Current total raised and pledged, not including food: $3664.46. Almost 3/4 of the amount needed. Only $1335.54 to go!
Update: Tonya's out of the only foods her severely autistic daughter A will eat and has no money to get any now. It's the end of the month, and all too many of us know exactly how that tune goes complete with full orchestration by Leonard Bernstein. Please pitch in whatever you can for food, too. I don't have an exact amount needed for this yet, but I'll post it as soon as I do. We need to raise $100, and it needs to go via Western Union to the Kroger store in Richmond, Kentucky. Thank you.
Our fellow Kossack Tonya (tonyahky), a longtime member of our community, needs our help. She's in a potentially life-threatening situation that will require major abdominal surgery. For the long form about her family situation, please see my beloved sister Aji's diary of Monday; it explains it all, in detail.
Aji's the one who made this issue known, and if she asks me for help, as she did, I'm going to help, no questions asked. I take it for granted that she's checked out the situation, and indeed she had. If you're able to write a diary to continue this fundraiser, please volunteer by KosMailing Aji. We are determined to get her the whole $5000 that she will need. We're currently over halfway there.
Tonya is a now-single mom of four kids. Three of them, the three oldest, are on the autism spectrum. M, her youngest, is free of autism, which runs in Tonya's family. One of them, the next to youngest kid, is a boy who's fascinated by space and space technology, and is already working on that as a hobbyist. He's got Aspergers and is laser-focused on this interest most of the time. One of them, the oldest, is now a proud high school graduate and she's college-bound to a local college. And there's 16-year-old A, her next to oldest, who is far onto the severe side of the autism spectrum. She functions on the level of a three year old although she's 16 and, in her mother's words, is built like a tank. For the details of the stresses and issues Tonya faces daily in caring for her, see Aji's diary.
I want to talk about something else. To get the immense (6"-7") fibroid and her uterus removed, hopefully while saving her ovaries, Tonya's going to have to undergo major abdominal surgery, and since I had major abdominal surgery in a nearby part of my abdomen when I got my kidney transplant, I have some idea what the recovery from it is like. It is that which I want to discuss here, to let you know what Tonya's facing during recovery and what she will and won't be able to do.
Over the jump, read what it's like to recover from major abdominal surgery, and then find out how you can help. If you want to skip the lengthy details and get right to the donation part, you can do so in the paragraph immediately below.
Please note: Tonya's health problems have destroyed her finances; she no longer has a bank account. One Kossack, weck, has stepped up to do the physical collection of funds for her via PayPal. When the donations are complete, weck will turn the funds into a wire transfer and send it to her via Western Union. Kossack Charles CurtisStanley (my husband) has agreed to take care of bundling for anyone who needs to pay by check. You can make a check payable to him - just put a hyphen between Curtis and Stanley - with funds designated for Tonya; he will cash them all and turn them into a USPS money order or Western Union payment sent to Tonya so that she only needs to make one stop to access the funds. Kosmail me for the address and my phone number, should you wish to verify it. You can donate via PayPal here: weckworth [at] earthlink [dot] net. Even if you don't normally do PayPal, please consider making an exception for this situation; the good you will do will vastly outweigh the bad (and you don't need a PayPal account of your own to send money that way). If you absolutely cannot bring yourself to contribute that way, Kosmail me for my address for sending a check or money order.
PLEASE NOTE: However you choose to donate, please include a notation on the PayPal entry form or an enclosure with the check/money order to the following effect:
This is a charitable donation for the medical care of the family of Tonya Harris.
This is essential; under her state's framework, she can accept charitable donations for medical expenses without it affecting her ability to get the surgery, but she must be able to provide some form of receipt to that effect for each donation.
Please also note: If you send funds by Western Union, you will most likely need to provide your name, address, phone number, and the transaction number before WU will release the funds to her. We have her phone number if anyone needs it.
Tonya needs our help. She is having surgery to remove a large uterine fibroid and hysterectomy that doctors will then biopsy for cancer. She will need weeks to recover, and during that recovery, she needs a personal assistant for her daughter, who is severely disabled. Our fundraiser is to get the money needed to pay for that personal assistant.
