On this page I’ll post results from my Post Transplant Clinic Visits or other Dr. Visits.
I’ll List changes to Weight / BP / Meds Tweeks etc.
After the blurb below they will be in reverse order, newest 1st
Tuesday – August 4th - 1st Clinic Visit, 8 days since transplant .
The Next Phase of recovery is twice weekly Post Transplant Clinics for the next 6 – 8 weeks, here’s the drill.
1) Between 7 – 9 am, Sign in at 6th floor Renal Unit and Weigh yourself ( 84.7 kg today / 187 lb) < still packing some water weight from super hydration
2) Go to the lab for 3 or 4 vials of Fasting Bloodwork , they also take a bit extra occasionally as I opted in to a Post Transplant Study, anything I can do to help further the cause.
3) Have Breakfast and take Meds , They want to take your blood when the anti rejection drug Tacrolimus ( Prograf) is at the lowest level in your body ( trough level).
4) An Hour later head back up to the Clinic and wait for Bloodwork results to arrive, when they arrive you get called in to see the nurse and review the last few days, meds, blood pressure and in my case they also Changed My Dressing and said the incision looked great.
( I didnt require the stool to get up on the table, most people do apparently, I made a point of working out and staying inn shape Pre Transplant to speed up recovery, seems to be working !! )
The Dr. looks over the results and may meet with you if required,, making changes as required.
Changes made today,
- reduced anti rejection drug Mycophenolate ( Cellcept ) to 2 pills from 4 pills twice daily. hopefully this will reduce my diareaha, my main side effect, they said I could also take Imodium and gave me a list of foods to eat and avoid as well )
- Increased anti rejection drug Tacrolimus ( Prograf) from 3.5 mg from 3, twice daily, reading was a tad low.
I walked home from the hospital for the first time Post Transplant, about 8 blocks. Healthy it takes about 11 min, today I went slow and did a couple short stops, took me 21 min. , but I did it , Yeah Baby, needed a big rest after that one.
Nausea is Very Minimal today, Incision feels good but played Dane my Son a game of pool today and the bending over to shoot cause some minor discomfort, but I still beat him !!
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Oct. 21st Clinic, 12 weeks. Here’s the Numbers. I’m now down to Bloodwork every 2 weeks and Clinic’s 1 x / Month.
Weight, Still 200 lbs, some Predisone Face going on. I’m aiming for 190 end of November.
Creatinie, 192 ( 193 previous, 212 before that, 174 before that ).
Hemoglobin stable at 112, looking for above 130, that should be coming soon.
Blood pressure is a little high at 14o ish / 90 – 96, but I do hit mid 80’s at times. I have a home blood psi tester and am tracking it at various times to get a good average. Don’t need higher doses of BP Meds.
The Clinic Nurse said “It’s not all about the Creatinine” as My New Kidney is doing everything else that its supposed to, Regulating Fluid level in my body, Maintaining Potasium etc at the Normal Levels . Some people end up with a higher Creatinie level and do great, so No Worries !!!!
Recovery is going well. Meds (cellcept) are giving me some GI issues ( mostly Soft acidy ”Stools” at times). I’m at 1000 mg, 2x per day. If GI doesnt settle down they’ll try me on Coated Cellcept, kinda Time Releases, but don’t want to change med’s up much as they’re still watching the Creatinine. It’s manageable most days.
Tacrolomis ”Shakes” are still there. I’m taking 3.5mg 2x/day. It’s especially funky when I try to do fine work. This may be an issue when I get back to work as I’m an Electrician who needs to meter live equipment, up to 600 Volts. Shakes arent an option.
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Oct 01 /09, My Last Vancouver Kidney Clinic.
A Great last Kidney Clinic in Vancouver. Its Been 9 1/2 weeks since the transplant. The fact that they’re transfering my file to Kelowna, were I live meens I’m doing well recovery wise. I’m Psyched to be Home for good now. We are officially moved out of the Kidney Condo as of today as well.
Weight 91 kg, 200.7 lb, 1st time in my life I’m over 200 lbs, Weird !! Looking forward to hitting the 3 month mark so I can pick up the activity / workout level a lot.
Creatinine today is 174 ( 183 the last week 3 weeks ).
Hemoglobin is 107 (up from 104)
Last Thursday we adjusted my CellCept dose delivery from 3 x 500 mg to 2 x 750mg , so I’m taking it with the rest of my pills. I had some stomach / diareha issues the 1st 3 days but it settled down the last couple which is Great
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September 17, 2009 7 1/2 weeks since Transplant
I’m back in Vancouver for a few days. The Kidney Clinic went well.
Weight 88.6 kg / 195.4 lb ( 1 week ago 89.3 / 196.8 lb )
Creatinine 182 same as last week, No worries, All other numbers are Good .
Note : My Creatinine of 182 is measured in umol/L , a second way of measurement is in mg/dL. ( gives a smaller number, today mine would have been 2.06 mg/dL ). To roughly convert between the 2 just multiply or divide by 88. 182 / 88 = 2.06 mg/dL . Or 2.06 x 88 = 181.2 umol/L .
Hemoglobin 97 up a wee bit which is good, Potasium 4.1 OK.
