A new journey begins...

On Thursday afternoon I’m going to start in patient rehab at a skilled nursing facility, at
Spruce Manor Nursing & Rehabilitation
220 South 4th Avenue and Spruce Street
West Reading, PA 19611
Phone (610) 374-5175
http://www.extendicareus.com/sprucemanor/

I’m encouraged, but nervous too. Nervous mostly because it’s so far away from family and friends and I’m not sure exactly what to expect. However, I’m also encouraged because it seems like they will really be able to help me a lot and meet so many of the needs I have all at once rather than the hospital which only does short term fixes based on the problem you are having at the time. It’s been a long time coming. I’ve fallen a lot and surprised I haven’t broken anything yet. In January I hit the ground hard in Target, in June it was Giant, and in the Salvation Army once my whole body went stiff (paralysis), but fortunately I was holding on to the cart and it passed before I collapsed. Lately, I’ve had to go back to using scooters in stores in order to shop. I usually need my walker when I am out, but unfortunately don’t have access to it as it is in the attic and we can’t get up there! So, I’ve just been careful and holding on to things. I‘ve fallen at home quite a bit. I’ve also been close a lot, and stairs have become almost impossible. I rarely go upstairs anymore because it is just way too tough. I Have soooooo much body pain, stiffness, and temporary paralysis sometimes. Those may be medical conditions (the paralysis especially) that can’t be helped by rehab, but I imagine the pain and stiffness can be improved with better nutrition and some good rehab. If you don’t remember, Dr. Kareem told me over a year ago that I am now in a palliative state in my life which, in this instance, means learning how to live with my conditions as normally as possible because he knows I will never be cured or well enough to live a normal life. I’ve tried on my own by increasing life activities and stuff to be “normal” but the fact is, my medical conditions just keep bringing me down and over time I have gotten into a state where I have days I feel like I did pre-transplant and can’t even get out of bed and I do NOT want to go there. I want to nip this before I get that bad off again.

This facility I am going to may be far, but I think it is worth it. I am quite impressed with how careful they are being, from reading the info on their site, and in speaking with the admissions director there. This is what they can/will provide for me:
-Physical rehab- getting me walking better so I don’t fall or wobble so much, getting upper body strength improved, overall rehab…just feeling physically stronger all over. Right now I tire out so easily that I have trouble showering, getting dressed, and get up as little as possible because it takes so much energy. That’s a bad spiral because the less I do, the worse it makes that. However, I have still been getting out occasionally to do some things which has been good, but I’ve also had to cut back on a lot of things I love so much (like working in the wheelhouse, social activities, etc) because I just don’t have the strength.
-nutrition therapy/digestive care- tube feedings still, but also can have a dietitian involved to help me work on some sensible diet, if possible (I want to try to retrain my gut and see if I can get more down), and at least be involved in perhaps helping me work through some of the digestive issues. I want to see if possible we can work on speeding up my tube feeds so I can get them just overnight and balance it out with better eating.
-pain management- I have SSSOOO much pain and stiffness all the time in my body. They can, hopefully, help me figure out the right medication protocol and with the rehab on top of that, perhaps I won’t have such a tough winter with pain issues which often keep me in bed
-better independent living- I have trouble so much now with taking care of my own space…even the simplest tasks are so challenging and tiring for me that I tend to let things pile up and don’t do well getting my laundry done. I hate it. Their ultimate goal is to get people in shape so they can go home and be independent and care for themselves.

When I go in on Thursday, I will meet with someone who will talk to me about my individual goals and set a plan of care. I’ll discuss what I need and where I want to be to come back home and be able to function more normally and independently. I’m excited about the possibility of getting things under better control overall. If they can help me get stronger, get pain under control, and get me better nutrition, whether through tube feeds increased or a combo of eating and tube feeds, then hopefully I can maintain the strength I get back through rehab once I leave. I’ve done outpatient PT unsuccessfully before because the other issues weren’t addressed too. It usually helped short term, but in the end I just lost it all.

They are able to provide me with all of my meds (I sent them a list), my tube feeds, an uncommon one they said, and all other things I need. They are giving me a semi-private room, but blocking the other bed so I won’t have a roommate since they are worried about immune-suppression issues and all tx rooms at UPMC are private, in the ER I have to be in an isolated section, etc. So, that helps that I won’t be on someone else’s schedule too. They also work around your typical schedule, so if I feel better in the afternoon than mornings or evenings, they will work the care schedule around that. That’s good because I will do much better in rehab if they get me at my peak “well” time of day. Everything will be completely covered by Medicare and Medicaid they told me, so the financial aspect isn’t going to be a problem.

It looks like a nice place with a gazebo, fish pond, and a lot of activities…a rec room with air hockey (I love air hockey), pool table, and other games. Activities like cartoon art and some other things. The rooms look nice and not so hospital like. They encourage you to bring your own stuff to kind of personalize your room and make it feel homey…so Steelers gear packed! I am hoping to meet some other young adults and make some friends while I am there so it will make it easier to deal with.

I don’t know about internet access yet…I am calling in the morning to ask a few questions, but at least I have iPhone and can stay connected that way. I’ll also take some G-PACT work I need/want to do that I can do offline if I don’t have wifi access…I imagine these days most places do…but it may be something I’d have to pay for myself. I have to take my own TV, according to their website, unless that’s just for long term care patients and I’ll probably take my Wii to play Super Paper Mario and games like that I can, not like baseball, although maybe with rehab I will be able to play baseball on it eventually!

So, anyway, that’s the scoop. Please just pray for me that I will adjust easily, it will be successful, and things will go smoothly. Last week I was absolutely terrified about doing this because I have heard some scary things about Medicare/Medicaid SNF’s, but I feel so much better about the situation now. I don’t know why I ever question that God will provide for all my needs…He always has and I know He’s in control.

I’m totally going to miss my life and routine, my friends, family, and others, but hopefully this will help so I can be even more active once I am out. I don’t know how long I’ll be there, but I will stay until I’m ready to come home in good shape. Hopefully, I will be able to keep in touch pretty easily! Please call and text me (if u have my number), e-mail I can also get on my iPhone (preferably my hastonc@g-pact.org account because I have problems with bluelightning on my phone), or FB message me, but hopefully I will wifi access too. I’ll want the correspondence!!

Love and thanks to all for being supportive through this process. My doctor thinks worth a try and I can’t help but think it will help me out so much for the long-term.