Update July 2013
Dear Friends,

Many of the expenses of transplant are ongoing and go beyond my Medicare coverage. While our initial fundraising, and your generosity, gave me a buffer that has lasted a couple of years, I now have roughly $300 in the HelpHOPELive -HHL- account (formerly NTAF). I would appreciate your support, suggestions, or passing this appeal on to your networks.

People may contribute directly at my page at the HHL site http://www.helphopelive.org/contribute2/patient_results.cfm/patient/E0F54FD8-C5F5-8B8D-0546303FF41A1F15, or by phone at 800-642-8399, or by check. If contributing by check, make the check payable to HelpHOPELive. In the memo section, please write “In honor of Rowan Wolf” or if you are donating generically to support the organization write HelpHOPELive if that is your intent.

The mailing address is HelpHOPELive, Two Radnor Corporate Center,100 Matsonford Road, Suite 100. Radnor, PA 19087.

All contributions are 100% tax deductible.

If you would like to do a fundraiser on my behalf (or for the organization), please contact Rebecca Carr at HelpHOPELive 800-642-8399.
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OK. Now that we have that piece out of the way…

It was a semi eventful spring and summer thus far. I spent part of April, and all of May in the hospital. Was home on IV antibiotics for six weeks. Then a short two week break and back into the hospital for another week. I have spent so much time in those hospital rooms that I am starting to get just a touch claustrophobic. I am so glad to be home now, and am spending lots of time on our deck in the back yard watching the flowers with the bee’s little butts sticking out as they gather nectar; the squirrels chasing each other up and down the trees; the dogs playing and sleeping, and the birds. In other words, the little things.

My trip into the hospital in April-May was relatively disastrous. I went in with a decent fever and suspected rejection. I ended up with double pneumonia (twice), aspirated medication into my left lung; pleural effusions that required surgery; and multiple allergic events. I seriously wondered if I was going to get out of there alive.
I went through some spells of serious despondency when my lung capacity dropped back to what it was shortly after my transplant (twice!) and I was so weak that just getting to the bathroom and back was a big challenge at times. However, I blew on the “pickle” (a device that causes a vibration in the lungs that is supposed to help get secretions moving), and sucked on the inspirameter (a device to help you increase lung capacity), and improved.

The surgery to drain the pleural effusions scared me as it was general surgery and they were deflating my left lung. It hurt like hell for weeks afterward.

I am not sure we ever eradicated the pneumonia from May/June and that it maybe just came back to bite me in July. Regardless, my “recovery” keeps seeming to stretch out in front of me.

On the positive side, they did not find any rejection with the last bronchoscopy that they did during my last hospitalization. YAY!
I wish I had some brilliant philosophical insight from these experiences, but I don’t really. I just try not to let things keep me down for too long. Regardless of what happens, I try to function at as high a level as I can and keep struggling to build my strength. Repeated bouts of this and that have knocked my legs out from under me almost every time I stood up.
There is not much to do, but to keep getting back up.

Through it all, I am supported by my loved ones, and cross lives with some amazing people. Some of the nurses who have helped me (more than a few who are my former students) have gone above and beyond in watching out for me and helping make my hospital stays more comfortable. My family provides me so much love and support, and that includes the dogs Mossy and Kacey who seem to somehow know just when and how to bring a smile to my face. Kelly, my partner, has been just unbelievable. Through one emergency after another she has been there, and often fighting her own health issues at the same time. I see this as an act of love on Kelly’s part. One of those challenges includes the declining health of her 98 year old mother (who all but adopted me).
I have found my gaze focusing closer. I look at each day and its challenges and accomplishments and sometimes moment to moment. Looking too far on the horizon and making plans just doesn’t seem to be working; nor is it realistic. I am not saying that I see myself dropping dead in the near term, but I am saying that my plans have been rewritten so many times at this point that it seems a waste of time to even contemplate them. That time and energy can be better used in the present. Not to mention I don’t have much spare energy anyway.

I find myself just overflowing with love sometimes. My emotions run close to the surface, and it doesn’t take much to bring me to tears. I am less circumspect than I once was. If there is an issue, I want to deal with it now and directly. If I feel that something needs to be said, I will just say it. I won’t say that any of this is a better way, or an “improvement,” but it has become the way I cope and interact.