Please help Tonya by donating in one of the following three ways:
1. PayPal: weckworth [at] earthlink [dot] net.
2. Personal checks can be written out to Kossack Charles CurtisStanley (Kitsap River's husband and Aji's brother). Kosmail Aji or Kitsap River for the address and Kitsap River's phone number, should you wish to verify it.
3. Sending money orders via the U.S. Postal Service and Western Union, because many check-cashing outlets apparently won't cash personal checks (in addition to the problem of their outrageous fees). Kossack jpmassar tells Aji that after checking rates, the USPS ones have much lower fees. Kosmail Aji for Tonya's snail-mail address.
Please note: If you send funds by Western Union, you will most likely need to provide your name, address, phone number, and the transaction number before WU will release the funds to her. We have her phone number if anyone needs it.
However you donate, please include the following notation as she needs a receipt for charitable donations to maintain her ability to get the surgery:
This is a charitable donation for the medical care of the family of Tonya Harris.
All right, let's get down to what Tonya is facing, and the sorts of limitations Tonya will deal with once she gets this potentially life-saving, and definitely life-improving, surgery done and gets out of the hospital.
Unless they can do this laparoscopically, which I doubt given the size of the fibroid she needs removed and some of the things she's communicated to Aji, she's going to have a big incision. She's having something taken out that is considerably larger than the large adult man's kidney that was put into me, and my transplant left me with a 7" incision scar. She's having a hysterectomy along with the fibroid removal, and if she has to have open surgery, that's going to mean that her incision will, my guess, be a long one lateral along her lower abdomen rather than diagonal from near the right size down to the center at the lowest part of the abdomen like mine is. A diagonal scar is easier to deal with than a lateral one. It doesn't get jostled by movement, any movement, as much as a lateral one. And there are several big differences that Tonya will experience compared to me:
1. She'll be in more pain. A lateral incision hurts more than a diagonal one; I've had both in my abdomen, one to implant Bimaaji the kidney and the other, a 2" incision, to implant a dialysis catheter. Size disregarded - because a big incision hurts more than a smaller one - inch for inch, a lateral incision hurts more.
2. She'll probably be in the hospital a shorter time than the 8 days I was allowed to recover in the hospital before being sent home. She's on Medicaid, if I remember correctly, and Medicaid patients, while they do get treated, often don't get treated for as long as private insurance and/or Medicare patients (I was both).
3. I don't have kids. I was not single. I had five dogs, two cats, and a husband to take care of all of them. Tonya has four kids, the oldest just starting college, three of them disabled to one degree or another, and at this point, no husband to help.
4. Aji came to stay with us for five weeks and help me out while I was recovering; she arrived the day I got out of the hospital. She was able to help with the myriad things I couldn't do during my recovery. The person Tonya needs to hire will have to spend almost all her time caring for A and won't have nearly as much time to help with these sorts of things. And another thing Aji did for me that I needed badly: she was there, as a person I could talk with and otherwise socialize with, during a time when I couldn't get out except to go to the doctors' appointments I had. The caregiver that Tonya will hire won't have much time or availability for that either, given A's sensitivity to noise, need for routine, and overall care needs.
5. Recovering from something you wanted badly and having the joy of getting to know what it's like, again, to be off dialysis is NOTHING like waiting to find out what's next, at least somewhat in fear of what the future may hold. It's a pleasure to recover from getting a kidney transplant, pain or no pain, restrictions or no restrictions, because getting a kidney is such a delight. It's surgery you want and look forward to with anticipation and hope. That's not what Tonya's going to go through. She's got to wait post-surgery for the biopsy data to come back, meanwhile hoping and praying, if she is a praying woman, that the future doesn't hold cancer and treatment for that. The joy of getting a kidney helps mitigate the pain of recovery, and the fear of what may come next helps exacerbate that pain. I felt that exacerbation when I was recovering from getting my dialysis catheter implanted, fearing the experience of dialysis no matter how much I knew I needed it and looked forward to the hope of having better days than I was. I think, based on my experience, that Tonya may feel the exacerbation, and that lengthens recovery.
In the hospital, she'll have to learn, almost all over again, how to move and turn herself when her abdominal muscles aren't available to her. She'll learn to turn herself using her arms, to sit up grimacing with horrendous pain, to move as little as possible in ways that bring pain, and most of them do.
