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.

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.

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.

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.

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!

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.