The circumstances of my life have changed a lot in the last year. I have had to confront a lot of unpleasant realities and adjust my life and redefine the quality of my life. Relationships have taken a much higher priority over tasks – and that is a big shift for a type A personality. These various shifts have a direct effect on Kelly, but she is still here and I am deeply grateful for that.

I know that my experiences overlap in numerous ways with many of yours. That is part of the reason I share these aspects of my life. I keep finding that as I share, I make connections with others and that is a positive thing all the way around.
I wish all of you smooth waters, though I know that is unlikely. So keep life vests available, and watch out for your crew. We are nothing without them.

Thank you for your continued care and support.
With love,
Rowan
[email protected]

Update November 2012

Hello Fellow Travelers

It’s been a while since I sent out a health update and a lot has happened. I had hoped that I would spend the summer getting my strength back. That is not quite what happened.

In July 2012, I had another bout with embolisms. I was taken off Coumadin and in less than 2 weeks threw several embolisms into both lungs. That was just a shock for all of us. There is no answer as to why. Regardless, it was a setback and I had to go slowly getting back on my feet. I didn’t quite make it past that when I started feeling increasingly crummy. I contacted my pulmonologist and Stanford and let them know that things just didn’t seem to be going very well.

There was an assumption that I was just not feeling better because of the embolisms. However, it was different. In September, they decided to run some tests and do another bronchoscopy. So I went in for the bronch on September 13th. By Saturday I was feeling pretty poorly, and Sunday I called the Stanford transplant fellow who told me to go to the ER. I felt, and she confirmed it was her concern as well, that I was getting to a crisis point.

In the ER they determined that I had pneumonia and put me in the hospital. I started a course of IV antibiotics. Then, I was told that a biopsy taken during the bronch showed that I was in acute rejection so they started IV steroids. The next day, they came in and said that a culture taken during the bronchoscopy came back positive for fungus – later identified as aspergillus. So I was started on an antifungal medication. The next day one of the specialized blood test (DSA or Donor Specific Antibody) taken on September 12th came back showing that I had a high level of antibodies and was in antibody rejection and I was prepped for treatment for that as well.

The treatment for the cellular rejection is to do four days of plasmapharesis, followed by 2 days of IVIG, followed by treatment with rituximab. The plasmapharesis is similar to dialysis. They put a catheter in my neck and hooked me up to a fascinating piece of equipment that takes the blood out of your body, separates out the plasma, and then remixes your blood with albumin and returns it to you. Very weird and a bit creepy to have all of your blood removed from your body and then returned. The process (other than getting the catheter in) doesn’t hurt, and took about 2 hours each time. The purpose is to get rid of the antibodies.

After four days of that, there was to be two days of IVIG or intravenous immunoglobulin. This is to replace the immunoglobulin lost during the plasmapharesis otherwise the antibody production can bounce back even worse than before. I started the first IVIG and about 30 minutes in had a very scary reaction a hot flush followed by losing control of the muscles in my upper body. I started yelling for help and the nurses came running. They got me disconnected and monitored me while I came back to normal. So a discussion ensued between my pulmonologist and Stanford. The word came back that it was critical that I do the IVIG infusions. So they gave me large amounts of steroids and benadryl and we took another run at it. Following completion of the IVIG was I got another infusion with a drug called rituximab. It is a chemotherapy type drug that shows good promise with antibody transplant rejection.

To make a long story short, I spent 19 days in the hospital. I needed another brochoscopy after 2 weeks and once again take cultures and biopsies were taken. These were to show the status of the acute rejection and the fungal infection.
The doctors and Stanford have told me that I am “unique.”

Theoretically it is possible to be in acute and antibody rejection at the same time, but they had not seen it. “Unique” is not where one wants to be in medical matters.

So then I got a call from Stanford on Saturday October 27th which I missed – followed by a call from Kaiser. I was told that the test showed that I was still in acute rejection and needed to check back into the hospital so that they could give me high dose IV antibiotics for several days and restart that protocol. So I checked into the hospital. I came up with diarrhea so they did a sample and found out I had C. Diff an intestinal bacteria and they started me on flagyl to treat that. On Tuesday 10/30 I went home again.

