Howard's Journey

28/11/2023

Happy Holidays everyone!!
Dad is doing great! I know it’s been a long time since I’ve posted anything, but we were able to have family pictures while my brother and his family were here visiting. This was something I just wasn’t sure we would ever be able to capture, and another reason to be so thankful to our donor! I just wanted to share some photos and wish everyone a very Merry Christmas and a Happy New Year!

Don’t forget if it’s time to renew your license, become a donor

25/08/2022

These are the moments we didn't know if we would ever see again! Anyone that knows Dad know that sports are life! He's made it to the last two games of Angie's (his granddaughter) in person! And tonight even wore his new leg and sported his cane made by his long time friend Mark!

17/06/2022

Hey everyone!!

Dad is doing great! His labs are looking fantastic! He is looking forward to seeing Top Gun with Mom. They are enjoying having a pretty great degree of normalcy in their lives afterthe roller coaster year, well really years they have been through with dad's health. No real update more than that.

I just wanted to take the time to invite you guys to join the team I created to repay Dad's "blood bank debt".

As you all know, Dad received approximately 60 units of blood products during his transplant surgery. I have made it my personal mission to replenish what he used. Both to honor his liver and blood donors and to allow someone else and/or their family the lifesaving treatment.

I'm a measly 3 units in today, but I've got lots of life left to make up the balance. You can donate whole blood every 8 weeks and platelets (which take a little longer, but are impairitive) every 7 days.

Please please consider donating. American red cross makes it so easy. I go on my lunch break to donate. It takes more time to sit in the "canteen" and have your post donation snack then it does to complete the actual donation.

I'm sure I sound like a broken record. But, I'm okay with that. If I can help one family have even a fraction of the time or gift we have been afforded, I will make it my mission to do so.

So, all who have donated or consider donating, please join Dads team I created through the American Red Cross App. Join my team, Howard's Team, on the and help the American Red Cross save even more lives. https://redcrossblood.app.link/jointeam/63770

The American Red Cross Blood Donor App puts the power to save lives in the palm of your hand. Donating blood, platelets and AB Plasma is now easier than ever.

11/06/2022

Today marks the one year liverversary!

We are forever grateful for a family who chose to turn their tragedy into the gift of life for so many.

Remember to donate blood if you are able and consider being a donor when it's your time

Thank you all for your love and support throughout this process and going forward.

22/04/2022

The last two days Mom and Dad have had a wonderful time visiting with their friends of many many years. (Pretty sure Dad and Mark date back to elementary school) and Mom and Sandy sometime in the early 1980s. It was so good to see them all together enjoying each other's company.

12/12/2021

Celebrating Kaysen's second birthday today! Papa and Kayse were too busy for a full smile.

09/12/2021

Hello everyone,

I know there has not been an update in a while. The truth is no news has been good news.

Since coming home from his last procedure dad has been thriving. Still some ups and downs with his potassium and white blood cell counts (both by products of the anti-rejection meds), but overall doing wonderfully!

He has gained significant amounts of weight and has been enjoying time with mom, his kids, and grandkids. Last weekend we had Grammy ( Dad's mom Marion) and his three sisters, along with their husband's, down for our family get together for the holidays. It was fantastic! These were the days, I wasn't sure we would ever have again ( because of dad's liver disease, his complications, and of course the pandemic), making them so extra special.

I'll post some pictures as I remember to take them and keep updating.

But for now, thank you all for caring about and loving my dad. You served as an extra support system for him, even if it was only through Facebook. We all needed all the extra strength we could get.

Happy holidays!!

For Christmas I ask one thing of you all, that you all consider making yourself a donor. Whether it be blood, bone marrow, tissue, plasma, or organ donation. You don't need these things once you leave this earth, and you can leave such an amazing gift and legacy! You can be a hero and drastically change so many people and their families lives.

We are forever grateful to our donor.

09/10/2021

Dad is home!! Exhausted, but home!! Without a feeding tube and on a full liquid diet for 2 weeks. His first "meal" was an A&W rootbeer float!

Thank you for all the positive vibes, thoughts and prayers!

08/10/2021

Have not gotten official word from a doctor yet.

BUT.. .

The xray report is out and there is "no extravasation noted" on the GI swallow study. AKA NO LEAK!!!!!!!!!!!!

08/10/2021

Mom got word about 930 that dad is out of the procedure. The surgeon told her that they couldn't even see a hole large enough to put a suture in! To be on the safe side they replaced the feeding tube (we've had trouble with it the last 5 to 6 days) and are going to be doing a swallow study today before they send him home, just to ensure there isn't a microscopic leak.

If no leak he can likely eat. If a small leak, a few more weeks of what we are doing.

Will update again once I know. So far very good news!!

07/10/2021

Good afternoon every, it's been a while.

Just wanted to update. Tomorrow Dad goes to UCSF for the repeat Endoscopy to see how the Stent is doing. We are very hopeful for healing. Again I will remind you he has not eaten since August 10th. I can hardly wrap my head around that almost 2 full months.

The procedure is planned as an outpatient same day surgery. But there is a chance he may be admitted. Cooper, will be taking him, since I'm 2 weeks into a new job and couldn't get the time off of work.

I will update when I know something tomorrow. Until then nothing but positive thoughts for healing.

