It's Been Awhile

So first off I would like to apologize for not keeping everyone up to speed lately. It has been so fun starting to get a glimpse of what normal life is like that I ran a little off track.

Let's start with the good news: 1- Jim started a new job- he is working as a tech at a local therapy clinic. It is an outpatient facility working with adults so the germ exposure is a little smaller (so this makes me happy) 2- Jim also received his acceptance letter into COTA school!! YAY!! What does this mean? It means that Jim will begin school to become an OT assistant in August. He is beginning to chase his dreams that have been on hold for so long.

Now for a little loop- knowing our journey you knew this was coming. We had a follow up appointment on Monday and things did not go as planned. He had his second glofil test and the results were the exact opposite of the first time. His results this time were in the 40's. This test is the most accurate way to test kidney function. Unfortunately a number in the 40's is not the number we would like. This in itself is not something to raise a red flag however his creatinine also went up to 1.8 and his white blood cell count was extremely low. All of these things together were enough to raise the flag! They performed a sonogram to look for bleeding or blockage and this was negative. The physicians made some adjustments to a few of his medications that may cause his white blood cell count to be so low. They also are having him complete another 24 urine collection. He will return to clinic on Friday for yet more blood tests and hopefully we will have better numbers or at least some answers. As of right now we have no conclusive data. We are hoping that all of the little "weirdness" is a just a glich and that on Friday his numbers will return to normal.

Prayer Requests: Numbers return to baseline, peace for donor family, safe travel for all this holiday weekend, healing for families in Joplin.

Bible Verse: "In your unfailing love you will lead the people you have redeemed." Exodus 15:13
(Please, pray that this verse moves my heart so that I know that the Lord is leading Jim and I and that He has a plan for us.)

And The Results Are In!

We finally received our lab results at the end of last week so the numbers are in (drum roll please)

Creatinine 1.6 (a little higher than normal but is probably going to be Jim's norm)
Potassium 4.7 (normal range)
Amylase 58 (pancreatic enzyme- normal range)
Lipase 27 (pancreatic enzyme- normal range)
Hemoglobin 10.7 (red blood cell count- just slightly low- has improved since last time without a procrit shot)


These are all very good numbers! We are extremely happy!!

Jim also had wound care today and 2 of the 3 wounds are closed! Praise the LORD!! The middle wound has made tremendous strides from where it was last week. I am estimating two more weeks on the vac and we should be pretty close to healed up. So for Jim he couldn't be happier to not have his man purse anymore. (the wound vac looks like a black purse that he has to carry everywhere he goes)

The have decreased his clinic visits to every two weeks and have weaned a couple more medications. We are pretty close to the regiment of meds that he will be on for the next 9 months and then they do another cut at 1 year.

Prayer Requests: Man purse is buried far far away (Jims' words), donor family receives comfort, continued good health

Bible Verse: "let us be thankful, and so worship God." Hebrews 12:28

Geek Squad Needed ASAP!

Today Jim had a clinic and a wound care appointment. I believe the Geek Squad is needed at clinic because we sat for 2 hours waiting for Jim to be called back to speak with the nurse and doctor because of an apparent switch to electronic medical records over the past 2-3 weeks, so everyone is still learning the system. I can only imagine how long it takes to add 10-12 medications per patient into a system but wow I have NO patience. They told us that they are having significant difficulty with record carry over so they are having to manually input most of their information. So, after many games of solitaire, words with friends, and jewels on my phone I lost my patience and entered a state of euphoria right in time for them to call Jim back. Unfortunately I do not have many lab numbers to report because with the electronic medical record change they sent Jim's labs off to an outside lab and we will not know the results for approximately 2-3 days. Hopefully this will get fixed by the next time Jim has an appointment so we will have the numbers that day. We did find out that Jim's creatinine was at 1.6 though so this is good news. The nurse practitioner told us today that Jim's range will probably be between 1.4-1.8 and that is where he will remain. Other good news is that Jim is going to get to wean off some of his medications, not the anti-rejection, but some of the stomach meds including Reglan and Protonix, these will become as needed. He will always be on some medication but it is exciting to be able to take some of them away.

Wound update- They are now only utilizing the wound vac on the middle wound. They slapped a very sophisticated "bandaid" on the other two wounds. The physician took at a look at the middle wound and is very happy with the progress it is making. So far the vac is much quieter- maybe we will be able to sleep with less gas noises coming from a charging vacuum between our two pillows.

Prayer Requests: Labs remain good- little lower creatinine would be great (but I don't want to be greedy), peace and support to the donor family,wounds heal quickly

Bible Verse: "Give thanks to the Lord for He is good and His love endures forever." Psalm 118:1

Anxiety...you are not my friend.

I haven't reported much lately because luckily there hasn't been much to report. Jim hasn't had any clinic appointments for the last couple of weeks so it has been relatively quiet in our house. He has had wound care 2x/wk with the wounds slowly but surely improving. They allowed him a short hiatus from the vac this weekend but sadly it will be going back on tomorrow. We do return to clinic tomorrow for our first appointment in 2 weeks thus the anxiety about what the labs will report. They will be looking at creatinine, anti-reject med levels, and pancreatic enzymes. I will be sure to write tomorrow and let everyone know how things went.