Some readers may remember that I was back online in my transplant-liveblog kidney diary a couple of hours after I got back from the recovery room and wonder how much pain I could have been in when I was cheerily chatting in the diary. Let me point out one important thing: I. Was. Still. Numbed. the day of the transplant. I couldn't feel it. And in the days following, I was on heavy-duty pain medication, which was about half what I needed according to the pain specialist who came in several days later, so when the nurses weren't looking, I'd supplement as needed, very very carefully, with my outside-hospital prescribed pain medication that Charles was holding for me. Believe me, the aftermath of major abdominal surgery hurts like mad.
And then there are the limitations she'll be facing during recovery, which are pretty extreme at first and only get better with time and with no complications:
She's going to be limited in such things as walking down the stairs, if she has any stairs. She's going to be limited to walking on flat surfaces for a couple of weeks, at the least, because walking down and up stairs stretches your abdomen in ways that can dangerously stress stitches or the sort of glue-like stuff they paint on your abdomen to keep the incision closed in some hospitals.
She may have a drain or drains still in place when she leaves the hospital. Abdominal surgery can involve a lot of fluid continuing to drain out of the body for a while. Something called a leukocele can be created, at least during kidney transplant surgery; it's not a frequent thing but it's not uncommon, either, and leukoceles can take weeks to finish draining. I don't know if they are sometimes created during the sort of open abdominal surgery Tonya will have, but they may well be. Drains need to be managed. The fluid drains into a bulb which you have attached to you with tubing, and you need to tote the damn thing around somehow and empty it every so often, depending on how fast it's filling up. The need to empty it can be as infrequent as every few days (in which case it's time to remove the drain, cause for rejoicing) and as frequent as several times an hour (in which case the medical team gave me a bigger bulb to tote). You wear the bulb at your waist as best you can, and you need to have it accessible to empty it, so you can't really tape it up. Besides, you don't want to put tape anywhere near your incision to interfere with whatever it is that they closed it with, so you plan on wearing pants or at the least, pajama pants, and deal with the fact that those drains can leak. That ruined a section of one of my leather belts, in fact. Can you tell I hate drains? Tonya's a nurse; she'll probably hate them worse than I did, since she's had to deal with them before and knows what's coming if she sees one attached to her.
She's going to be limited in the amount of being up and around that she can handle, and at first, she's going to be stuck in bed. Not just in the hospital, but at home. She's going to be able to get up and go to the bathroom and that's about it, and even that will hurt like hell. Turning over will hurt like hell. Moving position in bed will hurt like hell.
At first, she won't be able to carry anything, and I do mean anything, except something like a few pieces of paper. She won't be able to carry a purse - Aji had to carry mine. She won't be able to pick up a cat, unless it's a little kitten. There's no way she'll be able to pick up a bag of groceries, a basket from a food pantry, or a pan full of food for her family. She'll have to leave the pan sitting on the stove and dish up with a serving utensil. She may well not be able to do the dishes, depending on what kind(s) of pots and pans she has: cast iron or the heavy stainless steel I have in a size that can cook dinner for a family like hers will be things she can't pick up, even to wash. She may well wind up standing and washing them where they are on the stove. My initial lift limit after I got out of the hospital was about zero. After a week, it increased to five pounds.
Another thing she won't be able to do is drive, and she will have to get herself to and from doctors' appointments to check on her progress without being able to drive herself there. Aji drove me for weeks to twice-a-week appointments in Seattle, a 67-mile one way drive; although we usually took the ferry, there's still a fair amount of driving involved, none of which I could do for myself. Tonya may not have someone who can drive her to and from appointments. She may need to find other ways of getting there, and at first, any movement jostles and is painful, and any other way is going to cost. She's a remarkably strong woman, but I hope this person she will hire can drive her as well as caring for her daughter to minimize her pain. There may not be much in the way of public transportation available to her, as there isn't, on my side of the water, to me.
