Greetings everyone,
Our last update reported on Nate’s PD and getting home dialysis going. That was long awaited for and now we are adjusting to Nate’s new “life”. Every night Nate “hooks up” to a machine that pumps a special fluid into his peritoneum (basically his abdomen) and pumps it back out after it has absorbed all the impurities in his blood. This cycles through several times (lasting approx 9 hours) in a night and the plan is he awakes full of vigor but no vim J. Well, this has been an adjustment, as stated, and we are hoping he gets used to the process so that he can experience a full night’s sleep… this has yet to happen on a regular basis…. And by the grace of God, life goes on!
This last week, Nate passed another milestone in his life with renal failure and that was getting his hemodyalisis tube (in his chest-a catheter going under his skin and into a vein near his heart) removed. This was quite a process as it had been in since the initial emergency room visit in January. You will have to have Katy or Nate tell you the whole story, thankfully I was not there. It involved quite a “yank” from the doctor and a bit of spattering that I will not go into any further. If you have a stomach for it, Nate fished around the trash when the doctor left and took a picture of the tube as the only souvenir he was allowed (the picture is at the end of this email-warning, not for the faint hearted)… he could not bring it home… he asked and they said no… (he has to live with the disappointment of not having this tube hanging from his trophy shelf in his bedroom)! Now you should feel free to give Nate a hearty hug and you will not have this plastic knob-like thing pressing into your chest. It has allowed him to shower once again with ease. The doctor was surprised to hear that Nate was told not to shower with it and said that he could have done it, to which Nate replied, “Now you tell me, after I have lost my girlfriend”… (that’s a ha, ha… Nate still has a significant other, Kari, who has hung in there with him through this all).
The latest, and most exciting news is that Nate had his transplant interview at Johns Hopkins on Tuesday. We now have a better idea of what all is involved with that process. It was about a 4-hour meeting with about 6 different people – a social worker, a surgeon’s assistant, a nurse, a research assistant, a kidney specialist, and the surgeon who will perform the operation. They all agree that Nate is an excellent candidate for a transplant (as long as he doesn’t start smoking or drinking, or stops wearing his seatbelt or starts texting while drivingJ). They gave us several booklets explaining various aspects of the procedure like acquiring a donor (no coercion allowed, black market organs definitely not cool), and additional considerations of things not covered by insurance (numerous visits to JHMC and possible overnight stays, non-covered insurance items and medication costs) and how to pay for additional things (like organizations created to assist in “fund raising”). Insurance does pay for the expenses involved in finding, testing, surgery and recovery for a live donor and we were encouraged to start that process as soon as possible. The more potential candidates the better, and there is a web site to refer people to who are interested in that possibility. Furthermore, that person has full control over how involved in the volunteer process he or she wants to be… from just donating to Nathaniel, to offering to donate to someone else who might have a friend/donor that is a match for Nate and essentially “swapping” donors. Hence, even being an “ideal” match for Nate is not an issue if one is just willing to donate. Anyway, the web site deals with all of that and is the place for people to begin (https://johnshopkins.trcareportal.com/ if you register, all you do is provide your email address and create a password… you are then sent a confirmation which allows you to fill out an extensive questionnaire… “ you are not officially registered until you fill out that questionnaire). Furthermore, as extra expenses accumulate for such a procedure, we are considering setting up a “charity” to help with expenses. As we find out more about that, we will pass that on as well.
For such an ordeal, it is amazing how upbeat and positive everyone was at Johns Hopkins. We were told that although a major operation, the success rate is high and the recovery period is fairly brief (4-8 weeks – a little shorter for the donor) relative to other major surgeries. Also, that it could occur as early as this summer which is obviously what Nate would prefer, and we likewise agree.
Thanks again for all your prayers and concerns. God is good, all the time, and we are counting our blessings all along the way! We appreciate so many of you who have shared your own experiences with kidney issues or chronic health issues as you seek to comfort and encourage us. You have shown us that this is not necessarily a comfortable journey, but it is agood journey as we are drawn closer to our God and each other. Keep up the faith!
Shalom,
John
Btw, many of you know our daughter Hannah is now serving in Chaing Mai, Thailand for two years. You can follow her adventure on her blog : www.PurposefulDiscomfort.blogspot.com and if you ever care to become more involved you can check out her web address for donations by going to www.WorldOutreach.org/donatations and select Hannah Bechtold #273