Prayer Requests: Labs look good, wound has improved, increased tolerance for Jim with his vac.

Bible Verse: "And He will be their peace." Micah 5:5

Cautiously Optimistic...ahh, feels kind of nice!

Jim and I are going to be cautiously optimistic after today's appointments.

His labs came back with good news-
creatinine stayed put, pancreatic enzymes came back into the normal range, potassium and phosporus are behaving, and his red blood cell count is climbing which hasn't happened in...well... it has NEVER happened, at least not on it's own since I have known Jim. These are all very good things!

His glofil test results came back as well and I have googled and googled and have not found a lot of information on how to interpret the results so if anyone has more information on this than I, I would love to hear from you. This is my very embarrassingly elementary understanding of the results. Apparently for a person with 2 good kidneys, not transplanted a perfect score is 100 or above, for a 1 good kidney transplanted person a good score is 50-100, a person on dialysis is around 20, and below 20 you are placed on a transplant list. Jim's score was 103 corrected and 118 uncorrected. I am not sure what that means other than that they told him that they were very happy with these numbers. On the lab report there was an H next to the 118 meaning HIGH however Jim did not ask any questions about this H so I have to just relax and be cautiously optimistic.

Jim's small pot hole like incision is also improving. The top incision has decreased in depth to 2.0, the middle and largest has reduced in depth to 2.5, and the bottom remains superficial however still inside the vac drape. They told Jim today that he needs to expect to wear the vac for about another 3-4 weeks. I could not be happier that he is filling in so nicely. I was starting to fear that I would soon be able to see through my husband in three different places had the vac not come along.

They have reduced Jim's clinic appointments to every two weeks, which provokes a small anxiety attack in me. I realize that I am not the expert and although I would like to think I am I must again RELAX and remain cautiously optimistic! I think that the Lord keeps placing these circumstances and experiences into my path so that I will realize that He is truly in control and I that I should at some point get tired of trying to steer. Well the Lord should smile today because I do realize that He is in control, however it may take me awhile, as in a lifetime, to have the faith to not try to lead.

Prayer requests: labs remain stable, continued wound healing, comfort for donor family

Bible Verse: "He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul." Psalm 23:2-3

HELP!! I'm Drowning!

This is what Jim felt like today when he had to complete a glofil test. Apparently this test is the most accurate way to determine kidney function.

What the test entails is:
1st- Jim drinks a small amount of iodine mixed in diet coke (YUM) and they inject his with a readioactive dye.
2nd- Jim drinks 80 ounces of water within 30 minutes. After he drinks all of this water he uses the restroom and then they draw labs. (He is starting to get sea sick)
3rd-Jim drinks 2 more glasses of water. After this water, he waited for 30 minutes and is required to use the restroom again and then they draw his blood, again. (He is putting on a life jacket at this point)
4th-Jim again drinks one more glass of water, waits for 30 minutes, uses the restroom, and more blood is drawn. (He is now doggy paddling while seated inside the clinic)

All of this water and blood are to measure how fast his kidneys dispense the iodine that he initially ingested. We did not get any of the results today so we are anticipating to get these on Thursday. As you can imagine one of the side effects of this test is nausea, and you may have guessed that Jim did experience this plus a little more. (poor guy)

The labs they did pull prior to the test, showed creatinine again at 1.5, pancreatic enzymes improving with one remaining a little elevated however much improved from last week. The other levels we look at were close to normal. He will most likely require a procrit shot this week secondary to anemia.

When Jim made it to wound care he was so nauseous that he couldn't really watch what they were doing. Per the nurse' report the bottom wound has almost closed, the top one has decreased in depth by close to half, and the middle one is taking its time, but improving.

Prayer Requests: labs continue to stabilize, wound continues to heal, prayers of thanksgiving for such wonderful support and love

Bible Verse: "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you." Isaiah 43:2

Wrong...Right... I like Right!

What I mean from above is that on Friday they pulled the wrong labs for Jim. This is a little frustrating when Jim's parents drove all the way down here in the bad weather to take him to the hospital for his labs to be drawn since the clinic was closed again. The doctor called and reported that his prograff level was very low and I explained to her that she is probably correct since he is not on prograff. They also did not pull his pancreatic enzymes which is exactly why we wanted his labs to be pulled in the first place because his Monday level was dangerously high. When I spoke with the doctor I explained all of the reasons why these labs were incorrect and she said she would get them corrected and wanted him to return today for another lab draw. This time, after both Jim and I were annoyingly repetitive about what they needed to pull, they DID report the correct items. The doctor called us this afternoon and it looks like his creatinine was 1.5 and his pancreatic enzymes were back to normal!!! Jim's cyclosporine level (which is one of his anti-rejection meds that affect his kidney fuction) was at 180 which is a little lower than they would like so they increased this medication again. Needless to say Jim's medications change from day to day so it is never a boring day in our "drug" world.

Prayer Requests: Continued stabilization of his labs, patience for Jim and I, comfort for the donor family, and a WIN for Green Bay!!

Bible Verse: "Give thanks to the Lord for He is good and His love endures forever."
Psalms 107: 1