As time goes on, assuming that she heals quickly and without any complications, the pain will lessen. She'll get a lift restriction of maybe fifteen pounds after she's been out of the hospital two and a half to three weeks, if all goes well. That's enough to pick up my purse but still not enough to pick up a heavy pot full of liquid. It's not enough to pick up our cat Tom, who is large and solidly muscled. It's not enough to be able to restrict her daughter with her arms when she is voice stimming (see Aji's diary) and trying to hit herself, and she still won't be back to her full amount of energy, although it will be starting to come back bit by bit. The two-inch lateral incision I received when I had my dialysis catheter placed took two solid weeks of healing before I could convince myself to do more than get out of bed to "go", and another two weeks of pain while I forced myself to do what I needed to do around the house, conserving my energy as much as I could. And that was a small incision compared to the one Tonya's coming home with. Now, I'll be the first person to admit I have a very low tolerance for pain. Nonetheless, anybody's going to hurt with a big lateral incision, and no matter how strong Tonya is, she's still going to feel it.
At two and a half to three weeks you can do some more. You can walk around without pain to a greater extent. You can go up and down the stairs. You can carry your own purse or manbag. You can pick up small or lightweight objects, even if they're on the floor (though that will hurt a fair amount). You can go get the mail, even with the mailbox at the street and the house way up here on the hill. You still can't drive. You can probably pick those empty pots and pans off the stove and put them into the sink, but you can't necessarily pick them up if they're full of water or other liquid. You still may wind up having to serve foods only with utensils instead of picking up the pan and scooping some out. You still may have trouble with that bag of groceries or basket from the food bank, depending on what's in it and how much it weighs, and before you pick it up, you're going to have to find out, because you can get a serious abdominal hernia if you exceed your weight limit.
They finally let me drive after I'd been out of the hospital four weeks, which means over five weeks of actual recovery time post-surgery. At that, it was considered fast; I'd initially been told I couldn't drive for six to eight weeks, and Tonya may be in the same situation. She may have a neighbor or friend who can help her with her transportation needs, and she may be able to recover quickly enough to be allowed to drive sooner. One of the things that determines when you can drive is how much pain medication you need and when you need to take it. When you can truthfully tell the medical team that you're not going to need it until you're done driving for the day, if at all, that's when they'll tell you that you can drive.
Her abdominal tone may be reduced or even gone. I can't compare this to my own experience well, because my dialysis situation had left me with little abdominal muscle tone, but the incision worsened it. There are few ways they can insert or remove something that large without cutting some muscle unless it can be done laparoscopically, and it takes time and exercise for that to heal and a long time for the patient's muscle tone to be restored to its former state.
Again assuming all has gone well and her healing is proceeding apace, at about four and a half to six weeks, she'll be told she now has a weight restriction of twenty-five pounds or so, if my experience is any guide. This will allow her to pick up the pots and pans with relative ease, although a big one full of liquid may still not be something she can tackle. If her house has wood heat, she won't be able to bring in a basket of firewood yet. However, much of her initial healing will have happened, and things will hopefully only get better from there.
We are raising enough money to allow her to hire someone to be a care resource for her daughter A while Tonya is going through all these healing processes. Hopefully this person will also be able to help, especially initially, with some of the home tasks Tonya will have to let go of for a few weeks, but the first concern is her disabled daughter. You can see why hiring this person is vital.
Thank you.
Please help Tonya by donating in one of the following three ways:
1. PayPal: weckworth [at] earthlink [dot] net.
2. Personal checks can be written out to Kossack Charles CurtisStanley (Kitsap River's husband and Aji's brother). Kosmail Aji or Kitsap River for the address and Kitsap River's phone number, should you wish to verify it.
3. Sending money orders via the U.S. Postal Service and Western Union, because many check-cashing outlets apparently won't cash personal checks (in addition to the problem of their outrageous fees). Kossack jpmassar tells Aji that after checking rates, the USPS ones have much lower fees. Kosmail Aji for Tonya's snail-mail address.
Please note: If you send funds by Western Union, you will most likely need to provide your name, address, phone number, and the transaction number before WU will release the funds to her. We have her phone number if anyone needs it.
However you donate, please include the following notation as she needs a receipt for charitable donations to maintain her ability to get the surgery:
This is a charitable donation for the medical care of the family of Tonya Harris.