Unfortunately, the high dose steroids threw everything into flux and I was pretty sick. Then on Thursday 11/1 I really started feeling bad. In the course of about 2 hours my lower legs swelled dramatically and turned bright red. They hurt like I had poured boiling water on them. The consensus of Kaiser Advice and the Stanford Fellow was to head back to the ER. So our friend Karen took me to the ER as Kelly was sick. By the time we got there, the swelling and rash was spreading up my legs and my chest hurt. Ultimately, they decided to put me in the hospital – again.

By morning the “rash” (which looks like a second degree burn) was spreading to my trunk and was incredibly painful. It is now November 10, and I am still in the hospital and no one is talking about home. The theory is that I had a bad reaction to the flagyl. They replaced that drug with vancomycin. The spread and intensity of the rash seems to be slowing, but has yet to start to clear. I have been having ongoing problems with pain, nausea, and diarrhea (hence dehydration) and they are juggling medications to try and get everything under control. Everything seems to cause an exaggerated reaction.

My pulmonologist has said we are working with a “Very narrow therapeutic window.” I would say that is an apt description.

This could all get very depressing, but I think there are some bright notes here. Generally, when people have these acute rejection events (even though they aren’t having both kinds), and the fungal colonizations, they have them early within the transplant process. Usually before the first 6 months. Mine started a year out (plus). I am physically much stronger now than I was at 6 months – even with the problems I have had with embolisms. I am not sure that I could have pulled through if all this had happened in the first 6 months.
This last set of events with the reactions are just bizarre.

Apparently no one knows what to make of it, nor how to deal with it within the framework of the transplant. We don’t even know but that it might be another manifestation of rejection in some weird way. Certainly having a transplant impacts how we go about addressing the issue. What it does show is that I have a very reactive process going on.

However, it is also a very strong and energetic response. I don’t know if that is good or bad, but it shows that there is something very lively in my overall body systems. I would take that as a strong sign of life even though it is making living that life pretty hellish at the moment.

Living with this transplant is different than anything I could ever have imagined. At this point, I think it is apparently challenging my medical team to their limits as well. But it is not just the physical challenges, and it is not just my struggle.

Yesterday (I believe it was – life in the hospital is causing me to lose a day here and there), I was surfing through the channels and happened upon Michael J. Fox being interviewed. I got there just in time for him to say (roughly):
“My happiness is in direct proportion to my acceptance, and direct disproportion to my expectations.”

You know, sometimes things just happen. This has been an ongoing battle for me. I have always had very high expectations of myself. I have always pushed my self, and when I reached what I thought was as far as I could go I pushed a bit more. Certainly my expectations of my recovery from the transplant and life with it were very high. Ideally, I would return to the life that had been interrupted. I would be back in the classroom, I would have an active highly physical life. I knew that I would have to be “careful” in some activities and likely give some up, but on the whole I would have my life back and I would redouble my efforts to honor the gift of life that I had been given.

As you all know, that recovery has been far different than those “expectations.” In fact, even managing day to day life has presented ongoing challenges to that rather optimistic vision, and along the way I have had to reduce expectations again and yet again. In fact, one could say that I have had to rewrite the entire scenario of my life and living it over this last summer. I have no idea where I am going or how I am going to get there. What I am learning (again) is that I must release the entire concept of destinations and refocus on the process of my life.
Problematically, but predictably, this is not a journey that affects only myself. It ripples out from me effecting the different relationships in my life in myriad ways. As my ability to participate in the daily maintenance of life chores has decreased (to the point of my absolute absence for over 30 days now) those demands have shifted to Kelly and other family and friends. I see the worry and strain in the eyes of my loved ones, and the concern in the eyes of our four-legged family. There is nothing I can do. It is truly beyond my control. But I am left in awe at the gift of love of which I am the recipient. I can only hope for all of you that you have this gift in your lives, but never have to test the bounds of that love as my circumstances are.

Which brings me to acceptance. When I was fighting for each breath with the pulmonary hypertension, and I did not know from one moment to the next whether I would still be alive, I became very much locked in the moment. Each moment was infused with import. The light, the temperature, the cold nose nudging my hand, or the smell of Kelly’s hair when I gave her a hug – all hung like beads on a necklace. I tried with each task I took on to infuse it with my energy to make what positive change I could in the lives of those around me and to the world.

Then I had the transplant and the focus of energy shifted to healing, and no matter how wavery, there was a horizon again – and the Stanford team talking about how folks went back to their lives. I have since learned that most did not go back to their lives – they retired, and focused on doing things they just enjoyed.

