First Post-Transplant Clinic Day
Mike and his mom were up at OHSU again for labs and the first post-transplant clinic day. Feels so good to be on this side of the kidney transplant! His numbers (and there are a lot of them being watched) are getting very close to being exactly where they should be. As in NORMAL ranges! His incision is healing well and no more bandages over the spot where his dialysis catheter was removed. Mike is still in awe that he doesn't have to do dialysis any more, which was M/W/F from 6:20 pm to 3:40 am since March of this year.
Mike is Discharged on his 31st Birthday
Just six days after his kidney transplant surgery, Mike gets to go home! His kidney is working beautifully, yet he's gained about 50 pounds of fluid in his abdomen and legs - very uncomfortable but expected. He's on a higher dose of prednisone, which is a wonder drug but causes Mike to have high anxiety, mood swings, and lots of energy (as if he didn't have enough!)
Alicia is Discharged from OHSU
After a day and a half of dealing with pretty significant pain and nausea, the doctors found the right combination of medications and Alicia is feeling quite a bit better. So much so that she was discharged just two days after surgery, and got to visit Mike before going home to her husband and young kids. You're a rock star, Alicia!
Loooooong Surgery Day!
Mike and Alicia (and family members) arrived at OHSU bright and early (5:30 am) on surgery day! Alicia went to pre-op by 6 am and her surgery was first (obviously!), and we received word her kidney was "pristine and beautiful," and she was in the recovery room by 1 pm. They then put the kidney on ice and took Mike to the operating room about 2:00 pm. They actually started the surgery at 2:45 pm and finished around 7:30 pm.
The surgeon came out about 7:45 pm and showed us photos of the new kidney outside Mike's body, then after it was in and connected ... definitely a cool moment to realize the magnitude of the gift Alicia gave to Mike.
Alicia has had a lot of nausea and pain since her surgery, but is doing well considering what her body has gone through today. Mike was able to be visited around 10 pm ... groggy but good!
Mike set up a GoFundMe account for Alicia to help replace lost wages for her single-income family as she recovers from her selfless organ donation, as well as to give her something extra to have a date with her husband after her healing process. Please help us take care of this sweet family with donations, prayers and shares. Just click on the link in the heading of this post to go to her page.
We Have a Confirmed Transplant Date - Halloween 2017!
Mike's transplant coordinator let him know that October 31 is the date for transplant. We can't wait!
Mike continues to stay positive but is really ready to be done with dialysis. He still doesn't feel very well during or after each session. His appointments and lab schedule are very heavy during the weekdays, and then the Monday/Wednesday/Friday night dialysis runs are long and he is very tired and wiped out half of the day following a session. And please keep Mike's kidney donor Alicia in your thoughts and prayers, as well as Mike, for the speediest of recoveries for them. Then we will commence celebrating!
It's Official! Alicia is Donating a Kidney to Mike!
After having a number of amazing people come forward to be tested to see if they could be a living kidney donor for Mike, it's been confirmed that Alicia is a great match (so perfect it's almost like they're related!), so she will be his kidney donor. Thank you Alicia! We should find out the surgery date soon, but for now we wanted to share this fabulous news.
Mike's in the News Again!
Dialysis Day One is Done!
Mike and his mom checked into Davita Dialysis Center in Oregon City at 10 am this morning for Mike’s first dialysis treatment. He got all set up with his phone, IPAD and a little TV on a swing arm on his fancy recliner. Started treatment at 11 am, done by 1 pm. He’s bleeding quite a bit at the catheter site, so he headed home to infuse with clotting factor and is now going up to the Hemophilia Treatment Center at OHSU to have them fix the catheter dressing. After that, he’ll stay at OHSU another couple of hours to get an IV treatment for B1/Thiamine. While we can think of many more fun things to do on a sunny Thursday, this is all good stuff to get him feeling better. Go, Mike, go!
Today's the Day ...
... for the catheter placement for Mike to begin dialysis later this week! Although you wouldn't think this would be exciting, it is. Got to get this guy feeling better and it's one step closer to kidney transplant. Procedure at 8:00 am, and Mike's already in recovery. Everything went well. Mike and his mom are of course ready to get out of there! Thanks for the prayer and good thoughts!
Magic 8-Ball Says ... "Reply Hazy. Try Again Later."
Just when we think we have a specific plan moving forward, someone shakes the Magic 8-Ball and comes up with a different answer.
Last week’s appointment was with Mike’s kidney doctor, and this week’s appointment was with his kidney transplant coordinator. Much different process/outcome this week, and no doubt we’ll get further clarification as we have additional appointments. Hard to keep up with it all, and we hope you’ll continue to hang on with us through this crazy ride!