18/09/2021

Pa is home!!! We return October 8th for the next endoscopy. Hoping like heck we can avoid the hospital until then!

16/09/2021

We didn't get good news today. Essentially no healing in the perforation. Realistically estimating 8 more weeks of the same therapy we have been doing. Repeat study in a month.

Dad is discouraged. So hard to see this. He is the strongest person I know.

The surgeon will visit tomorrow to discuss things. Dad could use all the supportive encouragement he can get right now. He promises he won't give up, and I know he won't, but he does have bad days, and understandably this is one of them.

15/09/2021

Here visiting with Dad today. They just took him downtown to Interventional Radiology to repeat his swallow study. This will evaluate whether or not he still has a leak (🤞not) and the size, if still there. Please think good thoughts!!

On a positive note his repeat chest x ray looked very good after his chest tube placement yesterday. They were able to convert him from low wall suction to water seal. So going in the right direction. Hopeful that if the x ray continues to look good tomorrow we may be able to discuss removing in the next couple of days.

14/09/2021

So after 2 days of really feeling like things were headed in the right direction, dad's PICC line stopped working this morning.

The PICC line is a super long IV( central line) that goes from his upper arm (bicep) all the way through a vessel and rests in the heart. This is where we have been giving all dad's IV antibiotics.

Well to evaluate the PICC line this morning they did a chest xray, which is standard protocol. Unfortunately, while walking in the halls this morning, he was stopped by the nurse practitioner and told he needed to go back to his room and be put on oxygen. They found a pneumothorax, air in the lung space, but outside of the lung. This puts pressure on the lung and doesn't allow the lung to expand, you may have heard of a collapsed lung.

I asked if they feel like this is free air leaking from the bowel, meaning that they feel there is still a large leak from the bowel. They do not feel like this is the case, but rather that it occurred during the procedure to repair the leak (sometimes they have to use air during the procedure).

Now Dad has to have a chest tube placed by interventional radiology today. The tube will sit in the plueral space (space between the lung and the chest wall) and will drain the air. This usually takes around 4 days. So his discharge is pushed back, yet again. And to add insult to injury, it's super super uncomfortable.

If there is a silver lining, they found it. Because he was up walking around and completely asymptomatic, but it could cause serious complications.

All of us are feeling quite a bit defeated today, Dad included. We really felt we were headed in the right direction. Seems we can't catch a break at all, and Dad finds a way to get every complication under the sun.

11/09/2021

Dad made it out of the procedure with flying colors this morning. The team feels like the procedure went very well and are quite hopeful for healing. He will likely be in the hospital for about 5 days, so they can repeat an imaging study then. Plus potentially replacing the drain externally that they had to remove to get what they needed done today.

Dad is in good spirits and feeling well. Just a but bummed about having to watch the first 49er game of the season "in the hospital ". He would much rather enjoy the 70" screen at home with his NFL ticket.

10/09/2021

Dad is having a procedure today. His transplant surgeon that was on yesterday is brilliant and actually founded the living donor program at UCSF. If dad hasn't told you about her, which I find hard to believe, and your interested their is Netflix documentary called the surgeons cut and she is on one of the episodes.

Anyway, the important part, the general/bariatric/ unknown what other super human specialized surgeon came to see Dad bright and early about 630 to tell him she had a plan. He us having an Endoscopy to place stents and internal drains (referred to as pig tail drains) into the leak. If you are a health literature fan like myself, I know not lots of us, this procedure is called an EDEN (Endoscopic internal drainage with enteral nutrition). It's a revolutionary procedure and something that isn't done in many patients ( #1 because most patients heal with the therapy of gut rest that dad has been doing, #2 it is extremely specialized, #3 it only started in 2014 (which is quite new by medical standards). So once again, Dad proves he's extra special and is a medical anomaly. Lol.

So what does this mean for how life looks after the procedure? Essentially nothing for at least 2 week. He will have the tube feeding still and the drains will still be in place. But, at 2 weeks he will go for a repeat study, if there is healing they will allow him to start to eat some. Overall, the results for complete healing and back to normal life are like 4 to 6 weeks. But that's better than the rate of progress of potentially one year we were going at. Today marks one month since Dad has eaten, while my waistline could probably afford that, I cannot fathom it. He is amazingly strong and continues to inspire me.

I will update as soon as I know he is out of procedure. Please send all healing vibes, thoughts, and prayers!!

10/09/2021

After a long day of getting absolutely nowhere with Dad' nurse on the phone, I finally was able to talk to the NP this afternoon.

Basically we are at a stand still until at least tomorrow. The transplant surgeon on has consulted general surgery to see if instead of doing a big open surgery to try and patch the tear, there may be a possibility to place a Stent to bypass the bowel perforation. The general surgeon is supposed to come by tomorrow to ascertain whether thhis is a possibility and how risky it might be. The positive is that the Stent would be placed during an endoscopy, which doesn't mean it comes without risk, but it's far less risky than a big open surgery. And, if it works Dad might be able to start eating.

Looks like either way he will be in SF for a few days and likely through the weekend. If the Stent isn't an option they will replace the tube for feeding and then verify the drain dad has is draining well and doesn't need to have any adjustments and send him home. The only thing is certain departments don't work on the weekends so we may or may not get things done for a discharge prior to Monday.

Dad is bummed to be back in the hospital, as are we all. But once again is pushing through.