My apologies for this update being so late! It was not intentional, nor neglected in any way. I had a number of things happen and come up that interfered with my ability to get this typed up.
So, let's start with the initial Pre-Transplant Orientation...
As I stated earlier, due to the Wuhan virus, this first step in getting me relisted was exclusively via video conference. The order of the day was the following:
-Education (About Transplant)
-Living Donor Information
-Speak with a Surgeon
-Social Worker Interview
-Financial Planning
-New Pre-Transplant Coordinator
-Clinic Nephrologist
*Did NOT meet with Pharmacist
The day went well, and quickly--as anticipated--because of my prior transplant workup. In all, it still took five hours to get through as the various Clinic personnel had to cycle from patient to patient; and for me, with all of my established history, most visits were relatively brief. In summary I am initially being listed as a "Status 7" which means inactive but accumulating time. Once I start dialysis, I will be converted to "Status 1" which is active on the list, and eligible for transplant.
Unlike any first-time patients, I have only a few tests to do which are: PET Test (Cardiac), Walking Test, Bloodwork (extensive), Dental Clearance and an updated Colonoscopy. Plus, I need to update my Hepatitis B inoculation.
As I had previously undergone a Cranial MRI (prior to first transplant), I can forego this, and the Clinic will obtain those records.
I have already done the bloodwork during my most recent labs, as well as the walking test; which I did exceptionally well. I already had the updated Colonoscopy in the works, which leaves only the PET Test, Dental Clearance and Hep B. I am currently getting those scheduled, as well.
Lastly, I need to lose an additional 20 pounds (about 9 Kgs) in order for my BMI to get beyond the borderline it is now on for surgery. My target is 107 Kgs, or about 235 pounds.
18 Aug 20 Labs:
*Creat: Unknown
*HCT: 34.7 (+1.5) Low
*Hemo: 10.7 (+0.4) IR
*Lymph: Unknown
*Lymph ABS: Unknown
*Neut: Unknown
*Neut ABS: Unknown
*RBC: Unknown
*WBC: Unknown
*BUN: 47 (-11) Extremely High
*CA: 9.0 (-0.4) IR
*GFR: 18 (+2) Extremely Low
*Gluc: 115
*K+: 3.8 (NC) IR
*NA+: 138 (+2) IR
*MG: 2.3 (+0.1) IR
*Phos: 3.6 (-1.0) IR
*Prot: 7.1 (+0.2) IR
NC= No Change IR= In Range
I do not know why the missing lab values are not available. It could be that I just cannot see them from this particular draw. However, with the BUN lower and the GFR higher, it can be safely assumed that the Creatinine came down a little; which is good.
Also, on this lab visit, I had an extra 15 vials of blood drawn for that additional bloodwork. Of what I can access, there were at least 60 other tests done beside my normal labs. I won't even begin to pretend I understand them!
The acupuncture is making more progress against the TMD headaches. This week, following my Tuesday appointment, I have had three straight nights that I did not take any T3 in the middle of the night. Now, not taking these meds has happened before, but only sporadically. To have three consecutive nights of no meds is great! Plus, on several daytimes I am taking only Excedrin to combat any small headaches. However, the evenings are seeing the TMD manifest itself with intense pain. I use the T3 once, maybe twice, and that is all. So overall, there is definite progress.
My workouts are sporadic. Due to the aforementioned busy week, I did not get a workout done for eight days. However, once I did, the effort was easier than I had expected after such a long layoff. This week I have done two workouts, despite being tired. Plus, I am very close to breaking off the rowing exercise on its own day. One or two more workouts should be enough to do that.
There have also been a couple of days that saw me just feeling lousy; like I did when my own kidneys were dying. Each time I bounced back the next day.
Also, over the previous week, I had the unhappy fortune of developing a cold. That added to my tiredness and the difficulty of busy days. The cold is now complete, and my sinuses are clearing out which is always fun...
That appointment with my Nephrologist was a bust...because I spazzed...big time!
Though I knew the date, and had a reminder from the doctors' office, for some reason I had it in my head that the appointment was on Tuesday--the day I always have his appointments on. Plus, this appointment was made over the phone, and I did not bother to look at the day of the week. Additionally, I failed to look at any calendar date anywhere...on any device, so I did not see that my brain was mistaking the dates and days. As a result, I missed the appointment...on Monday. I only realized this when I received a call on Monday afternoon asking to reschedule. (Doh!!!) The new visit is for MONDAY, 31 August.
The slow changes in the appeal of various foods continues. I've been eating things that have not been a problem since my transplant, and suddenly just know that I am struggling to eat it because it simply wasn't appetizing. Luckily, this only involves a few easily replaceable things...so far.
I had another episode of dizziness; but not as severe as the first, and not as long. Plus, I have started having diarrhea again, as well as nausea in the middle of the night; which is such fun! :( So far neither are consistent. However, these are a definite signal that the kidney is struggling even more.
My fluid intake continues apace of expectations, and I am getting rid of everything I take in. In fact, I am consistently back under 120 Kgs once more.
With my workouts, my energy level is up, overall. This takes into account the tiredness I feel from the advancing kidney issue. There are days that I have zero energy--as mentioned--and I am finding myself starting to take more naps during the daytime, despite having gotten some good sleep the night before.
So... a lot happening, and the Signs and Symptoms (S/S) of advancing renal issues will worsen as we go along; however quickly or slow those may happen. Personally, I was hoping to go a few more months before seeing these, but it is what it is, and getting frustrated will not help me whatsoever.
I think that that is everything. If not, it is enough for now.
Right now, I do not know if I'll get another update done before 02 September as my focus will be getting everything I need to do for Pre-Transplant scheduled, and getting to any new appointments.
So, until next time...
Good Health to All!
ScottW
