Marks Surgery & Post-Op care

Hi, my name is Jessica and I am fundraising for my husband, Mark, and our family. Mark was diagnosed with CTEPH (Chronic thromboembolic pulmonary hypertension). He has extremely low blood flow to his lungs which is effecting his everyday functioning. Mark enjoys hiking and biking with our children and CTEPH makes it extremely difficult for him to participate in these activities. He is scheduled for major surgery at the end of September, where they will open his chest to remove scarring and blood clots. This surgery should allow him to begin enjoying these activities again and possibly allow him to get back to his career in archaeology which requires a lot of strength and exertion. During this time I will need to take off from work and travel to and from the hospital in Philadelphia to be with him and take care of our two little ones. Chris is in Kindergarten and Ellie attends daycare. With the cost of gas rising and the need me for me to travel up to 4 hours a day several times while Mark is in the hospital, we will need support to help us not get behind on our bills and to help provide daycare for Ellie as well as provide food for the kids. After surgery, Mark will not be able to drive for 4 weeks and he will not be able to lift more than the weight of 1 gallon for up to 3 months. With these restrictions he will not be able to begin working for at least 4 months post surgery. We appreciate any assistance to help us stay afloat during this challenging time.

UPDATE as of 10/14:

Mark was extubated on Monday 10/9. He intubated 3 times total. He was in the ICU for 15 days. He is doing well physically and is expected to be moved to a rehab facility this coming week to work on his regaining his physical. Mark has been struggling with his eye sight/function and the doctors think he has a condition called Mokri Syndrome which is a rare issue resulting from the body cooling and warming during surgery. While there is no known cure for this as it is relatively new, they are discussing testing medication to hopefully resolve this issue but it may not work. 

Mark will need 3-4 weeks at an in-patient rehab center and possibly additional physical therapy after this point to get back to his full normal physically. He may have a longer road/struggle if this diagnosis is correct. 

We are so profoundly grateful for all the support we have received from family, friends, friends of family and more! We ask you to continue to share our story. I have no idea what our future will entail as far as doctor’s appointments, travel needs and daycare needs and how this diagnosis will impact Mark and his life!

Update 2/2024:

First I want to say thank you again to everyone who has helped support Mark and our family so far! We could not have made it through his surgery and these past few months without your help. 

Here is what has happened since the last update in October. Mark had a stroke in December which effected us speech and made him a little weaker putting him back on his progress with physical rehab. His echocardiogram showed his heart has weakened with an ejection fraction rate of 20-25%. He left the hospital in 12/23 with a life vest on (a wearable external defibrillator). He continues with Physical Therapy and is now doing Speech Therapy as well. He saw an ENT in January. They confirmed there was damage from the re-intubations he had in September/October and his left vocal cord is paralyzed. He will be seeing a specialist hopefully soon to try to help his vocal cords but for now the speech therapist will do exercises with him. 

His vision has not returned and continues to pose daily challenges for him. We have an appointment at Penn Medicine to see if we can get any new options for his vision. We are also working to get him into the Vision Center in Berks county who can help him with social outings and social support groups with others who have visual impairments to lean on to help him adjust more. 

I have been doing my best to balance work both in the office and at home while taking care of our two little ones and helping Mark. Things have been challenging for us all. We are thankful for the support from family and friends! 

Any additional support is welcome and appreciated. It will support us taking care of some of the additional childcare needs we have due to the extra appointments and any supplies or things to support him and his continued rehabilitation.