectations. I look forward to many more positive experiences with other groups in the future.
I think that's it for now...have to go an inventory my dialysis shipment which arrived this morning. Couple more days of dialysis training at the clinic then I'll be on my own at home.
If all works out fine, I will begin working from home at the end of this week. One step closer to a normal routine!
Oh yeah, almost forgot to mention Emory now has a donor swap program. This is exciting news since it enables the relative or friend of a kidney-transplant patient who is not compatible as a donor to "swap" organs with another potential donor who also may be an incompatible match for his/her relative or friend. This greatly broadens the pool of organs available from living donors.
I read there are 63,000 patients waiting for kidney transplant...guess I'm now 63,001. That's a big number...but I have hope and I look forward to regaining a new lease on life soon!
Friday, July 4, 2008
Ok, here goes...the first post of many
Hello and welcome to my blog!
I will need to keep this one short as it's the 4th of July and preparations need to be completed. The intention of this blog is to provide a method of dialogue for myself and others affected by kidney disease. These comments are welcome from both patients/family/friends or other support.
I personally have found it helpful to express my feelings either verbally or via electronic means. Hopefully others will share their experiences both positive and negative, so we can all grow stronger.
Currently, I am on PD dialysis with the intention of kidney transplant. PD seems to be working out fairly well up to this point...especially since no needles are involved!
I would like to hear other opinions regarding the types of dialysis and related stories. Also, interested in purchasing a belt to secure catheter...any suggestions?
Speaking of transplant, I would be remiss if I didn't mention I'm an O+ blood type seeking a donor.
Well, that's it for now.
I will need to keep this one short as it's the 4th of July and preparations need to be completed. The intention of this blog is to provide a method of dialogue for myself and others affected by kidney disease. These comments are welcome from both patients/family/friends or other support.
I personally have found it helpful to express my feelings either verbally or via electronic means. Hopefully others will share their experiences both positive and negative, so we can all grow stronger.
Currently, I am on PD dialysis with the intention of kidney transplant. PD seems to be working out fairly well up to this point...especially since no needles are involved!
I would like to hear other opinions regarding the types of dialysis and related stories. Also, interested in purchasing a belt to secure catheter...any suggestions?
Speaking of transplant, I would be remiss if I didn't mention I'm an O+ blood type seeking a donor.
Well, that's it for now.
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