Mike did get scheduled for his dialysis catheter for March 14, and he did select an Oregon City dialysis center where his OHSU kidney doctor makes rounds. However, based on what the coordinator shared, it sounds like they are in no hurry to get him going on the kidney transplant because “people can live with dialysis for a long time” and that they are going to have to “work him up for transplant” (AGAIN). In addition, she said there is no rush to identify kidney donors. Sounds like the “work up” process will take 6-8 weeks, when we originally thought the kidney transplant itself would be in 6-8 weeks. Sigh …
Mike is finally starting to have less pain associated with his shingles (hallelujah!!), but continues to feel pretty lousy with the nausea and fatigue. But Mike being Mike, he continues to think positively and make the best of this tough situation.
Next time we shake the Magic 8-Ball and ask the universe whether Mike will feel better soon and the transplant process will proceed smoothly, we’d sure like the answer to be “It is Decidedly So.”
Kidney Transplant Possible in 6-8 Weeks, Starting Dialysis Soon
Mike and his mom saw his kidney doctor yesterday, and LOTS of information came from that appointment. Bottom line is Mike is feeling pretty lousy these days, and the majority of his worsening symptoms (nausea, vomiting, fatigue, no appetite, shortness of breath) are from the declining kidneys – lots of toxins in there. Just for added fun, Mike is still dealing with low platelets and now painful shingles, and of course still has hemophilia and its related issues. He’s sure fighting hard to remain positive, but some days it’s just hard.
The current plan is that Mike will soon start kidney dialysis, which will be twice a week for 2-1/2 hours. The referral for the kidney transplant has been made, and he’ll be able to have the transplant at OHSU. An appointment will be set for next week for them to learn about the live donor process more thoroughly. Mike is “O” blood type. We will definitely share more info when it’s learned.
In the meantime, let’s let Mike and his family know we’ve got their back and are behind them all the way. You can do this!!
Tough Week for Mike ... Let's Send Him Some More Love!
Mike has had a pretty tough week. He continues to have nausea, vomiting, no appetite, insomnia, and anxiety. His depression and feeling so lousy for this long is (understandably) getting to him. He doesn't feel like cooking, eating or doing much of anything at the moment (that doesn’t sound like our Mike!)
Mike is getting his hand and wrist X-rayed again this afternoon. The first X-ray a week ago didn't show a break from when he first hurt it steadying himself in the doorway, but he's not healed from that original sprain/bleed. He can barely move it and is in lots of pain. The concern is that with the daily infusions he's been giving himself, there may be a clot in there causing pain and lack of healing. We are hoping to get results late today or tonight (usually get the results call after 6:00 pm). He's also getting labs drawn.
Mike went for his follow up at Casey Eye Institute yesterday for the pre-macular bleeding issue in his right eye and they confirmed it is healing. Unfortunately the left eye now has 3 “bleeds” (where there were previously none). They are not painful and aren't affecting his vision, but are still concerning. It is from his low blood cell counts.
Mike’s B1 is extremely low and they have increased his supplements, but he has to go in for IV B1 treatments 2/20-2/24, 2/27-2/28 (at a whopping 1.5 hours each treatment!)
Wow … how’s that for a sorry-sounding update? Please continue to keep Mike in your thoughts and prayers, and let him know we’re behind him 100%. We hope you feel better, Mike! And SOON!
New Kidney for a New Year!
It's kinda weird to wait for sustained poor lab tests so the kidney transplant can move forward, but that's just what Mike's had to do. His kidney function numbers have finally dipped low enough for long enough that he qualifies to again move forward with the transplant process. He'll have additional tests and blood work, and then a second kidney transplant education class, which will discuss how things would work if he finds a match from a living donor.
His spirits are good despite the poor stats on his kidney function. He had a painful mouth bleed a couple of weeks ago, and he also had a Pre-Macular Hemorrhage in his right eye. These are from his white blood cell count being so low and his system being immunosuppressed from anti-rejection transplant meds. He still chooses to show a positive attitude and not complain, but boy has this holding pattern been hard. Mike is so ready to get on with his life already, but there's this thing of a kidney transplant before that's going to happen.
Here's where you come in. We need to raise $1,000 by January 24 to bridge the income gap and allow his family to pay their February bills. We hope that you'll continue to show your support to this family and donate what you can for February. A huge thank you to everyone for your continued good thoughts, prayers and every kind of support you all provide to Mike and his family always.
More Kidney Classes and a New GoFundMe Page!