They upped my Tacrolimus a from 2.5 mg 2x/day to 3.5 mg 2x/day. We’ll see what that does to my Creatinine as Tacrolimus restricts Blood flow a bit, could that be why Creatinine flatlined this week.
Overall I’ve been feeling Really Good the last couple days. Tons of energy, Guts have been about 70 % good and I’ve felt like I was doing a decent amount around our house yard and family. I’m liking it Big time.
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September 10, 2009 , Thursday Clinic, 6 1/2 weeks since Transplant.
Another Good Clinic,
Weight 89.3 kg / 196.8 lb ( 1 week ago 87.2kg / 192.2 and I actually dropped a bit the last couple days according to my daily weigh ins) . The weight is bugging me a bit, but I’m just going to pic up the walking and biking. I’ll watch the eating a bit, but I’m not worry about it much as the Doc said after 3 months I can get back to running, weights etc. That will be the tough part, Pacing Myself Then !!
Creatinine 182 ( last week 197 ) (Tacrolimus is now at 2 mg 2x/day), All other numbers are good.
They dropped my Prednisone today to 15 mg, 1x/day ( from 20mg ) hopefully this will ease the side effects a bit, shaky, mind rev’s, achne on my forehead which the nurse commented on. They called me mid afternoon and increases the TAC drug to 2.5 mg , 2x/day ( from 2.0 mg, 2x/day ).
I got refill of most of my drugs Except the Sleeping Pill, Ran-Zopivone 7.5mg before bed, the Doc said it was to addictive and I should ween myself off it now, down to 1/2 pill ( 3.5 mg ish ) before bed for the next few nights. We’ll give it a try, hopefully with decreased Prednisone I’ll sleep OK. I never did notice a wave of tiredness etc. after taking the sleeping pill, but I did sleep more soundly from past tries going without. We’ll see how it Goes.
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Monday August 31, 2009 , It’s been 5 weeks since the Transplant. Things continue to Improve.
Weight 85.9 kg / 189.4 lb ( Thursday 186.2, 1 week ago 181.3 lb ) With Gain like these you’d think I was at an All Inclusive Resort !! thats about enough Gain now.
BP 128 / 80, Better today
Creatinine 217 OH YAH !! ( Thurs was 254, 1 week ago 274 ) Function has Improved so I’ve bee put back on Tacrolimus AntiRejection Drug, 1mg, 2x per day. Once the TAC stablizes they can lower the Prednisone .
The Doc said the % function ( or GFR ) is about 30 % . It’s actually between 25 – 35 % depending on which method they measure by.
Hemo 94 , Potasium 3.9,
I mentioned the Increased Indigestion I get after eating lately, this is actually important as it can signal a Virus ? in the upper stomach area thats starting to act up, so far its OK but the Doc said to keep mentioning little stuff to as it’s all part of the picture.
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Clinic Results, Aug 27, day 31.
Weight 84.4 kg / 186.2 lb ( 1 week ago 82.9 / 182.7 ) I’d like to draw the line here with the gain, but won’t sweat it as once I’m fully healthy and active I’ll be back to fighting weight quickly. # 1 is give my body lots of good nutrition to heal with and easy access protein and calcium foods for the Prednisone to take versus my muscle/bone.
BP 135 / 95 ( 1 week ago 127 / 83 ) a bit high “95″ but the Dr. says let it ride a bit for now till things settle down.
Creatinine 254 Down More !!! ( 1 week ago 295, 2 weeks ago 330 ). I looked back and I havent been below 300 since Aug. 2008.
Hemoglobin 95, Low but not worth treating at this point, , White Count 8.4 whatever that means.
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Clinic results. Monday Aug 24th, 4 weeks after transplant.
Wt 82.9 kg / 181.9 ( prev 82.9 / 182.7 lb , I’m sure I dropped 1 lb between 5 – 6 am )
BP. 127 / 83 , heartbeat was fast, 94 just after standing up, 84 later in the day, ususal for me over the last couple weeks is 68 – 72, in my unfit state )
Creatinine 274 ( prev was 295 and 310) Back to back decent drops, VERY NICE
Potasium 3.9 ( prev 4.1 ) Good #’s
They dropped my CELLCEPT ( anti-rejection <gut muncher> ) from 2000mg ( 1000 2x / day ) to 1500mg per day over 3 smaller doses instead of 2 Grandious Doses, hopefully this will easy my Intestine & Crap Funk . It’s bearable although not fun, at this point ( just got worse the last 3 days ). If unchecked it can Eat holes in your intestines and Ass. I’ve heard that from a previous transplant patient who ended up in the hospital weeks after transplant to treat his guts. I’m glad they’re being proactive.
I got OK’d to Go home for a visit and do bloodwork there on Thursday. I almost Cried when they said that ( damn PMS < Pre-Manly-Syndrome>) . I really wanted to go and instantly started planning how to do it. I reaaly Miss my Son and want to chill with him, I’m even ready to take a few shots on him in net : ) , .BUT, I looked at it from a recovery standpoint and I will wait until the Sept 7 long weekend. That was a tough decission. If I go home I KNOW I’ll be to excited to rest and will want to Go Do things and just won’t rest. I know Me. I’m forcing myself to stay here and recover from my busy weekend. I also feel a little like a cold’s trying to set in, so I Need to rest. Plus I have a Freind, Mark from Winnipeg coming to Vanc Friday to Monday and I’ll once again Push the Envelope a bit.