Now, I am trying to re-embrace acceptance. This is where I am right now. This is where I must share what I can, to acknowledge what I can, to let folks know just how much I love and appreciate them … you. While my ability to contribute to the greater good is limited at this point, I cheer on the beauty and effort that each of you put into all of our lives. Your positive thoughts and efforts on our behalf are appreciated, as is your making your lives and the world a better place. I am attempting to embrace this moment and I cherish that you are in it with me.

With all humility I send my love and
thanks,
Rowan

Update 11/4/2011

On October 1, 2011 the transplant team released me to return home. So here I am back in Portland Oregon. It is wonderful to be home with family and our dogs. It is also challenging as everyone works to try and create a safer environment for me to live in, and I try to adjust to the lifestyle changes that the transplant necessitates. Most of my time at this point is spent with medical “stuff” from appointments to rehab activities. Leaves me pretty tired at the end of the day.

I want to thank all of you for your continued loved and support. I can’t tell you how important that is.

Update 8/5/2011
I am ecstatic to let you know that I received a double lung transplant on June 20, 2011. I was in Stanford for their standard three month evaluation when I was hospitalized because of concern over my condition. After being in the hospital for 6 days, I was offered a transplant which I accepted.

I spent an additional three weeks in the hospital, and am now staying in an apartment here in Stanford as I start my recovery and go through the close supervision of the transplant team. My new lungs are recovering well. My last pulmonary function test was 84%. I wish I could say that my adjustment to the drug regimen was equally as positive. Unfortunately, I am struggling in that area, but that is apparently very common. My body feels like it is part of a chemistry experiment – and in a way it is.

I am hoping that my recovery continues smoothly and that we can head home sometime the end of September – beginning of November. I am really homesick and missing my family, friends, and the dogs like crazy.

Thank you for your continued support!
Rowan
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Dear Friends,
I am writing you at this time to ask for your help. Those of you who know me well, know how difficult such an appeal is.

In January 2010 I was struck down by what was thought were pulmonary emboli. This took me out of teaching for the rest of the year. My heart and lungs continued to fail, with each day leaving me weaker than the last until July.

Then a new pulmonologist, Maxine Dexter, went over my case with a fine-toothed comb and determined that I actually had pulmonary arterial hypertension (PAH or PH). This is a rare condition that increases the pressures in the lungs making them unable to function properly. This puts tremendous strain on the heart, and has seriously damaged mine. PH is a progressive and irreversible disease. My doctor started the long process of getting me evaluated for a heart-lung transplant, as this is the only cure for PH. Stanford Hospital has almost approved me and I will soon be on the transplant list. One of the hurdles in my path is being able to financially address the costs of transplant when I will be out of work for many months, and perhaps the rest of my life.

I have been tremendously lucky to have insurance and a job that has allowed me to continue to work part time and blessed to have my partner Kelly and a very supportive family. Transplants are tremendously expensive procedures, and the costs beyond transplant are large and some go on for the rest of one’s life. For example, I will have to go to Stanford at least once a year for follow-up care, and take anti-rejection medications costing in excess of $5000 a month for the rest of my life. Even with my health insurance coverage, it is estimated that I may have over $25,000 in transplant related costs for the first year and over $10,000 for every year thereafter.

To help alleviate the financial burden of transplantation, a fundraising campaign has been established in my honor with HelpHOPELive (formerly NTAF) for my uninsured medical expenses. HelpHOPELive is a nonprofit organization that has been providing assistance to the transplant community for nearly 30 years. Your tax-deductible contribution is greatly appreciated.

To make a credit card contribution, click Donate Now.

If you are unable to help financially but still wish to assist with my fundraising efforts, I’d be so appreciative. Please pass on my information to others or call or email me or Rebecca ([email protected] or 800.642.8399) to volunteer as we move forward with planning fundraising events.

It is my hope that I will receive a transplant, heal and return to teaching and activism. I have been active in the environmental, animal rights, and social justice movements for most of my life and my goal is to continue my efforts to make this world a better place for all living creatures.

Kelly, and our four legged ones (our three dogs and two adopted feral cats), and I are tremendously grateful for your positive thoughts, prayers, contributions, and help.

With kind regards and love,
Rowan Wolf
503.261.9488
[email protected]

Contributions are tax-deductible to the extent allowed by law. This campaign is administered by the HelpHOPELive, a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800.642.8399