Mike and his mom will attend a kidney transplant education class soon and attend more appointments at OHSU to determine if he will need both dialysis and transplant, or whether he will go directly to the transplant phase. At this time, his nephrologists want to be proactive and get him a new kidney to keep his new heart working great and get him to start feeling better and get on with his next chapter. Many of you have asked what you need to do to get tested to see if you are a match in order to donate a kidney to Mike. Thank you so much! We will provide an update soon on learning more about the donor process.
This GoFundMe page's goal is to raise money for the Hargett/Hall family to help deal with these ongoing expenses by helping with lost wages, rental housing, food, basic living expenses , and other costs associated with his long-term medical care. We anticipate this will be short-term help until Mike and his mother can both go back to work, but in the meantime his family will need to raise $1,000 each month to meet their basic expenses. Additional funding will be necessary if he needs to go back to Cedars-Sinai in Los Angeles, but for now we're still hoping everything can be done in Portland.
People often ask how they can help, yet feel powerless to know how to help Mike and his family. Financial support is the best way to help if you can. And always, always, prayer and positive thoughts are welcomed and do keep Mike and his family going.
Our Easy Button Seems to be Broken.
Mike had labs on Friday and received a call that night saying his kidney function has gone in the wrong direction; OHSU plans to readmit him this Monday to start dialysis.
We don’t have any answers to our many questions at this point. Is this temporary? Is he going to be able to go to outpatient dialysis? How soon would the kidney transplant be if needed? How do friends and family find out if they are a match?
All we know is that when he gets admitted Monday they will be doing a procedure to place access for the dialysis treatment. We don’t know if he gets his first dialysis treatment the same day they place it or not. We are assuming it would start the same day, but we need to confirm that Hemophilia has signed off on this and is bumping up his Factor 8.
Mike hasn’t been feeling well, generally speaking, for a couple of weeks. From what we’ve read he will feel better and get some energy back with the dialysis treatment.
He did have 24 hours of dialysis very soon after heart transplant but he doesn’t remember it. At that point, it helped his kidneys and was able to discontinue the treatment. We are praying that will happen again. Otherwise, he could be on dialysis 3 times a week for 2-3 hours per treatment.
Mike is understandably depressed and discouraged and mad. Where is that Easy button when he so deserves it? As always, continued prayers and encouragement are certainly appreciated (and needed)!
Mike Negotiated a Discharge Today (actually, we think he just wore them down)
While we are still doing the happy dance about Michael not being in heart rejection, it has been a rollercoaster (again, still) since last Thursday after the initial appointment with the new kidney doctor. She wanted to do a wait-and-see approach for a month to give his sluggish, mad, stubborn kidneys a chance to start working better on their own and then if they didn’t, start on the “renal replacement therapy” (dialysis and transplant).
The kidney doctors in the hospital, who are actually part of the same office as his kidney doctor, said that sounded like a reasonable plan but also said they would all be putting their heads together as a team and in collaboration with the heart transplant team to come up with a plan for his kidney issues. His creatinine today was 4.67 and yesterday was 4.77 (normal 0.9) which is in the right direction but not much change. When Michael begged to get out of the hospital now, they agreed to monitor him as an outpatient, which means appointments and lab draws nearly every day. If they don’t get going on their own or his creatinine goes higher, it is likely he will start dialysis. We learned just before discharge that dialysis could last 6 months and in some cases, patients do get better and can go off dialysis with no transplant. More often than not though, once patients are on dialysis they stay on it until transplant.
They have a concern that considering kidney transplant before he’s one full year out from heart transplant is just not a good idea but will have to just see what the kidneys do. At a certain point they would have to go forward with transplant prior to the one year mark if the kidneys continued to spiral downward. So, after all that, we just don’t know the course his kidneys will take.
Mike was told in early September he can’t work, even part-time, for 6 months (March-ish) which was really discouraging. And now he’s facing a possibility of dialysis and kidney transplant sometime between now up to the May 2017 date, so it's likely he can't work for even longer. He’s got another long haul ahead.
Mike is very happy to be home even though he’s get a really bad headache right now, but he’s taking some pain meds now we hope he will rally. The bad headaches were being blamed on Prednisone and one of his anti-rejection meds, Tacrolimus (Tac), but mostly the steroids. Now they have switched him from the Tac to a different medication, saying he’s on such a low dose of Prednisone now that they think the Tac is the culprit. It will likely take about 5 days for it to do its thing, so we’re hopeful he will get some relief soon. It is even easier on the kidneys to filter so everyone was all for trying to see if it works and if his headaches go away. That would be amazing. He’s had these awful headaches since his transplant in May.
Really praying it works and he can move forward with all the other ridiculously hard stuff without the blankety-blank headaches!
Quite the update, right?!? Go, Mike!!