The Doc’s said if things keep up that after next week I’ll be at once a week clinics ( still 2x / week bloodwork ) . That will be Great.
I know I’m still my biggest threat to recovery, so I’m acting accordingly, tough as it is at times.
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August 17, 2009 Monday – Kidney Clinic today, 3 weeks since transplant.
Weight 81.9 kg / 180.6 DROPPING Thurs. 82.4 / 181.4, I’m Way to Skinny, eating Well, Still dropping. Time to Go on a Weight Gain Diet, Anyone feel sorry for me ??
BP 133/87 NICE , so Colleen’s in the room with me, the nurse has her back to me while the BP machine is automatically pumping up, Coll gets a mischievous grin and pulls a Victoria’s Secret catalogue out of her purse and starts showing me pics ” Lets see if this raises your BP ” she laughs. What an Awesome Wife !!
Creatnine 310, Dropping-ish Yay, Thurs was 330, Doc Said if its under 300 on Thursday No Biopsy, Otherwise its Needle / Gun time.. No worries. I was asking about Biopsies being Extra Stress on an already Stressed Kidney, Doc says its not to that bad and in Winnipeg Biopsy are done on Every Transplant Patient, ie. 1 mo. 3mo. 6mo. . . . so Its can’t be that bad.
Hemoglobin 98 , Potassium 4.1 ( under 5 is GOOD )
I Slept BAD last night, tried not taking a Sleeping pill for 1.5 hrs, then took 1/2 pill, finally asleep by 1-ish, awake 630. Had a 1 Hr Sleep early afternoon. Going for the Full Pill tonight.
Still Seem to have a Good Energy level and feel Great.
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2nd Post Transplant Clinic August 7, 2009, 1 1/2 weeks on my new kidney.
Did my 2nd Checkup today. Extra long today 830 – 1 with a bonus stay until 6pm.
Weight 84.3kg (previous 84.8).
Creatnine 305 (previous 308) ( normal 50 – 100 ) a slight drop but basically flat, at least I didn’tloose ground. BTW GFR (overall function 19 %) I’m not Stressin it, It’ll come. Sooner would be better though. Still feeling like I have more energy than that.
DRUGS - Tacrolimis/Prograf (anti-regect drug ) reading is low so they upped it from 3.5mg to 4.5mg. Due to 20mg Prednisone per day the Nutritionist wants me to get more Protein , Calcium and take Vit D 1000 to aid Calcium absorption as Pred sucks calcium and Protein. Also Protein aids in Tissue healing.
So the Doc wants to have another look at the Kidney to see if there is a reason is for its lack luster preformance out of the Gate. SOoooo, Lets do a detailed Ultrasound, Fair enough, so they did. Next just for fun Lets poke some holes in the new kidney, BIOPSY AGAIN. OOhh lets not and say we did please. I went into it positive thinking ” I was feeling bad that day to begin with that’s why it was a rough ride “, so I just went with it. It was easier than the 1st., Attitude ?
Kidney Biopsy, 1st Ultrasound to find the Biopsy spot then freeze where they are going in and down to the Kidney. They make a small Scalpel nick/cut to inset the Biopsy Gun/Needle. Then Fire up the Ultrasound and guide the Biopsy Needle into location, SNAP, the gun fires, you feel a little movement but no pain, 1st one is done, Not too bad !. There’s a Lab person there as well to verify its a good sample to Stain so they can see what they need to see. They took the second and a Bonus 3rd ( lucky me) Biopsy. 2nd and 3rd times hit a live nerve. It musta been the Inhail and Sweat Nerve cause that’s what I did. But when the Doc asked if I was OK I just said Yah, Keep going. I wanted it done. It will be tomorrow afternoon before I get results. After the Biopsy they want you to stay laying down for 30 min to Clot the area and stay in the hospital for 3 – 4 hrs. They also check 3 urine samples for Blood. So Glad to be done that. I got a free meal out of the deal though while waiting. BONUSssss !!
Got a ride home and laid around watching TV for the rest of the evening. Corner Gas, Video on Trial, So you Think you can Daunce Finale.
I have a renewed commitment (scared straight) to my Recovery. My Goal Each day is now RELAX HARDER ! I will keep moving forward, but in a slower advance, less forced and focused on perceived recovery meaning just cause the outside looks and feels good and can take it I DON’T KNOW WHATS GOING ON INTERNALLY AND MICROSCOPICALLY SO IF THEY SAY 8 WEEKS CHILLIN, I’M THINKING 9 WOULD BE IN ORDER I’ll get my fitness back eventually regardless. I’ve heard that at the hospital and from my wise wife, Now I will follow the wise advice, but I may need reminding a few times, old habits die hard.
That is All, Class Dismissed !!
Breaking news, Diarrhea is Done, I’m so Happy , praying it stays that way !!
